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Celiac Stories

7/28/2007 I am 37 years old and have been suffering with Celiac-type symptoms all of my life. I have food allergies to wheat, corn, potatoes, soy, and nuts. I could always tolerate most of these except soy and have really began concentrating on wheat. I met a lady that has celiac syndrome who highly suggested I get tested. The test came back negative but then came the questions. I found your site oddly by researching body pain and celiac. It returned a link to your forum and I read all of your sections from there. I read that the tests are mostly accurate if the tolerances are not too high and the dietary conditions are right. I just started to readjust my diet about a week before the test, so I wonder about the results. I began feeling better as I started following the diet and have "tested" myself periodically to see if gluten really creates a reaction. I can have gluten somewhere in a meal and anywhere within the first 12 hours regret it. What can I do to get a more accurate test? What is a possible alternative issue based upon my personal tests if celiac is not it? Are there any perscriptions that may create a negative blood test? I am concerned and not afraid to find the answer no matter the time or labor. I have confronted doctors before about lazy doctoring and misdiagnosing. I have a great doctor now that is very interested in a solution that is correct so I can move on. My thoughts are also on my mother who just went through a terrible ordeal and is going to get the celiac test as soon as possible. I am also very concerned for my three children since I found that celiac is genetic. Everything is pointing to celiac except for the tests??? Thanks C. (see comments on this in Dr. Rima's Celiac Blog.) 7/28/2007 I think you should update your webpage information to include under the NOT safe list that most items are now available in gluten-free format. Also, that there are a number of vendors celiacs can order directly from for day to day products like bread and pasta. I was diagnopsed July of 2006 and was initially depressed from the list of things I could never enjoy again. My diet became excessively restricted, as the information I read on the net was laden with discouraging information. Through my own research and perseverance, I now enjoy almost every item I used to eat, but GF. Please post some encouraging information as well as the warnings. Celiacs need hope too 7/11/2007 Hello, Your site is great. Regards, V. 3/12/2007 I wanted to say thank you for taking the link between celiac and obesity so seriously. Your site is one of the most extensive I've seen, and at the same time easy to navigate and gather info. I lost almost 80 pounds and am at my goal after getting rid of gluten, dairy and sugar. My husband has lost 100 pounds and counting from cutting out gluten alone. Additionally I have Asperger's Syndrome and ADHD. Changing my diet has helped me function so much better in daily life where medication never helped. Many of my husband's health problems cleared up too, including dermatitis herpetiformis and weight-induced sleep apnea. He never felt right his whole life but couldn't get anyone to listen. Thankfully his current doctor backs him up 100%. My husband and I discovered our struggles with celiac on our own; it's been hard to find experts who get it, let alone others. One friend suggested it was psychological! So it's a blessing to come across your site. Thank you again so much. 1/10/2006 Thank you so much for the time you have put into educating the public about this disorder. I am very grateful for people like you that put forth so much extra effort. God Bless you. Sincerely, B.A., Michigan 1/2/2006 Dr. Rima, I want to tell you that your website is the exact information that I needed years ago. I have suffered from many health problems includng hypothyroidism, chronic fatigue, severe weight gain, sleep apnea, bone pain and neurological problems and many more and I think that they are all directly related to celiacs. I have gone to many doctors and they all say, well, you just need to lose weight and all your problems will be solved. Its been so depressing over the years to feel so poorly and be told that I have no other problem than being obese. Well, the diets never worked because of all the whole grain junk that they all tell you to eat. I also believe that I have an allergy to soy and that is a huge discovery. I stumbled upon a website a few years ago and just went wheat free the best I could. I was also able to get pregnant afterwards. I was wheat free for about 3 years, but I continued to have some problems. After the loss of my brother I got very depressed and began eating some foods that have made me very sick all over again. I thought, well, maybe it was all in my head...but, this last week I got off the wheat again and I started looking online for some support. Your website is the first confirmation that I have seen that makes me feel that I am not making all this up. You have made a very important connection that many people and many physicians do not recognize. I am on the road to recovery once again and I am going to avoid corn too, and you are the first to support the idea that a celiac can be intolerant of it as well. I am very overweight and am trying to lose weight. I am an assistant principal in a very demanding job. My fatigue and inability to focus has been a hindrance and the body pain disabling. I just wanted you to know that I plan to order your book ASAP. You are like an angel to me right now because I really needed affirmation from someone in the medical field, not because I don't believe in this syndrome, but because I want other people who are suffering to know that there is hope. I have left dr's offices very discouraged with test results showing a "perfect bill of health" other than being severely overweight. People like me are a puzzle, and are very misunderstood. I appreciate your efforts and I wanted to tell you thank you for your work. I will continue onward to avoid the foods that have attacked my body and my immune system and made me sick. I hope to be well soon and I am so encouraged by you!!! Thank you, thank you, thank you! M.W., Texas 11/7/2005 Dr. Rima – I want to thank you for your information about celiac. My six year old daughter was diagnosed in June just before she turned six. It has been terrible trying to learn how to read labels to look for hidden gluten since nothing ever says “gluten”!! So far, my husband and I are doing a pretty good job of it, but we don’t branch out with food very much! Anyway, my daughter is so improved that it is unbelievable. I stumbled on your website in an e-mail from our celiac support group in Tyler. I use it often to look up “safe foods” and foods to beware of. Thanks again.
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