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Needing Opinions Desperately


Sugar735

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Sugar735 Newbie

My name is Liz and I'm 22 years old, and I really am looking for some help.

For some background information...I'm not 100% sure it could all be related, but I'll add it all just in case..;



  • I was bulimic for 2 years purging/laxative abuse (recovered the past 7 months)
  • During that time, I was diagnosed with severe IBS
  • I also had surgery to remove abdominal adhesion (Both sides of my bowels and my appendix were attached to my abdominal walls)

Now recently...

3 weeks ago I was in the hospital for 3 days with a kidney infection, kidney stone, bladder infection, and ovarian cysts (go big or go home right?). I had severe pain in the left side under my ribs and around my side.

Within a few days of finally feeling better, I've started to get sharp pains on the left side just below my ribs, through my side (kind of near where my waist nips in...?) and can travel through the front sometimes, and just above my lady bits where you'd get cramps. All are SHARP pains. Constantly a dull ache but then episodes lasting seconds up to 15 minutes of sharp pain in the side.

Last night I went to the ER because we thought it was my kidney again. Everything came back perfect and that its not my kidney at all. My doctor suggested I talk to my GI doctor as well as a urologist (because of the past issues as a follow up.) The past few days its especially bad when I lay down to go to bed..

I really need some sort of idea of what could be going on? I'm missing so much work, or having to go home early, and it's really putting a strain on every part of my life. Googling around I was lead to a lot of IBS forums saying they were misdiagnosed with IBS and really had celiac.

Does anyone have any ideas possibly :/ It would be so greatly appreciated....Most of my adult life has been spent in a hospital, and I'm so frustrated.. I'm so close to just giving up hope with everything. Thanks in advanced.


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mommida Enthusiast

Don't give up hope, and don't stop eating gluten until your testing is done.

Yes, it's true a lot of Celiac is mis diagnosed as IBS. You need to work with a gastroenterologist and you will need an endoscopy with biopsy.

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    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
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