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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
bonnie blue

Entocort Prescribed But I Am Unsure.....

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Dear friends,

I am needing some wisdom and advice here. I went to a new gastro doc today, and he prescribed Entocort 9 mg a day. Now here is why I am confused, I was diagnosed in September of 2010 did ok then got sick again in December, after many months of doctor visits and tests, we took all the steps in our home to be completely gluten free, even the dogs!!! I dont eat out or eat from other peoples kitchens, started on probiotics and my amazing B12, and basically we just eat very healthy and natural. I went back to work, my energy level isnt what it used to be, but getting better, the pain is pretty much gone, the big D still sometimes shows up, but nothing like before. The reason he is worried is my weight loss, I have lost 93 lbs in 11 months, now mind you the biggest percentage of this was when I was really sick, I am still losing but moderately, I am not underweight, I personally think I look good, but after today he said the weight loss is still a concern, and he wants to put me on Entocort, I told him I was already on this in March, and didnt do well with it, but he kept on and on about the weight loss and how I need to eat more, I told him I was eating 6 small meals a day, because it worked well for me. I do eat but I just dont eat all the crap anymore!!! I basically walked out of the doctors office completely in shock, I finally after many months feel good, and then basically he tells me I'm not ok. Someone help, I do not want to take this drug, I have done so well just going all natural, I am finally feeling good, why would he say this to me? Am I crazy or does sometimes going to the doctor make you feel worse after you see them.......

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This is a new doctor. What was the purpose of the visit, from your point of view ? When a doctor sees a patient, they typically assume that they have come to them for some sort of prescription, whether or not that is true.

More concerning is that you told him you've done this drug before, didn't do well on it, and he's still pushing it.

Entocort(Budesonide) is a prescription glucocorticoid steroid for the treatment of Crohn's disease. Have you been formally diagnosed with this, or just celiac ?

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This is a new doctor yes, my surgeon recommended him, I was just basically going in for a new patient consultation, no issues just a meeting to let him know that I was there, and I needed a new gastro in case there was issues. My GP sent all his notes saying he was happy with my progress, and I went in feeling great and left feeling very unsure.

And no I dont have Crohn's disease, the only other diagnosis is severe gastritis and they treated that with Omeprazole.

I kept saying to him wouldnt there be some weight loss with the fact that I was eating so much better, truthfully I used to eat alot of fast food and was overweight, and now I eat a healthy diet, but he just kept plugging the Entocort, I am finally feeling good, and I tried to tell him that but he just kept on and on about the weight loss. So confused :unsure:

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Please remember that physicians give advice. Handing you a prescription is far from an order forcing you to take it. You have every right to decline to take the advice given. No one knows your body better than you.

I agree that I would be even more concerned that your doctor prescribed a drug not appropriate for your diagnosis, and one that has not worked well in the past. A medical license does not make someone a good listener or incapable of making a mistake. This might be a great indicator of the need to find another specialist. I would be quite hesitant to return for any complex issues with the apparent lack of understanding on a simpler one like weight loss.

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Maybe the doctor was concerned and thought you might have this type of persistent celiac, where the gut does not heal despite of going gluten free. Steroids are known to help with this condition.

If you truly have refractory celiac disease, this is dangerous and it should maybe be treated with steroids or something else.

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My gastro consistently harped about my low body weight. My FP (female) told me she thought I looked good and that tons of women in her practice would pay good money (with gastric bypasses, etc.) to be as thin as I was.

I'm putting on weight now, but it's been 15 months gluten-free. I think my gastro will be happy. I'm not sure if I am. :D

Another thing with doctors is that it seems like they need to have closure for the office visit. They need to prescibe something. Sometimes we need to direct them. Like "Can you just check by B-12 and Vitamin D levels instead, because that drug doesn't work well with me."

That said, I told a specialist that I wouldn't take Lyrica and not only did I accept samples of Lyrica but she called in a prescription to my pharmacy and they keep calling me to tell me that my rx is ready for pick up. I haven't taken the samples and I won't pick up the rx.

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