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I have symptoms of celiac disease, but I can eat most organic wheats.

Posted , 5 users are following.

kayla1234
kayla1234

For the past three years, I have had a rough relationship with many grains. I noticed myself getting intense cramping, diarrhea, and fatigue after eating many meals. Slowly, I realized that I was only getting sick when eating something with flour in it. Initially I believed I might have a gluten problem, but then I discovered that organic products do not make me sick. I am absolutely lost with what could be wrong, and its left me unsure of what I can even eat. I typically stick with either gluten free or organic foods now, but as a college student this is very expensive for me. My symptoms have slowly gotten worse, and some foods that I could even eat last year are making me sick now. At this point, I am concerned because this is affecting me daily. Almost everyday, I have stomach discomfort, irregular stools, often there is quite a bit of blood in the stool, and I've been getting sores in my nose for the past month (probably not relevant). What could cause celiac-like symptoms, but allow me to eat foods with organic flour?

2 likes, 10 replies

10 Replies

  • 2013Celiac
    2013Celiac kayla1234

    Posted

    I had many similar symptoms before diagnosis. But I couldn't always relate it directly to what I ate that day, it was more of a cumulative effect. Ironically, I often ate bread to calm my stomach. It was short term gain and long term pain though. I would definitely get tested for celiac disease if I were you. You need to keep eating gluten until then for the test to be valid, but it sounds like you've found some gluten containing products you could do that with without causing too much misery. Keep us posted on how it goes for you!
  • aveline
    aveline kayla1234

    Posted

    This could be many things, including Coeliac and the wheat is still harmful but you don't sense the effects for some reason. The nose sores could be relevant since mouth sores are a symptom of CD and the nose and mouth linings/mucosa seem similar (not that you're inhaling food through your nose, the way it would touch the inside of your mouth...). 

    It sounds like you take care of yourself and try to eat healthy, which is admirable in college! Please see about medical tests to determine what's wrong and then you'll know exactly what's right for your body and what isn't. For your sake, I hope it's more simple than CD, but at least you'll know...

    You need to keep eating wheat/gluten to get the right test results, either way. Good luck!

  • kristal9
    kristal9 kayla1234

    Posted

    Please get your stool checked if you think there is blood in it. That's not a symptom of celiac disease, and if you have celiac or gluten intolerance, you would react to organic wheat, too. There is no such thing as GMO wheat, yet, and the proteins would be identical to organic wheat.

    Please get your gut checked out to find out what's going on with it.

  • 2013Celiac
    2013Celiac kayla1234

    Posted

    I actually had bleeding with celiac, from the gut damage. I've come across a few other celiacs who said the same too. But definitely, it's good to get checked out for sure!
  • kayla1234
    kayla1234

    Posted

    Update: I got a celiac test and it was NEGATIVE..any other ideas?
    • marg04364
      marg04364 kayla1234

      Posted

      Were you eating at least 4 servings of gluten for 6 weeks before your endoscopy?
    • marg04364
      marg04364

      Posted

      sorry I should have said were you eating at least 4 servings of gluten per day for 6 weeks before your endoscopy. (4 servings = equivelent to 4 slices of bread..  per day)  
  • 2013Celiac
    2013Celiac kayla1234

    Posted

    Have you been tested for Crohn's Disease? I've heard of people with Crohn's doing better without gluten. Low FODMAPS wouldn't explain the blood, I wouldn't think. 
  • kayla1234
    kayla1234

    Posted

    So after a colonoscopy and endoscopy I do not have Chrons or Celiac. My doctors are stumped at this point. Since posting this I have gotten more symptoms including: itchy hives, very painful joints (hands and wrists are unbearable), worsened fatigue (hardly getting out of bed), and acid reflux. Any more suggestions?
    • aveline
      aveline kayla1234

      Posted

      Oh, no - it's horrible to feel like you do and even find yourself getting worse but no answers even after testing! sad

      You could have gluten sensitivity. You could have something autoimmune but not coeliac. Did you have testing for vitamin b12 and other vitamins, iron, etc.? 

      Or, it could be food allergies?  I know someone allergic to wheat and dairy, she's not celiac but her symptoms are worse than my son with CD if she accidentally ingests gluten/wheat or dairy. Allergies would explain most/all of your symptoms too.  When my b12 gets low, I have some of your symptoms like the fatigue and pain (plus tingling hands/feet and ringing ears and other odd goings on).

      Or maybe this is some kind of infection, like Lyme Disease? (which wouldn't explain the GI symptoms, but perhaps there's another infection that matches your symptoms, even if it's not always a "gut" infection)

      I hope you find answers, soon!

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