Confused. Does He Not Have Celiac?

[kaiess]

My 8 year old son was screened for Celiac earlier this year b/c he has Type 1 diabetes (and they add this to their tests just to rule it out). Well his TTG (I hope I'm stating these properly) was about 94. He was then scoped and the biopsy came back negative. He did however have duodenal ulcers, which they were hoping was the cause of the high TTG. So we did a round of Prevacid 60mg daily for 6 weeks to heal the ulcer (it was not caused by H.Pylori). Then they had more bloodwork done and another TTG as well as the genetic screening for Celiac. His TTG came back at 149 this time and he was positive for both the genetic markers. I am unsure if they screened for the Alpha or Beta but regardless he has both of the markers. After hearing of the results I was in a panic. I called the ped. GI's office and was told not to worry because a lot of the population in the NorthWest (of America) has one of these markers and he had a negative scope. OK, so my questions as a parent are.....Are they not going to scope again? He has no symptoms and is growing normally BUT..... what about all these test results.!?!?!? How do they know for sure his ulcers have healed?? (the nurse told me "oh, he'd have symptoms and you'd know") Well I'm sorry but he had no symptoms of anything before yet he had ulcers!! I really don't want to change his diet b/c for our family that would mean a totally different lifestyle. We LOVE our gluten loaded food and we are in quite an isolated community with very little gluten-free products. The cost to us would be substantial, thus I'd need the diagnosis for tax purposes (we're in Canada). Any opinions on our test results, and I'm sorry if I don't have a clue about the tests done. All I know is he had the TTG tests done and the genetic marker tests. Oh they also said his Type 1 Diabetes can mess with the TTG results. It just seems like too many coincidences to me to be negative.

Hoping and Praying he doesn't have it,

Kathy

[mftnchn]

Kathy,

There are many people who fall through the cracks with the insistence on positive biopsy. Some doctors will diagnose on the basis of the positive blood test. That plus the genetic markers are pretty suspicious, and the diabetes is another autoimmune condition associated with celiac. Basically with the biopsy you are waiting for the damage to be severe so it shows up.

Another problem to consider is that some people have "silent" celiac, with severe intestinal damage and few symptoms.

Is there any way to get in to see the best celiac specialist in your area? Can you call and ask the doctors about another scope?

Then you can also consider a dietary trial to see what happens. Some people notice a lot of symptoms improve that they didn't realize they had. Then if you challenge it again, he may clearly show symptoms. Just realize that once he goes gluten-free his biopsy is likely to be negative.

It is hard to do this but it is not impossible. You can find a lot of support here on the forum for all of the challenges you mentioned.

Good luck!

[kaiess]

This was the specialist for our Province that we saw at the Children's Hospital. He specializes in Pediatric GI problems. I don't think we'll ever get a diagnosis until they find destruction and absolute proof that he has it. I just wish (well not wish....) that they could diagnose it NOW if it is going to end up positive one day anyways, b/c he's going on 9 and actually listens to us now.......vs. when he's 13 and well, you know, a TEENAGER!! I see their reasoning though, that they don't want to diagnose just yet, b/c there is that chance that he doesn't have it so why subject him to this strict diet if he possibly may not have it. He is symptom free right now and growing fine.

Just frustrated.....I think we're delaying the inevitable.

Thanks for your response.

Kathy

[kaiess]

Forgot to mention also that I'm going to ask for another scope b/c by then it will have been nearly a year since the last scope. Believe it or not, right now I'm more concerned about his ulcers being healed up vs the Celiac. I'm assuming they will run another TTG in December and if it's even higher then I will demand he be scoped again b/c something is obviously going on.

Kathy

[aikiducky]

Maybe they could run an Ema (endomysial antibody) test plus the tTg, the Ema is as far as I know very specific for celiac, meaning if it is positive it is very unlikely to be anything else. It's a blood test so it shouldn't be too difficult or invasive to do.

Pauliina

[nora-n]

I did read some papers online where they say that high ttg antibody tests are very consistnt with celiac, whereas low positive results can come from other things. I have not read that diabetes can cause false positive ttg tests but one cannot be sure.

It should be possible to find the studies about the high vs low positive antibodies online.

Yes, the anti-endomysium test should be very specific for celiac.

Also, a video capsule endoscopy is better than the endoscopy since one can examine the whole length of the intestine. It might be better than a new scope. A few celiacs have the damage on other laces than the first part of the duodenum and then the video capsule endoscopy is better to find the damage.

Both the father and the mother do have at least one of the celiac genes, if the child has both DQ2 and DQ8.

nora