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With all the bloodwork, have they checked your vitamin D?  What is it?  Celiac Disease causes malabsorption, so vitamin deficiencies are common.  Doctors rarely mention this. B1 Gastrointestinal beriberi, a severe thiamine deficiency, is characterized by symptoms including anorexia (loss of appetite), abdominal discomfort and pain, nausea, and vomiting. Other potential symptoms like abdominal fullness, indigestion, and constipation can also occur. These gastrointestinal issues may resist standard treatments, signaling a need to consider thiamine deficiency.  It is commonly believed that thiamine deficiency is not an issue in the western cultures, so rarely address by doctors. Doses of thiamine above 100 mg several times a day will quickly show improvement.  Borderline deficiency will come and go depending on what your eat.  Carbs use it up faster, so for example if you eat a lot of carbs today, tomorrow you may have symptoms.  Thiamine (Benfothiamine is a synthetic fat soluable thiamine) is water soluable, we only store maybe a weeks worth, and there is no upper limit on how much you consume.  Excess is stored or peed away.   For them it isn't a oroblem.  LOL.  They just say some people are like that and see the next patient.  

I used the cream for 4 days as prescribed 3 years ago. While I cannot be sure it triggered these problems, the timing is very suspicious. Yes, the oats are gluten free, and while I knew some celiacs have a problem with oats, I only just thought to eliminate them.  I just read about corn on this website, which I do eat plenty of. I do eat dairy, and would be so terrible sad to give it up, but..... Thank you for the diary suggestions. I'll start one today. Thanks for responding!

Welcome to the forum, @sillyac58! Are you still using this topical medication for this precancerous spot on your lip? If not, are you saying you used it for a limited time and believe it triggered additional ongoing immune system reactions with unpleasant symptoms? I'm not clear on this. Are the oats you use certified gluten free? You may know this already, but even if they are certified gluten free, the oat protein avenin is similar enough to gluten to cause reactions in some celiacs. The development of other food intolerances is also common in the celiac community. Common offenders in addition to oats are dairy, eggs corn and soy. Dairy and oats are the most common, however. You might do well to keep a food diary and check for patterns.

I was diagnosed about 10 yrs ago with Celiac by presenting with dermatitis herpetiformis rash. I had no stomach or intestinal discomfort, but of course showed intestinal damage. The dermatitis herpetiformis eventually went away and I've been religiously gluten free ever since. About 3 years ago I was given a topical drug by a dermatologist for pre cancerous spot on my lip. The drug is called Imiquimod/Aldara, and works by stimulating your immune system. ? The package insert and many releable online sources warn to use caution using this drug if one has an auto immune disease, I hace since found out. One of the side effects is flu like symtoms, which I had at the 10 day mark as warned. But these symptoms have been recurring regularly ever since. Low grade nausea (no vomiting), extreme fatique (sleeping in daytime) and often a migraine headache on day one or two. The bouts last around 5 days or more, usually the nausea being the persistent symptom. My dermatologist, and another I went to for second opinion say this isn't a problem. I have been ill about a third of my life ever since. I have had extensive bloodwork, been to numerous specialists, but cannot figure out what is making me sick. I have become neurotic about gluten at home, using separate cutting boards, pans, sponges, dish towels, etc. I rarely eat out, and usually only because I am traveling. I have begun taking my own food to peoples homes for dinners etc. The only thing I haven't done, until now, is to eliminated oats, which I eat fairly regularly, and are known to sometimes be a trigger. And I have to say, in my defense, that it took me a very long time to suspect gluten because my only original symtom was rash/dermatitis herpetiformis. So I didn't associate the nausea/headache/fatique with gluten for a long time. Nor did any one of the many doctors I saw suspect it. I finally had a couple of dermatitis herpetiformis spots (and severe migraine) when traveling and probably eating cross contaminated food. I've never been on one of these sights but I am desperate. I'm praying it's as simple as eliminating oats. But I am angry that I was given this drug that I truly believe set this off to begin with. Anyone?

Just switching to gluten free diet will answer your question without involving anyone else.  Your sister was diagnosed, that puts you at 40% risk of having it also as a first degree relative.  If you improve on a trial gluten free diet, you either have Celiac Disease (autoimmune) or Non Celiac Gluten Sensitivity (not autoimmune).  In any case it is important to address nutritional deficiencies like vitamin D.  Gluten free processed foods are not required to fortify.  The reason gluten foods are fortified is our western diet is deficient in them to the point where the government had to step in and require fortification.   Once you start GFD you'll realize it was the gluten you were afraid of all along, but nobody told you.