Tmi Stool Question

[jomakamcki]

I posted about a month ago about my 4 year old with possible celiacs. All of her bloodwork for celiac was negative, but her IgA level was a little low (she was 53, the lab said normal was 61-345). Also her ESR, sedimentation rate, was slightly elevated (her's was 12, the lab said normal was 0-9). Her tTG was also normal (her's was 2, the lab said normal was 0-19). Based on these numbers the ped GI gave us a calendar to fill out with her pain level and to also mark things like vomiting or diarrhea. We did this for a month and saw him again on Tuesday. He ordered a stool sample, her stool is always soft and floats, and scheduled us for a scope next Thursday. The GI told us floating stool can be caused by high fat content, but the results showed her fat content to be normal. I also noticed her stool seems to have mucus in it, and an oily film around it, but all the stool tests came back negative/normal.

So here is my question...With all her tests (blood and stool) coming back normal, what are the chances she has celiacs? Is a scope necessary? I guess it seems to me the likelyhood of her having celiacs are pretty low so I don't want to put her through the scope if it isn't needed. Would you (or have you), as parents, do the test based on her lab results?

For a little back story, we took her in originally because of chronic stomach pain and random vomiting and/or diarrhea every so often (maybe a handful of times a month). She is tall and thin, so no signs of malabsorption. She has a paternal great uncle with celiacs, and her maternal grandfather has the skin rash associated with gluten intolerance, but does not have celiacs.

Thoughts? Suggestions? Do you think the scope is needed?

Thanks in advance!

[Mom2J112903]

Yes I would and have done scopes on my child because of GI issues. Based on your daughter's symptoms, a scope will provide lots of answers. Are they doing BOTH an endoscope AND a colonoscopy?

[jomakamcki]

Yes I would and have done scopes on my child because of GI issues. Based on your daughter's symptoms, a scope will provide lots of answers. Are they doing BOTH an endoscope AND a colonoscopy?

No, they are only doing the endoscope. Her tender points (when he presses on her) are all upper quadrant. The GI called yesterday and said she does have elevated split fats in her stool. I have no idea what that is though. He said the scope was not "essential", but with her various, slighlty off, lab/stool tests he feels it would be "beneficial", especially with the family history. So, we are scheduled for Thursday. Hopefully we will finally have some answers!

Thanks for your input!

[GottaSki]

Welcome!

Given that she has Celiac Disease on both sides of her family along with digestive symptoms and inflammation detected - it seems prudent to rule out Celiac Disease. The endoscopy is not a bad idea as it could give you the answers you are looking for -- make sure the doctor takes at least 6-8 samples of the small intestine for biopsy. Some GI's only take one or two - Celiac damage can be spotty - thus difficult to get an accurate sampling - one is not enough. In addition to biopsy, I'd make sure she has had all possible blood work.

The tTG may be inaccurate because your daughter's Total IgA is so low. Do you know if she had a full celiac panel or just total IgA and tTG IgA? It is important to check IgG levels in those with low total IgA.

Here is a full celiac panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

You mentioned your daughter is tall and thin so she doesn't have malabsorption problems. No one in my family had short stature as a symptom of Celiac - IMHO short stature is one of the symptoms that too many doctors think is a must have component of celiac -- there are many varied symptoms/presentations of celiac -- which is one of the reasons many doctors do not consider it as often as they should. I would check for low vitamins/minerals regardless of height and weight as they can indicate your daughter is not absorbing nutrients properly.

My Celiac Doc ordered these at diagnosis and repeats annually:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Upon completing the testing you choose, a gluten trial could be the best test for your daughter.

I know it can be tough given that Celiac testing is not clear cut - hang in there!

Good Luck to your family

[GFinDC]

...

For a little back story, we took her in originally because of chronic stomach pain and random vomiting and/or diarrhea every so often (maybe a handful of times a month). She is tall and thin, so no signs of malabsorption. She has a paternal great uncle with celiacs, and her maternal grandfather has the skin rash associated with gluten intolerance, but does not have celiacs.

Thoughts? Suggestions? Do you think the scope is needed?

Thanks in advance!

I am curious about the maternal grandfather with a non-celiac gluten rash. Sounds a bit odd. Dermatitis herpetiformis is the skin condition that some celiacs get. It is diagnosed by taking a bipopsy next to a lesion.

Since the scope is already scheduled, I'd go ahead with it. But do put her on the gluten-free diet regardless of the results. At least 3 to 6 months gluten-free is needed for a good evaluation. Our bodies are the best test meth9od available.