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I Had My Endo Today,, Positve Blood But Was gluten-free Prior To Biopsy


eeskew7282

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eeskew7282 Rookie

I had my biopsy for Celiac Disease today. The path won't be back for 10 days but the doctor said he saw two erosive areas in my stomach and biopsied but he tested for H plyloris. He also found alot of redness on the duodenum. He said he did not see indications on Celiac disease. I was only a strict gluten free diet for almost 4 weeks. Would it really show much if I have been compliant that long. My labs were high and with a position EMA. I was extremely sick when I was on gluten, so the MD left me off the gluten for the test. I still don't think MDs know enough about it because he said maybe we can do a trial of gluten later. I told him I would never touch it again. I thought the way I feel off the gluten and the positve antibodies and the high antigen will make the diagnosis???


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leadmeastray88 Contributor

At this point, I would wait and see what the biopsy says. The doctor can't always tell if you have Celiac until they look at the slides from the samples. I'm not sure if 4 weeks was long enough to affect the intestine...I would think it depends on how much damage you had in the first place. But you're right - your doc should never have told you to go gluten free beforehand. Now if the biopsy is negative, you may always wonder "if only"...

If I were you, I would take the positive blood tests into extreme consideration. Because you tested positive for all of them is very telling, in my opinion. It's like being pregnant...you either are Celiac or you're not, you can't be just a little bit Celiac. If you're positive across the board then you're Celiac IMHO.

It's your decision whether to do a gluten challenge for another biopsy in the future...but you may only make yourself sicker and still not get a diagnosis.

My advice would be just to go gluten free regardless of what the biopsy says. We have people here who have repeatedly tested negative on biopsies but their lives have improved dramatically on the diet. It's really up to you though!

Good luck! :)

eeskew7282 Rookie

Yes I am staying gluten free. I feel like a different person without the gluten. He also said maybe one day you can be back on a regular diet, not a chance. I was diagnosed seronegative Rheumatoid arthritis 5 years ago. I think it was related to the Celiac disease because my RA is starting to improve. I think this was the cause of my poor health over the past 5 years

Gemini Experienced
I had my biopsy for Celiac Disease today. The path won't be back for 10 days but the doctor said he saw two erosive areas in my stomach and biopsied but he tested for H plyloris. He also found alot of redness on the duodenum. He said he did not see indications on Celiac disease. I was only a strict gluten free diet for almost 4 weeks. Would it really show much if I have been compliant that long. My labs were high and with a position EMA. I was extremely sick when I was on gluten, so the MD left me off the gluten for the test. I still don't think MDs know enough about it because he said maybe we can do a trial of gluten later. I told him I would never touch it again. I thought the way I feel off the gluten and the positve antibodies and the high antigen will make the diagnosis???

With positive blood work and a positive EMA, you have your diagnosis. The only reason to do an endo after positive blood work is to see what damage has been done. You cannot see indications of Celiac Disease with the naked eye, period. It has to be looked at microscopically. A doctor may see inflammation but to actually diagnose flattened villi, you need a microscope.

If the biopsy comes back negative, that could be for a number of reasons which do not mean you do not have celiac disease. However, there is absolutely no reason ever again, with what you have said in your post, to do a gluten challenge later on. You've also had a positive dietary response.

I hope you are feeling better soon!

eeskew7282 Rookie
With positive blood work and a positive EMA, you have your diagnosis. The only reason to do an endo after positive blood work is to see what damage has been done. You cannot see indications of Celiac Disease with the naked eye, period. It has to be looked at microscopically. A doctor may see inflammation but to actually diagnose flattened villi, you need a microscope.

If the biopsy comes back negative, that could be for a number of reasons which do not mean you do not have celiac disease. However, there is absolutely no reason ever again, with what you have said in your post, to do a gluten challenge later on. You've also had a positive dietary response.

I hope you are feeling better soon!

Thanks so much for your advice. I agree, I am much bette now and not going to risk it.. Thanks,

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    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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