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fed up italian


Sicilygirl

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Sicilygirl Newbie

I am looking for words of encouragement because I have just had enough with this celiac diagnosis. I recently got diagnosed in October this year and its been hell let me tell you. Fist of all my doctor did not want to do the test saying that I was not Celiac because I did not have blood in my stool. Really??? I thankfully insisted that he do the blood work test just to make sure., since I was sick while in italy after eating both pasta and pizza and I knew something was wrong. I exhibited all the signs of gluten sensitivity, bloating and bad stomach pain which I never had ever after eating gluten.  After a week of waiting patiently for the test result it showed positive. I was both happy and floored at the same time. It has been an emotional roller coaster. Having to now work hard  to read labels constantly making sure they don't add gluten EVERYWHERE!! buying some comfort expensive gluten free foods to somehow make me feel like I am a normal person again. Hiring a dietician to put me on a diet to get my nutrients needed and to fix my villi that is destroyed. I feel sad, angry, depressed and why me?? is it an italian thing? I do not know. Anyways any feedback would be helpful. I am still extremely tired and have bowel symptoms and brain fog when do these go away?


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    • Wheatwacked
      Eesearch indicates that a significant portion of people with dermatitis herpetiformis (dermatitis herpetiformis) can experience worsened symptoms when exposed to high levels of iodine; however, not everyone with dermatitis herpetiformis will react to iodine, and the exact percentage depends on individual sensitivity and dietary factors.  I don't have dermatitis herpetiformis, but iodine is essential.  I would start with 1 drop of Liquid Iodine (KI + I2).  One drop is 50 mcg and evaluate.  The RDA for iodine is 150 mcg a day.  It's $8 for a 2 ounce bottle, about 1000 drops per bottle from pipingrock.com. To me it seems logical that with no gluten coming in, eventually your skin would run out of gluten for the iodine to attack.  One of iodines functions is to break down defective cells to make room for new cells.
    • Wheatwacked
      Given your symptoms and family history and your low gluten consumption before the blood test, eventually you will be diagnosed, but it may take years.  Ask your doctor about nutrition deficiencies due to malabsorption.  Vitamin D deficiency is almost ubiquitous. Unless your doctor has an answer to your health issues, once you've pursued a diagnosis to your satisfaction I would suggest a trial period of gluten free.  In the meatime,  Mayo Clinic research indicates a first degree relative of a diagnosed Celiac is 42% likely to also be Celiac. Dermatitis herpetiformis causes itchy bumps and burning blisters as a result of a gluten sensitivity that makes your immune system overreact.  Are You Confused About Your Celiac Disease Lab Results?
    • disneyfamilyfive
      Thank you for the article Scott. It was very informative.  I didn’t realize I should have been eating a certain amount of gluten prior to the test.  I only eat bread maybe 1x a week, don’t eat cereal.  Pasta occasionally.  I’m sure there is gluten in nearly everything, so I’ve had gluten but no idea how much, but definitely not slices of bread. Not sure how much or how little that could affect my results.  My doctor didn’t mention anything about eating more gluten or eating bread. 
    • Scott Adams
      It sounds like you're navigating a lot right now, and it’s good that you’re being proactive about your health given your family history and symptoms. Based on the results you shared, the elevated IgA Gliadin and IgG Gliadin antibody levels could indicate an immune response to gluten, which may suggest celiac disease or gluten sensitivity. However, your tissue transglutaminase IgG (tTG-IgG) result is within the normal range, and your total IgA level is sufficient, meaning the test was likely accurate. While these results might point towards celiac disease, the diagnosis often requires further interpretation by your doctor, especially in light of your symptoms and family history. Your doctor may recommend an endoscopy with a biopsy to confirm the diagnosis, as blood tests alone are not always definitive. In the meantime, you might want to avoid making dietary changes until you discuss the results with your healthcare provider, as going gluten-free before further testing can interfere with an accurate diagnosis. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. This section covers your two positive results: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide)    
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      Hello, I had celiac tests run a week ago and my doctor still has not viewed my results (I saw them on mychart 4 days ago), hoping to get a little insight.  Background: my grandma had been diagnosed celiac and my dad was recently diagnosed with a form of celiac (rash but no gi symptoms). I have been battling anemia and have some gi symptoms similar to celiac symptoms.  My test results came back as the following: TISSUE TRANSGLUTAMINASE IGG value 5 Normal <6 U/ml Iga - 287 Normal value: 70 - 400 mg/dL Iga, Gliadin - 119 Normal value: <20 Units Igg, Gliadin -75 Normal value: <20 UNITS Thank you in advance for your thoughts, experience or insight.    
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