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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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    • Welcome!   I am confused.  Did you have a negative celiac blood test or a negative biopsy (taken via endoscopy)?
    • In addition to cheese made with yogurt, hard cheeses like cheddar, romano, parmesaen etc are also going to be lactose free. Eggs are also a good source of protein if you eat them. Do bear in mind that celiac can really mess with your head. It can cause depression and anxiety that can get worse for a short time when you first go gluten free. your life is not over by any means. The reason why you see more people on boards and in forums that are having problems is because most when they heal go on with their lives. We don't hear from them with the exception of a few that stick around to help people that are still struggling. Hang in there it will get better.
    • You are sick.  Depression and anxiety are symtoms of celiac disease (and many other illnesses).  It is hard now to look forward and imagine a great life, but it is possible.  I think you are already in the thick of the grieving process right now.  Reaching out to this forum can be very healing emotional (it is not just all common sense advice about gluten-free food!).  I did not say not to exercise, but to do it gently.  This is not the time to train for a marathon or triathlon!   The SCD Lifestyle site....it is all about the money.  Seriously.  They are selling a book. 
    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
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