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Serious reactions to gluten

tammi22

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tammi22 Rookie
tammi22
Posted

Hi,

I was diagnosed with IBS last year, however since June/July this year I have been struggling when eating gluten. At first the reaction was just pain and bloatedness - so I just mistook it for more IBS, but this has been a growing issue for a while now. I was avoiding gluten at all costs because of the pain it was giving me, but had to continue eating it for a blood test- which came back negative.
More recently (for the past month or so), whenever I eat gluten, my face bloats and goes red, I get a headache, I go breathless, I feel so Unwell and basically I have been avoiding it completely.  (and my bowels really hurt? like the bottom of my back as well). Except earlier this week I accidentally ate something with it in and the flare (or reaction) was unbearable and I couldn't even get out of bed because of the chronic pains. I kept getting pains the day after as well (which was assumed and have only really started to recover now.. sort of). I've been strictly not eating gluten (when I've been eating since the reaction), however just earlier today my face has gone red and I've had the symptoms I get when I have gluten. The only thing I've eaten today are jelly beans (gluten free) and green tea, and I am wondering if it was the over-consumption of energy or sugar? I'm still suffering with the redness at the moment but am not feeling awful (yet). I've been concerned whether the shampoo I'm using has it in (I know you have to swallow it, or toothpaste or anything?)

I am at the doctors on Monday, however I just want to know if this is celiac or not? even though the tests were negative, and I can't even imagine eating gluten again to see if it shows on a blood test because of how it makes me feel. I'm trying my best to only eat things which say 'gluten free' (and pretty much everything dairy free due to IBS). I'm just so confused and just some advice with how to deal with this would really help :( 

Thank you!

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GFinDC Veteran
GFinDC
Posted

Hi tammi,

Welcome to the forum!

I am putting in a link to the newbie thread in the Coping With section of the forum.  It has some info for celiac newbies that might help you.  If your symptoms are that bad, then it makes sense not to eat gluten and to treat it as celiac disease IMHO.  Celiac disease testing isn't perfect and people do fall through the cracks.  You don't have to get a formal diagnosis to eat gluten-free.  Some people find it easier to stick to the diet with a diagnosis, but that isn't true for everyone.

Regardless if it is NCGS or celiac disease, the only treatment is the gluten-free diet.  Dairy often is a problem for untreated celiacs because the damage to the gut affects the production of enzymes that digest dairy sugar.

The doctors will often do only one of the antibody tests to screen for celiac disease.  Not everybody shows up on that one test though (ttg IGA).  So a full celiac disease panel is a better bet to catch people. 

 

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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      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.
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      Test interpretations

      By trents · Posted

      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.
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      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
      Test interpretations

      By MicG · Posted

      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. 
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