Positive Everlywell screening results, saw gastro, waiting on endoscopy - question

[mrsdelore]

Hello. Newish here.
I did the Everlywell home celiac screening test which came up positive for elevated tTG-IgA although it did not give a value. They gave me a referral for a gastroenterologist and I finally had my appointment today. I was a little surprised they didn't want to reorder blood work but the doc said elevated tTG-IgA is a positive indicator for potential celiac.

My symptoms have been really in the past year and a half, having gotten worse in the past year. Heartburn, headaches, fatigue/low energy, bloating, gas, diarrhea/loose stools, less often constipation, heart palpitations, itchy rash with scattered blisters on my left arm. I have not eliminated gluten for longer than a month due to needing to eat it for the testing, but when I've been off it, the heartburn, bloating, gas, and diarrhea just about disappear. And when I say bloating, it's almost like full body bloating if that makes sense? Like even my arms and legs feel bigger to me - crazy!

Anyway, the doc said an endoscopy is warranted and I have it scheduled - unfortunately, it's not until April 23! The doc said I have a few options over the next few months. I can stop eating gluten for now and resume eating it at least 3 weeks before the endoscopy. Or he says I can just continue to eat a "normal" diet between now and then.

Just looking for thoughts on how to approach this. They do have me on the cancellation list to call if anything sooner opens up - but of course there's no guarantee anything will open up. Part of me wants to avoid gluten because I feel better when I do, but then I worry if I do that the endoscopy/biopsy won't be accurate. Or that I won't be eligible for an early appointment if one opens up.
 

How much gluten and how often do I have to be eating it? If I limit myself to one serving of something gluten most days is that enough? Thanks for any thoughts.

[knitty kitty]

Hello,

No, one serving of gluten something isn't going to be enough to provoke enteropathy. 

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 serum antibody tests and changes can be seen in the small intestine.  

If a slice of bread has two grams of gluten, then five slices would be needed to total the ten grams required to provoke that enteropathy the gastroenterologist is looking for.

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!

[Scott Adams]

It sounds like your doctor is giving you correct advice. 

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: