My daughter is 21 and I am 42. On 11/21 we are having colonoscopies and endoscopies together. She is on a plethora of medications for dysautonomia.
The GI seems to feel that she/we have the same issues with our GI system and arthritis. Does anyone out there know if you test negative for IGa, IGg and TTg, does this mean there is no possibility of Celiac? The other labwork shows some malabsorption with B12 and Folate. If this all comes out okay, what do we do next? It's okay for me to have chronic diarrhea and arthritis because I am older and have been dealing with this awhile, but I cannot imagine how awful it would be for my daughter.

--the usual figure given is that up to 20% of individuals with biopsy-proven Celiac dysfunction of the intestinal villi have negative Celiac panel bloodwork. So it's possible that she does have that issue, or at least gluten sensitivity, if not full-blown celiac.

Other people more expert than I will come respond to you, but in the meantime take a good look through The Gluten File (at the top of this board, in the Useful Websites section) and go through the diagnostic section--lots of good info there on this topic.

Do you know if they ran the antigliadin (AGA) antibody tests? They generally omit them because they are not as specific to the intestinal damage seen in celiac disease as the newer anti-tTG test, but a positive antigliadin antibody test can indicate a degree of gluten sensitivity, even if not celiac disease.

As Glenn mentioned, up to 20% of those with biopsy proven celiac disease have negative antibodies, so it is possible to have a positive biopsy despite negative blood work.

The symptoms, arthritis and diarrhea, might very well be related to gluten or other food sensitivities. In the gluten file, you might want to read the pages on Diagnostics, gluten sensitivity vs. celiac disease, antigliadin antibodies, At Risk, food allergy, IBS, and anything else that fits. Rheumatoid arthritis is covered on the "other autoimmune disease" page.

Even if everything comes back negative, I hope you will consider a dietary trial of 3-6 months (longer the better) to see if you get symptomatic relief. Many, many people do, sometimes even when the lesser antigliadin antibodies are negative. Sometimes other food intolerances might be involved... you might want to consider IgG food allergy testing (labs can be found on the food allergy page in the gluten file.

Cara

Thank you both so very much for the information. I feel as if people do actually care! We are both having endoscopies and conoloscopies on Wednesday. If the doctor finds Celiac Disease, it's all okay...

Good luck on the procedures! I'm assuming if they ran the blood tests for celiac disease, they will be doing a biopsy. An endoscopy does not necessarily include a biopsy, though, so just don't let THAT happen to you!

I don't know how I browsed past the B12 malabsorption without commenting. A mild b12 deficiency all by itself can cause dysautonomia, diarrhea, and even arthritis type symptoms. Has anything been started to supplement B12/ folate?

Cara

We have not started anything yet as far as supplements go. We asked and the doctor said to please wait until she biopsies everything (tomorrow) and then she will tell us what to do. We had to jump through a hoop to get my daughter's endoscopy/colonoscopy approved from the cardiologist.

Sounds like a fair plan to get all the information in. I hope you will find some answers, and don't immediately dismiss the possibility of gluten sensitivity even if the biopsy comes back normal.

Do let us know how it goes, and the results when you get them.

Cara

Okay so we did the EGD/colonoscopy on the day before Thanksgiving. The doctor said to go home and enjoy Thanksgiving and she will see us on December 3rd with the biopsy results. She also said that my daughter's colon was inflamed the entire length, and that we both had hernias. Mine showed old scars and new lesions from colitis. I think my daughter's fevers and joint pain are coming from colitis. The doctor didn't say anything about the small intestine, as she is waiting for the biopsy reports...

Let us know the biopsy results when you get them. I'm sure you are relieved to have the procedures behind you! (no pun ) I hope they went well.

You might find some of these references of interest....


IBS, IBD, Crohn's

H.Pylori,Colitis, Gastritis

Other Autoimmune Disease ~
Addison's, Liver, Kidney, Colitis, Gastritis, Psoriasis, Rheumatoid Arthritis, Lupus, Sjogrens, Sarcoidosis, Thrombocytopenia, Vitiligo, Alopecia Areata

Cara