• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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
0
maggiesimpson

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

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,922
    • Total Posts
      943,520
  • Member Statistics

    • Total Members
      67,128
    • Most Online
      3,093

    Newest Member
    Chris Smiles
    Joined
  • Popular Now

  • Topics

  • Posts

    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.


      http://udisglutenfree.com/product-category/pizza-crust/
      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      https://www.califlourfoods.com/collections
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
    • My MRI has been clear. They did a spinal tap back in May which was also good.  MS ruled out many times. All my symptoms match Gluten Ataxia, but I don't know for sure since I don't have a dx. However, I DO have Hashimotos so at least going Gluten Free is necessary for that. I go to my Rheumatologist on Jan. 30th, 2018. Can a Rheumatologist determine Gluten Ataxia? If so how long should I be back on Gluten for testing?  Thanks for the heads up on Free and Clear products. I will look into that.
  • Upcoming Events