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Really confused about having or not celiac, confusing symptoms


Frankie13

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Frankie13 Newbie

Hey, this is my story, I started having a chronic diarrhea for almost 3 months, then my stools became really unpredictable some days really loose, other im constipated, lots of symptoms like burping, massive movements and sounds from my intestine, sometimes pain or discomfort in some areas os the stomach, nausea, hyperhidrosis, dizziness, horrible taste in the mouth, i cant really tell all the strange sensations my body has feeled, headaches i have almost 1 year not feeling good with myself, some days are fine but others i really cant this is killing me really slow inside of me, investigating i tried taking away gluten (not completely because its very hard, i dont have the support of my parents) but i noticed a great improvement in my health, i went to the doctor and he did blood tests, i was positive in the antigliadin and in the EMA ( endomysial) so he made biopsy of the jejunum, he told me my villious were normal and i did not have celiac, the study shows i have a chronic inespecific jejunitis (moderate lymphocyte infiltration) but i dont know whats the origin of this inflamation, also i realize that when i eat bread or something my throat really hurts a lot and still have weird stools, very tired at nights and when i wake up, im really frustrated and tired of not know what is happening to me, if somebody please help me if it happened to you or know something like my story could help me a lot, im scared having another disease or other thing, if im celiac its okay but i need to be sure to make the diet stictly :(.

Thanks a lot and sorry for my english im not native speaker.


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Toxic Glutension Newbie

I am afraid I am in no position to offer any advice. I can only say I hope you can get to the root of your problems and feel better soon. 

GFinDC Veteran

Hi Frankie,

You might be having an allergic reaction to wheat or something else you are eating.  I am thinking that because you said your throat hurts when eating bread?

Allergic reactions can occur fairly quickly, as compared to celiac reactions which are somewhat slower.  So that might be something to ask your doctor to test you for.

tooth-whisperer Apprentice

Hi Frankie,

I'm going through a very similar time to you right now.  Over the last 3 months I've had stool changes, headaches, stomachaches, and episodes of dizziness and lightheadedness.  If your esophagus (throat) hurts when you eat certain foods, you may want to ask your doctor about being checked for eosinophilic esophagitis.  It's a reaction to certain foods causing inflammation and other esophogeal issues, and gluten is one of the common allergens.  Eosinophilic Esophagitis is common in teenage and young adult males.  I was just scheduled for an upper scope and they're going to take biopsies for both Eosinophilic Esophagitis and Celiac.

If you're living with your parents, and a gluten free diet makes you feel better, perhaps you should have your doctor speak to your parents on your behalf.  If your doctor feels that there's a compelling reason for you to be gluten free, they need to understand that is something you require for your health.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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