• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About SuzieQ

  • Rank
    New Community Member
  1. I know this is an old thread, but I wanted to say that I was diagnosed in February with Autonomic Dysautonomia. I found this thread when looking for link between Celiac and Dysautonomia. My biopsies were negative of celiac disease, but I had high IgG levels. I started a gluten free diet anyway and had no Dysautonomia symptoms for a week after that! The symptoms did come back, but seem to be better when I eat gluten free. How has your Dysautonomia been since being gluten free? Have you seen any improvement?
  2. Thank you so much Lynne. I will look up gluten ataxia. I haven't heard of that before. I contacted a distant cousin tonight who works in a hospital lab. She doesn't draw blood, she actually looks at things through the microscope. She shed some light on things for me. She said an IgG elevation indicated a past reaction to Gliadin. An elevated IgA would have been a present reaction. I am beginning to wonder if I messed up the blood tests and biopsies by going on and off of gluten. For those who might can help me answer this question, I am putting a timeline below: 1/27/06- my doctor mentioned he thought I might have celiac disease. I came home and did some research and by the next day I was off gluten. He wanted to run blood tests when I came in for my physical in April, but after reading about it, I asked him to go ahead and run them. 1/30/06- Began eating gluten again because I was having the blood test the next day 1/31/06- I had blood drawn. Results were IgA "normal" IgG - 43. Stopped eating gluten the day the blood was drawn. 2/07/06- Got results of blood test, doctor referred me to gastroenterologist. Endoscopy scheduled for 2/21. 2/09/06- Began eating gluten again to prepare for endoscopy. I was feeling so bad after reintroducing gluten, that I called for an earlier appt. and got one for 2/16/06. 2/16/06 - Date of biopsy - results negative, but have been gluten free ever since. Is it possible that I messed my tests up with all of the going on and off gluten I was doing? If I had only known then what I have read on this board, I would have just stayed on gluten until the endoscopy. I believe it was harder getting off and going back on it. The symptoms were so much worse that way. Thanks for all of your help and support. It means a lot as I try to sort this stuff out.
  3. Thanks all of you for the information and support. I am continuing to eat gluten free and I am still feeling sooooo much better. I will continue to eat gluten free - probably for life. I don't know why, but I have this nagging need to know. I am trying to just let it go without a definitive diagnosis. The main question I still have is this........ What other diseases are indicated by high IgG levels when the test was done specifically to Gliadin? Does this mean that I at a minimum that I am allergic to gluten? Is that what the IgG test means, or are there other serious disease possibilities here? I can't get anyone at my doctor's office to call me back about this to discuss this with me. They have one nurse , and apparently she is the only one who can discuss this with me or ask the doctor about it, and she was on vacation last week. She came back yesterday, and was off this afternoon. Frankly, I am about to give up on them. I am extremely frustrated with them at this point. I appreciate all of your feedback.
  4. Thanks you guys. "Did your doc do a visual exam, in which he actually looked at the lining through the scope, or did he just take random blind samples?" My doctor said he didn't see any damage, but the proof would be in the biopsies. "Well, either way, you feel better, right? That's a huge something, don't you think? Also, the small intestine is ~22ft long, there may be damage further down the line that the endoscope missed." That is a huge something! I committed to remaining gluten free no matter how the biopsies came out, and I intend to. For me to take myself seriously and for people in my family to take me seriously, I needed to hear a positive diagnosis. I agree with what you said about the length of my small intestine. The tube is only 5 ft. long that they use to do the procedure. I didn't expect him to look at all 22ft. because all of that winding could have been more likely to cause perforation, I think. It just makes me wonder if there parts of my intestine he couldn't get to that might have been damaged. I had thought about eating wheat again and letting a dermatologist biopsy what I believe to be Dermatitis Herpetiformis, but I just don't want to go through all of that stomache pain again. Sorry to ramble on..... Thanks again.
  5. I got the results of my biopsies back today. They were negative for celiac disease. I am feeling kind of down right now. If I don't have celiac disease, why was my IgG to Gliadin high, and why do I feel so much better since eating gluten free? - not in a brain fog and not nearly as tired since I had the biopsy? Could this all be in my head? I have lost an inch - in fluid I believe - off of my waist since going gluten free 5 days ago. I don't look as puffy in my face. Could high IgG levels indicate that I'm just allergic to gluten? I'm confused. Any help will be appreciated.
  6. Thank you fritzicurls! I was starting to think I was the only one! He didn't recommend a colonoscopy, but he gave me a card I have to smear three stool samples on and mail in. Oh what great fun!!! It checks for blood in the stool, I believe. I am almost 35 and I had a colonoscopy four years ago before my hysterectomy. The prep was loads of fun!! Maybe that one will suffice, but if the pain doesn't clear up with the gluten-free diet like yours did, I will definitely inquire about it. Thanks again!
  7. I was wondering if DH has to have blisters? I get a raised red rash sometimes especially while I am asleep where my arm might be folded or the skin on my legs is touching on the inside of my thighs. There are no blisters, but could this be DH too? I have the classic blisters behind my knees and on the inside of my elbows sometimes, but I just wondered if the other might be DH as well. Thanks.
  8. I am waiting on my biopsy results, and while I wait I have a question. When I last saw my doctor, he noted tenderness of my colon on the left and right sides upon palpitation, but no tenderness in my small intestine. Anyone else tender in the colon area? Thanks
  9. I am sooooo thankful to find this thread! For the last 6-8 weeks I have had the tightness and the feeling of someone sitting on me in my chest that many have described here. When I went gluten free, the pain went away. Since I have been eating gluten again to prepare for my endoscopy - which is tomorrow morning- my chest has hurt so bad. I am too young for heart problems, I think, but this pain mimics heart problems so much. It was a comfort to read that others experienced what I've been experiencing. I am sorry for your pain, but it is nice to know I'm not alone. Thank you so much.
  10. Waking Up Every Hour To Pee

    Cape, This is so interesting! I have had burning feet at night off and on for years and have never been able to find the cause. Mine itch intensely also, but there is never a rash or anything. Maybe it's been gluten! I wonder if anyone else here has had that problem? Thanks for sharing Cape.
  11. Thanks Jen! That article is very helpful.
  12. Thanks you guys for sharing your experiences. I really appreciate it. My Gastro appt. is 2/22, so I will try to eat some gluten each day between now and the appt. I don't really know when or if he'll schedule a biopsy, so I want to be "prepared". I think for a definitive diagnosis and for the sake of my child, who if I am positive for Celiac via the biopsy, I'd also like to have tested, I will have a biopsy done. Eating gluten free, I am feeling so much better already. Instead of breakfast cereal, a sandwich on whole wheat with Wheat thins, and Fried chicken, with veggies and a biscuit as a sample daily meal, I'll just have one gluten food each day. That much of a reduction shouldn't make me test negatvie on a biopsy should it? Thanks again.
  13. I have only had two blood tests done- an IgA and an IgG specific to glutaidin (sp?). My IgG was high. Does anyone know of any other diseases that could cause this to be high while the IgA was normal? I am debating whether or not to even see the gastroenterologist my doctor set me up with. He apparently doesn't know much about Celiac Disease, nor does any Gastro in my area. What are the benefits of having a definite diagnosis? Thank you.
  14. Thanks for the help everyone. The Friday before last when I had the blistery rash that I believed to be DH, I was in my doctor's office for another problem. I have been having problems with what is probably heartburn, so I was including everything I could think of that is related. I had been eating a lot of whole grains (lots of yummy Sun Chips) and had this blistery rash on the back of my knees and in the folds of my elbows. I told the doctor about the bloating problem I have - I look 9 months pregnant most of the time. He started asking me "Celiac" type questions, so I asked him if he thought it was a possibility. I had read about the symptoms a couple of years ago when I started getting the rash in my elbows and behind my knees. I showed him my arm and he said he thought that might be what it is. He ordered blood tests to test for it. The DH type rash started showing up about 2 years ago, and only when I "overdose" on grains. I immediately started eliminating as much gluten as possible to see if I felt better. The lethargy and brain fog left right away. Four days after the doctor's visit, I was to have the blood test, so the day before- on Monday I ate a bowl of Raisin Bran for breakfast and had a sandwich on whole wheat for lunch. I don't know if I had been eating enough gluten for the IgA part of the test to register properly. I picked up a fax of my test results a little while ago, and those two tests IgA and IgG to antigliadin were the only two he ordered. From what I understand there are two other tests that are also very important. I had someone advise me that an endoscopy will be unnecessary since I have what appears to be DH. Having that, I am definitely positive they said. I am confused right now. I don't really want to have an endoscopy or biopsy. Can't I just go gluten free and not have it?
  15. Hello All! I am new to the thought of Celiac Disease and this forum. I found out today that my IGA test results were normal and my IGG results were somewhat high - 43. These were both for antigliadin. Does this mean I have Celiac Disease? I talked to the office manager at the doctor's office and she couldn't tell me much. She said these were the only two tests he ordered. She said they were referring me to a Gastroenterologist who might just want to "watch" the levels. I have had Dermatitis Herpetiformis when I eat lots of grains - Sun Chips brings it on really strong, so I thought it was just a given I had Celiac. Any Insight is appreciated! Thanks.