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Should I Be Tested For Celiac's?


eden-arteaga

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eden-arteaga Rookie

I have had many symptoms on and off for about three years now, all that are similar to those of Celiac's Disease. I recently went to a Gastroentherologist who told me that the absolute last thing he would test me for was Celiac's. I went through having an ultra-sound, blood work, stool test, and he then wanted me to have an Upper Endoscopy after all those test came back normal. My cousin was recently diagnosed with Celiac's and when I spoke with my regular practitioner she suggested instead of spending more money on testing I just follow the Gluten-Free diet for a couple weeks and see how I feel. I've been trying hard to do that for a little over a week now, and it seems like I feel better when I don't eat foods with Gluten. And the couple of times I've eaten things and gotten sick I've later discovered that they do have Gluten in them. So my question is, should I even bother getting tested specifically for Celiac's or simply continue on my Gluten-Free diet with my self-diagnosis?? Also, any suggestions for things to stay away from that aren't as obvious would be greatly appreciated. I keep eating things I shouldn't, like imitation crab, soy sauce, garlic powder, things I would never suspect!


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Ursa Major Collaborator

What is your GIs reason for outright refusing to test you for celiac disease? What are your symptoms?

If you feel better being gluten-free, then it looks like you are intolerant to gluten. I know it is tricky to stay away from gluten! The best thing is to start out with only foods that are naturally gluten free, like meat, eggs, vegetables and fruits, until you figure it all out. That way you know you really are gluten free!

Also, be aware of cross contamination. If you decide to eat gluten-free bread, you will absolutely need a new toaster, you cannot clean your old toaster well enough to be safe (even one crumb can make you ill). Also, you will need to replace any wooden cutting boards, wooden spoons and plastic strainers you use to strain noodles, as well as scratched non-stick cookware.

Check all your personal care products for hidden gluten.....shampoo, conditioner, lipstick, toothpaste, soap, lotion etc., and replace the ones that do.

Send a PM to Nini to ask for the celiac disease newbie kit, she has very valuable info that would really help you (which contains lists of products you can have, and which ones to avoid).

indyceliac Newbie

MY GI had refused to test me also, because I was overweight....so eventually i found another GI and insisted on getting tested -they had to do another endoscopy anyway..it came back positive and validated everything I had suspected. I think its preferable to have a positive diagnosis, IF you can get it....just for your own mental sake...but not necessary...if you feel better gluten-free..then that is what you should do.

chrissy Collaborator

i have come to the conclusion that celiac should be tested for routinely in everyone. one advantage to having a "real" diagnosis is that you would have a good idea of what to test for if you should have children or relatives that have mystery health issues.

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      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
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