Help! Doctor wants to re-test!

[CanIEatThis]

I started developing sensitivities to gluten about eight years ago. Five years ago I went to an internist and asked to be tested for celiac. He gave me a celiac genetic test and I came back positive for both HLA DQ2 and DQ8 genes. At that point I had been on a gluten free diet for months, and we agreed I would need to start a gluten challenge. I was given a Total IgA test, and the value was 115 mg/dl (normal range 82-453), so I'm not IgA deficient. After eight weeks of eating gluten at every meal, feeling like I was going to die, and being tested multiple times, my TTG IgA levels were only at a 4... and they needed to be at at least 20 for a "weak positive". That Dr said to me, "well you're not celiac, and I don't know what else to do, but you're highly reactive to gluten so just don't eat it" and sent me on my way. I have not eaten gluten since, and if I get cross contaminated, I'm sick for days.

Fast forward to today, where another non-celiac but highly-reactive-to-gluten friend was diagnosed with SIBO, is undergoing treatment, and is now able to tolerate small amounts of gluten. Like, a whole light beer!! I don't see myself ever gorging on gluten again if I could, but it would be nice to not have constant anxiety about getting poisoned by hidden sources of gluten when I go out to eat or to a friend's dinner party. So I decided to go back for testing to see if my gluten intolerance is just a symptom of something curable that no doctor had tested me for.

After waiting months for an appointment for a gastroenterologist, he tells me he's "pretty sure" I'm celiac, even with the above test results from five years ago, and wants me to undergo a 2-4 week gluten challenge before he will consider looking at other options. I've told him that I'm concerned about how the symptoms are going to impact my quality of life, but he's insistent on doing this first. He's supposedly the best gastro in my insurance network, so I'm not sure what to do. Do the tests from 5 years ago rule out celiac, or is it worth it to try again? Do I keep looking for a new doctor? 

Edited July 13, 2018 by CanIEatThis

[Ennis-TX]

Celiac can develop at any time during your life, also the testing if NOT the full panel can miss it, on top of that some people do not show on the blood test but have damage show on the endoscope and biopsies. Other times they  can miss the damage with biopsies as the surface area of the intestines is large then a tennis court.

Open Original Shared Link  You can try eating just a slice of bread a day, a few wheat thins, or 1-2 tsp of vital wheat gluten before bed to sleep off the worst of it. Read up on testing more if you wish.

You could also be Non Celiac Gluten Sensitive, we have members with this, and there is no way to test it or confirm it other then diet. Some react more violently then celiacs but they lack the villi blunting associated with celiac, but can still get many of the same symptoms.

[SinisterRye]

im new to all this but id never get a test of shoving some device far in orafice-i seldom go to doctors but ive been screwed up for years-maybe its gluten

[CanIEatThis]

Thanks, Ennis_TX. Should I be concerned that he says I only have to gluten challenge for 2-4 weeks before a blood test? Everything I've read, both from the non-conclusive gluten challenge I did 5 years ago and again recently, says you need more time than that. 

I'm just frustrated. I don't want to repeat all the symptoms for nothing... they are debilitating and I'm sure I'll end up missing work some days due to illness. I don't understand why he won't screen me for other things before telling me to reintroduce gluten after being gluten-free for almost 5 years. I might as well wait until the new blood test gets approved that confirms celiac without eating gluten  

 

[squirmingitch]

The University of Chicago Celiac Disease Center says 12 weeks for a gluten challenge for the serum panel and 2 weeks for an endoscopy. Here's the thing CanIEatThis, you never had the full serum panel 5 years ago. You only got the TTG IgA. Here is the full panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

Trying to read your present gastro's mind; I'm thinking he's going by your positive genetics and your verbal history of what gluten does to you. He's actually taking you seriously & not brushing you off as an overreactive, health obsessive freakazoid. I think he's thinking that if you were so adamant that gluten hurts you that you stayed off of it for 5 whole years without a dx, then he believes what you're saying. 

 

I seriously doubt that test will be available in the next few years. it hasn't even had subsequent studies done on it yet with a larger pool of people. This thing, if it proves out & that's usually a big IF, is going to be many years down the road.

[PTArt]

A gluten challenge is a bad idea. Get a food sensitivity test through KBMO Diagnostics, simple blood spot test will tell you what foods you are sensitive to, and you do not need to be consuming the food. A gluten challenge is not necessary and is dangerous.

[lyfan]

I'm not sure what the OP has in mind. As far as I know, there are no "curable" gluten sensitivity problems. Not yet. While there is a hell of a lot more research and knowledge than there was 15 years ago (when maybe 4 people in the world had any concept of how to diagnose and treat celiac, literally) there are still a lot of open questions.

Bottom line, if gluten hurts you, you need to avoid it. Whether you are celiac or not, the "cure" is the same, and there is no cure, just a lifetime of avoiding gluten--until and unless more is learned.

I'd be curious to know what the OP thinks is a "curable" gluten allergy. I'd love to be wrong about this.

[squirmingitch]

1 hour ago, lyfan said:

I'm not sure what the OP has in mind. As far as I know, there are no "curable" gluten sensitivity problems. Not yet. While there is a hell of a lot more research and knowledge than there was 15 years ago (when maybe 4 people in the world had any concept of how to diagnose and treat celiac, literally) there are still a lot of open questions.

Bottom line, if gluten hurts you, you need to avoid it. Whether you are celiac or not, the "cure" is the same, and there is no cure, just a lifetime of avoiding gluten--until and unless more is learned.

I'd be curious to know what the OP thinks is a "curable" gluten allergy. I'd love to be wrong about this.

I don't know what you think you read. The OP did not say anything about  a "curable" gluten sensitivity or "curable" gluten allergy.