Archives for: July 2006
Oh boy. Back to square one now. I just got glutened, in a way that surprised me, but soon I said "D'oh!" I won't go into the details until I have more details about how the gluten got in there.
Here's the interesting thing though, my lower back started tingling (creepy-crawlies) just like it did after my alleged shellfish poisoning. I still feel there was toxin in the crab, but it's contribution to my health problems seems negligible at this point, considering how I feel right now. (Perhaps that could have something behind the mechanism of celiac neuropathy, we let toxins in too readily, and those toxins can then wreak havoc? Pesticides, chemicals, naturally occuring toxins, etc.)
Here's the other clincher. About a week ago I got a rash, much like mosquito bites, but without the mosquitoes...I hardly spent anytime outside and had "bites" in places that mosquitoes don't usually reach. Shellfish poisoning could have caused this too, ciguatera can stick around a good long time before it gets cleared out. Then, I looked at pictures of Dermatitis herpetiformis, and it looks just like it. Not as bad as most of the pictures, but same general distribution and characteristics. So, I'll make an appt with a dermatologist once offices open. Maybe I'll become a biopsy-proven celiac afterall. (For those who don't know my background, I was too far off gluten at diagnosis to expect an accurate biopsy, so I opted out of poisoning myself for a couple months to get the biopsy)
Wow...You are now entering the celiac twilight zone. Dermatitis herpetiformis and celiac neuropathy? I'll see what the dermatologist and neurologist think, but that's my strongest suspicion...today. Why me, why now? Stress of having children, possible vitamin deficiencies could contribute, and occasional bouts of poor diet. I loosened up too much, after hearing a gastroenterologist talk about how when she first started her work people weren't so careful about trace amounts of gluten. Those people still got well. I guess I'm not one of those people, and celiacs diagnosed as adults tend to have a lot more trouble with complications.
I finally got around to seeing an allergist. Since I keep noticing pistachios around more lately, I figured I ought to get an epi-pen just in case. They are my anaphalactic "true" food allergy. I was afraid I'd have more, so I let them test me for all the usual suspects. They didn't have any pistachio extract, so they used every other nut, thinking I'd be allergic to more than one. Also on the list were wheat, corn, soy, eggs, milk, some fruits and tomato. The results were better than I expected. None of the nuts caused a reaction. Wheat caused a mild reaction (2 on the scale) - no surprise there, I knew I was allergic to it, along with all the other ways it's awful to me. Soy caused a milder reaction (1.5) - also no surprise. That was it. I got my epi-pen Rx and went home happy.
These tests only show some classic food allergies that can lead to anaphalaxis. I didn't have any blood tests run, since I just went b/c of pistachios. All food allergy tests can be somewhat unreliable, and I was afraid I'd come home with a list of 20 more foods I can't eat. Happily, I can just carry on as I know I should. No real answers, but no bad answers. The only surprise was that I didn't react to corn. I still consider myself very corn intolerant, but it's nice to not have to worry so much about it killing me by surprise one day.
I've been food journaling, for my neuropathy symptoms. It's hard yet to find any real links, since when I cheat with one thing, I usually cluster a few other avoids with it. I am leaning toward pointing my finger at sugar though. There may not be one solid answer or diagnosis for me, but blood sugar fluctuations seem quite likely at this point. If I have something sweet, especially away from other food, my symptoms flare up within 20 minutes. I suspect my blood sugar spikes a bit too high, then rapidly falls within an hour. All the glucose tolerance tests I've taken so far only measure at one hour intervals, but all the excitement is over by then. I think shellfish did have something to do with it, exposing a weakness and a process that was already underway. I also think my thyroid had something to do with it. Whatever the causes, sugar is soon to join the ranks of my list of foods that are mortal enemies to me.
So, you might have inferred that my super-compliant diet didn't stay that way on our Disneyland trip. This brought my neuropathy back, though not as bad as the first round. Dr. D. had recommended I get my thyroid checked, as that is sometimes linked to neuropathy. That was news to me, so I got in and got it checked.
After more research, I'm finding that most autoimmune conditions can have some sort of neuropathy associated with them. 1 in 10 celiacs has some sort of neuropathy, that's a pretty high number! Though this round had nothing to do with any gluten, as I haven't eaten anything questionable (if in doubt, go hungry). I've also learned that statins can cause neuropathy, which doesn't apply to me, but I thought I'd pass it along I was (and am) hoping that my neuropathy is not a new disease...but can be explained by something I already know.
The nurse called me yesterday and left a message that my thyroid test was normal, so I started researching more. Found an article from a neurology publication about diabetes causing neuropathy much earlier than previously suspected, and before blood sugar fluctuations are easy to test for. So that explanation made sense too, since straying from a strict O-nonnie low-carb sugar-free diet brings symptoms on. When I'm super compliant, I don't even put agave nectar in my green or herbal tea, and eat better than any diabetic I've ever met. So that would explain the dietary link.
Then today my doctor called and said, basically, "normal" depends on your definition of normal, and he didn't consider my TSH to be normal. I asked what it was and almost fell over when it was above 6. I didn't think a TSH that high was still considered normal by any lab, and I used to feel like pond scum at anything above 3. So perhaps that explains everything. Interestingly, my pharmacy had switched me from Armour to generic armour, a few weeks before my worst neuropathy episode. I didn't know there was such a thing as generic armour. So many things went wrong at that time, and that was one of them. My diet, the crab, and a few other things were also wrong, but hopefully the thyroid is the answer.
I've been hopeful to get my thyroid standing on its own two feet, like my brother and others have done, but I don't know if it's meant to be...especially if I keep having babies. Of all prescriptions to have to take, thyroid isn't so bad. At the same time, I have gotten to know my thyroid a bit better through this, it was on the verge, and I saw the effect of consuming avoids. So, healing my thyroid is certainly a worthy goal, but from now on I'll let my thyroid determine my medicine dosage, not my own desires to be off meds.
We had a great trip to Disneyland last week. It was kind of spontaneous, the A/C froze up, so we buzzed out of town. Didn't escape much heat by heading South, but it was worth it to see my toddler and even baby, react so happily to everything.
We found the park to be quite celiac-friendly, and I indulged in a gluten free pizza, without much guilt The chef at the pizza place was really great to us.
We returned, exhausted, and soon us grown-ups were sick with something much like strep throat (though tests were negative). My husband got it first, and worst, but I followed along. Sigh. We will recover.