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Advice on dismissive doctors? HELP!

So I’m a 20 year old woman and I’ve always pooped a lot. Occasionally thered be some blood but I thought that was normal for years and I always had solid stools. Then in February of 2021 I had some painful stomach cramping, nausea, and what I now realize is tenesmus. Ever since February I’ve been having dizzy spells, numbness in parts of my body, random bruising, diarrhea, some bloody mucus/some blood in stool, and constipation with soft stool (what I think is tenesmus). This type of constipation and regular constipation or the simple fact of a constant stream of stool, keeps me in the bathroom for up to 35-40min at a time. There are probably some symptoms I’m forgetting but yeah. So I was diagnosed with Celiac based off of positive blood work then went gluten free to no avail. There was no change in my symptoms though i was gf for 3 months. So then I got a colonoscopy, endoscopy and biopsies which all showed nothing. The doctor’s “impressions” were that it is just stress and maybe IBS. He decided that there was no damage to my vili but never instructed me to eat gluten pre-procedure but he knew I was gf at the time. I’ve had positive bloodwork for Celiac twice now, once on a gf diet, one not. When I’ve eaten gluten recently after this procedure I have mild side-affects but nothing super intense. There seems to not be a really strong cause and effect correlation. With the doctor just telling me to exercise and that all my symptoms are stress-induced is frustrating. I know other people have experienced dismissive doctors but I was wondering if any of my symptoms sound like something more than just stress? I believe it is something more, these aren’t super normal things to experience. But, it’s hard to push when you’ve been told it’s just stress. I’ve also been told it was because I was eating fiber which was not the case at all. I know I’ve not been experiencing this nearly as long as others but i just really hoped to hear from some of you!!

  1. Thank you for sharing your story with us, @shalen. I feel your pain in having doctors be so dismissive, as well as the physical pain of not being able to get your symptoms under control.
    I would suggest getting a second opinion, as it is common (unfortunately) for IBD to go undiagnosed due to something being missed.
    It may also be more than just a gluten free diet that you need, such as eliminating common intolerances/irritants (eggs, dairy, soy, etc.) but it would be wise to consult with a registered dietician about that.

    I would strongly consider getting a second (or even third) opinion just to be sure nothing has been missed. Please keep us posted!

    --Julie (Team Member)

    1. thank you!!
      I planned to get more opinions. That doctor’s response also included comments about my mom being “overbearing” because she was asking him questions as I was coming out of anesthesia. So needless to say, his opinion didn’t feel very professional or reliable to me. I appreciate your input very much thank you 😀
      I do have another question though unsure if you could answer but: is tenesmus often times an indicator of ibd rather than celiac from what you have noticed? It’s usually my main symptom!

  2. @shalen,

    I would definitely get a second opinion. Perhaps even ask for a pill cam test? There could be something going on in your small intestine which only a pill cam will be able to show. You deserve relief from these symptoms and I'm sorry your doctor is being dismissive. That is never easy to go through, and I've been there. I always just immediately change doctors and every time I do, I wish I would have done it sooner. Good luck and keep us posted. Hugs, Elizabeth (team member)

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