POSITIVE BLOODS? FALSE BIOPSY? help I'm confused ! :(

[emilyyy]

Hi everyone. I need help please Last year I got a blood test because I felt like I was super fatigued all the time. My blood test results had shown low iron and an indication of celiac disease as I had a score of 42.9 CU H for IgA, which is shown on this paper as a strong positive. They put me on a waitlist to get a biopsy/endoscopy done, which I finally ended up getting after a few months through the public system. The endoscopy apparently showed “suspicious inflammation” on the cameras, but I still had to wait for the biopsy. waited 3 weeks for my results, and the biopsy had shown no damaging on my intestine.

So that leaves me now, very distraught and conflicted on what to do. The gastroenterologist said my blood test alone was not enough to diagnose me, and that to “officially” diagnose me, they would need to perform another biopsy, which means I would need to eat gluten again for another 6 weeks. He however did tell me he still thinks there is a strong likelihood that i would have it, and that it is up to me on whether i want to go through 6 weeks of eating gluten again. 

Since I had the biopsy/endoscopy performed, I stopped eating gluten… and it’s been about a month and a half now. I honestly was so happy that I had a cure for all of my struggles, I’m feeling wayyyy less tired, I’m feeling more emotionally stable and my bowel movements are much better. But after hearing that I might not even have it, I’m now not sure what to do… I know you guys might think I sound crazy for wanting to have celiac disease, but the only reason I was hoping to be diagnosed was because I felt like it would have been the solution to my problems, by stopping eating gluten. And now I’m second guessing myself and thinking maybe I’m making this all up in my head and it’s a placebo effect that I’m having, and that’s the reason I might be feeling much “better”.

What should I do? Has anyone else had this same situation happen to them? Should I just eat gluten again and do another biopsy to make sure? Please let me know

[trents]

Welcome to the forum, @emilyyy!

Countless contributors to this forum have found themselves in the same conundrum as you.

But I think you have your answer. Your greater well-being since instituting a gluten free diet is not a placebo effect. However, it seems to be true that some people do need an official diagnosis to help them stay on the gluten free bandwagon. Remaining gluten free requires a great deal of determination and discipline. And there is a social cost to it.

If you do decide to go back on gluten to qualify for a valid biopsy, you would need to really pig out on gluten for several weeks, daily consuming gluten in the equivalent amount of six pieces of bread. 

[Scott Adams]

Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score. 

Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis.

It's also possible that your celiac disease was caught early, before villi damage occurred.

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.

 

 

 

 

[knitty kitty]

@emilyyy,

Have you thought about getting a DNA test?  Celiac Disease is genetic.  You must have at least one of the genes for celiac disease to develop.  You don't have to be consuming gluten for a DNA test.  

What is being done for your low iron?  Low iron is common in newly diagnosed Celiacs.  

In the early stages of celiac disease, intestinal damage can be patchy or beyond the reach of an endoscopy.  Biopsy samples need to be examined under a microscope by someone familiar with changes due to Celiac Disease.  

The amount of gluten eaten prior to blood tests can affect the results.  Were you eating 6 -10 grams of gluten prior to testing?  Sometimes people cut back on gluten before testing because of their uncomfortable symptoms, and get equivocal results.

It can be frustrating trying to get a diagnosis.  But, do keep trying so you won't be stuck in that limbo land of wondering.  

I was diagnosed by genetic test and improvement on a gluten free diet.  I had diabetes, anemia and Thiamine deficiency, all of which affect anti gluten antibody production, and was seronegative.  You do have positive antibodies.  Ask your doctor for a genetic test.  Be strong.  It is a bumpy road to diagnosis, but we're here to cheer you on.  Best wishes! 

[emilyyy]

21 minutes ago, knitty kitty said:

@emilyyy,

Have you thought about getting a DNA test?  Celiac Disease is genetic.  You must have at least one of the genes for celiac disease to develop.  You don't have to be consuming gluten for a DNA test.  

What is being done for your low iron?  Low iron is common in newly diagnosed Celiacs.  

In the early stages of celiac disease, intestinal damage can be patchy or beyond the reach of an endoscopy.  Biopsy samples need to be examined under a microscope by someone familiar with changes due to Celiac Disease.  

The amount of gluten eaten prior to blood tests can affect the results.  Were you eating 6 -10 grams of gluten prior to testing?  Sometimes people cut back on gluten before testing because of their uncomfortable symptoms, and get equivocal results.

It can be frustrating trying to get a diagnosis.  But, do keep trying so you won't be stuck in that limbo land of wondering.  

I was diagnosed by genetic test and improvement on a gluten free diet.  I had diabetes, anemia and Thiamine deficiency, all of which affect anti gluten antibody production, and was seronegative.  You do have positive antibodies.  Ask your doctor for a genetic test.  Be strong.  It is a bumpy road to diagnosis, but we're here to cheer you on.  Best wishes! 

to be honest, i don't think i was eating the recommended amount of gluten before testing, some people say i need to eat at least 3 pieces of bread per day, but i def did not eat that much EVERY day, some days i may have not even eaten gluten i think. but then there would be days where i ate big bowls of pasta so i thought that maybe would be enough gluten to show positive on the test. but then i also went through a stage where my therapist told me to just stop eating gluten if it's making me feel bad because i was waiting for ages since i wanted to get my biopsy done through the public system. So i ended up not eating gluten for about a week, but then after that week I got a call from the centre they ended up shortlisting me and marking me as important. so they said in 3 weeks time i could get my biopsy done. So then i continued to eat gluten until then, but now I'm doubting that the one week i didn't eat any could have messed with my biopsy results

[knitty kitty]

@emilyyy,

Yes, eating gluten sporadically and not eating gluten for a week can impact your biopsy results.  

You owe it to yourself to do the gluten challenge appropriately.  Go all in so you will get unequivocal results.  

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Keep us posted on your progress!

Edited March 13, 2024 by knitty kitty
Typo

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Katanya]

But what if when you eat three slices of wheat bread you get really bad skin reactions. Who would perform the DNA test for celiac? 

[trents]

If you get skin reactions from gluten it may not be practical for you to undergo the gluten challenge in order to get tested for celiac disease. Can you describe the appearance of your skin reactions? Is it a rash with small blisters in the bumps?

Any physician can order a DNA test or you can pay to have a private company to do testing. 23 and Me is the big name in third party DNA testing. But you need to understand that 40% of the general population carries one or more of the genes associated with celiac disease yet only about 1% of the population actually develops active celiac disease. The gene test for celiac disease is not diagnostic. It only establishes the potential for developing celiac disease.