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Hives


DogWalkerNYC

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DogWalkerNYC Apprentice

Let me start by saying I've never had hives and, to the best of my knowledge, never had food allergies. I'll be 65 in October. Two years ago my dr diagnosed me with mild GERD and a daily Prilosec usually stopped the heartburn and night time vomiting, unless I ate too late or the wrong foods, etc. But basically the GERD was under control.

Then the bloating started after eating a buttered roll every night as I did computer work. I had never heard of gluten intolerance or Celiac Disease until the bloating scared me into doing some research. And then,the bloating, along with symptoms I've had since I was a child, began to make sense. I 'played' with a gluten-free diet, not wanting to see my dr yet, because I started to think the GERD diagnosis was wrong, and I decided to test myself and then discuss my reaction with my dr. Within a week 3 major symptoms, among them the bloating, STOPPED!!. Then I glutened myself again (not so much to test my theory but honestly because I fell off the wagon) and the symptoms started again.

For about a month I was a yo-yo dieter .. gluten free .. gluten .. gluten free, etc. In addition, I started ordering gluten free meals from restaurants, only to get mild reactions after eating them. Further talks with the restaurants uncovered the fact that there may be small amounts of gluten in sauces, etc. but they assured me they didn't add any gluten. Well, duh!! They just don't get it.

About a month ago the top of my right arm, from wrist to elbow (top only) became severely, ridiculously itchy and eventually broke out in hives. I don't believe it's DH because the little bumps swell to inch round, ridiculously itchy hive like things. No liquid comes out of the welts. Also, the skin on my arms changes and looks very leathery. Then this itchy condition spread to my left arm and two huge hives appeared on the back of my neck. The hives on the back of my neck eventually went away and I'm left with two extremely itchy arms (tops only) and the hives come and go.

I thought this might be related to my dog licking my arms, but I stopped him from doing that and the hives still come and go. So, although I don't know exactly what they are (DH, hives, or something else) I'm convinced they are yet another sign that 'gluten has entered the building'.

At this point I do not plan to go through the pain of eating gluten again just to be tested. I'm seeing my gastroenterologist next month for a yearly check up. I have pictures of the hive like things, lists of my symptoms and when they stopped and I'll discuss a plan of action going forward.

I am very grateful to be responding to a gluten-free diet, and I'm very grateful to have delicious gluten-free food, certified gluten-free bread, rolls, coconut milk desserts that are mouth watering and fill all my cravings (company is called 'So Delicious' and it's dairy free, cultured coconut milk. The raspberry is truly incredible).

No more eating out for awhile. If I have to for business I'll have fresh fruit or veggie salads. I have a big reunion coming up next week. As hard as it will be to avoid the foods everyone else will be eating, the thought of the pain, the intestinal damage and those huge, red, itchy disgusting hives will get me through it.

Sorry for the long post and thanks for the support.


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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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