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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.

Doctor In Oklahoma City?
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13 posts in this topic

I had a Celiac Sprue test done by my GI doctor and he said it came back negative. He said it's IBS but I don't think so. I've been in constant pain for two months now. I have lyme disease and many lyme patients are gluten intolerant.

Is this test 100% accurate?

Anyone know of a good GI doctor (or any doctor) in OKC that knows about Celiac disease?

Thanks!

Gary

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I had a Celiac Sprue test done by my GI doctor and he said it came back negative. He said it's IBS but I don't think so. I've been in constant pain for two months now. I have lyme disease and many lyme patients are gluten intolerant.

Is this test 100% accurate?

Anyone know of a good GI doctor (or any doctor) in OKC that knows about Celiac disease?

Thanks!

Gary

Hi Gary! I'm from Norman so it is nice to see others from Oklahoma. I am new to this as well I wish I could be of more help with doctors and such but I did want to say hi.

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I had a Celiac Sprue test done by my GI doctor and he said it came back negative. He said it's IBS but I don't think so. I've been in constant pain for two months now. I have lyme disease and many lyme patients are gluten intolerant.

Is this test 100% accurate?

Anyone know of a good GI doctor (or any doctor) in OKC that knows about Celiac disease?

Thanks!

Gary

Hi Gary Im from okc too, im only 3 weeks in to gluten free, i went to the dds they also told me it was ibs, they pretty much blew me off, ilm on the same mission right now trying to find a doc...good luck ill let u know if i find someone

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Hi Gary Im from okc too, im only 3 weeks in to gluten free, i went to the dds they also told me it was ibs, they pretty much blew me off, ilm on the same mission right now trying to find a doc...good luck ill let u know if i find someone

I am from a small rural town south of okc, and I am looking for a good doctor knowledgable about celiac. I visited by family doctor today and got nowhere. Have you been successful in your search for a good doctor in OK?

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I had a Celiac Sprue test done by my GI doctor and he said it came back negative. He said it's IBS but I don't think so. I've been in constant pain for two months now. I have lyme disease and many lyme patients are gluten intolerant.

Is this test 100% accurate?

Anyone know of a good GI doctor (or any doctor) in OKC that knows about Celiac disease?

Thanks!

Gary

I am also looking for a good dr in the central OK area. My GI doctor did a biopsy suspecting Chron's but it came back with Celiac. My blood test was negative, and from what I have read there is a change of negative blood tests and if Celiac is still suspected then they should do a biopsy. However you should talk to your dr to see if you chould be gluten free or if you need to still consume gluten in order to get accurate test results.

While my dr seem to be pretty good and diagonising, I am having issues with communication. His nurse called to tell me that biopsy showed Celiac, didnt give me any other information and that was it. I dont see the dr until Sept 15, so I am a little upset that I have to naviagte this on my own for now.

Good luck to you all!

Alysia

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I am also looking for a good dr in the central OK area. My GI doctor did a biopsy suspecting Chron's but it came back with Celiac. My blood test was negative, and from what I have read there is a change of negative blood tests and if Celiac is still suspected then they should do a biopsy. However you should talk to your dr to see if you chould be gluten free or if you need to still consume gluten in order to get accurate test results.

While my dr seem to be pretty good and diagonising, I am having issues with communication. His nurse called to tell me that biopsy showed Celiac, didnt give me any other information and that was it. I dont see the dr until Sept 15, so I am a little upset that I have to naviagte this on my own for now.

Good luck to you all!

Alysia

did you every find anyone? and who was your dr? that sounds about like our experience. i'd really like to be able to find someone who is knowledgeable on this to help us navigate this!

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I'm in same boat in Norman! I wonder how many of us there are.

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There has to be a physician somewhere on the OKC area familiar with celiac disease / gluten intolerance and nutritional issues related to these disease processes. I am 49 and have had severe problems off and on depending on my diet. I've been gluten free for over 6 months and all the gross symptoms have resolved. However I continue with the others such as chronic fatigue and have been basically blown off with go see a psychiatrist for depression or it's IBS deal with it. The funny is I'm a psychiatric professional lol! Let me know if anyone has luck finding a physician!

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I'm in same boat in Norman! I wonder how many of us there are.

I'm from norman also. And like many of you dealing with this on my own so far. I have yet to find a dr other than my dentist willing to listen to my concerns. I am preparing to go Gluten-Free but was hoping for some validation before doing so. Although, I am hoping that my GYN will listen even though this is not their specialty but this disease does affect fertility, hormones, cysts etc...so I am hoping he will listen and order the tests. It is good to see others here in the same area that I am in!

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I am in Edmond. Looking for a doctor for our daughter, 8 years. So far we have seen our family doc, allergist, and a pediatrician recommended by a celiac friend. So confused by her symptoms that seem to be celiac after doing my own research, but docs say no (she should have diarrhea not constipation; thin not weight gain). If anyone finds a good doc in OKC please post!

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Hey guys, just a thought. I am in NYS but I saw this thread and I know if you call the nearest Celiac Support Group and ask them--they usually have a good celiac-savvy GI doc on their advisory board.

this info may be outdated (I found it here on c.com) but there may be forwarding info.

Oklahoma

Norman - Resource

Contact: Kate Martin

Norman, OK

Tel: (405)364-5612

email: one4life@swbell.net

Internet: http://katesceliac.blogspot.com

Oklahoma City - Support Group

Contact: Heather Cline

Oklahoma Celiac Sprue Support Group (CSA)

1403 Classen Drive, Oklahoma City, OK 73106

Tel: (405) 235-1715

E-mail: HMCline@aol.com

Internet: http://www.OKceliac.com

Hope this helps!

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I am in Edmond. Looking for a doctor for our daughter, 8 years. So far we have seen our family doc, allergist, and a pediatrician recommended by a celiac friend. So confused by her symptoms that seem to be celiac after doing my own research, but docs say no (she should have diarrhea not constipation; thin not weight gain). If anyone finds a good doc in OKC please post!

Did you ever find a doctor? I live in Edmond as well and by process of elimination found Dr. Susan Redwine. She is so savvy in regards to Celiac. Literally changed our lives. My kids are 8 and 6 and both have celiac

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We live in Oklahoma.  A couple years ago, we discovered Faye Elahi, a nutritionist located in Plano, Texas that is an authority on gut issues.  After an affordable phone consultation with Faye, we received testing kits through the mail.  UPS returned the kits and specimens to Enterolab in Dallas, Texas.  Within days, we were positively diagnosed for having gluten sensitivity and other food allergies. (We received a copy of our test results via email.)  We also learned, due to the food allergies, that we were very malnourished.  After adjusting our diets (it isn't as difficult as we first thought), and taking various supplements, we feel like different people.  

 

Faye has a couple websites that may enlighten you:  www.specialneedsnutrition.com and www.glutenfreenutritionforlife.com.  She also has an informative book that may be purchased from Amazon.com.  It's titled: Ready, Set, Eat!  Gluten-Free Nutrition Basics.  Enterolab also has an informative website at:  www.enterolab.com.   Read the Testimonials.  

 

We learned that stool testing is the most reliable type of test.  Enterolab sends the kit and the discrete return packaging directly to your home.  It is best to consult a nutritionist, such as Faye Elahi, for ordering the appropriate test and for interpreting the test results.  By the way, some insurance companies recently started covering part of these tests!!  Yippee!!  

 

I can't express how thankful we are to have found a nutritionist (Faye Elahi) that has had similar dietary issues as ours.   Not only is she knowledgeable, but she is very kind.  I'm confident she may have saved our lives.   

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    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
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