Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


maggiesimpson

Recommended Posts

maggiesimpson Apprentice

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



SarahJimMarcy Apprentice

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.

maggiesimpson Apprentice

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.

maggiesimpson Apprentice

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!

SarahJimMarcy Apprentice

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!

  • 4 weeks later...
maggiesimpson Apprentice

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.

SarahJimMarcy Apprentice

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty commented on Scott Adams's article in Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease
      2

      Could Gluten and Alzheimer’s Be Linked? New Research Uncovers Surprising Protein Parallels (+Video)

    2. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,834
    • Most Online (within 30 mins)
      7,748

    SamAlvi
    Newest Member
    SamAlvi
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.