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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere 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 MicheleR

    • Rank
      New Community Member
    • Birthday March 17

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    • Gender Female
    • Location CT

    MicheleR's Activity

    1. MicheleR added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Strange Rash On Neck
      I have been gluten free for about 6 weeks and recently, in the last week, I have developed this strange rash on my neck.   It's itchy as heck.  Nothing has worked to stop the itch.  It's red and blotchy and the skin almost looks like a burn scar, with bumps all over it.  It doesn't seem to be going away.  I have checked my two daily medicines, and both are reported to be gluten free.  I just called and made an appt with the local walk in for later today but was wondering if anyone has had this happen before?   The rash is all over the front of my neck, in the same location as my thyroid, which doesn't work as well as it should and I take levothyroxine.   I haven't been able to figure out anything that could be causing it.  I have been really careful to avoid CC.  Any thoughts??   Thank you in advance!
      • 2 replies
    2. MicheleR added a post in a topic What Were You First Symptoms To Go Away?   

      I have been gluten free for only a week.  However, I already feel so much better!!  I can actually eat without getting a terrible stomach ache afterwards.  My head seems clearer, concentration is getting better.  Chest pains seem to be gone.  A coworker told me yesterday that I am losing the bloated look, which I saw, but thought maybe I was imagining it.  I have cheek bones again.   Lost 3 lbs in the first week, but find that clothes already fit better.  My energy level still isn't where I want it, but that can also be from the iron and B12 deficiencies.  Once I get more energy I plan on getting more exercise, which I know will help tremendously!  Thanks again for this forum!!  I was out with my 14yo nephew who was hungry and we weren't close to home, so we went to a 99 restaurant, and I ordered a gluten free burger.  I didn't think I had to explain how sick I could get from cross contamination, but, as delicious as the meal was, I did get the stomach pains.  I suspect they weren't as careful as they should have been in the kitchen.  Next time, I will have my card to show exactly what I need.  Lesson learned.
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    3. MicheleR added a post in a topic Biopsy Confirmed=No Longer In Denial...please Help!   

      Thank you for this posting!  I got my call yesterday that my biopsies last week were positive.   I have an appt with a nutritionist tomorrow morning.  I have gotten alot of great info from this one post!   PS--where's my secret decoder ring? 
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    4. MicheleR added a post in a topic Lab Test Results-Frustrated   

      Thank you for your posts folks!  Hubby and I already eat no white potatoes and no white rice, as he is diabetic.  So I try to keep our diets pretty good all the time.  Thanks again!
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    5. MicheleR added a post in a topic Lab Test Results-Frustrated   

      I had my endoscopy this morning, with multiple biopsies of course.  The MD said he completed multiple biopsies and also found a gastric ulcer that was not raw or bleeding.  He also biopsied the ulcer.  Now here's the catch, all 6 of the Celiac Panel lab tests came back positive (results are listed above) and when I had my office visit with the GI he said I definately have Celiac with those results.  The biopsies were mostly to evaluate how much damage was done and to see if there was any dysplasia.  After my procedure today, the MD said I didn't have to go gluten free until the biopsy results are back.  I was psychologically ready to start this new way of life, and now.....   I'm so confused.  I was pretty sleepy when I spoke with him today, and didn't think to ask if he wanted me to wait to give me more time to adjust or if he thinks something else is going on.  I had UC as a kid, that when removed, it was path reported to be "indeterminate colitis", meaning Crohns or UC, it was a tough call.   I did discuss this with him when we met in the office 2 weeks ago and he said that if it was Crohn's, I would have had fistula's or other issues, as that was all over 28 yrs ago.   I am just so dang confused right now.  Does any of this make sense to anyone?  Sorry if I rambled...
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    6. MicheleR added a post in a topic Lab Test Results-Frustrated   

      So tomorrow is my endoscopy.  Hubby has been great with support, he's read everything I have put in front of him and asked good questions.  Most importantly, he has let me cry, hugged me and is ready to make the diet changes with me. He even offered to help me empty the kitchen and pantry yesterday of items with gluten.   It will be a good thing for both of us!!  Anything I need to know about after the endoscopy?  Throat soreness?  Anything I should pick up at the store today or make sure I should have on hand for after?   I am more paranoid about this than probably most, as I battled ulcerative colitis for years as a teenager, so when it comes to bowel issues of any kind, I get nervous as heck.  Thank you!!
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    7. MicheleR added a post in a topic Lab Test Results-Frustrated   

      So, I did finally see the gastroenterologist, who said I have probably been dealing with Celiac since I was young.  He wants to do the biopsies to rule otu any dysplasia in the small intestine.  Apparently, the issues I have dealt with for the last 27yrs that I thought was the result of having my large intestine removed for ulcerative colitis, may in fact have been Celiac Disease.  I am scheduled for the testing (endo) on 3/26.   In the meantime, I am also having a cardiac work up due to chest pains for several months, and a really ugly family history of heart troubles.   I am ready to feel better, and start my "new life" and hopefully lose a few pounds too!   Thank you for this board, as I have learned so much!   Nervous to find out how much damage I have done to my small intestine, without even realizing it.  Any input on Celiact?   Is it worth it?   I checked out their Facebook page and they don't update it, nor do they respond to questions posted on it, so I am leary to order from them...  Opinions?   Thank you again!!
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    8. MicheleR added a post in a topic Lab Test Results-Frustrated   

      Thank you folks for taking the time to respond.  I have been doing ALOT of reading, and figured my test results were pretty positive, but didn't realize it probably means alot of damage already.  I'm disappointed that I have to wait 3+ weeks after getting the lab tests to be seen by a gastroenterologist.   He may decide not to pursue a biopsy, but, in the mean time, I am continuing with the regular gluten filled diet.  At least now I know why my stomach hurts so much after ingesting food.  I have already started to buy some gluten free things to incorporate so that hopefully, I am not suffering all the time.   I have found alot of great resources on this site, for that i say thank you!  You are all going to make this road to transition much easier for me!
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    9. MicheleR added a post in a topic Lab Test Results-Frustrated   

      No idea why they aren't covering.  I got the EOB today, I will be on the phone early Monday morning! 
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    10. MicheleR added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Lab Test Results-Frustrated
      I have had problems with my iron levels for over 20 years.  They drop, I get iron infusions, they go up, I feel better for a few years.  This time I went for an infusion and had an anaphylactic reaction to the Infed, which I have been getting for years.  Why is this happening all of a sudden?  My PCP referred me to a Hematologist to see what we could do.  Upon further lab testing, I found my B12 was 130.  Also low, and started B12 injections, in the hopes that they would bring up both my B12 and Iron numbers.  Well, after almost 4 months and no improvement, the Hematologist suggests doing a Celiac Panel.  
      Low and behold, I got the voice mail from the nurse stating, "Your labs show you have celiac disease, follow a gluten free diet.  Any questions call the office."   First, tears, then confusion, then acknowledgement to what I knew to be true before the results were back.  When I told my husband that I was being tested for Celiac, what the disease was, and it's symptoms, he was the one that said I probably had it, as every time I eat, I get a stomach ache.  Even if only a small snack.  You see, I had a bowel resection in 1986 for Ulcerative Colitis.  I use carbs, mostly breads, pasta and whole grains to slow my gut down.   I have a first cousin on each side of my family with Celiac.  Yet, I hadn't considered it as the cause of my discomfort, or the cause of my chest pains, severe and getting worse joint pains, low B12 or iron, headaches, brain fog etc...   I called and made an appt with a GI for the consult and to have the endoscopy and help with where to go from here.  My appt is March 5th.  In the mean time, I have read that I have to maintain eating what's causing the cruddy symptoms.   Is there anything that can help alleviate the stomach pains?  Tums, yogurt? anything?  I am also on Levothyroxine for hypothyroidism.     My lab results are the following:
      Tissue Transglutaminase IGA AB               99             range--0-15
      Gliadin IgG Antibody EIA                          >100            range 0-15
      Immunoglobulin A (IGA)                           284              range 70-410
      Tissue Transglutaminase IgG  Ab              39              range  0-15
      ENDOMYSIAL  IGA, AB                        POSITIVE       range   Negative
      Gliadin  IgA Antibody, EIA                           20             range 0-15
      Oh yes, and the insurance isn't covering the lab tests....   Just looking for any and all advice for this newly diagnosed middle age woman!    thank you all in advance!
      • 15 replies

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