Category Archives: gluten intolerance / dr. intolerance

Two years!

According to the gluten meter, today I’m two years gluten-free. !!!

ME: Wow, two years gluten-free!
HE: Wow. And you feel better?
ME: Yeah. Remember how bad I felt?
HE: I remember how bad I felt from all your whining!

It’s his loving support that’s gotten me through.

I’m not entirely healed, and I know I’m taking longer than a lot of people, but considering that I suffered all my life and had three horrible years before y’all diagnosed me (thank you thank you thank you), I expected it to take two to three years to be entirely well. Plus it took me too long to figure out that I’d developed intolerances to other foods. Live and learn, peeps.

24

I’ll get back on the Edward v. Jacob thing tomorrow. Until then, I blogged the 24 premiere at Snark Raving Mad. It’s not very funny due to my headache and also due to Jack’s not carrying a purse in the first two hours. I am actually having a hard time figuring out if this is a migraine or a tension headache. I think it’s both, and I’m baffled about the migraine part, because I’ve been really good about my diet. Anyway, due to said headache and previously unmentioned tiredness, I’m going to read Eclipse in bed until I fall asleep.

Nighty night.

Health update

My EEG is scheduled for this week. If it is clean (other than the slow left temporal lobe, which is most likely from a stroke I never knew about), I can wean the rest of the way off my seizure meds. I don’t have the tingles much except when I’ve forgotten to take my calcium and B-vitamins for several days in a row.

Garden of Life finally has a raw food multivitamin that is gluten-free. I bought a bottle to see if they’re any better than my Country Life raw food multi. Oh, and the ingredient list again had “malt diastase,” same as the horseshoe-zyme pills from the same company. So I looked it up, because the label says gluten-free. It turns out that malt diastase is an enzyme that helps you digest… wait for it… malt. So that’s apparently not what was making me sick when I was taking the horseshoe-zyme pills before.

I’ve started drinking two ounces of aloe vera juice every day. Sounds disgusting, but this particular brand (George’s, I think) tastes like water and is not slimy. It’s good for general healing, and since I would someday like to get over my lactose, egg, and corn sensitivities, I will try anything I can to quicken the healing.

Sprouts. The farmer’s market and supplement smorgasbord. I’d like one in Boise, plz kthx. Their papaya enzymes are better than the Now brand that I previously took (and will again someday take, because we do not have Sprouts, and I only bought two bottles). I also got a new probiotic for a specific issue there, but I can’t remember the name of it. It’s peachy, and I bought another general probiotic from the same brand. The Country Life probiotics weren’t doing it for me.

And here’s a piece of advice for you crazy kids out there: If you’re lactose intolerant, for the love of Pete, do not give in to your craving and eat a bowl of chocolate almond ice cream for dinner. I’m really glad I work at home in the afternoon.

Pain – it’s what’s for dinner

I have a full-blown migraine today, worse than I’ve had in months. It started when I woke up this morning and hasn’t let up, even after a nap of several hours. I’m so tempted to stay home from work tomorrow, considering that this is one of those stay-in-bed migraines, but I worry I might miss something, such as being laid off.

I tried to chop my finger off yesterday

It hurts.

In other news, I’m having muscle weakness in my right hand again. Yesterday morning in church, I couldn’t grip my pen very well, and my writing was all over the place. I had the same thing 2.5 years ago. That’s when Dr. Wonderful’s wife stuck needles in me to check my muscles and shocked me to check my nerves — everything was normal. No carpal tunnel, no nerve damage, no muscle deterioration. Dr. Wonderful did an MRI to look for MS. It was also negative.

In good health news, I’m down to 250 on the Keppra morning and night, and my tingles are still dramatically improved. I think they would be even less of a problem if I’d remember to take my B-complex and calcium supplements twice a day instead of once. (Before you lecture me about ODing on B vitamins, remember that I can’t absorb things as easily as other people, which is why I have low B-12 and ferritin to begin with.

Weaning

I went to the epileptologist today and saw his P.A. (whom I also saw last time). Check this out: I’ve lost five pounds since I was in there two months ago! I’ve lost an entire percentage point in my BMI. Hooray!

I guess the jogging torture is doing something.

Monday night I cut myself down to 500/250 on my Keppra, knowing that we’re weaning me off. Last time I was in there, they told me to stay on the 500/500 for at least a month, and it’s well past the month. I’m supposed to stay a week on 500/250, then do 250/250 for two weeks. After two weeks on 250/250, they want another EEG to make sure I’m not having any seizure activity (we expect that I won’t be). After EEG, I can wean the rest of the way off and maybe be done with my seizure meds by the end of November. In December, I’ll see the doc again, and maybe *then* I’ll get my undiagnosis.

I was a little disappointed to not be undiagnosed today, but I understand why the doc wants to be careful. (We need tort reform!)

I make me sick

Occasionally I take these digestive enzymes (Garden of Life omega-zyme, or horseshoe-zyme, as Frank calls it), mainly when I go out to eat to make sure I don’t get sick from the dairy that will almost surely make it into my food. The wheat is, believe it or not, easier to avoid than the dairy, and I’m always worried that they’ve brushed butter onto my meat before they cooked it, and I sometimes forget to tell them to leave the cheese off my salad. I pick it off, but the traces are what worry me. I’m thankfully not quite as sensitive to the dairy as I am to gluten, but I make sure I take enzymes with lactase just in case.

When I originally bought these particular enzymes, I pored over the main ingredients, the inactive ingredients, all that. I’ve noticed that every time I’ve used them, they haven’t necessarily helped me to not get sick, and in fact, I took some last week before eating some grilled chicken, and I had headaches for days, plus my brain fog and muscle and skin symptoms. I assumed that since the chicken was grilled, the grill must have been contaminated with gluten (beer, soy sauce, barbecue sauce) like our grill that we left in Florida was (I used to cook na’an on it).

Well today I took my enzymes, because I made a broccoli cheese casserole (what can I say, I’ve missed cheese). Right after I swallowed the enzymes, I noticed that one section of the ingredients list has two columns. I, um, never saw that before — I half think that the second column magically appeared to mess with my head. And I know you’ve already gotten to the big denouement, but I’ll tell you anyway. Yup. I glutened me. Right there in the second column, malt diastase is listed.

Awesome.

Yeah, I already have the headache and muscle aches. They came on lightning fast this time (gel-caps, of course). It seems that my symptoms come more quickly than ever. The only drawback to being off gluten for a long time is that when you do accidentally (or stupidly, in my case) have it, you get symptoms faster, and they linger much worse than they did before going gluten-free. I actually think it’s just that you notice them more, since you actually feel good most of the time, whereas before you just felt like a giant terdball all the time.

I’m off to bed. The brain fog is setting in, and I don’t think I can finish typing up the next volume of my gluten-free menu or rant about my not being chosen as the new American Idol judge or even riff on the ridiculous article this week that blamed Buffy the Vampire Slayer for women leaving the Church of England. Ooh, the tinglies just started, as did the electric tongue. You wish you were me, and you know it.

Toodaloo, mon peepsies.

I’m a gross, ugly witch

Bee stings hurt.

I went back for my follow-up with Dr. Super-Fantastico today. She’s being downgraded to Dr. Average for the time being. I was sitting in the exam room waiting for her to come in, and I actually heard her say, “Yeah, why don’t you go ahead and start with her, and I’ll come in later. I’m going to skip ahead to this other patient.” I was the patient being skipped, and considering that I was on time for my appointment, it did kinda annoy me. She sent in a PA student, bless her heart. I felt for the girl, she felt rather clueless. She did fine.

Long story short(ish, Kate P, short-ish), the homocysteine was normal and the MMA results aren’t in yet. Dr. Average did not check my calcium levels, but my vitamin D levels are good, and the two usually go up and down together. I did ask her about checking my calcium, and she kinda seemed disinterested in that and basically blew me off. She checks it on everyone else when she runs just a basic blood panel, but she didn’t check it on me, because we skipped the basic and went right to the specifics. The PA student told me that most people are well above 800 on the B-12, so 271 is lower than they usually see, even though it’s normal. Since the MMA results aren’t in, Dr. Average is considering it normal and doesn’t want to pursue a B-12 deficiency. She basically told me I can take a B-complex if I want, but she doesn’t think it will do anything. And then she had nothing to offer. I looked right at her. “So… you’re out of ideas? What about calcium?” She ignored that and asked if I’ve tried Prozac for the tingling. Prozac. When are doctors going to stop implying that I’m depressed? I’m chronically ill! You expect me to be yippy skippy when I walk into your office and you tell me you don’t know what to do about me and you act like you’ve given up after running one set of tests?! This is why depression is a symptom of most chronic illnesses. People get tired of being sick and tired of doctors asking if they’d just like some Prozac. I calmly and non-confrontationally told her that I’m not a fan of taking random meds just to see if they’ll work, don’t like meds in general, and I prefer to find out the root causes of my problems rather than just throw band-aids at them. She offered nothing, and I was stunned. Last appointment, she seemed so thorough and interested, and this time, she skipped ahead of me and ignored everything I said. She said they’ll keep checking for the MMA results, and we’ll see you in two months. For what? To go over the results of the additional tests you’re *not* running? Run my calcium or refer me to an endocrinologist. Please. Of course, I didn’t think to ask for the referral again until I was already out of downtown. I just left dejected and got weepy. Maybe I should have said yes please to the Prozac.

Oh, she also ignored that my lymphocyte count on my labs came back barely under the low end of normal. It’s bolded and starred on the report (yes, I did get a copy), and she didn’t even mention it.

Meanwhile, as the student PA and I had waited for Dr. Average to finish with the patient she’d skipped me for, PA student asked if there was anything else… I said, “Yeah. Do you know what this is?” I held up my index finger. It’s had this thing on it for over a year, a blistery-looking thing, and it drives me nuts. I’ve pulled it off, cut it off, and dug it out — all three of those give me the same results — lots of blood and a recurring thingy on my finger. It’s gross, and I always pick at it. Student PA looked at it and said, “Yeah, I think I do.” “Is it a wart?” I could barely choke out the words, but whatevs, maybe she could help me not be so gross anymore. “If you pick at it, do you get little black flecks?” Um, gross, and yes. “Then it’s a wart. We can freeze it off for you if you’d like.” Sure, why not. And ew. I have a wart. I’m the Wicked Witch of the Pacific Northwest.

When Dr. Average was back in the room, PA Student got to remove my wart. I felt so sorry for her. She shaved layers off at a time with a razorblade, and it didn’t hurt until she got down to the capillaries and I started bleeding. When they were sufficiently happy with the amount of blood pouring forth from my disgusting little friend, they got out the liquid nitrogen to freeze it so they could try to kill the virus. Did y’all know warts are caused by HPV? Me either. Ok, so they said that it would feel like a bee sting when they froze the wound. I’ve never been stung by a bee, so I was like, yeah, ok, go ahead. Holy crap. I don’t ever want to be stung by a bee. And they froze it three times. My finger still hurts. Hopefully soon I’ll have a normal finger.

What a day.

Hopeful. It’s hard to imagine using that word and really, truly meaning it with regards to my health problems. But I am fairly hopeful today.

I saw my epileptologist today; I had my appointment moved way up because they don’t give results over the phone, and I wasn’t willing to wait until the end of September to get my diagnosis (or undiagnosis). So they put me in with the PA, and the epileptologist and his shadowing med student came in halfway through the appointment.

I felt really, really bad for the PA. He was sporting a migraine, and by the way he was having a hard time finishing his sentences, I could tell it was a doozy. I’ve had many migraines just as debilitating, and I know that you simply cannot function. I don’t know how you even deal with patients in that state.

I briefly went over my medical history with him, the gluten trouble, all that. I made a point of mentioning that as soon as I stopped gluten, my migraines went away, and I only have one if I get glutened. He looked at me with wide eyes. “That is huge,” he said. I agreed. I gave him a brief overview of celiac and gluten intolerance and pointed out that over 50% of true celiacs have no GI symptoms at all. Later, as we ended the appointment, he told me that he’s going to keep celiac and gluten intolerance in mind for his other patients. I hope he is able to help at least some of them.

I told the PA about my appointment with Dr. Super-Fantastico and the labs coming back normal. Also told him I’d reduced my night dose of Keppra to 500 (from 1000) and that nothing has gotten worse, and if anything, the facial radiations and scalp tinglies have decreased. He left, and in a few minutes, the PA came back with the epileptologist and the shadowing med student.

EEG results are in. It is very unlikely that I have epilepsy. I am still reeling a little about the results, though. The EEG showed an abnormality, a slowing of brain activity in the left temporal lobe. My Florida EEG also showed an abnormality in the left temporal lobe, so that is consistent across two EEGs, so it was there in 2006 and is there in 2008. My doctor said it is non-specific, meaning it is not seizure-related and they don’t know the cause. It could be a tumor (but that is unlikely considering I’ve had an enhanced brain MRI and a full body MRI), I could have a brain injury from a hard hit to the head (I don’t remember any other than my normal klutzy head-hitting, but then again, I might not remember something that would injure my brain like that), or it’s possible I’ve had a stroke in the past. The only major accident I can think of is my big bike crash in 2002, the one that left me with a volleyball-sized thigh bruise — nay, contusion — that lingered for six months, but I don’t remember hitting my head on the pavement, only killing my right thigh, scarring up my right forearm in a nasty way, and taking a nice chunk out of my left knee. I was wearing a helmet, too. Stroke, on the other hand, seems pretty likely. Migraineurs have twice as much stroke risk as people who do not suffer migraines, and add in oral contraceptives (I was on them for eight years total), and the risk is multiplied by eight.

As a side note, I like what about.com says about when you should go to the ER:

*If you have the worst headache or Migraine of your life. Extreme head pain can be a symptom of a stroke.
*If you have a severe, unremitting Migraine for more than 72 hours, it is Status Migrainous, and you should call your doctor or go to the ER.

Lemme tell you, anytime you have a migraine headache, you have extreme head pain. I mean, there are dull migraines, but they still hurt. The big killer ones came very often for me before Ceri and others helped me find my poison in gluten. “If you have the worst headache or Migraine of your life” describes many headaches for me. I remember when I first had them, I had been having them for a couple of months and was living at my apartment in Bedford, working for the CPA firm in Fort Worth. I had one spell where I didn’t get out of bed except for peeing and small amounts of food and water for a good three days, because I was in so much pain. That was the worst one. There were many that made me cry, but that killer was during the period when I had to wear sunglasses indoors at midnight. I wasn’t yet used to the headaches, and I felt tortured.

So yeah, I can see stroke as a possibility for my slow left temporal lobe.

Oh, and the EEG report that suggested the epilepsy in the first place? The person who wrote the report said my left temporal lobe slowing was consistent with what boils down to hypotension-triggered-seizures. I said, “Wait, does that say my low blood pressure triggers seizures?” Yep, that’s what it says. My doc thought it was “cute.”

I mentioned the normal blood tests to the epileptologist and that Dr. Super-Fantastico had thought B-12 could be the culprit on the tinglies. He asked if I knew where in the normal range I was, and no, I have that appointment Thursday. So they got on the phone with Dr. Super-Fantastico’s office to ask them to fax over the lab results. Meanwhile, he explained to me that if the B-12 is in the normal range, but low in the normal range, and if my — hang on, they wrote it down for me — homocysteine and methylmalonic acid (MMA) levels are elevated, then I would still have a functional B-12 deficiency. The labs came in, and their eyes got all big, and they all hovered. Dr. Epilepsy (who is actually Dr. Wechsler) said that anything below 350 is in the danger zone for B-12 deficiency, and I’m at 271. I smiled big and got all high-school-giddy. “Really? That would be so great!”

So here’s what we’re doing. He wrote up the order for the homocysteine and MMA blood tests (I went straight to the hospital and dropped off some blood for that), and we’re decreasing my Keppra. They’re going to monitor me closely over the next two months. I drop my Keppra by 250mg for six days, then by another 250 for three weeks. Meanwhile, he’s hoping the bloodwork will be done in time for my appointment with Dr. Super-Fantastico this week, and he’s going to send it to her as soon as he has it. If it does show a mild B-12 deficiency, Dr. S-F would be the one to do the B-12 shots for me. I get the B-12 shots, and in a month, I call Dr. Epilepsy to tell him if I’m feeling better and having fewer tinglies. If I start to get worse with the lowering of the Keppra, I come in right away to see him. I see him again in two months, and if I’m feeling better and the B-12 is helping, then he can un-diagnose me with epilepsy.

We’ll see. If the new blood work shows elevated levels, I’m going to ask Dr. Super-Fantastico if I should see a cardiologist. I don’t like the whole possibility of stroke thing, and elevated homocysteine sounds like a possible risk factor for heart disease, stroke, all that fun stuff. BUT, and this is for my mother, who is probably “stroking out,” as she is wont to say in these situations, the B-12 deficiency would be the cause of the elevated homocysteine, and the gluten intolerance would be the cause of my B-12 deficiency. I’ve only had the symptoms of B-12 deficiency for two years and the GI for four, so no need to stroke out over this just yet, Ma.

I’ll keep you posted. It’s what I do.

Bang head against wall. Rinse. Repeat.

My labs came back normal. I have my follow-up next week, and I guess we keep looking.

I take back everything I ever said about chick doctors.

Which will make Kimmy happy, since she is one… or is going to be one… I never know what they’re called when they’re doing rotations.

Anyway, this isn’t about Kimmy, it’s about ME (isn’t everything?) and about my awesome new girl doctor. It’s no secret around here that I do not see chick doctors. Yep, I’m prejudiced against them because all of the girl medical professionals I’ve ever met were of the “well, I made it through med school with the big boys so here, have a harsher-than-necessary pap and a smile” variety. That and because when I finally got over myself and went to a female doctor, she turned out to be an appointment-missing quack who put me on unnecessary hormone shots for six months.

But again I decided to get over myself; after all, most everyone is nice in Boise, so maybe there’s hope for the girl doctors. Plus, you should see my insurance list. 4000 girl doctors to every 1 guy doctor, it seems.

I finally asked my church peeps for a recommendation, and one of the girls gave me a couple. The first one she mentioned is Dr. Ashley Davis, hereafter to be known as Dr… Crap. No, she’ll not be known as Dr. Crap. I mean, crap. I’ve already used Dr. Wonderful and Dr. Awesome… Oh! I know. Dr. Super-Fantastico. Anyway, my friend at church told me that she’s big into the celiac thing and really gets gluten intolerance. Done a lot of studying on it, celiac is her BFF, all that. So I figured she’s my best shot at an understanding doctor.

I knew I was going to like her before I ever met her. Walking down the hall toward her office, there was a big old Texas Longhorns poster right next to the sign pointing people to her office. Being that the majority of transplants here are from California, a Longhorn was a welcome warm fuzzy.

Her nurse weighed me (that reminds me, I really do need to tell y’all about the falling out I had with Mr. Wii Fit a few weeks ago, but that’s another sad sad story for another time), and that was depressing, but I already knew it was coming because my neuro’s office weighed me last week. 164. Yes, I know, I’m supposed to be in the 140s now, but there’s a story behind it, really. Okay, so fine, whatever, I’m a cow. Blood pressure high for me (128/86, I think, and I’m normally 96/68).

The waiting for her to come in and see me seemed interminable. Normally I am totally cool with the waiting at the doctor’s office, because hey, I’m not the only sick person in the world, and plus, it’s quiet, and you can put me anywhere with an iPod and a book, and I’m good. But knowing that she’s big on the celiac kick, I could not *wait* to meet Dr. Super-Fantastico. I was so antsy and hopefully anticipatory.

She finally came in, and I knew I would adore her. She was in long shorts and a tank top. No stuffy lab coat, no pretense, just hey, what’s up, I’m your new doctor. Sweet. She ignored that the main reason for my appointment was to get a referral to an endo (you have to put down your #1 reason, and if she can get to your #2 reason in your allotted time, consider yourself lucky, so I had to choose, and being that my meds are almost out, I put down the referral as #1) and skipped right to where I put down that I have the tinglies. She said, “I already have one blood test I want to run for you.” Coolio. She asked how I found out about her, and blah blah blah, since you’re big with the celiac, I think you’ll be the doctor who will understand me best. She perked up. “Why? Are you celiac?” Well, it’s complicated, innit? I explained the negative bloodwork, negative biopsy, and all of my symptoms (actually, I think I missed mentioning several symptoms, because I didn’t feel the need to prove to her that yes, I do have celiac or gluten intolerance, because she was already taking me seriously, and I wasn’t on the defensive). By the time we’d even gotten to the possibly-misdiagnosed epilepsy, she told me she thinks I’m celiac. I told her about the negative DQ2/DQ8, which technically doesn’t rule out celiac, just gives me a <1% chance of being true celiac. So she said that at the very least I’m gluten intolerant. I agree! She also asked if I’d considered having my poo tested. I have considered it, yes; studied Enterolab‘s whole website a while back. In fact, if I’d known about them pre-gluten challenge, I would have sent them my poo first instead of making myself sick on sweet, sweet Totino’s pizzas. We talked about Dr. Ford, one of the big experts in gluten intolerance and celiac, and she pointed me to his two-minute YouTube video about how gluten makes people sick. That video is wacky, you should watch it. Gave me a good morning laugh. Everything he says is true, but it is way oversimplified so doctors can understand it ;-) and the prop demonstrations are comedy gold.

About the tinglies and the electrical shocks. It sounds like she thinks my electrical shocks are due to the pinched nerve in my low back (L4-L5), and now that I’ve read more about it, I can agree with that. It’s just that my electrical shocks never happen when I’m not having the major tinglies in other parts of the body. But that can be coincidence. I don’t buy that my hoo-hah tinglies have anything to do with my back. I just can’t see that, because the electric shocks in my right leg are one-sided, and my hoo-hah is right in the center. I know, that’s dumb logic there, but who wants to believe that they get random tinglies in The Hah because they somehow jammed up their lower back? Not me.

The tinglies are a different affair. She went straight to vitamin deficiencies first and decided to take a gallon of blood to run several different vitamin serums, and I was so hoping she would do that. She asked me more about symptoms, and — this was my favorite part — she asked if I have Reynaud’s. She didn’t ask, “Do your fingers lose their circulation and turn colors when you get too hot or cold?” She asked, “Do you have Reynaud’s?” Just totally assumed I’d know what that meant, and I did. “No… I don’t think so. I mean, sometimes when it’s really cold, I kinda think my fingernails are a little blue, but then I realize that’s just because I know it’s out there, and I’m imagining that I have it, but I’m pretty sure I don’t.” “Your fingers would turn white first, then blue, and go numb.” “Nope, I don’t have that one.” I LOVE when doctors respect that you’ve done your research and talk to you as if you have.

She talked about B-12 levels. My mom will love this, because she used to torture me when I’d visit relatives by making me get B-12 shots, and I would hate her and all of my aunts for it. And then I became an adult and was allowed to say “Get that needle away from me, or I will jam it in your eye.” Anyway, low B-12 can cause neuropathies and paresthesias, so she’s checking that. And because of the gluten intolerance and lactose intolerance and the fact that most fortified foods are off my list, she said I need to have vitamin levels checked regularly, because it’s harder for me to get everything I need from my food. I agree, and I feel like an idiot for not having it done sooner. And then she amplified her celiac cred even more. She has patients who have celiac with normal B-12 levels, but they still have the tinglies. So she just called up Dr. Green and asked him how that was possible. I was like, “Oh, I’ve read his book twice!” and she was all, “I’m thinking I’m going to read it again myself!” Anyway, Dr. Green pointed out that gluten can cause nerve damage in celiac patients. That part kind of sucked, because if my B-12 is normal, then that means the tinglies could be permanent. But it also makes complete sense, because your gut is basically your other brain. Then again, I had the nerve conduction studies last year, and at least in my arms and legs, they found that my nerves were really good at feeling the pain of electroshock therapy. But again, they didn’t shock me in my face, head, tongue, or Hah.

She asked if I have symptoms of low vitamin K. I explained some of my low K symptoms, with the bruising and all that — it’s much better now than it was, but I still bruise easier than I should. “Do you get nosebleeds?” “Well, my nose bleeds every time I blow it.” “Oh, just every time?” And when we talked about A and D, I was like, “Which one is it that gives you bumps on your upper arms if you’re low? I have that. And also, before gluten-free, I had lots of bladder and kidney infections, but those cleared up with going gluten-free and taking a vitamin A every day.” She listened to everything and wrote it all down.

What else… We talked about autoimmunes and the increased risk for others once you have one…

Anyway. She’s running panels for A, D, E, K, B-12, kidney functions (to see if the anticonvulsants are affecting my kidneys), and some other stuff. And she said she can handle my thyroid stuff as long as it’s just hypothyroid, so she wrote my scrip for that and is running the thyroid bloodwork to see how my thyroid is doing.

She’s on vacation next week (I said, “What is it with doctors thinking they need to take vacations like real people?”), but at least she told me so. I see her again in two weeks to go over my results. She stood to leave, and I refrained from saying what I was thinking. “You’re the only girl doctor I’ve ever liked! I’m so glad you were recommended to me! Do you wanna be BFFs? You complete me!” Instead I thanked her and shook her hand.

Her nurse came in to drain me like Angelus after pure bliss — took five tubes of blood right there in the office. That was nice, because in Florida, you always had to go to the blood labs for blood. My doc in the Metroplex had a lab right in his office, but I hadn’t seen it like that since then — I guess Boise is just more advanced than Florida.

Oh, you know what? That needle sticking in your vein hurts more if you watch. It’s like magic, the way the pain intensifies.

When doctors go on vacay

So I went for the EEG on Friday, the one to determine whether I actually do have epilepsy. My biggest concern is that if it’s not epilepsy, I’d like to know just what *is* causing my episodes, because they get freakier and freakier by the day. My second biggest concern is that I’ve been on anticonvulsants for over two years, and I’d like to not take unnecessary meds for a second longer.

I called the doc on Monday, because waiting is not the forte in the brain of the SarahK. I was informed that the doctor only reads the EEGs and EEG reports on Fridays, and since I’d had my EEG on Friday, my report wouldn’t be available until this coming Friday (tomorrow). Okay, I can wait until then. Oh, but the doctor went on vacation Tuesday for ten days. When he gets back, he’ll have to wait until the following Friday to read the results, because, again, he only reads his results on Fridays. So basically his assistant told me I would be waiting three weeks for my results. Awesome.

I get that he’s the epileptologist, and since he’s the big freaky brain-waves expert, he wants to make sure he’s the one to read everything, I do get that. But I’m also thinking that since my report was available to him on Friday, the same day I took the test, he could have done one of two things: read the report Friday afternoon or Monday, or coordinate with another neuro to read his patients’ test results in case they call in his absence. As someone waiting on pins and needles (and feeling pins and needles all over my body), I don’t think it’s too much to hope for. If he read the results differently when he returned, he could call and tell me that he disagrees and all that.

Oh, then his assistant told me that he’ll go over my results with me at my follow-up appointment. That’s great, but my follow-up isn’t until September, and considering that the good doctor made it clear that he thinks there is .0000001% chance that I have a seizure disorder, I don’t want to be on meds for another month or six weeks while I’m waiting for him to tell me that, yes, I should get off the unnecessary meds.

Bah.

I’ve started researching again, because he’s pretty much got me convinced that it’s something else. Also because of the freakish ramping up of symptoms this week. I sometimes get these electrical pops (harsh ones) in my right thigh while walking. Only occasionally, but it freaks me out when it happens, because my tingly symptoms are at their worst then. So yesterday evening, I was walking to the kitchen at work to grab something off the printer, and I felt the electrical pop. Ow, fine, nothing new. A few steps later, I felt the same type of shock from mid-calf all the way down to my ankle. And every time I moved my foot yesterday evening, I felt the same shock. It finally went away after Bible study, but it was back today. That stuff? That makes me lose my mind a little.

Anyway, the research has turned up some good possibilities. Bad ones, too, of course. MS, but an MRI two years ago came up empty in that respect, and I’m so grateful for that. It’s also possible that it was there and the radiologist missed it. The other thing that keeps coming up is a calcium deficiency. Makes sense. Things seem to have gotten worse with the tinglies since I quit dairy again in March. And then since we thought these were seizures, Dr. Wonderful upped my dose and told me to get my butt to a new neuro STAT. And they’ve gotten worse since the increased dose of seizure meds, and as it turns out, calcium deficiency can be exacerbated by anticonvulsants. Vicious circle I’ve got myself in, no? Calcium deficiency also makes sense, because it could be caused by another autoimmune. Hypoparathyroidism can be an underlying cause of calcium deficiency, and considering I’ve got a thyroid issue and celiac (diagnosed, undiagnosed, either way my intolerance of gluten is autoimmune), it could follow that my parathyroid glands could be compromised by autoimmune issues. When a person has one autoimmune disease, there is a 40% chance of developing a second autoimmune. GI/celiac = 1. Thyroid could be #2. Parathyroid #3? Wouldn’t surprise me. Not to mention that four years of malabsorption has seriously compromised the balance of minerals and vitamins in my body.

And honestly, it would be the best news. Calcium supplements for the rest of my life would be likely, but it’s so much better than the prospect of MS or living with epilepsy.

I have an appointment with a family practitioner Monday. One, I need a referral to an endocrinologist. Two, I’m not waiting three weeks to jump on this. I’ve already started cutting down my anticonvulsant dose; no, I didn’t consult a doctor, because he’s on vacation. I cut my nighttime dose in half and am still taking the same morning dose. I’ll do that for a few weeks, and maybe by then I’ll have found out about the epilepsy. Anyway, I normally avoid family practices like the plague (namely because with all the little snot-nosed kids running around, it’s likely I’ll actually contract the plague on a routine doctor visit). I actually decided to see this one because a girl at church recommended her. She (the doctor) has a daughter who was recently diagnosed with celiac, and she’s apparently researched the crap out of it, just like me. So I’m thinking when I suggest calcium deficiency, she won’t balk and wave me off; she’ll probably think it’s likely and send me for the serum tests to confirm.

So that’s the update.

Tripping on hyperventilation

If I ever decide I want to Trip on Tulips, I’ll just hyperventilate for three minutes with my eyes closed.

I had my EEG Friday afternoon at St. Luke’s in Meridian. Other than all the torture tests they put me through, it was really rather pleasant. At my last EEG, the woman was sitting in the room with me, and the monitor was right next to my head. At this one, I was in a comfy recliner with the lights completely out, and the EEG girl was in the room next door. Made for a nice short nap.

The thing I love most about the EEGs is all the stuff they do to your scalp. They measure your head, mark different spots according to the measurements, and then scrub those little spots with a soap that must be full of cayenne pepper, because it burns a little (only for a few minutes). Then they go through and put gritty goop on the same spots — feels like some kind of gel mixed with baking soda. They stick all the electrodes to the goop and wrap your head in a towel so the electrodes don’t peel themselves off.

So the EEG girl (who does those? Radiologists? Brain specialists? I don’t know.) got my head ready, reclined my chair, gave me a pillow, turned out the lights, and left the room. She came on over a speaker and told me to open my eyes, close my eyes, open my eyes, close my eyes. Then it was time for mandatory hyperventilation. That part is always fun. You have to keep your eyes closed and breathe in and out deeply for three minutes. In through the mouth, out through the mouth. Try it for thirty seconds — it’s harder than it sounds. Your throat gets dry, you want water, and you really need to swallow, but you can’t, because what if you screw up the EEG because you couldn’t handle the breathing part of the drill? I did fine during the hyperventilation, just concentrated on *not* breathing through my nose. And then the hyperventilation ended. Invisible Voice Girl told me I could breathe normally again and relax, because I would get to nap for the next fifteen or so minutes. My eyes were still closed, and I decided I would take advantage of naptime. As I settled in, something really funky happened. First I started seeing my own face slowly transform from Normal SarahK Face to Comic Book SarahK Face, which I didn’t know existed. As I watched myself morph, a new player came onto the screen: Comic Book Monster. I assume that at some later point, Comic Book SarahK Face would face off with Comic Book Monster, but I can’t be sure, because the pictures stopped. Then began the Purple Windshield Wipers. Bright vivid purple started washing over my eyes in the motion that your windshield wipers move the rain off your windshield, except these wipers started at the tops of my eyelids and moved in downward motions. Fuh-reaky. I watched the color show for a minute or so, and then I was done. Asleep.

Invisible Voice Girl came in and put the strobe light in front of my face. My eyes were still closed, and she went in the other room and did several minutes of light show for me, trying to trigger seizures. After that test was over, she watched my brain for another minute or two and then came in to tell me I was all done.

I spent the rest of the day at work, occasionally picking crusty goop out of my hair.

If my doctor doesn’t call with results today, I’ll call him. I don’t like all this waiting.

More thoughts on the same

So here’s the deal. It all comes down to money and gambling. That part of it makes me crazy. I’m not a gambler, period. I don’t gamble unless it’s casino night at work and they give you chips to play with and it’s all fake and there is no real money involved. But that’s really what this medical thing is, gambling.

Money. EEG, I can afford the 20% copay, no problem. The study is a three day to week long stay in the hospital. I have a 20% copay for the hospital stay, 20% on inpatient doctor care, and 20% on labs & diagnostics. My out-of-pocket max is $3,000, and I’m thinking Brain Tivo plus room plus doctor is going to put me over my $3,000 max. So I pay $3,000 for that, and that makes everything a little easier to determine. Except that it’s a gamble.

I’m scheduled for an EEG, and the records have been requested from Dr. Wonderful. If I do the EEG this week and it turns out I do have epilepsy, then we tinker with meds and such. And still possibly do the epilepsy study in a few months if I don’t respond as well to med tinkering as I should.

This is the part that didn’t click with me yesterday: If I don’t have epilepsy, we start back at square one, whether I do the EEG this week or wait for the Brain Tivo. Why the tingles, the weird sensation, the harsh electrical pops in my thighs during some episodes (and *only* during episodes, never independent). And if we start back at square one, that means MRIs, etc… more money. I miss our Florida health insurance, where MRIs were $75.

This part didn’t click with me yesterday evening as I tried to digest it all. If I don’t do the EEG and I do the study and it turns out to not be epilepsy, that means I’ve wasted my $3K on impatience, because that’s what it comes down to, isn’t it? I don’t want to go through months of tests, so let’s get it all out of the way, and oh by the way, if I’d just had that EEG I wouldn’t have needed the hospital stay at all and I could have just gotten that D-SLR I had my eye on.

So I’m on the fence. Now the options look like this:

Option 1. Spend a small amount of money for an EEG now. Find out I don’t have epilepsy. Go through additional tests to eliminate everything except migraine, which we know I have.

Option 2. Spend a small amount of money for an EEG now. Find out that epilepsy is a good diagnosis. Do the $3,000 Brain Tivo study anyway to find out why my seizures are so unusual and how to properly treat them. Possibly have additional tests.

Option 3. Spend $3,000 for the Brain Tivo hospital stay. Find out I don’t have epilepsy and just wasted $3K. Go through additional tests to eliminate everything except migraine, which we know I have.

Option 4. Spend $3,000 for the Brain Tivo hospital stay. Find out that epilepsy is a good diagnosis, only now we know why my seizures are so unusual and how to properly treat them.

Looking at it that way, I’m leaning toward getting the EEG this week and then setting up the study if epilepsy is confirmed.

Ack. I hate being a grownup and having to make grownup decisions.

Oh, I forgot to mention. The doc was talking about triggering my seizures during the Brain Tivo. I said, “Just give me a piece of bread.” He laughed. “Yeah, you can eat a piece of bread and wash it down with a beer.” “Yep, that’ll do it.” Don’t worry, I’m not going to do either of those things. I hope he knew I was kidding. Beer’s gross and glutenous.

Here we go again

Y’all get to help me make a decision: week in the hospital or more med tinkering, months of tests, etc.?

So I saw my new neurologist today. He didn’t have any of my records, so he had to go on what I could tell him (which was quite a lot — he hardly stopped typing his notes the whole time he was in with me). I puzzled him.

Gotta tell ya. Being the puzzle for the doctors? Getting old. Wow, that was three sentence fragments right in a row.

So this doc specializes in epilepsy and seizure disorders, and I puzzled him. Studied at Barrows in Phoenix and then did his epilepsy fellowship at Stanford for two years. And I make no sense, medically. The way I describe my seizures (or whatever they are, as it’s possible they’re not seizures at all) sounds nothing like any known seizure disorder.

He questioned me. I let him lead, because he was kind and didn’t talk down to me.

After I told him all I could think to tell him from all of his questions, he asked me if I’d ever had an MRI. Oh yes, lots. Actually, two related to the brain, and the one I didn’t mention was the one my primary sent me for when he stuck an ear-looky-thingy in my ear and I yelped in pain from a light touch. I told the doc today that I had the MRI in late 2006 or early 2007 (it all runs together, though my archives probably have a decent timeline), and that Dr. Wonderful (who, don’t get me wrong, is still Dr. Wonderful, whether he diagnosed me correctly or not) had been looking for MS but found no plaques on my spinal cord. I forgot to mention that he did find the L4 to L5 pinched nerve, but I tend to only think of that when my low back aches, such as at this moment. Anyway, new doc said that was where he was going, because MS would fit fairly well, except that if you have an MS flareup, the symptoms come and stay awhile, they don’t come intermittently as mine do, so MS doesn’t fit so well after all.

I told him about my triggers. Stress, lack of sleep, more than one glass of wine can do it, gluten, dairy. Gluten is the harshest trigger and causes the worst episodes.

I told him how the whatevers manifest. The tingling all over my body, burning in my toes, ear lobes, and fingers. I even have episodes where my scalp will suddenly light up. It feels like electricity is radiating from one spot, outward in all directions, almost like someone is pouring water on my head. They don’t always start in the same place. That is apparently not textbook for seizures.

Yet he’s baffled, because the Keppra has worked pretty well, and while many anticonvulsants and antiepileptics also work great as antidepressants and antianxiety meds, Keppra only does its magics on seizures.

He said he can rule out a spinal cord cause, because most of my episodes manifest above the spinal cord (hoo-hah tingles notwithstanding), in my face and head. Also probably not the nerves, since those would be burning sensations around the nerves rather than tingling sensations wherever. Plus, Dr. Wonderful’s wife did those horrible nerve conduction tests last year, where she zapped me over and over just to make sure I could feel pain in all my nerves, and yes, oh yes, I could feel the pain. Followed by the EMG, where she stuck me with needles all over my body while telling me to relax and keep still and apologizing for all the torture.

Which leaves the brain. And then the doc explained why the brain thing doesn’t make sense. But then why does the Keppra help me, he wonders. You know how it is — you write down all the important stuff so you remember to tell him, and then you leave the piece of paper on your desk at work or in the car, and your brain doesn’t function properly when you’re sitting in front of him, perhaps so you can drive home the notion to him that yes, my brain has issues. So I forgot to mention that when I’m having lots of the episodes, I get all ragey and irrational (a definite symptom of epilepsy), and the episodes make me really tired.

We talked about migraine. I had the headaches for three years straight, hardly a day without one, kind of just one continuous pain party. I told him that I pretty much only get the migraines if I’ve had gluten or dairy. He started the sentence about how even doctors sometimes don’t realize that… I finished it for him. “Sometimes there’s no headache with migraine.” He seemed pleased that I knew that. So he’s playing with the possibility that the seizures are not seizures at all, that they’re manifestations of migraine. If I have to choose, I pick the pulsing, buzzing, and tingling migraines over the crushing death grip migraines. And it would be kinda nice if that’s what this is, because that would be one less med, and I could take the Excedrin Migraine more often when needed, because I wouldn’t have to worry about triggering seizures. I’d just worry about triggering more migraines, but the painless kind. That’s another thing, though. If I have the Excedrin, I start having the seizures about a half hour after taking it. I’ve assumed it’s because of the healthy dose of caffeine. Ooh! I could have caffeine if this turns out to not be epilepsy!

Long, rambling story short (and I do apologize for the ramble, but I came down with one of those death grip migraines right about dinner time, and it’s not letting up any time soon), I have two options.

Option 1. He’s given me a choice of meds that I can add to the Keppra. If the chosen med helps in a big way, he weans me off the Keppra. If it doesn’t help, we may have to go to Option 2 later anyway. Meanwhile, he gets my records from Florida, reads the EEG report and hopefully gets to see the actual EEG scribbles. Also, he runs his own EEG. Compares the two to see what we’ve got going on.

Option 2. Epilepsy study at the hospital. Which means a full week in the hospital, possibly cut down to three or four days, the entire time hooked up to an EEG Tivo where they can watch all my little brainwaves in all the different sitches. Did I say sitches? Help me. Day one, they’re recording my neurons in their natural habitat, as is, with the Keppra and all that. Day two, I’m hooked up to an IV, just in case what they do next causes a big ol’ honkin’ seizure. Because day two, they take me off the Keppra cold turkey and record all the activity. Sleep deprived, strobe lights, hyperventilating, they do all that. When they’ve studied enough of my brain pan, they either put me back on the meds or they don’t.

So it’s my choice, talk it over with your husband and let me know. What do I do? I’m kind of leaning toward the hospital thing, because tinkering with meds? Never fun. Also, no sense drawing it out if we don’t have to.

Anyway, I’d appreciate the input.

So many

Oh yes, this will be WTMI. It’s one of those dumb health posts y’all hate, but this is where I track my small intestine’s progress, so what can you do? If you want something more interesting and less graphic, you can jump over to SRM! and see my thoughts on sci-fi and fantasy.

So many rants are fully formed in my head. The news is making my noggin bleed purple fury. Supreme Court says child molestation isn’t all that bad (how much do I love Scalia and his scathing dissensions? Let me count the heart flutters.). Morons say it’s okay to poke fun at presidential candidates as long as they’re not black, which is totally retarded. And I have a ton of pictures to post and lots of thoughts on how World War II would have been a disastrous loss if we’d have had it today with our anti-American media.

But you know what keeps me from doing all of that?

Celiac. No, no, I’m not blaming celiac for my lack of blogging, and I’m not all woe is me for having celiac (it was actually the best diagnosis I could have wished for, honestly). I’m blaming the IBS that comes along with celiac, that comes along with identifying even more things besides wheat that apparently constipate you for years on end until you think that there’s no way you will ever be able to poo again. For pete’s sake, all you really want is to be able to drop the kids off in the pool, but they’re just hanging out in your most un-motile small intestine, waiting for you to drink a whole carton of heavy cream so they can skate on down.

So I’ve been listening to my body more lately. I know that wheat stops me up, and dairy runs right through me, taking everything else along with it. Corn has the same effect as dairy. I didn’t think I had much, if any, of an egg sensitivity, but yeah, I’ve noticed that when I have eggs, whether boiled or scrambled or baked in a loaf of bread, I’m at least as constipated as when I eat wheat. But so far that’s the only symptom I’ve noticed with eggs — no seizures, no migraines that I’ve picked up on, no whole-body inflammation, no skin that screams when you touch it. Like comes with the wheat, dairy, and corn. But after three days of no-going, I’m staying as far away from eggs as I can, at least until my intestine is healed.

You know, they say it can take six months to heal. It can also take two to three years. I’m guessing I’ll fall in somewhere around the three years. I had the migraines and diarrhea for three years before going gluten-free, and two years in was when I developed the epilepsy, muscle pain, nerve pain, and skin tenderness. So I think I’m still in for a long haul before I can even try dairy again (have I mentioned how much I crave cheese now? Much.). That is, except when the discomfort and pain of not being able to doooo anything makes me resort to drastic measures, as I did today. Yep. I know that tomorrow I will have seizures, migraine, inflamed body, etc., but if I’m able to get a little relief, it will be worth it. I ate cheese on my avocado chicken wasabi orange salad tonight. A decent helping of cheese, at that. Colby Jack. It was so good. My only regret is that I didn’t have shredded parmesan on hand when I resorted to my drastic poo-helping measures.

I know I’ve said it before, but I’ve missed cheese more than anything I’ve given up. All other dairy is replaceable with something that tastes better. But cheese can only be replaced by more cheese. Pizza? Bah. Give me a broccoli salad topped with parmesan, Chebe rolls with parmesan baked inside… cheese inside a chicken chimichanga…

Ok, I have to stop now, because I made myself promise that the cheese tonight was for emergency purposes only and that I wouldn’t have any more. And there’s a giant block of it in the fridge calling my name.

Anniversary

Reader Dan emailed yesterday morning to congratulate me on a year of gluten-freeness. I’m glad he did, or I probably would have missed the milestone (like I miss every single blogiversary).

Wow. A whole year. About ten months of that has also been dairy-free. Man, do I miss cheese. Actually, that is the only thing I miss of the things I’ve given up. Okay, also the flour tortillas from Rosa’s, but we don’t have a Rosa’s here, so no big. And Fiery Habanero Doritos. Everything else is replaceable with better-tasting food (including, holy cow, the donuts we had the last three mornings). I haven’t talked much about this, but I’m still having occasional setbacks. I’ve started cutting way down on eggs and trying to cut out corn completely, at least in kernel form. I hardly have any corn syrup in my diet as it is. At least for baking, I can use egg replacer, but there is no replacement for egg salad or deviled eggs or tostada shells. It’s okay, though — if I start healing faster then I’ll be able to add everything but gluten back into my diet sooner rather than later. I love corn so so much, and occasionally I crave deviled eggs with all the urgency I own, but it’s only temporary.

Anyway. I feel worlds better than I felt a year ago. And four years ago, when I couldn’t even get out of bed from the migraines. And three years ago, when the fatigue was starting to settle in… Yeah, I’m much better now. Still have some healing to do, but I’m not complaining.

Something I never thought Id hear him say

“We’re gonna need more quinoa.”

Warms my heart, peeps. I’ve actually found a healthy whole grain that Frank likes. He’s not crazy about brown rice, which I love for its nutty taste and its whole, healthy graininess. So I cooked whole quinoa a while back and was astonished that he liked it so well. This week, we had a green curry for dinner one night (he cooked it!), and Frank soaked the quinoa for me all day (because it’s healthier soaked) so we could eat it with dinner. Friday night I made chicken tikka masala, and I served that over quinoa. As we ate Friday night, I heard these words come out of his mouth: “I’m really liking this quinoa.”

Well then. I know what our grain of choice is around here.

sometimes I really want a cracker

Almost right after I ate lunch today, I was under the thumb of some major nausea. I ate something I’ve eaten several times, then had some hot tea that I’ve had several times, and I was severely nauseated the rest of the afternoon. At one point, I even went to the bathroom and just hung my head over the toilet in hopes that I would throw up and feel better. Alas, my food stayed inside.

On my way home from work, I just wanted some soda and crackers. And then I remembered I can’t eat crackers, at least not the kind that make you feel better when you have an icky stomach. That made me sad — I rarely get sad about gluten anymore, because I avoid the Totino’s pizza aisle. I came home and rifled through the cabinets and finally I found what I needed: gluten-free olive oil & garlic croutons. Thanks so much, Gluten-Free Pantry!

I downed a whole bag of those suckers. There is nothing like stale seasoned bread to calm a stomach. I’m much better now.

better than all the alternatives

Some days I’m amazed at how many diseases I researched before you, my dear readers, told me about celiac. I went through more than three years of doctors giving me band-aid drugs for my many symptoms while begging someone, just anyone, to try to connect the dots. The M.D.s didn’t connect the dots, so I spent so much time researching, blogging about my symptoms, digging around, and noticing my symptoms in other people. Oh, she’s been diagnosed with Lupus! It would be a horrible thing to have, but more than anything I just want a diagnosis! Please let it be Lupus. My symptoms are so similar. Yeah, Lupus was a big one for me.

Then there was Lyme disease. Hey, remember that one day when I had a painful burning rash from my ankles to my knees when we went to Epcot with the Pieras? It wasn’t a bullseye, but maybe, just maybe… it could be Lyme disease. That’s so much better than Lupus! Doesn’t require a lifetime of meds or anything!

At one point, I was convinced that I had lead poisoning. The house I’d lived in in Amarillo was old (really really old) with peeling paint on the walls, and the pipes had never been replaced. Maybe I’d been poisoned by showering in the water there. Or eating the peeling paint in my sleep. I could get intravenous chelation therapy or even look into oral chelation, and I’d be on the road to good health.

I think the saddest thing is that at one point, I actually prayed I would be diagnosed with MS. Those symptoms fit so well, especially when I started having the seizures in my hoo-hah. I did not want MS at all, but I really wanted any diagnosis, even if it meant injections and a degenerative nerve and muscle disease…

Every time someone asks me what I can and can’t eat (this happened at work today after we all ordered lunch from Goodwood Barbecue, and I had called and talked to the kitchen to be absolutely sure about what I could eat), I happily tell them. And I always assure them (after their looks of pity or *wow*) that it’s really not bad. I name for them all the things I can safely eat and emphasize that basically I have to be ultra-careful at restaurants and stay away from prepackaged foods. I tell them how wonderful it is to eat foods prepared from fresh vegetables, fruits, and herbs. How good the food tastes, especially the brown rice pasta and the fresh homemade bread. And I think of you. You and my blog and how thankful I am that I opened up and blogged about all of my insane symptoms. And how you helped me to start recovering.

Mwah. Y’all are the best.

health update

This is more for purposes of being able to track what’s going on with me. Nothing to see here.
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overtime

We’re working overtime this week, and I’m going to try to work a lot during the week so I don’t have to work Saturday. I don’t like working Saturdays.

In TMI news (it’s medical stuff and seriously you don’t want to know):
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mmm… church crackers

This morning at church one of the men told us that since another woman in the congregation and I both have wheat issues, they are going to switch to rice crackers for the Lord’s Supper. He wanted to make sure that wouldn’t make us feel awkward, and nope, it doesn’t. How thoughtful is that? Frank and I always bring our own rice crackers, and now they’re changing the bread to rice for the whole congregation. I thought that was so nice. We love our congregation. The preaching is excellent, Bible classes are excellent, everyone is nice. I could do with more singing, though. We’re used to an hour of singing before even getting to the sermon. Which reminds me. I need to write letters to our Florida church and my Florida massage therapist. I’m so bad with correspondence. Evidenced by the fact that I still haven’t finished the wedding thank you notes (over two years later), and I fully intend to still send them. Bad bad bad.

Anyway. When I first went GF, I was really bothered by the fact that I couldn’t have the normal unleavened bread (matzoh crackers usually). I did a lot of studying to make sure it was okay for me to use something else. I couldn’t find anything in the Bible that said that the unleavened bread has to be made of wheat. Just that it is to be unleavened. And when the preacher at our new congregation first noticed that we always wave off the bread and use our own, he asked me about it. I told him it’s because of the wheat thing, and the first thing he said was, “Well, the Bible doesn’t say it has to be wheat bread. Just that it’s unleavened.”

We kind of lucked into this congregation. We actually have a couple of differences with the congregation doctrinally, but nothing I consider to be too big now that we understand more about what they believe. We believe all of the same things except a couple of smaller issues where they come down more conservative than I do. Frank doesn’t have a strong opinion either way but leans to my side, and we both can see both sides of these issues. I talked to a couple of the ladies about it last week and told them we believe differently on a couple of things but we wouldn’t leave because of those issues alone — as long as they don’t have a problem with the fact that we don’t agree on it and as long as they don’t have a problem with us believing differently. Their response was that they’re not the thought police, basically that the congregation needs to get along and that if there is a disagreement we need to all be open to studying about it, and sometimes the conclusion will be that we agree to disagree. That’s refreshing, actually, having been through a church split in the past (that was at least as bad as going through my divorce).

So we’re very pleased with where we ended up.

That was long and rambly, wasn’t it?

no cure for stupidity

Some days it’s not the gluten; it’s the stupidity. Yeah, so we had dinner at home Saturday night and then went to my in-laws’ house for dessert and games (but we also brought along Scrubs, so it ended up being dessert and Scrubs). My MIL (who is awesome) had gotten a gluten-free torte (divine, that was) and other yummy GF snacks. There was also ice cream, but I decided to stay away from the ice cream because the last time I had ice cream, things didn’t go so well for my tummy. Well, my MIL got out the ice cream for everyone else, and there were multiple kinds. And as soon as I saw one type of ice cream, I was like, “Oh. Well. Maybe just a little. I haven’t had that kind of ice cream in a long time. That looks so good. I took probiotics earlier and am taking Gluten Ease now, so it will probably be fine.” And I really had no reason to be taking Gluten Ease (in my mind). BTW, I’d forgotten all about having that little back up plan, but I came across it the other day, and I put some in my purse just in case a careless chef threw a crouton in my gluten-free salad again. So I was taking the Gluten Ease in case the dairy gave me any problems; it’s not an aid for digesting dairy, but it at least has digestive enzymes, so maybe it would help.

Anyway, I sat down to eat my torte and cookies and cream ice cream, and I gave some to Frank at the same time. I’d taken a couple of bites of ice cream before Frank looked at the ice cream and said, “What kind of ice cream is this?” Me: “Cookies and cream.” Him: “Um… can we eat that?”

Uh. DUH?

Me: “Oh, holy crap! No!” Damage done already, though, because there is no coming back from massive stupidity. I know I can’t eat Oreos, but for some reason I was like, “I can eat almost any kind of ice cream and not have gluten!” Almost any, SarahK.

Anyway, I didn’t get sick. How awesome is that? I had a slight migraine twinge about half an hour after, but it only lasted ten seconds or so, and then I was fine.

So I think we’re ready to eat out again. We’ve been avoiding it (and actually eating all of our leftovers), but now that I remembered about the Gluten Ease, I can probably eat out safely. Not at just any restaurant, but at restaurants that have GF menus and at least kinda sorta understand the situation.

Side note: We went to the co-op yesterday afternoon for some GF shopping (and my black cherry sodas), and I was going to pick up another bottle of Gluten Ease. Well, Garden of Life’s [Omega]-zyme was also on the shelf, so I checked it out. Same digestive enzymes as Gluten Ease and also a lot of extras. Same price, more pills, and a company I trust in Garden of Life. So I went with the [Omega]-zyme.

mostly fixed!

I saw George last night. “Anything going on I should know about?” he asked before leaving the room so I could get undressed and get up on the table.

Hahahahahaha. My first thought was, “Um, yes, we’re committing adultery. With my husband’s permission, though, so as long as your wife is okay with it, it’s cool.” I didn’t tell him my first thought; instead I told him he could work on my right wrist, because it’s now good enough that I won’t kill him for touching it, told him about the knot in my left wrist, and told him about how my right knee buckles when I stand up and how I’ve got a funny knot on the side of it.

I had forgotten to tell them when I made my appointment last time that I only wanted an hour, so I got an hour and a half. And I totally needed it. My right wrist feels better, and when I woke up this morning, I could move my left wrist. For the last week or so, I haven’t been able to move it upon waking, and this morning it is a little sore but has full twisting capabilities. Oh, and I can pop it! Haven’t been able to do that in a while, and that’s my very poppy wrist. The little knot on the side of it is smaller, too. I was actually pretty sure he hadn’t fixed my knee, because he worked on it a little fast when I was on my stomach, but he moved on quickly. I did feel some tendons fling and pop while he was working it, so that must have done it. He worked it a little again when I was on my back, but he really concentrated on the left knee (I think he was trying to fix the wrong one). Whatever, when I got up, my knee didn’t buckle, and it hasn’t done it since. The knot on that knee is smaller today, too, so I’m hoping that issue is resolving. It’s still a little sore, but we’ll see.

Oh, one thing. When I walked into the office, I couldn’t stop thinking about the whole blogstorm over my seeing a male therapist. So of course, when George came around the corner to tell me my room was ready, I said hi and then looked down at the floor and blushed. That’s a little embarrassing, blushing so deeply that I can feel my face getting hot.

celebrate!

I have a couple of new favorite places to shop. I mean, I love Fred Meyer (it’s like Wal-Mart but more expensive, fewer screaming children, and no mess!) — they have a bigger organic section than Publix and even have a little gluten-free section on one of the organic aisles. And then there’s the Co-op, the hippy store that has a huge selection of food that is actually good for me — oh, plus the coconut oil is cheaper than it was in Florida, which makes me happy.

Jake’s Place (also called Jake’s Gluten-Free Store) is great. Pricier than most places, but Jake’s has a great selection of foods I’d never even seen. The owner is great, her kids are charming, and the baguettes in the freezer are just yummy. The first time I went in there, I laughed when I was checking out, because there was a ribbon magnet on the counter. You know, like the car ribbons. I got the mini one. It says, “Celebrate celiacs.” Hahaha. It’s on the refrigerator, yo. Because we* should be celebrated.

*And by “we,” I mean anyone with gluten intolerance. I know some of us aren’t technically celiacs, but whatever, dude.

touched

After worship Sunday morning (actually, we don’t get out until afternoon, because class is an hour, we have a half-hour break for greetings, etc., and then worship is about two hours), the congregation is having a potluck for us. A nice send-off. After they asked tonight if they could do this and we said yes, I started wondering how we would deal with that. I do not want to offend anyone by not eating most of the food, but I can’t afford to get sick on Sunday, or I’ll be out of commission all week. Can’t do that.

But I don’t think it will be a problem. The preacher’s wife came up and asked if there is any type of food I like in particular, and I grinned, got a little embarrassed and quiet, and told her that I love anything that doesn’t contain wheat or dairy (it’s more than that, but those are the main things). She said she was glad I reminded her (everyone there knows about my food intolerances), and I told her that they didn’t need to make a big deal, and I was sure I would be able to eat some of what people make. Then one of the older ladies (the same one who said to just pack up and go) asked what she could make us that I could eat. I told her I just can’t have wheat or dairy, and she said she could make me a cake. :-) “What you mean, you don’t eat no meat?! … It’s ok. I make lamb.” After I told her that I can’t eat cake (well, I can, but not standard cake) because it has flour in it, she said, “Well, what about a pie? No wait. You can’t eat that either.” I told her to please not worry about it and that I’ll make myself a gluten-free cake (I have a mix that I wouldn’t mind trying). Then yet another sister came up and asked what it is that I can’t eat, but before I could answer, she had already answered that I can’t have dairy or wheat. People nearby gasped at the prospect that there’s nothing good in the world I can eat. Hahaha. I told them about my homemade bread (there’s no need to tell them it’s from a mix) and that I eat pasta and blah blah blah, mainly just have to use alternative flours and stay away from most processed food and shop at the health food stores. One of the girls there knew a lot about gluten-free, so we got to talk about it for a few minutes.

Anyway, I think they all want to make sure we’re well taken care of and that I can eat at least a few things at the potluck. It was kinda touching.

Mayo Clinic

In January, after Dr. Ego (or was it Dr. Arrogant? Whichever one is the horrible gastroenterologist.) was so dismissive of my three years of illness, I called the Mayo Clinic again. They’d had me scheduled for December 2006, but we were going to be leaving town a few days after that, and I didn’t want to risk still being a patient when it was time to drive to Texas. So I cancelled. Anyway, in January, I called again and asked if I could get in. This time, instead of going through the neurology department, I went through gastroenterology. The lady who answered the phone said that someone from gastro would call me later that day to tell me if I would be accepted and to let me know how long the wait would be, because there is a wait-list for that department. I never heard a word from them. And then I met Dr. Awesome, and things got better, so I didn’t worry about Mayo anymore. Of course, things still aren’t fantastic. They’re heavily improved, but I still have some issues.

So suddenly this week, a package has shown up in the mail with my appointment time and instructions for check-in to Mayo Clinic. Out of the blue! Since I had never heard from them the day I called to get on the waiting list, I assumed that it just wasn’t happening, that someone had dropped the ball, my file had been lost. And now I have an appointment for evaluation in December. ???

This would be great, because I would go to see why I still have certain problems, intestinal as well as other kinds (Dr. Awesome is perfectly happy with me having diarrhea only 75% of the time, but, um, I’m not, as that means I will never again be able to go on a camping trip, an overnight hike, blah blah blah). But… It’s December, and it’s very possible we’ll be gone by then. More on that later. So I don’t know. If we’re still here, I’ll go, but as soon as we know we’re out of here, I’ll have to call and cancel again. I guess it couldn’t be helped since I never even heard that my file got to gastroenterology. *sigh*

what am I eating, you ask?

I’d love to tell you! I’m eating pretzels!

PRETZELS.

If you don’t understand why this is a big deal, we need to talk. But anyway, I’m eating pretzels! They’re a little crunchier than “normal” pretzels, but they’re pretzels, and they taste like pretzels, and I bought them for our cross-country trek.

Also for our cross-country trek, I have two twelve-packs of Clif Nectar Bars, three boxes of Pamela’s wheat-free, dairy-free cookies, three loaves of bread (I’ll make it ahead of time and they’re small loaves — we’ll go through an entire loaf in a day between the two of us), a pan of brownies (will also make those), peanuts for Frank, and a few bags of GF beef jerky. What else should we bring (I mean, besides the PB&J for the bread)? I have on my list: Starburst, Skittles (ick, not the smoothie ones, those are gross), pickles (for some reason they are so necessary on road trips), fresh fruit, cokes, natural cokes, water…

bad Leno!

Jay Leno made fun of gluten-free pancake mix on his show. I heard people clap when he mentioned GF pancake mix. Frank and I said, “Hey!” when we saw it. It was Bob’s, btw. Jay said it should really be called “Mouth Grout.” Booo. Bob’s mixes are awesome. (Pamela’s are even more awesome.)

Be not afraid. . . I do NOT have the baby bug!

This may be a sensitive post for some, as it is about babies, so continue reading at your own risk.

I definitely don’t have the baby bug… yet. I am finding them cuter and cuter every day, though. Is that a sign of anything? It seems like everyone is having babies or wanting babies these days, and I’ve kinda been feeling like an outsider until recently. I was looking at Helen’s pictures and reading the posts about birthing her babies, and I turned to Frank and said, “I wanna have a baaaaaby.” He looked at me and asked if I was serious. And he was grinning! Grinning! What the hay? I wasn’t telling him we should go shopping for baby bedding and curtains and brightly colored paints (oh, heck no, there will be no turquoise or pink rooms in our house) or anything like that; I was just making a comment because I was all teary-eyed over Helen’s Nick and Nora. Of course, I suspect he’ll be fine with putting a bun in my oven as soon as we’re settled in Idaho — he’s made comments as such before.

I mean, we’ve talked about the fact that we’d like to start having babies not too long after we get to Idaho… because, you know… I’m thirty-one. I am getting awful ripe for baby-bearing. All of my pregnancies, should I be able to conceive, will be high-risk as it is because of the epilepsy (and I’ll have to get off my seizure meds). And at least one baby (if we have three, or have two and adopt one, or have one and adopt two – ack! Did I give in to his wish for three babies? When did that happen?) will be an even higher risk pregnancy, because I’m hoping the babies will be two or three years apart.

We’d really prefer that our financial situation is stable and good before I get all large with child and we start looking at the crib bedding and mobiles. It would be nice to not have to worry about how we’re going to afford the college tuition savings, the clothing, the food, and even the kids furniture. But you know what they say. If you plan kids for when you think you’re financially ready, you’ll just never have them. I have a feeling that with me getting on in age like apples that need to be stewed instead of served raw, my age is going to be the biggest factor. We can only wait so long to get started…