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Do We All Have Different Degrees Of Sensitivity?


TGK112

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TGK112 Contributor

I have been gluten free for about 6 weeks now. I never had typical symptoms prior to going gluten free - except for osteoporosis and weight loss ( about 10 pounds in the past year). I eat out about 2 -3 times a week - and have been careful to explain to the servers that I am on a gluten free diet. I have never felt sick after eating out ( but I didn't feel sick prior to being gluten free) What I am wondering is - are some people more prone to issues with cross contamination than others?

I don't know if I am less sensitive to cross contamination or I just don't get that immediate reaction?


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GottaSki Mentor

Without specific reaction to gluten it is hard to know if you are consuming small amounts of gluten and whether these small amounts of gluten are causing damage.

I can tell you that you may still develop reactions - I became much more sensitive at about three months gluten-free and super sensitive by six months.

If you don't develop any reaction, your follow up testing becomes very important. Often the DGP IgA and IgG are the most specific to accidental gluten ingestion. My Celiac Doc suggested full celiac blood tests as follow up at 3 months, 6 months then annually thereafter.

Time will give you a better idea if you need to be more careful.

shadowicewolf Proficient

oh yes. Before going gluten free i had massive "D" and vomiting. When i "Cheated" I got major "C" (No fun), and now, whenever i get it, i retrace back to the last thing i ate.

Not to mention the brain fog (uuuuugh so bad for a college student with homework!), cramps, mild headaches, and major tiredness.

nvsmom Community Regular

I'm still pretty sensitive. I've been glutened twice by accident. Once was in a restaurant (still don't know what got me) and another was a gluten-free beer that was gluten-free to 3 parts per million. Both timesI was sure it was gluten. I have had two stomach issues that I think was not gluten related since it wasn't quite my typical reaction, although it was similar.

TGK112 Contributor

I guess what I am asking is more about internally. I realize that we all have different reactions - from none - in my case - to severe. What I'm wondering is - do we all have different degrees of internal damage? Does one person get inflamed by a speck of gluten, while it may take another person a slice of bread to get the same amount of inflammation?

mushroom Proficient

Absolutely. Some celiacs with totally flattened villi can eat a slice of bread and not even notice it. For them,knowing they are conforming to the diet is very difficult because they don't know when they have been glutened. These are the so-called silent celiacs, often diagnosed by accident.

MistyRG Apprentice

I have said since I was diagnosed that I don't have the "normal" symptoms. I only had the rash that started this whole ordeal.

Now, 4 months into gluten free, my slip ups or unknown gluten is known immediately. I get a heavy, bloated feeling in my stomach, and it cramps up a little. It isn't bad, but it has progressively gotten worse with every exposure.

On one hand, I'm glad because I can tell when I am eating something that could be contaminated. But I am really shocked at how much I have changed from zero symptoms to noticeable in that short time!!!

And when I had zero symptoms, my biopsy came back with severe damage to my intestine. So even with no symptoms, we are doing damage.


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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. 
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