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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About KendraAnn

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    New Community Member
  • Birthday 03/19/1985

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  • Gender Female
  • Location Nebraska
  1. New Member Newly Diagnosed

    I'm on day 26 of being gluten free and I'm still having headaches everyday. They are the kind that don't go away, even with excedrine which always works for me. Our bodies are detoxing trying to get all of the poison out of us and some people get worse before they are better. I sure hope these headaches stop soon though. I am happy to say my GERD has gone away and my BMs are what most people probably consider "normal"! Yay for that!
  2. I have a lot of the same symptoms as you and have for years. I did things a little backwards and first demanded a biopsy (positive) followed by blood work (negative). I've been gluten free for 20 days and can tell things are looking up but that its going to take a while. I think I read in another one of your posts talking about tingling hands/feet...that's a symptom and they call it celiac neuropathy. Also do you notice that you are a little more clumsy or hurt yourself on accident (stubbing toes, hitting your shoulder on a doorway, etc)? I've read that they call that celiac ataxia. The brain fog and forgetfulness is a symptom as well...I can be in the middle of a sentence and completely forget what I was trying to say. I did see that you listed yeast infections...I used to have those and someone has mentioned to me Candida. Look it has a lot of the same symptoms as Celiac or non-celiac gluten intolerance. I personally am trying gluten free for a few months before I try a candida diet because it is more restrictive. Whatever you come up with, you are not a hypochondriac and we have all been through this. Good luck!
  3. I also have muscle and joint pain, especially my sesamoid bone in my right foot for years....I haven't read of anyone else with that exact same pain, so that's interesting to me. I have had symptoms for over 10 years and just this year had a positive Celiac biopsy, but my blood work was negative. I'm sick of stupid doctors as well, so I went gluten free about 20 days ago to see what happens. I've been having withdrawal symptoms of headaches and my neck won't seem to stay aligned. I had burning on the left side of my neck, shoulder, down my arm and to my wrist due to a pinched nerve. After seeing my chiropractor a few weeks in a row, I am doing better and I think my body is getting used to no gluten. I don't believe that I have been "glutened" yet, so unfortunately I can't tell you what symptoms of that would be, but I've read that everyone is different. Stick with the gluten free and see what happens. When you've struggled with these symptoms for so many years, it can take months or years of being gluten free before you finally feel great for once, which is a dream that all of us want, to feel healthy for a day! Good luck!
  4. It is very hard to find a doctor who knows anything about it. I had the colonoscopy and scope at the same time, so I was put under with IV sedation, so I don't remember a thing. I think if you just get the scope/biopsy they might not put you clear under, but I've heard it's not bad and doesn't hurt. Talk to the doctor before hand and make sure he will take at least 10-12 different samples during the biopsy for accurate results. If you are lucky enough to find a doctor who knows about celiac, then they should know that. Have them draw enough blood to do all of the Celiac blood panel so that you only have to have it drawn once. Also have them do genetic testing to see if you have the gene that says you are likely to have Celiac. Since you've only been gluten free for a week, I'd try eating gluten until you can have those tests done, otherwise they are pointless to do. I've read that you only need to eat about 1 to 2 slices of bread a day to have enough gluten to get accurate test results. I know it might make you feel like crap again, but hopefully you can get in soon.
  5. Since November I have just continued to get a lot sicker and demanded a colonoscopy and scope. I had to ask for the Celiac biopsy, which came back with "villous atrophy" which means the villi are flattened and damaged. They then did the Celiac blood panel but that came back negative. I've heard of a lot of false negatives and all of my symptoms point to gluten so I either have Celiac or Non-celiac gluten intolerance. Either way, the treatment is a gluten free diet. I was just sick and tired of doctors saying it's just IBS which they don't know what causes it and you can only treat the symptoms which obviously wasn't working. I feel like I wasn't listening to my body so now it's really speaking up and saying, "HEY! you're poisoning me! If you won't listen to me, I'll make things worse and really knock you on your butt!" So I'm finally listening and trying Gluten Free. At some point you just realize you don't need a piece of paper or doctor saying you have "whatever it is" and you take matters into your own hands. If gluten free doesn't make me feel better after a few months, then I'll consider going back for more testing. My main withdrawal symptom is headaches everyday for the 2 weeks I've been gluten free. Hopefully it'll subside soon.
  6. Yes, exactly the same symptoms! Mine started when I was about 17 when I had shingles, I'm now 27 and just this year got a positive biopsy, although my Celiac blood panel was negative. I've met with countless doctors over the years and they just say, IBS, acid reflux, depression, chronic headaches, etc. The last doctor I saw was supposed to be a "specialist" but he was so blatantly rude, I left there so pissed off. After that, I immediately started a gluten free diet. I'm on day 14 and have had some withdrawal symptoms of headaches everyday and I'm not sure if this is related, but my back and neck continue to go out of wack, so I've seen the chiropractor every week lately. I know my body is just trying to get all of the toxins out, but I have noticed that my BMs are half way "normal" and I haven't had any acid reflux. Get testing done before you go gluten free but if doctors refuse, it's worth a try to take a few months and just see how you feel. Good luck!
  7. Colonscopy Prep

    My Doctor prescribed Osmoprep Tablets for me to take. You take 20 pills with ginger ale the night before...4 pills every 15 minutes. The morning of the colonoscopy, you take 8 more tablets. Obviously we all know what the prep is like but I was extremely happy with the pills and not having to drink that nasty drink.
  8. Hi HGMama, I too had negative blood work, but I had a postive biopsy. I have been gluten free for 13 days now and overall am feeling better. "Normal" bowel movements (haven't had that in over 10 years!), basically no acid reflux, but I have been having gluten withdrawals resulting in headaches for all 13 of these days so far. I've read that it might take 2-3 weeks for the withdrawals to subside. What were the results of your biopsy? Good luck!