Confused And Overwhelmed.

[Mom-of-Two]

I apologize because I did post on the kids section as well, but I am so overwhelmed and don't have anyone to talk to!

I was diagnosed with celiac almost 5 months ago (after 3 years of bloating as primary symptom), via celiac panel and then biopsy confirmed. We just had both kids tested with a pediatric GI, although no major symptoms for them we just wanted to get a baseline since it is genetic.

My 7 year old's tTG was high (78.20), that was the main test they did, also total IGA serum was normal. The GI said he uses the tTG for children, it is very accurate for celiac. I had a full panel done when I had bloodwork, but he said those others are not very specific in young children.

She had endoscopy a few days ago, and we will find out results on Tuesday.

My 4 year had the same tTG labs done, also iron panel and CBC because his pediatrician is concerned he doesn't eat meat (we have tried EVERYTHING with no luck!) however, his iron levels were all great, no signs of any vitamin issues and normal celiac results, SO the GI dr suggets re-testing him every few years unless he develops symptoms sooner.

I am VERY confused and overwhelmed with the info I was given the day of endoscopy, he said that just because her tTG was high, unless the biopsy shows something, he believes it is a false positive test- and we should not put her on a gluten free diet. I was baffled. I have celiac myself, so to say that her high tTG doesn't matter makes NO SENSE to me! At this point I am honsetly hoping her biopsy DOES show celiac, just to have a clear cut answer, because if it is negative I need to get a new GI dr for her, who supports the celiac diagnosis bassed on blood results and family history.

I am just irritated. I then asked him about y 4 year old and he said well, his results are negative, many families do make the whole house gluten free, but I would suggest letting him eat whatever he wants when out, so that you can keep testing him - in other words, making him entirely gluten free means we will never know if he develops celiac, until he leaves for college for example and eats normally

I know what you lovely people will suggest, same as my instinct tells me, go ahead and start gluten free for my 7 year old either way- her joint pain is a concern, she has had it maybe 18 months, been tested for juvenille arthritits with normal results. I could then have her tTG retested in 6-12 months, correct? And if they went down to normal, clearly celiac is the answer, as we would know from her response to the diet anyway.

My hubby is already gluten free with me, so making our meals all the same at home is not an issue--- as others have said here, it is just hard to make your kids be "different" if they do not need to be, restricting a diet if there is no actual reason.

It is really quite overwhelming.

[GFinDC]

Yep, try the gluten-free diet for her. Tests are not perfect, and they don't really matter if she improves on gluten-free. When the medical establishment comes out with a perfect 100% accurate test then they will have some basis for making claims about people not being celiac due to a test result. Until then they are guessing, or blowing smoke as some people call it.

The only important thing is if she gets better off gluten.

[Mom-of-Two]

Update: Normal biopsies.

The pediatric GI said to me, she "could" have latent celiac, and will likely develop full blown celiac at some point, or it's a false positive blood test (a false positive in a child whose mother has celiac and she has elevated tTG??)

I asked him about her high tTG level and he said he would retest blood every couple years, he advised not doing a gluten free diet at this time. I have read that some autoimmune issues can result in high tTG, she had been tested for juvenille arthritis about a year ago with normal results, has absolutely no signs of type 1 diabetes or thyroid but I am sure her pediatrician would be fine checking these things.

I am left confused and overwhelmed. At this point my hubby and I have decided to get a second opinion with another pediatric GI, possibly having her labs extended to a full celiac panel- maybe even my 4yo. (he had normal tTG)

We have agreed to do a 3 month gluten-free trial with her either way, just to see if her unexplained joint pain goes away, if she has any improvements in mood or behavior, etc. since she has no GI signs, it may be difficult to see things improving or not. (remember, we did not test her for any reason except I have it)

But even though I know making her gluten-free is the way to go, I still would like a GI who supports what I am doing and will help me along the way.

Is this a good way to go?

[GFinDC]

Well, like I said before, the testing is not perfect. It could be correct, and it could be wrong.

Endoscopic biopsy is not perfect either. They can only reach the beginning of the small intestine with a biopsy and there is lots of it they can't see or access. At least not without one of those pill cam deals. So, you are left wondering if they could see another 6 inches or two feet or three feet would they spot damage?. Maybe there is damage 10 feet further along? There is no way to tell from a test that can't reach that far.

Now there is a good test though. And that test is free and is not going to involve an invasive procedure or lots of money. And it has the best chance of a correct indication of any known test. That test is going gluten-free for 6 months and seeing if symptoms resolve or improve. I know which test I would choose.

[Mom-of-Two]

I wanted to post her pathology info that I got today:

Final Diagnosis:

A. Esophageal biopsy, no diagnostic abnormality. --- Three white fragments.

B. Gastric biopsy, no diagnostic abnomality. ----stomach, one tan fragment.

C. Small bowel biopsy, no diagnostic abnormality. ---Six tan fragments measuring together 0.6 x 0.2 x 0.1 cm.

Microscopic examination:

The small bowel biopsy has long delicate villi and shows a normal number of inflammatory cells in the lamina propria. There are no increased intraepithelial lymphocytes.

Clinical information: Rule out celiac disease.

Labs-

Transglutaminase IgA -- 78.20 <20 normal range

Transglutaminase IgG -- <20

Immuniglobulin A -- 190 (34-305)

[MitziG]

I think you have the right idea. Get the full panel done, then go gluten-free anyway. Much easier to do with a young child then a sneaky rebellious teenager!