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About sillyyak

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  1. Hi

    Yes please do not hestitate to have the scan. I had the scan 11 years PRIOR to being diagnosed with sprue because my mother and grandmother had early onset osteoporosis and the MD thought it would be a good idea. Well I had the scan at 22 and it showed Osteopenia. The curious thing is that no one bothered to say "Gee your 22, You're kinda young to have bone loss. Let's figure out why". 11 years later I was diagnosed with sprue and then the MD were like "Gee NOW we know why you have bone loss" DUH

    Get the totally painless test.

  2. I know exactly what you mean. I had what I would call flare ups when I was growing up. I recall when I was about 5-6 having diarrhea and being diagnosed with "Gastroenteritis". Then when I was in high school I had diarrhea A LOT and remember taking Kaopectate almost as part of my daily diet! Then my GI symptoms seemed to stop in my 20's. Except..... I was diagnosed with osteopenia. But NO ONE made the connection or asked the question "Gee, why would a 20 year old have Osteopenia?" They just said "Hmm, that is odd so make sure you take Calcium supplements!"

    I have very real fantasies of suing my pediatrician for failure to diagnose.

  3. I had my appendix out at 13 in my pre-gluten free days. But the curious thing is that the night before my attack I ate a bowl of spahetti and was sick all night with gluten but did not know it then and the next day I had my appendicities attack which pain was probably aggravted by the then undiagnosed celiac. It is very tricky.

  4. I am responding to the original post.

    First, I find her snide comment to be irritating and, if it were me, knowing who I am... I would definitely have called her on that comment and been like "I may be wrong but you sound irritated by my dietary choice. What do you mean by that?".. and put the enitre comment back on her. There is no need to explain your choices. If not eating gluten makes you feel better.

    If it happens again and she makes another snide comment, you could simply say "While I appreciate your confusion about negative tests, it is my choice to eat gluten or not. You seem irritated by my decision. Is there something else that is going on for you?" And put that snide comment right back in her lap. There is no need for you to justify your dietary behaviors to her. It is almost as if she is trying to make you feel guilty about the diet. You certainly don't need that. Perhaps she is one of these people who can dish it out but not take it.

    My two cents.

  5. Welcome to the world of SPRUE! YOU ARE NOT CRAZY.

    In no time, you will feel like a new person BUT it takes patience and determination and persistence. You will miss the foods.

    It was very easy for me inititially because I was SO SICK in the hospital (I even know someone with sprue whose doctors took 1 year to diagnose her and she ended up having blood transfusions) so for me, OF COURSE, I wanted to feel better RIGHT AWAY. And if this diet was the solution for me GREAT. After about 2 weeks I was so FED UP with it. Cheated. GOT SUPER SICK all over again. Learned a lesson.

    I still hate the diet but it could be worse. I could be off it and stuck in a hospital bed. The curious thing is when I was in college about 10 years ago, there was girl in my health class who had refractory sprue AND MALT lymphoma and back then it never ever occurred to me I could have the same problem. So strange. If I knew then what I know now I would have done the diet years ago.

    Keep up with this message board. You will find it helpful.

  6. Oh my gosh. I DEFINITELY believe in Gluten Withdrawl symptoms. I feel that I am now in gluten recovery with of course the potential for relapse.

    I experienced shakes, anxiety, tremors, bad D, stomach pains, aches, It was if my body were readjusting to no gluten and trying to get rid of the toxins all at once. Plus there was the psychological component. It took me about 6 months.

    I was accidently glutened recently and it gave me bad D, terrible stomach pains, and an awful headache.

  7. I just got back from France. For the flights (I took Delta/Air France) they did not have gluten free meals but I ordered what I though was the closest meal: the bland meal. It was OK. I could not eat everything but they did have plain potatoes, plain chicken, and plain carrots as the main entree and a Kozy Shak pudding with some fresh fruit as desert as well as a plain salad - with no dressing doused all over it.

    I also brought along some rice cakes, Glutino crackers, and a snickers bar.

    For the meals in France, I discovered a store that I think is a chain: NATURALIA. They have a whole gluten-free section, including gluten-free baguettes!

    I was worried also but after some initial apprehension it turned out OK

    I do recommend the bland meal for long haul flights.

  8. Hi,

    Since being diagnosed I have pretty much put myself on an extremely restricted diet. It seems like all I eat anymore is eggs, fish, yogurt and cheese since I know those are safe. I need to vary my diet a bit without having to worry about getting sick. I have actually been losing weight which in my case is not actually a good thing since I am already thin. I thought a Nutritionist would help but I need to make sure they are familiar with Celiac since it'll be kind of pointless if they don't. Can anyone help?


    try the celiac disease center at columbia university