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KateGrace Newbie
KateGrace
Posted

OMG...

I went to the ER once doubled over in severe pain. The curtain on my bed was open a bit and I could see the doctor across the way looking at my xrays. It was quiet in there so I knew they were mine. He said "Oh my God!!" and called the nurses over. They were all pointing at my x ray and one nurse said "Whoa!"

Sandsurfgirl, this story will haunt my nightmares forever! I'm so sorry about that. Pre-this diet, I'd have bad spells where I wouldn't go for over a week. I'd think, "Is this normal?" But I never pictured this scenario.

How long did you "not" go till this happened?

Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption.

My symptoms EXACTLY! When I'm glutened, it's shut-down mode, no BM for 3-4 days, then "pebbles" or stuff with white tissue (sooooorry, too much information. I'm even grossed out writing that), and "mask over eyes" and general crankiness.

Glad I'm not the only one!

Btw, as far as the mis-interpretation of Reba32 and SLB, it's one of the curses of the internet...people have different styles of communicating, and trying to appear warm over a machine can be difficult. But I love this board!

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bridgetm Enthusiast
bridgetm
Posted

Same for me. My aunt put out many options for Easter brunch which were safe for me, but my grandma bought a pie with a bit of a meringue layer and a thin, crispy crust. I have not yet told her about my new gluten-free diet and decided that a large family get-together already just a little tense was not the time to announce the change and the pie was the safest of all the dessert options. I will definitely be discussing the diet with a few family members at a time asap because within 10 minutes of swallowing the last bite of pie crust, I started noticing discomfort and pain and felt my intestines first go hyperactive and then shut down. For the last two days I've been fluctuating between the extremes of that spectrum, but mostly feel like my insides have shut down and every time I eat or drink any amount it just becomes worse.

munchkinette Collaborator
munchkinette
Posted

So you can see constipation on an x-ray? What can you see? I did a google image search, and I'm not sure what I'm looking for. Does it just look like bigger intestines? Or more visible than normal?

Also... where does it all go? I mean, that time I was backed up for 10 days, I was big, but not 30 meals big.

  • 1 year later...
marjean Newbie
marjean
Posted

I guess this would be one of my main symptoms after I eat wheat. Its almost as if my bowels completely shut down for four days (sometimes three), followed by a day or two of going to the bathroom three times or more, and then it returns to normal again. It is a very noticeable pattern. Of course I get very anxious, extremely tired, almost feel like I have a "mask" over my eyes, and get severe stomach pains as well following any accidental consumption. Just wondered if others are completely constipation predominant. I really feel like my system goes into 'shut down' mode rather than "get it out" mode as most celiacs suffer from.

I have been diagnosed with celiac six months ago, and I am trying very hard "to get it right"..Once in awhile I eat something and I notice it had gluten..As far as the constipation, I have had it for a few years. A friend of mine, who is a nurse came over, and I was telling her how tired I am..she said to try flax seed oil, she does, and feels great..so I went to the pharmacy and talk w/ the pharmacist..it helps w/ constipation! Along with arthritis, cardio and vascular..The constipation is not entirely gone, but makes things ALOT better. I dont know if it is the flax seed oil or not, but since I started I dont feel nauseated most of the time either. But my question is..before I was diagnosed I had problems w/ difference food, the skin problems, etc., but I could eat certain foods and it wouldnt bother me, but now that Im diagnosed, I can tell if there is gluten or not, and get symptoms right away. Sometimes I wonder if this is in my head..

beebs Enthusiast
beebs
Posted

Yeah bad. Not to go into to much details but I've had it to the point where I ended up really ill. So yeah -the last thing they think is celiac even though judging from this thread its fairly common :rolleyes:

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    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
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      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      Coeliac or not coeliac

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