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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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    • 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?
    • trents
      Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.
    • Jula
      I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied. For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat. I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed. But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things. I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all. None of that helped. Going gluten free did. I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before. I know this is not a unique story for people with Celiac pre-diagnosis. My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that? Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum! I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term. Thoughts?
    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
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