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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Looking For Doctor In Baltimore, Md Area
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6 posts in this topic

I have been gluten free for almost a year now, but have had no positive diagnosis. I had one doctor (gastroenterologist) who didnt really listen and prescribed a drug called raglan- which "empties the stomach out faster" in his words.

I started to read up myself and decided to stop eating wheat, at which point my symptoms decreased and I started feeling better. The doctor accepted this and even though the blood test was negative prescribed me to believe I have wheat sensitivity and stick with it. Needless to say I dont want to return to him.

I have further deduced that it is gluten I am sensitive to as I have almost immediate reactions of bleching and cramps. Well, after joining this forum and reading and looking into the enterolab tests I find myself wanting a definitive diagnosis. I am wondering if there is a doctor not only willing to accept the results but possible insurance coverage for the tests?

I also am just interested in finding a good GP who not only understands the gluten thing but is sympathetic to some nutritional and non western approaches to healing. Any suggestions as to where to find one?

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If you're in Baltimore, the first place I'd try would be Johns Hopkins. Another possibility is the University of Md. Celiac Center for Disease Research.

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I am in College Park, MD. I asked the same question trying to find a specialist familiar with Celiac Disease. YOu'd think with Johns Hopkins and UMD theyd be easy to find, but nope. I've had horrible luck with docs here.

However, the local Celiac Support Chapter highly reccommends this guy:

Dr. Michael Epstein of the Digestive Disorder Assoc, Annapolis, Md. telephone number 410 224-4887 .... he can also be seen in Glen Burnie Maryland on Mondays or Wednesdays I think.

I am seeing him on the 19th, his next opening is in late August, but they said the other docs there are very familiar. Good luck.

Sara

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I'm in Rockville, and I had no trouble finding Celiac specialists at JH or U. of Md., but I did have to wait 10 weeks to see them! That was no fun, I'll admit. I'm seeing Dr. Alessio Fasano in July at the U.ofMd. Celiac Center, I'll post how that goes if anyone else needs the info.

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Thank you so much for the help! I really appreciate your responses.

I'm going to call both doctors suggested and

try to hook up with the local celiac support group.

thanks, julie

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Hi - I seem to have had the same problem about getting diagnosed....my

(ex)dr who is a gastroenterologist, basically said - "you're not losing weight so I wouldn't worry about it too much! Come back and see me in three years for a follow-up colonoscopy" Yeah! Riiiiiight!

Anyhow, I found a dr in Annapolis - Dr Suzanne Sankey of the Annapolis Gastroenterologist Assoc. 410)224-2116 (703 Giddings Ave. Suite M). She also has an office in Severna Park - if you're familiar with that area. The office phone number there is 410)647-5980.

The only problem is that Dr Sankey seems to be extremely busy; when I called for an appt last week, the earliest I can get in is 09/02! There are other drs in her office that I might have been able to get an earlier appt with but her name was listed at another website that I was reading about Celiac so I'm willing to wait. After all, I've already had the problem for a long time so 2 months more is not going to kill me (hopefully) :D

I too have started avoiding gluten and have started feeling much much better.

Hope this information helps you some!

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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