I am hoping to find (if nothing else!) some peace of mind here. I am a 33yo female with a history of hypothyroidism (x 10 years now.)
Ever since my thyroid went bad, I've had some weird on and off chronic symptoms (mostly joint and muscle pain, indigestion and thinning hair) that have not been able to be explained, but also have only slightly improved since going on thyroid medication. Luckily, I have a great PCP and I am a nurse myself so I am confident Im on the right thyroid medication and its working for me. However over the past year, some other lovely symptoms have developed.
The most irritating symptom is skin rashes- a mix between excema and possibly some dermatitis herpetaformis. Problem is, the dermatitis lesions are usually in my scalp, and of course NEVER around when I go see my doc or the derm, so I am self diagnosing. But although the break outs are infrequent, Im pretty sure they are DH and nothing else! The excema is constant, it never goes away now. The muscle pain, which had improved some a few years ago, is now back, and I have random swelling of my lymph nodes in my neck. The worst symptom which had recently developed was horrible diarrhea- ONLY at night (middle of the night, usually) with horrible stomach pain. The diarrhea was watery, sometimes oily, and only at night. After lots of trial and error (and googling!) I thought hey- Maybe this is a gluten issue.
So I went to my doctor. My TTG/EMA were negative, however my IgA was low. Not horribly low- just about 10 points below normal. So my smart doctor reccomended a scope (colonoscopy or endo- not sure.) So I went to a GI guy. He was - well not great. I had randomly had a cat scan of my abdomen maybe 3 months before my visit, so he said, if my cat scan is negative, chances are nothing is wrong with my gut. Im probably just horribly constipated and thats why I get diarrhea at night!!?? He put me on massive amounts of fiber (um, hello, ask me about my diet- I eat tons of greens and fruit daily!) and then wanted me to do a big clean out (A FIVE DAY PREP) for a colonocopy. It never happened, because the meds he gave me for the prep had fake sweetners in them- I have been allergic to nutra sweet for as long as I can remember. (I told him that, too.)
So, the scope was never done, and I've never gone back to that GI. I tried an elimination diet and was pretty sure it was the darn gluten. (sniff, tear, no more pasta for this italian girl.) I've been gluten free for about 4 months now. NO diarrhea at all. No belly pain at all. Joint pain is better. Havent had a DH lesion in awhile, though my excema is the same.
So I am due to return to my primary doc this monday and I want to get tested again. However ,Im gluten free now, and the thought of eating gluten for WEEKS or MONTHS sounds so painful to me! I know- if you know your intolerant, why get tested? Just eat gluten free! Well, as a nurse I know that the immune response that comes with Celiac disease can be very dangerous. So, I would like to know how careful I need to be. I rarely go out to eat ,but when I do, I have not been asking about sauces/dressings. (I dont eat pasta or bread or breaded stuff, of course.) So - do I need to be that careful? Also, this May, I am getting married! We have talked about starting a family soon. For pregnancy- is it dangerous to not know your diagnosis? Can it make morning sickness/nausea/constipation while pregnant worse? Because Im concerned about all of that- I have family members with a history of hyperemsis- or not keeping anything down while pregnant. Would genetic testing be enough (so I can stay on my diet) and if so, how can I get that done?
Of course, Im going to ask my doctor all these questions- but I thought I'd find some help (or peace of mind) in the experience others have had. I am new to this site, but it seems as though there is a wealth of information.
Thanks everyone, and havea great weekend.