1 reply to this topic

[DutchGirl]

I was diagnosed with Celiac Disease about 4 weeks ago. My GI Doctor sent me a letter that my biopsy results came back showing that I have Celiac Disease and that I should begin a strict gluten free diet. Luckily I do a lot of reading so I've read up on how in depth my gluten free diet needs to be. But do I require any follow up care? Should I be seeing a doctor regularly for Celiac Disease? I feel like they gave me this diagnoses via a letter and then sent me off on my own.

[IrishHeart]

Unfortunately, that's just about all the advice I got -- "just go gluten free and dairy free for the first six months". If I had not been my own advocate, I'd have never resolved my Vitamin D, B-12 and Folate deficiencies. I just kept going back to him and saying "test me for this now, please". and he did. Then, I found  a celiac-savvy GI doc and he was so upset at how long it took for me to be DXed and the lack of follow up care, that he insists on seeing me every 5 or 6 months. I had major complications from celiac disease and he did a barium follow- through study and tested me for Crohn's, IBD and checks my CBC, CMP, Thyroid, iron etc. every 6 months. In the fall, he is going to biopsy me.

Is all of this necessary? Probably not, but I was complicated..

Here is what Dr. Peter Green thinks about it:

"What annual follow-up care should the celiac patient be getting?

The most important thing is a good physical examination. Blood work, x-rays, CAT scans, mammograms and PSA tests, while valuable, do not replace a physical examination. The physical exam should include a breast exam for women, prostate exam for men, and a rectal exam for everyone. Blood work should include measurements of folic acid, calcium, and iron, and antibodies testing. Bone mineral density testing should be repeated annually for those with abnormal results, and every several years for those with normal results. Finally, patients with celiac disease should have at least one follow-up biopsy to confirm response–normalization of the biopsy sample. Patients who are non-responders, or whose clinical situation is somewhat confusing, may need more repeated biopsies at intervals."

 

FWIW, The book, Real Life with Celiac Disease by  by Melinda Dennis and Daniel Leffler

covers everything, including follow up care. I highly recommend it. You may want to get a copy.