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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? - 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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maggiesimpson

Anyone Seen Dr. O'Reilly At Maplewood Endoscopy Center & Clinic?

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Based on the responses to my first post in these forums with you wonderful people, and my own gut feeling (no pun intended), I decided to seek a second opinion on my celiac diagnoses. In my other post I had said that my primary doctor only tested my metabolic panel and TTG. The panel was normal, and the TTG was <1.2 I believe. I have been doing my own research and following path after path of info. I have questions on things I found there, but that is for another post.

Anyway, I was fortunate enough to book an appointment this coming friday. Otherwise I would have had to wait another month or two. Thank God. I figured that they may want me to be eating gluten to do any testing, but I came across some info stating that if you've only been gluten free for a short time they may still be able to test you. I was gluten-free for 3 1/2 weeks. Last night I went to a Hibachi (gluten everywhere!)and tried to be mindful of how much I ate, so I would not stuff myself and could pay attention to my body's response to the food. Shortly after starting to eat I could feel something going on in my gut. By the end of the meal I was horribly bloated, crampy, in quite a bit of pain, and gassy. I was embarassed to say anything to our friends, so I sucked it up all night when all I wanted to do was curl up in a ball on the comfort of my own couch.

Has anyone seen Dr. O'Reilly or been to the Maplewood location of Minnesota Gastroenterology? I really hope I don't have to eat much more gluten, but I really have the nagging feeling that I need a definite answer to my health issues. It is such a relief to be going to see a specialist who should be more knowledgable on the matter than my primary doc. I just hope really listens and cares enough to seek out answers. Thanks in advance for any feedback anyone gives me. :D

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It's great that you are going to get tested. I think listening to that nagging feeling is really a wise idea.

We have had mixed results with MNGI. My daughter saw Dr. Kennedy at the MNGI pediatric clinic on University. She did the blood test, it was positive, so onto the endoscopy, which was positive. For me, I went around years and years to different doctors. MNGI was one of the stops. The doctor I saw in 2005 wanted to do a colonoscopy. (I didn't do it.) Then, this year, I was in for colitis. Of course they called for another colonoscopy. This time I had to do it and they found nothing. My celiac blood test was negative. They didn't do an endoscopy. But they DID, finally, do genetic testing. That came back positive.

What I am trying to say is that you may have to push for celiac testing. I have had other doctors call MNGI "a colonoscopy factory". Since that won't give you a diagnosis for celiac, push for celiac testing first! While you would think that a gastroenterologist would have more knowledge than a primary care doctor regarding celiac, it doesn't seem to be the case.

I hope this is helpful. Please let me know if you have other questions and how it goes on Friday.

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Thanks for your reply. I did tell them when I scheduled the appointment, but I will be sure to make it clear with the doctor. Over the years I have found my "gut brain", as my holistic nutritionist calls it, to be very accurate. Seeing a new doctor always makes me a little nervous because I have had such a hard time finding one who will actually listen to me without thinking I'm overreacting or something. Have my fingers crossed. I'll let you know how it goes. Thanks again.

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So, I had my appointment with Dr. O'Reilly on Friday. The entire staff at the Maplewood location of MNGastro was amazing. I have gotten so used to doctors talking down to patients like they are above us and they make decisions about our healthcare. Everyone here talks like your equal, or your partner. It was so nice to have someone work "with" me to find out the problem and discuss what they would like while listening to my own views. I'm just really excited to have had such a positive medical experience. It seems like they are too few and far between.

My own primary doctor sort of dismissed me in regards to celiac. She only ran one blood test without one that should be run with it. Then, after a negative result and my explaining my symptoms during the time I had to "load up on gluten", she just said that I had celiac. It sort of felt like she gave me the diagnoses because she thinks that's what I want it to be.

Dr. O'Reilly did do a list of bloodwork, and I am doing a lactose intolerance test soon. He wanted to look at a broad range of possibilities, so we wouldn't miss it if celiac is not what's wrong. You are right about the colonoscopy. lol. If the tests indicate any reason to do a biopsy, then I will have both a colonoscopy and endoscopy done in one appointment to look at both ends of the small intestine. I really hope he is able to help me determine what is behind my digestive issues, so that I can work on healing properly and start feeling better. Now I wait for the bloodwork, and the lactose testing once I am able to administer that and see what comes next. Fingers crossed for some answers!

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So glad to hear! Next time I have to go back, I'll ask for Dr. O'Reilly. Please keep me updated on how all the tests come in. Here's to getting better!

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I wanted to follow up with you. My labwork all came back "normal", however my TSH was a little too high for my optimal functioning. (If that makes sense) I assume it is because my digestive problems have worsened this year. The dose for my thyroid meds have been consistent for the last couple of years, so for it to change means that I'm not absorbing it as well. They basically ran a routine blood work-up. I also did the hydrogen breath test for lactose intolerance which came back normal. The only celiac related test was supposed to be total serum Iga. He forgot to order it. Unfortunately, by the time I received my test results it was a Friday night after the clinic was closed. Dr. O'Reilly was on vacation for 2 1/2 weeks, so I had to wait until a few days ago to follow up with him.

I go in for the celiac bloodwork this week. He seemed content with only running that one, since I have been gluten free as per my primary doc's diagnoses and orders. She only ran one test, Ttg Iga. Anyway, I am scheduled for biopsies of my small intestine by colon-/endoscopies in 2 months. I decided myself to go back on gluten until then. I'm afraid that if I stay gluten-free for another 2 months, any possible damage that occurred this year may heal by then. That is if there is any damage. Dr. O is ordering these not just to check for celiac, but to check for whatever is causing my problems. He agrees that something is going on, and he wants to help me find an answer so that I may improve my quality of life.

I anticipated a colonoscopy as a probable test after what you said about it. Decided I might as well since something's wrong and it's been 8 or 9 years since my last one. Ha ha... I'm not even at the typical age for routine colonoscopy screenings and I'll already be getting my second. Just find it funny since my coworkers are much older, and I'm the one who gives them advise about it. At least I know what to expect from the prep. In my opinion, that is the worst part. This time I know to stay at home and make my bathroom comfortable and loaded with things to entertain myself. lol.

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Good to hear you are making progress! I hope going back on gluten for a few months isn't too hard on you. (Also, the colonoscopy.)

I had the genetic test done (through MN GI Maplewood) which came back positive. Surprisingly, my insurance company covered the test. So if you still aren't finding answers, that might be something for you and Dr. O to consider.

Thank you for the update and please let me know what you find out!

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