Do I Have Celiac?

[thepeach80]

Weird mish mash of questions, so bear with me please. I don't remember when sx started, first bad sx started in 2007 around my daughter's first birthday. Went gluten-free, easy enough as we were doing a gluten-free trial for my son then too (3 of my 5 kids have had wheat issues in infancy/toddlerhood) sx went away. Came back randomly, dx with IBS in 2009 and it went on for weeks. Had had blood work in early 2008 for Celiac, but have no idea what they tested for or what the results were other than they said negative. Have done on and off wheat free (they could handle oats) diet from 2005-2010. My father has worsening Crohn's and aunt has Fibro. Seem to have a strong hx of gastro issues as well as allergy issues in my own children.

 

Had gallbladder issues in 12/2012. Saw GI 1/13 who recommended scope as he wasn't sure based on my sx it was gallbladder, or at least that wasn't all of it. Ended up having gallbladder removed 2/13, 5 days before scheduled scope. Ended up having scope 5/14 showing moderate damage to stomach lining and intestines leaning towards Celiac. Followed it up with tTG testing and was told it was negative and I did not have Celiac. I decided to go gluten free anyways last June and haven't looked back. I can tell a marked difference when I accidentally have gluten now. Things I lived for for years that I didn't think twice about until I stopped gluten. Anyways, tTG was 5. I don't know if I've had any other blood work besides that or not, the anti-gliadin etc. 

 

All of that, would you feel comfortable saying Celiac is the diagnosis? What about the kids, at least the older ones. They are 11, 9, 7, 5, and almost 2. Talk to their ped about testing via blood? I read there's a University of Chicago link I should check, correct? Is there a difference in testing them if I'm not Celiac vs just sensitive? I'm assuming so.

[cyclinglady]

It sounds like you have Celiac.

You can ask the doctor for copies of all your labs. It is important to keep track of them.

Talk to your Ped about your endo results and improvement with the gluten-free diet. Perhaps test only those kids with symptoms to start?

Anemia was my only symptom for celiac disease. My husband is not diagnosed formerly and has been gluten-free for 13 years. We did not test my daughter until we were sure the Affordable Healthcare Act was really in place since we are self-employed and did not need her to be uninsurable, like I was. She had no symptoms, no anemia and her CDs tests were negative. She will get re-tested every few years. So, there is no huge rush to test your kids if they do not have symptoms.

[thepeach80]

I just realized my GI now has a patient portal so I can I have access to my past blood work. I just signed up and sent a message to add my past blood work on there so I can see what I've been tested for and the results. Is it worth doing the gene testing on myself and the children? I have 2 kids I am more concerned about than the others.

[cyclinglady]

The gene test is a good tool used to rule out celiac disease when celiac disease blood tests or biopsies are inconclusive. Some 30% of folks carry the genes, but only a small amount (less than 1%??) develop celiac disease. You can see that just the gene test is not very helpful.