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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Jen1104

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  1. Cyclinglady- Thanks for the suggestion about seeing if there is a pic from my endoscopy. Good idea! I remember getting pics but I'm pretty sure it was just from my colonoscopy. I'll have to dig those up. Yep, I think I may have gluten ataxia. That's scary that if it goes on long enough it could be permanent. I'm hoping I keep getting better being gluten free, time will tell! That's interesting about your niece's crohn's diagnosis. Just goes to show that scopes don't always catch everything. I guess no test is 100%. Psoy- Yep, it's wrong how we are sometimes treated by the medical community. I'd be happy if they would just listen and seem interested in trying to help me, instead of pushing another pill to try to cover up yet another symptom. Not to mention their insensitive and sometimes downright rude comments! I could start a new thread on that alone.
  2. Hey Kareng, Yes, if you can come with me, that would be great! Lol Honestly, I've been treated so badly by some docs over the years I despise going to them, and half the time I forget what to say or ask. But I'm getting better at that! I did ask my dr a few questions about the villi being flattened, he wasn't sure about an answer. He said it may be celiac and he just missed the damage with the biopsies--or I could not have it. Real helpful. I think he said Crohn's could cause villi flattening sometimes but my colonoscopy was fine. I do need to ask dr if he biopsied the flattened areas--or not--but I got a copy of the endoscopy results and nowhere in report does it say seeing flattened villi so there may not be any record of it. (Basically dr just told me some villi were flattened after waking up from endoscopy) And, unfortunately I was not aware of the blood test when I first heard about gluten and decided to try going gluten free. Very frustrating. I may never know.... but thanks for response.
  3. Hey everyone, I had an endoscopy and colonoscopy last Nov because of burning, pulsating stomach pain and other lovely colon issues. I had already been gluten free for 6 months when this was done. (I know, I know, I had no idea I had to keep eating gluten for the tests when I first started the diet). The endoscope with magnifier showed some of my villi were flattened and that I had chronic inactive gastritis, but the dr did 5 biopsies for celiac and they were normal. I am confused about how the endoscope can actually SEE damage (flattened villi) but yet show nothing in the biopsies. I'm sure being gluten free affected my results. (And unfortunately, I can't do a gluten challenge. I have a VERY bad reaction to gluten-very painful burning nerve pain throughout most of my body, extreme anxiety, walking sideways, WEIRD!! And this was from eating 4 servings of gluten free processed food in a day!) My history is I've had muscle and nerve pain for 25 years along with pretty severe fatigue and brain fog. The stomach problems came on in last 5+ years along with bad coughing, sore throat, burning tongue (reflux I guess) and hair loss in last year or two. I've been strictly gluten free for 9-10 months and stomach pains are 80% better and just recently have had some relief in neuropathy and fatigue issues (I've had good hours, not days yet). I'm hoping I'm on the right path for all my health issues. My brother has had some stomach issues and bad neuropathy in his feet the last few years, and my mom also has unexplained neuropathy in legs and feet too but they are not really interested in getting tested. I just wondered about the flattened villi with biopsies being fine and also if I have gluten sensitivity (and not celiac), can that cause flattened villi?? Thanks for reading and for your replies!
  4. Yes, I have heard of her and just read a bit about the diet online. I wouldn't mind reading one of her books. It seems like a pretty extreme diet but I'd do just about anything to feel better!
  5. Hey Cyclinglady, I went to Mayo's clinic about 20 years ago and was tested for MS, and it was ruled out. Mayo's diagnosed me with fibromyalgia. I've thought about having MS tested again. From what I've read though, there's not a definitive test for MS (if I remember correctly). No one in my family has MS or any other autoimmune disorders. But I should look into it, huh? I've just gotten to the point where I despise the thought of even going to a new doctor.
  6. Plumbago, I take 500 mcg a day of B12, I'm thinking of doubling the dose. I just had blood drawn again last week to see if B12 has gone up any in 4 mo. with sublingual. I haven't gotten my results yet though. I've had blood sugar checked recently, it's in normal range, so diabetes wouldn't be a cause of my neuropathy. I have been gluten free for 10 months, and grain and dairy free for the most part for 8 months as well as low sugar. I feel like I'm sensitive to nightshades and eggs so I avoid those also. 90% of the time I eat natural, unprocessed foods. I've had these pains and other issues for 25 years and starting to think I've had undiagnosed celiac for that long. It sure would be nice to find the root cause of a medical problem, wouldn't it?! All docs want to do is treat symptoms which usually only causes more problems. But that's a whole other conversation! Thanks for your thoughts!
  7. Very cool you have your own bakery I've tried making own grain free bread and it was expensive and pretty much tasteless. I will definitely check out the Julian Bakery loafs. Thanks for the tips!
  8. Appreciate your thoughts on this Ennis. I've been taking 500 mg of magnesium for a few years and my mag levels were at moderate levels. I just take magnesium oxide form but will look into the liquid form to see if it absorbs better. And probably up my B12 too. Thanks for recommendations that work for you! My nerve pain is a bit better today. It's been really bad for a couple of weeks. I ate some "gluten free" bread and pasta in one day when the worse pain started (which I haven't eaten for about 6 months because I'm on mostly paleo diet, not just gluten free) I'm thinking I got too much trace gluten in one day! The next day I had the burning nerve pain, I was walking sideways, extreme anxiety where I just had to try to sleep it off. Really messed up!
  9. Hey everybody, I'm pretty new to the forum and to having probable celiac disease. I have an EXTREME reaction to gluten and gastro doc said he saw some flattened villi, but the biopsies were negative. I've been strictly Gluten-Free for about 10 months and my stomach and other gastro problems are about 90% better, which is huuugggge! However, I have had intense burning nerve and muscle pain for many years, which have not been helped yet with Gluten-Free diet. The worst of the burning pain is in my hands, feet, and calves, as well as burning in my face. I had many of my vitamins checked a few months ago and B12 was the only one that was low. My B12 was 188. I've read that normal is 200-800. Since finding out I was low, I have been supplementing for about 4 months with 500 mcg sublingual with no improvement in pain or fatigue or anything else! Wondering if anyone else was eventually helped with this type of pain by taking B12. Should I be taking a higher dose?? I would like to try injections but dr said I just needed supplement. Also, if anyone knows, what is the most absorbable form of B12? Thanks for any and all input. I've learned more on this forum than any dr, that's for sure! Jen
  10. Caspi-Ann, thanks for your reply. I'll look into what you suggested. I have given up dairy for the most part so I don't think that could be a problem. I just ordered gluten-free shampoo and gel just to see if maybe it would make a difference. Victoria, thanks for the info and video! I will definitely try the apple cider vinegar soon!
  11. Hey Jherm21, Thanks for sharing your story and I'm sorry you're having this problem too. It's getting to the point where I don't want to leave the house! I did see a derm and have also been on the ketoconazole shampoo for several months and it helps slightly with itching and burning scalp, but not with hair loss. I was told to use a good conditioner after using this shampoo as it can really dry your hair out and make it brittle. I'm in my early 40's and derm said it may be hormones or female pattern baldness! That's not something a woman wants to hear! My hair is growing back though--it's about 1-2 inches long in spots, but other hair is still falling out. I wouldn't think it would be female baldness if it's growing back. I really feel like it is the inflammation on my scalp, but don't know what to do about it. Very frustrating!
  12. Thanks everybody! I did have my iron levels checked as well as Vit D, magnesium, B6 and B12. All were normal except B12 which was 188 with optimal level being between 200-500. The doc told me I didn't need a B12 injection though, just supplement. I've also been taking multi-vitamin for last month or so. So far not helping. I really feel like the scalp issues are making hair fall out but don't know what to do about it. All docs do is have me try yet another steroid on scalp. What do you guys think about the burning, itchy skin?? It's over a lot of my body today, no rash with it now, but really uncomfortable, UGH!
  13. Thanks for reply. I have had my thyroid and some of my vitamins checked. I just had my TSH and T3 checked, which was normal. I need to check for Hashimotos but haven't done it yet. My B12 was a bit low so taking supplement for that. I have not had sleep study done but need to, I guess :-)
  14. Hey everyone, I've been diagnosed with possible celiac. I have not had the blood test but have had an endoscopy. GI doc said he saw flattening of the villi, but the biopsy was normal. I had been gluten free for about 8 months before the endoscopy though, and doc said this could make biopsies be normal. I am NOT willing to do gluten challenge--have extreme reaction to gluten! My stomach problems and other issues will be terrible for 2 months if I eat a stinkin piece of bread! (which I def don't do anymore :0) My question is about hair loss. My hair started falling out about about 3 months before going gluten free and before I ever knew I might have celiac. I have had a pretty extreme case of what seems like dandruff (intense burning, flaking, itching) for many years but never had hair loss with it until now. I have lost half my hair in last 10-11 months. After doing a biopsy on my scalp recently, it just showed inflammation. I've been on a steroid solution for scalp for a few months but only helps a bit with burning, flaking---not hair loss. I didn't know if this could be related to celiac, or not. I also have mild to intense burning skin sometimes with occasional itchy rash usually on chest or stomach. From what I've read about DH rash, it doesn't really sound like that (I don't have any blisters). The rest of my history is constant muscle pain, nerve pain, extreme fatigue for the last 25 years. (Diagnosed with Fibro years ago), plus many other annoying things! Just wanted to get your opinions as most docs are clueless! Thanks!