Probable diagnosis- some questions

[Hawk4]

Well, this came out of the blue, except it really didn’t. But in any event, here are the test results from 3 days ago:

Tissue Transglutaminase IGA (u/ml)

Normal <= 14.9

Result:  > 250

Deamidated Gliadin Peptide IGA, qualitative, eia 

Normal <= 14.9

Result:  > 250

So, questions while I wait for GI referral and the probably inevitable but perhaps unnecessary endoscopy/biopsy.  (I’ve done some intensive research, and got at least some of the basics down. And I’ve gone ahead and thrown out all the gluten in my house, learned how to read labels, picked up an app to help me, etc.)

1.  Given that I’m about 20 times the upper range, is an endoscopy really necessary? Just for fun, I ordered a gene test.
 

2.  Can I, and is it a good idea, this soon after these positive tests, to eat, lactose-free, gluten-free, probiotic yogurt?  
 

3.  Can I, and is it a good idea, this soon after these positive tests, to eat, gluten-free oats? They have been one of my go to breakfasts and make me happy.

Thank you in advance!

 

[trents]

Welcome to the forum, @Hawk4!

You should not begin the gluten free diet until the endoscopy/biopsy is performed (should you decide to go forward with it) since going gluten free now will allow healing of the villous lining of the small bowel to begin, and the damage to that surface is what the biopsy is designed to detect.

Being dairy intolerant is common in the celiac community but by no means universal. Same with oat protein. If you are dairy intolerant you would not want to consume yogurt. Corn, eggs and soy are also common cross reactors in the celiac community.

Since you don't know what you are intolerant to besides gluten, you may want to wait and see how you improve with just eliminating gluten to start with.

[Scott Adams]

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:

 

 

[Hawk4]

Thank you for these very thoughtful replies.

I wish that the European approach was adopted here.  Those authorities are helpful… I’ll pass them onto my provider.
 

I’ve read about the importance of staying on a gluten diet while being tested. But given how sick I was last week, there’s no way. At least the blood test was done while I was in full gluten mode.  I’m really not prepared to keep killing myself to support a diagnosis.  Indeed, another test showed that I’m not absorbing protein properly. So there you go.

[Scott Adams]

If it is clear to you that gluten is causing your severe health issues, then a formal diagnosis may not be the best way for you to go.

Additionally, getting a formal diagnosis can make private health and/or life insurance more expensive, and harder to get.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):