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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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    • Scott Adams
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    • trents
      Jula, terminology can be confusing and the terms "gluten sensitive" and "gluten intolerant" are used by different people to mean different things. That's why I stick to using "celiac disease" and "NCGS" (Non Celiac Gluten Sensitivity) because those are the technical terms used by the medical community and it eliminates the confusion. As you point out, regardless of whether you have celiac disease or NCGS, the antidote is the same - total abstinence from gluten. There is this misconception out there that NCGS is harmless, just uncomfortable and inconvenient so you don't have to be so careful as you do with celiac disease. I'm not so sure I buy into that. Especially since some experts in the field of gluten disorders believe that NCGS can transition into celiac disease. And even if it doesn't, there is at least anecdotal evidence that some with NCGS experience harm to non enteric body systems from continuing to consume gluten. We actually know more about how celiac disease engages the immune system than we do about  how NCGS engages the immune system. These two may not be as neatly separated as we historically have been used to thinking. Yes, it is true that gluten disorders can affect various organ systems and not just the small bowel but that may also be true of NCGS and not just celiac disease. I just think there are gray areas here we don't completely understand yet. The fact that you get this rash when you experience gluten contamination strikes me a being very telltale. Can you describe the rash? dermatitis herpetiformis has a characteristic appearance to it. The rash pimples have tiny pustules. Celiac disease is the only known cause for dermatitis herpetiformis. So, if you have dermatitis herpetiformis, you have celiac disease. Many dermatologists do not know how to properly biopsy dermatitis herpetiformis. So, if you pursue that route, do some research and find one who is experienced in this. And the other  problem typically is being able to arrange an appointment when you are having an outbreak. I suppose you could make an appointment and then plan on eating gluten just previous. I don't know where you live and what your medical system is like but as a U.S. based person I think of my doctors as working for me, not the other way around. I don't acquiesce to them just because they have a medical degree. I'm capable of doing my own research and making decisions that make sense to me. I'm the one who has to live with them. Of course, I certainly value the physician's input and will factor that into my decision making.
    • Jula
      Thanks, trents, for both the welcome and the perspective. That is exactly how I'm feeling at this point. The main reason I was considering this particular confirmation is because 2 primary care physicians, one an internist, had said this should be done because they could not be sure based on the information I have that it is celiac and not gluten intolerance. When I asked why that mattered, either way I would have to remain gluten free, the internist especially insisted that she would have to watch for a different set of repercussions on other organs. I could find no proof of this but the questions she raised made me think I should have a definitive diagnosis. But now knowing that it's more than a meal's worth of contamination needed, I don't think I can do it, although  the occasional contamination from eating at a friend's place or restaurant may still happen and if it does and I end up with the rash again, I could get that biopsied and have the same results, it seems. Thanks, again.
    • Kathleen JJ
      Thank you very much for the reply! As to the cheese sauce - I am not the cook at home, I'm very lucky that my husband takes on this monumental task. But how does one make a gluten-free cheese sauce? Isn't it always based on a mixture of flower and butter? I never achieved actually making it without burning it myself, but he makes it this way. Is it a question of just replacing with a different kind of flower?
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