Celiac Disease With Gastritis And Granuloma On Endoscopy

[3BoyMama]

Hi Everyone,

I am a newbie here. I will try to make this as brief as possible! We have been on quite a journey with our 13 year old who has had slowed growth, no weight gain in 2 years and delayed puberty. After ruling out a lot of endocrine issues, our endocrinologist sent us to a GI doctor. The blood test generally done for celiac disease was not valid for our son because they learned he was deficient in IgA. Therefore, although he has absolutely no GI symptoms at all, they felt they should do an endoscopy to rule out Celiac disease as a reason for his growth issues.

When they did the endocopy, they saw stomach inflammation, ulcers and one granuloma. There were also findings in his duodenum. His duodenal bulb biopsy had subtotal villus atrophy, minimal epithelial lymphocyte accumulation, and focally prominent gastric metaplasia. He was h-pylori negative. There was a few other findings of metaplasia in his esophagus as well.

His original pediatric GI doc then thought his most likely diagnosis was Crohn's disease. She wanted to do a colonoscopy, capsule endoscopy (camera pill study) and an upper GI swallow. We decided to take him to the director of the inflammatory bowel disease department at our local children's hospital in Denver. We have friends in Boston with 2 kids with Crohns and their doctor recommended this doctor. He is also a researcher and does a lot of research on Celiac disease.

He was less convinced of Crohns right now although it could certainly be a possibility and it may be caught before there are any symptoms. He did more blood tests for Crohns that can be done in people who have an IgA deficiency. If they are positive, he will want us to try the Gluten Free Diet and see if it helps him to grow. I imagine they may also do another endoscopy to see if there are changes.

I have a million concerns but the most pressing is that he only has so much time in his life to grow so we want to be aggressive. If he does have villus atrophy, that certainly could be effecting his growth. We have friends whose daughter was diagnosed with Celiac her freshman year of college and grew 2.5 inches in her sophomore year! We know it often effects growth and puberty. But couldn't Crohn's do the same thing. I, of course would MUCH RATHER he have Celiac than Crohns but also want to face whatever it is as soon as possible.

The pathology report said his findings were "highly suspicious of Crohn's" because of the granuloma.

Have any of you had a finding of a granuloma on endoscopy in your stomach or duodenum? His was in the stomach. Did any of you have kids (or yourself) that had delayed growth and puberty due to Celiac disease?

If he tests negative on the next set of blood work as well, should we still try a gluten free diet because of the "subtotal villus atrohpy?"

I do trust this doctor but also want to advocate for a more aggressive ruling out of other issues as well so we use our time wisely.

I would love to hear from any of you who may have had some gastritis and/or granulomas on endoscopy.

Best Regards.

[psawyer]

If he tests negative on the next set of blood work as well, should we still try a gluten free diet because of the "subtotal villus atrohpy?"

In a word, "yes." Any level of atrophy in the villi is highly indicative of celiac disease. While other causes are possible, they are rare. If symptoms resolve on the gluten-free diet, then you have your answer.

[Lisa]

In a word, "yes." Any level of atrophy in the villi is highly indicative of celiac disease. While other causes are possible, they are rare. If symptoms resolve on the gluten-free diet, then you have your answer.

Yes, yes...I agree with Peter! There are other possibilities of blunted villi, but coupled with the symptoms, it appears that gluten may be a good indicator.

Do you have a family history of digestive issues? The tenancy can be a heredity.

Before you explore a gluten free diet, I would re-test for a full blood test. There are now new tests that are more accurate than in the past.

Here is some information:

Open Original Shared Link

[3BoyMama]

We heard from the doctor yesterday. Here are the results and the plan:

I would be interested in what you all think. I am also so upset about the bone age x-ray being 2.5 years off with our first endocrinologist. That changes a lot of things and limits my son's time to grow!

Bone Age x-ray-

The latest doctor to read his bone age x-ray felt it was near his real age. The first radiologist thought it was his real age but endocrinologist thought it was 10.5 and not 13! So now we have two that agree on 13.

IgA -

He is truly deficient in IgA.

Celiac panel that can be done with IgA deficiency -

(tissue transglutaminase antibody IgG and deamidated gliadin peptide)

They did test positive for Celiac Disease

Now for the plan....

His office will call in the next day or so to schedule a repeat endoscopy, a colonoscopy and a capsule endoscopy all to be done on the same day.

Here is what he said.... on his prior endoscopy the villus atrophy that was seen was only a small portion of the duodenal bulb...first few inches. That can be Celiac but even with the blood work and the small amount of villus atrophy, he is not totally convinced it is Celiac and the only way to totally prove that would be a positive result from a gluten free diet. He is also not convinced that this would truly be enough damage to cause malabsorption and therefore growth issues. The rest of the duodemnum looked fine.

Granulomas can be seen a lot of other times and since he has no other signs of Crohns, he wouldn't jump to that very quickly either.

However, since the latest bone age x-ray does show his bone age is 13, we need to be more aggressive at ruling this out. If it was 10.5, he would tell me to have him go on a gluten free diet and see what happens with his growth.

I hope we can get this done quickly. I feel like we are racing against time since now it appears his bone age is older. We need to figure out why he has stopped growing!

So, do any of you have advice for me? Have those of you with kids with growth issues had similar experiences with bone age readings? I am glad that we are going to get all of this testing done and that we are with a doctor who truly is an expert in Celiac and Crohns. It is great that he will see my son's GI tract for himself!