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Follow Up Care?
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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.

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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.

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    • Acne are not itchy or only mildly itchy and they look like red bumps with or without white centers. The bumps are quite separated from each other. What did you start to eat after going gluten-free? More fruits and sugary foods? This can trigger acne.  http://www.ehealthstar.com/conditions/acne-vulgaris Dermatitis herpetiformis can be very itchy and the bumps are more close together and they tend to crust over.  
    • What about Xanthan gum?  It really bothers me, so I avoid most commercially processed gluten-free breads, etc.  Never bothers my hubby though.  
    • I use to get them before I went gluten-free.  I stopped eating oats because it also does give me canker sores and causes my toes to get cracked underneath.  
    • I had quite a few of the medical problems that you have before I figured out that gluten was the problem. I can’t do basic math or writing when I eat gluten also I get depressed, irritable, low energy, etc. The best route to go is to do an elimination diet and monitor how certain foods affect you. I eliminated MSG (Monosodium Glutamate), Nitrite, and oat based on the reactions that I get once I consume them. You must be disciplined on a gluten free diet, there is not such a thing as –It is just one cookie! If you can manage to go 100% gluten-free for three weeks and you see those problems going away, you will have a good idea if that is the cause of your problems. The blood test I did after being gluten-free for two years came back negative so the doctor just make me feel that I was crazy and making things up. I have a stool test done which came back with elevated igA also a gene test indicating I have two genes that code for gluten sensitivity. My lactose intolerance went away too, eating a lot of cheese now. Rash in arms? gone, Brown spots in teeth? Gone, Intestinal noises? Gone, Lack of bladder control? Gone, Constipation? Gone, and a lot others.   
    • Oh you're most welcome!  Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
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