My First Trip to a Gastroenterologist

GI

I have been wanting to get this story off of my chest for a while! Alternative titles ideas for this post included, “Why I did not become a Gastroenterologist,” and, for my M.D. friends, “Some females with chronic abdominal pain may actually be suffering from gluten intolerance.”

I saw a gastroenterologist for the first time approximately 16 years ago. It was the summer between my freshman and sophomore year of college. It is etched in my memory because it was such a horrible experience.

I suffered from a mysterious mono-like illness when I was 18 that started shortly after an episode of food poisoning. Soon after, I began to have episodes of sharp, stabbing, diffuse abdominal pains accompanied by bloating and diarrhea. My symptoms seemed to always get worse in the evenings, shortly after dinnertime. I wondered why I would go from looking “not pregnant” to about 8 months pregnant within minutes. I slept with a heating pad on my abdomen most nights. I also had recurrent pharyngitis, fatigue, oral ulcers, and anemia. I also could eat anything I wanted without gaining any weight (which I admit, I thought was pretty cool at the time).

I was treated over and over again for stomach and duodenal ulcers, but despite treatment, my symptoms continued to worsen. During my freshman year I had an upper GI performed (barium swallow) which was normal. My adolescent medicine doctor referred me to a Gastroenterologist and I met him that following summer. It was a memorable experience…but not in a good way! The GI doctor came into the room and didn’t introduce himself. He never sat down. He did not look me in the eye. He reviewed the results of my upper GI study and told me it was normal. He told me that I had Irritable Bowel Syndrome (IBS). He asked me if I had ever been sexually abused. After telling him that I had not, he told me that I must have been abused and was repressing it, because, in his experience, most of his female patients with Irritable Bowel Syndrome had abdominal symptoms as a result of abusive memories. He recommended that I get psychological counseling and to eat a lot of whole grains. He walked out the room.

I remember this interaction vividly because I was planning on going to medical school and it was one of my first experiences as an adult patient. Although I cannot remember the name of the Gastroenterologist, I know that, if I really wanted to, I could find him, as at the time he was working at a large university hospital in a large mid-western city. I hope to God that he actually evaluates his IBS patients for Celiac Disease now, in lieu of recommending psychological evaluations and whole grains. Actually, I hope for the sake of all that he is no longer practicing medicine!

Perhaps I have shared too much with you, but I know that there are tons of Celiacs who have had similar experiences to mine. The lesson that I learned was that I should have gotten a second opinion (or third, or fourth if needed). And, if you or your loved ones are having symptoms that seem to be dismissed, that you need to seek alternate opinions as necessary.

Also, despite there being bad doctors out here, most of us truly care about our patients and want them to heal! We continually learn from our patients as well. Please ask questions and provide us with information that you think is important and relevant to your care and the care of your family. I have learned a ton from the parents of children with chronic illnesses through the years.

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8 thoughts on “My First Trip to a Gastroenterologist

  1. Dana

    Oh, Jess, what a horrifying experience! I hope that doctor isn’t practicing anymore :( Sorry it took you so many years to find your answer but glad you did.
    -Dana

  2. Jess Post author

    Hi Dana,
    I am thankful that I was finally diagnosed too after spending years chalking up all of my symptoms to being a “Type A” female. I never in a million years occurred to be that I had celiac disease and I had learned about it in medical school years before my diagnosis.
    I hope that the “time to diagnosis” drastically decreases , as the effects of undiagnosed celiac (thyroid disease, infertility, osteoporosis, etc) can be damaging.
    Jess

  3. Paleo-curious

    Boy did this post ring a bell! My first GI blamed stress from my deadline-driven work + parenting pressures, & told me that my symptoms would probably improve when my twins left for college (they were 9 at the time). I got the same eat-more-fiber message though I was a mostly-vegetarian whole grain junkie at the time. I recall telling him that I didn’t think that that it was even possible to have a higher-fiber diet than I did!

    I also was prescribed an experimental medication that was later recalled for dangerous side effects. (So was the med my regular doc prescribed for joint pain, & the hormones my GYN prescribed for periodic issues were later found dangerous as well. That’s 3 out of 4 prescriptions over 10 years of misdiagnosis that were likely doing active harm, as well as no good whatsoever! No wonder I’m now suspicious of all medicines.)

    1. Jess Post author

      Hi Paleo-curious,
      Thank you for sharing your story. It makes me so sad to think about how many of us were told that our symptoms of undiagnosed Celiac Disease were due to “stress” and/or “anxiety” and/or “female issues.” Thankfully you and I know better, but we are in the small minority of those who know that their symptoms all stem from eating gluten.
      I was given a prescription for a pill as well as some samples which I threw in the garbage on my way out of the GI docs office (I forgot to put that in the post). I have no idea what the pill was called but it must have been a treatment for IBS of some sort.
      I hope that you are feeling well. I have been slowly edging toward the Paleo route, but am not quite there yet…just dairy and grain light (and feeling better than I ever have since going off of gluten in 2010).
      Jess

  4. Tiera

    I just found your blog. It’s all been very interesting reading. Thank you for taking the time in your busy schedule to help educate, as well. I am just starting down this road with Celiac’s as my 6 year old son has recently tested positive through blood work and we have his endoscopy/biopsy coming up June 19th,

    I just, I can’t believe the issues I’ve read for so many people with Celiac disease. I mean, I’ve butted heads with our pediatrician but he’s never been degrading or rude about it. Dismissive, yes. Degrading like that GI doctor was to you is unreal. If a doctor had said that to me, I’d have been hard pressed to not react by slapping him/her! How terrible!

    Though, our pediatrician did try to tell me that the daily complaint my son had of his stomach hurting and the diarrhea and random vomiting was due to the stress he had over starting kindergarten. Except, if it were stress over starting kindergarten….why did those symptoms wait until January and not start in August or September when he started kindergarten with a teacher that he loves? (He had her last year and it was actually the only thing he was upset about, was not having her as his teacher, until we found out she was his teacher again)

    I do believe the issues with diagnosis, as I had mentioned the thought of a “wheat allergy” when my older son was diagnosed with ADHD and ODD. He would eat a full loaf of bread a day…it was all he ever wanted and I had read something about wheat being addictive. It was pretty much dismissed as me being an overly paranoid mom. Looking through the symptoms of celiac’s as I have been doing since my youngest was tested and hindsight being 20/20 I believe he has had more symptoms than the possible connection with behavior. He’s 15 now. I’m also fairly certain my husband probably has a gluten issue as well. Funny…now that I think about it…he went through allergy testing as a child and knows he’s allergic to (seasonal allergy type symptoms) to barley (and possibly hops as well) and gets stuffed up when he drinks more than a beer or two. Hmmm….

    Anyway…I’m being the overly paranoid mom and everyone in the family is getting tested (so, myself, my husband, my daughter and both the boys) as after my youngest son’s biopsy we are going gluten free as a house hold and I know you need to be eating a gluten rich diet to get accurate results.

    Sorry for rambling…it’s all rather overwhelming at the moment. I’m trying very hard to not dwell on all the other, life threatening issues that could surface and deal with having to change the diets of some rather picky eaters! Thanks again for all the work and the information!

    1. Jess Post author

      Hi Tiera,
      Thank you for writing. It is totally overwhelming to find out that one of your kids has a chronic illness and you don’t seem paranoid at all. You knew that your son’s abdominal pains were from more than stress, and thank goodness you had him tested. Looking back, I started to have symptoms when I was just about your son’s age, and my pediatrician told my mom that I just had a “nervous” stomach…
      Anyway, it sounds like you are doing everything that you should be at this point. It is very important that everyone in your family get tested (which you are doing) and you are going to make your entire household gluten free, which should be very helpful for your son’s healing. I learned firsthand how difficult it is to keep a shared GF/non GF kitchen, and it was not until we took all gluten out of our household last year that I really started to heal (and I gained a new perspective on how dangerous cross-contamination can be). Not everyone agrees with me, but I strongly feel that if one family member has Celiac Disease, that all gluten needs to be removed from the home, especially if there are tiny children around who can drop crumbs on the floor.
      I am interested to learn if your husband turns out to have Celiac Disease with his barley allergy. Back in college I thought that I was allergic to beer as well…
      I wish you the best on this journey. Please feel free to pipe in at any time with questions. I do not always have time to write back right away, but I eventually will. I’m sure you can appreciate the balancing act of being a mom!!
      Jess

  5. Cherish

    Wow…my GI doctor wasn’t much better, though I at least avoided any comments about abuse. Instead I got IBS, SIBO, anxiety, and some sort of muscular problem where they sent me to a pain clinic to be injected with steroids and lidocaine(?…some sort of -caine drug). To his credit, he did order a celiacs blood test, but it came back negative. He had it done immediately and never mentioned anything about gluten loading before the test. :-P And he never bothered to do an endoscopy or anything like that.

    Three years later (after a trip to the ER), my physician *finally* referred me to another GI and I got in with another doctor who seemed determine to find *something*. I got a pill-cam, and he called two days later to say it was celiacs. He was pretty awesome…even let me see the video from the pill cam. :-)

    1. Jess Post author

      Isn’t it fabulous to find a doctor who finally believed that something was really wrong with you? I’ve said it before, but I cringe when I think back to all the women I remember meeting during my med school rotations who had diagnoses like fibromyalgia and were told that the root cause of their symptoms was depression/anxiety. I have personally experienced a near resolution of all of my depression symptoms since going GF 3 1/2 years ago. I think that we have really underestimated the effects of gluten on both our brain chemistry as well as female hormones!

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