The struggle with getting officially recognized as having Celiac is a real problem for people who know they suffer if they eat gluten.
What I do know is that the blood test is worthless to many people. It only recognizes some Celiacs but not others. Some doctors rely too heavily on this "precious" test of theirs. Many of us who notice we get sick eating gluten still test negative.
What I have learned is that the only test that is considered to be the most reliable is a small intestine biopsy. Unfortunately, I've discovered from reading here and elsewhere that even this fancy test can have false negatives. I read one person's experience that all tests, including this one, were negative. She finally got sick enough that her GI had to recognize that she definitely has Celiac. Only once she was strict about being 100% gluten free did she start feeling better. She said she still has bad days but she definitely has better days and doesn't have to stick so close to a bathroom all the time. She went through her whole life not knowing what was wrong with her, so as an adult in her 30's it makes sense that some other health issues related to malabsorption finally made it clear she actually has classic Celiac.
The other thing is that not all Celiacs have this classic diarrhea, so some doctors miss the people with gluten issues and Celiac who don't have diarrhea. Thankfully, I don't have diarrhea myself, but this doesn't mean I don't have problems in the bowels.
I still don't know if I have actual Celiac or not, but I am 100% convinced that I have gluten intolerance even if those fancy blood tests are negative and the doctors don't want to do any further investigating. I also have blood relatives with both confirmed Celiac and confirmed gluten intolerance.
For me, I stay away from gluten. The only thing that concerns me is if I am ever hospitalized again in this local hospital. I will have to ask friends bring me food from home, because this local hospital has a very classic hospital menu full of the very things we can't eat. There just isn't enough gluten free food on their menu. The only rice they have is the starchy white rice that doesn't do anyone any good. It doesn't leave much on the menu, believe me. I do believe it shouldn't be terribly difficult for friends to bring gluten free foods from home, because when one is in the hospital, one usually doesn't feel good enough to eat much of anything anyway. If they all took turns, no one would really have to be burdened if it's another short hospital stay. I honestly don't know what else I could do in this kind of situation. I don't want to burden friends, but hospital menus just aren't very imaginitive. If their budget is that limited, couldn't they just add brown rice to the menu for the few that really need it? Yes, I know they need to be particularly careful not to cross contaminate, but they're supposed to do that with their cooking equipment anyway. I realize brown rice by itself is rather boring, but this one thing could at least help those who need gluten free food while staying in the hospital.
i did not think that celiac would show up in x rays either so i can not figure out why they want to do this test im just going with the flow and ill go for this test but i do not think ill get the answers i want
in the mean time im going to go gluten free until a week before the test then ill eat gluten type foods for the test and go back to gluten free
my gp knows that i have gone gf she says just do what makes me feel better
what i do not get is that they did not tell me to eat gf due to the nature of my sickness with being in the hospital having such bad diareah and vomiting for over a month i have distroyed my villi and for the dr's to tell me to go on a carb diet was just insane
it made me all the more sicker
as far as eating im getting the hang of it and im wondering why i have not thought of going gf a long time ago
its so nice to eat gf pasta dish with out feeling so sick bloated and yucky feeling
and i made a chicken stir fry with rice noodles omg it was to die for hubby even liked it
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