• 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   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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

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


  • Who's Online   9 Members, 1 Anonymous, 280 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
    Just a few years ago, Dickson dominated her peers nationally and won a gold medal at Canada Games for both pursuit and team relay. She also won silver in the sprint and bronze in the individual race. But just as she was set to reach her peak, Dickson found herself in an agonizing battle. She was suffering a mysterious loss of strength and endurance, which itself caused huge anxiety for Dickson. As a result of these physical and mental pressures, Dickson slipped from her perch as one of Canada's most promising young biathletes.
    Eventually, in September 2016, she was diagnosed with celiac disease. Before the diagnosis, Dickson said, she had “a lot of fatigue, I just felt tired in training all the time and I wasn't responding to my training and I wasn't recovering well and I had a few things going on, but nothing that pointed to celiac.”
    It took a little over a year for Dickson to eliminate gluten, and begin to heal her body. She still hasn’t fully recovered, which makes competing more of a challenge, but, she says improving steadily, and expects to be fully recovered in the next few months. Dickson’s diagnosis was prompted when her older sister Kate tested positive for celiac, which carries a hereditary component. "Once we figured out it was celiac and we looked at all the symptoms it all made sense,” said Dickson.
    Dickson’s own positive test proved to be both a revelation and a catalyst for her own goals as an athlete. Armed with there new diagnosis, a gluten-free diet, and a body that is steadily healing, Dickson is looking to reap the benefits of improved strength, recovery and endurance to ramp up her training and competition results.
    Keep your eyes open for the 20-year-old native of Burns Lake, British Columbia. Next season, she will be competing internationally, making a big jump to the senior ranks, and hopefully a regular next on the IBU Cup tour.
    Read more at princegeorgecitizen.com

    Jefferson Adams
    Celiac.com 04/25/2018 - A team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. The research could be helpful for treating type 1 diabetes, lupus, and celiac disease.
    In autoimmune diseases, such as type 1 diabetes, lupus, and celiac disease, the body’s immune system mistakenly attacks healthy cells and tissues. Autoimmune disease affects nearly 24 million people in the United States. 
    In their study, a team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. They found that E. gallinarum triggered an autoimmune response in the mice when it traveled beyond the gut.
    They also found that the response can be countered by using antibiotics or vaccines to suppress the autoimmune reaction and prevent the bacterium from growing. The researchers were able to duplicate this mechanism using cultured human liver cells, and they also found the bacteria E. gallinarum in the livers of people with autoimmune disease.
    The team found that administering an antibiotic or vaccine to target E. gallinarum suppressed the autoimmune reaction in the mice and prevented the bacterium from growing. "When we blocked the pathway leading to inflammation," says senior study author Martin Kriegel, "we could reverse the effect of this bug on autoimmunity."
    Team research team plans to further investigate the biological mechanisms that are associated with E. gallinarum, along with the potential implications for systemic lupus and autoimmune liver disease.
    This study indicates that gut bacteria may be the key to treating chronic autoimmune conditions such as systemic lupus and autoimmune liver disease. Numerous autoimmune conditions have been linked to gut bacteria.
    Read the full study in Science.

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Dang, Gemini.    I have to stand corrected about anticholinergics (e.g. Benadryl). A new study released states that only certain types of anticholinergics might cause dementia.   https://www.medicalnewstoday.com/articles/321632.php Sigh.  So hard to keep up and I am not even trained in anything medical (except for CPR and First Aid!)  
    • Thank you so much for your very well thought out answer.  You're right, I'm just going wait 12 weeks because although I feel like crap, it is not horrible like I know it is for some people. How anemic were you? I ask because I have had low iron on and off 12 ferritin (22+ normal) 37 iron (normal 50 and above), and 10 transferrin saturation (14 is normal) have been my lowest.  I know this is not crazy low and what happens is I do respond to iron pills. After a year of taking iron my levels became normal again, so the dr. advised me to stop taking the pills and within 6 months my levels dropped below normal again.   I had to start taking  iron again and now my levels are back to normal. The doctor said she would do an endoscopy if I didn't respond to the iron and clearly I have.  But the thing is I know if I quit taking the iron again my levels will just drop. This has been going on for two years lol and Kaiser doesn't really think it's abnormal. I guess my question is would someone with celiac even respond to iron pills, or would it just stay low?  Thanks so much!  I've been kind of a  lurker on here for awhile and have noticed you are always so helpful!! 
    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
  • Blog Entries

  • Upcoming Events