Newly diagnosed question

[Courtney541]

I have been seeing a gastro for family history of colon issues. They did a full panel that included celiac my blood work was:

31017-7 Tissue transglutaminase
Ab.IgA : 4 (weak positive) reference 0-3 negative, 4-10 weak positive, 10 plus positive 

2458-8 IgA: 321 (negative) reference   350 positive 

had endoscopy report said potential marsh 1 grade a but other issues can’t be excluded. 
 

it all just seems so confusing, I don’t meet with my dr to discuss resukts for a month, she just called and said looks like celiac, quit gluten.

I have started the diet but am just confused because I had just started a high fiber diet that contained more gluten about 3 months ago and I feel better than ever!

all confusing! Any experience with this? Could it be wrong? 

[trents]

Yes, it could be wrong. The numbers are not unequivocal. They are marginal. But my best guess would be you caught celiac disease at an early stage before much damage was done to the small bowel villi and other body systems. And there are plenty of high fiber alternatives that don't involved gluten-containing grains. Buckwheat (a relative of rhubarb) and quinoa are two examples. One thing that makes it difficult in your case is the fact that you seem largely asymptomatic with regard to a possible celiac component and your high fiber diet with gluten brought you relief from your colon issues. If you do have celiac disease, however, and continued to consume gluten, over times there would be more damage to your small bowel villi and more symptoms.

[Courtney541]

5 minutes ago, trents said:

Yes, it could be wrong. The numbers are not unequivocal. They are marginal. But my best guess would be you caught celiac disease at an early stage before much damage was done to the small bowel villi and other body systems. And there are plenty of high fiber alternatives that don't involved gluten-containing grains. Buckwheat (a relative of rhubarb) and quinoa are two examples. One thing that makes it difficult in your case is the fact that you seem largely asymptomatic with regard to a possible celiac component and your high fiber diet with gluten brought you relief from your colon issues. If you do have celiac disease, however, and continued to consume gluten, over times there would be more damage to your small bowel villi and more symptoms.

Thank you! I appreciate this response and it makes sense. I’m still really learning about gluten and trying to determine what to eat and what not to eat. 
 

it seems google brings up a plethora of scary results indicating cancer so I was holding on to hope it was something else! But I should be happy I got it early and hope adherence to gluten free helos

[trents]

Here are some basics to keep in mind.

1. There are only three grains that contain the protein called gluten: wheat (in it's various forms that go by other names like, kamut and khorasan), barley and rye. About 10% of celiacs react to the protein "avenin" in oats like they do to gluten).

2. Wheat and barley derivatives like "malt" and "malt flavoring" will be sources of gluten. And different wheat varieties have other names like Khamut and Khorasan. 

3. Foods may be naturally gluten free but if they come in contact with gluten containing products they may be cross-contaminated ("CC" around here). So, for instance you buy a bag of dried lentils and what you don't realize is that it was grown, transported, stored and processed in environments that also handled wheat. Or, you go to a restaurant and order a burger patty without the bun but don't think about the fact that it was cooked on the same grill as another customer's cheese sandwich made with wheat bread. Or, you go to Olive Garden and order the gluten free pasta but don't realize that it was boiled in the same pot of water that the wheat noodles were just boiled in. 

4. Gluten can be found in food products you never would expect it to be in like soy sauce (read the label sometime) and Campbell's tomato soup and most other canned soups as well. Wheat flour is a cheap thickener widely used in the processed food industry. You have to be a faithful label reader.

5. Be very cautious when accepting dinner invitations to others' homes even if they tried to fix something gluten free for you. Do they really know the myriad of ways gluten is hidden in processed foods?

6. Medications and supplements can be a source of gluten as wheat starch is sometimes used as a filler.

When you are largely asymptomatic as you are, the learning curve can be more difficult because you may not know when you've been glutened. However, it is also true that when you start withdrawing gluten from your diet you will likely become more sensitive to it since you will begin to lose any tolerance you may have had for it.

This might be helpful: 

 

Edited August 17, 2022 by trents