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 FREE Celiac.com 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 Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Welcome! I think you will find that this forum has some of the best, most kind, caring and knowledgeable people you will find. When I was in the process of being diagnosed, I honestly don't know what I would have done without them. I met my best friends through this forum.
Please know that you are NOT alone . . . and that you are in glad company. Just watch out during the full moon . . . . . . . . . .
Since a well-known friend of ours is having difficulty getting Altoids up in the North , I thought I would purchase some for her and send them there.
PLEASE NOTE: The tins I purchased of Altoids Smalls specifically state that they contain Wheat Maltodextrin.
The Altoids gum contains Isomalt -- I was a little concerned because I have been chewing that, as well -- but I Google'd it, and found this, so it looks okay:
I have been told by the GI and the neurologist that my inability to poop is DEFINITELY related to the neurological celiac. I have almost no motility without using the Miralax. Before that, I would do the same as you are doing -- LOTS of veggies, at least 12-15 prunes per day, what felt like gallons of water and . . . . . NOTHING. I would end up after 10-12 days having to remove an impaction. Sorry, I told you it was grose.
Even WITH the Miralax, I went to the Neurologist two weeks ago, and she could not hear any peristaltic sounds (bowel sounds). She kept listening and listening, then finally found one spot on my abdomen that had some type of sound. She said that it is definitely related to all of the neurological dysfunction that I have. It makes sense . . . . I didn't start to have that problem until I started with the neurological symptoms --- the stumbling, falling and all the like. Before that? I never knew when I was going to have the big D!!
What I find amazing is that, even though I only tested positive for antigliadin antibodies, since being gluten-free, I haven't had diarrhea once. That's in almost two years. Granted, for two years prior to that I didn't poop, but . . . . . . I also don't remember if I had any bouts of diarrhea during that time. Wish I could remember. It would be really interesting to know.
Thanks, Andrea. I think I definitely am going to have the gene testing done. I am concerned with possible "glutening" -- my neurological symptoms are progressing, and my doctor would not test the antigliadin antibodies. He said I would ALWAYS have elevated antigliadin antibodies, and if I have been gluten-free, there's no point. My question was: What if I have been glutened from cross-contamination? He just poo-poo'ed that. Can they JUST test those antibodies, or do you have to order a panel??
Thank you so much for your help. If I test positive for the genes, I'm DEFINITELY having my kids tested -- even though they're 21 and 24. Explaining it to my son is going to be interesting . . . .!!!!
I have a question about Enterolab. It's kind of grose, but hey -- on this board we talk about poop enough that everyone is pretty comfortable with the subject.
I have neurological celiac. I have only elevated Antigliadin antibodies. My antitransglutaminase and antiendomysial antibodies were negative, and the biopsy(ies) on my small intestine were negative, as well. My GI even had a GI celiac specialist review the slides himself vs. just taking the pathologist's word for it. He did this mainly because I've had a life-long history of "irritable bowel", "ulcerative colitis" or "spastic colon".
My question is this: I've been gluten-free for almost two years. I do have products which contain casein, have stopped drinking milk because it makes a heinous rash appear on my face, and have tested positive on scratch tests to both milk and casein. My biggest question lies in this: Unless I take Miralax two times a day, I don't poop. At least not on my own. Ever. This is part of the neurological damage.
So -- all that garbage being said, can Enterolab still find antibodies, etc. after I've been off so many things for this long? Also, do they do the testing for genetic markers? My (former!) doctor's office only did bloodwork for HLA-DQ2 & HLA-DQ8 -- and no sub-categories. They didn't have the capacity to do HLA-DQ1, etc. Do you need a physician's order to have these tests run? Are they expensive? Have you been satisfied with the information they have supplied you?
Any help / suggestions you can give me would be greatly appreciated. Even being an "old-timer" with regard to my diagnosis time, I still have tons of questions. Thank you, Lynne
My celiac neurological trouble started with my eyesight. Then I had the balance issues, then the tremors. I strongly recommend that you see a COMPETENT neurologist, and soon. I may even ask him/her if they have treated patients with neurological celiac. It's not an unreasonable question. Sounds like you're ingesting some type of gluten, and it may be targeting those little Perkinje cells in your cerebellum.
I'll go with you, but you don't have to hire me!! I have gotten to the point that I can't stand when a professional demonstrates ignorance in his/her field. Given that I'm not even PRACTICING and I still read books, journals & trade publications, I find it INFURIATING that other professionals don't keep on top of their game. Plus, when I get angry, my voice gets very low, very quiet and my words are very succinct. Also, I try to "lose" my southern accent (Karen, not a word ). My son equates it to a volcano ready to erupt -- you just don't know when. I like that analogy!!
Metta -- I forgot about that! I was hacked off . . . you were sick and they were being idiots. So, "neice" Lynne made a little call . . . .
Well, I never picked up my letter, and this weekend I received it through regular mail. Or actually, I DIDN'T receive it through regular mail
Here is my letter to my doctor. Sorry it's so long . . . . .
Dear Dr. :
Effective immediately, I no longer will be needing your medical services. I was very disappointed with the results of my most recent appointment with you. When I called to address this issue, I was referred to your office manager. After leaving voice mails and a message through another employee, these calls were never returned.
During my visit on ,I had several questions for which I needed answers, none of which I perceived were taken seriously. Each appeared to be brushed off as insignificant and when all else failed, it seemed as though you reverted to questioning my psychological condition. Sadly, you did not appear to understand that a neuropsychological evaluation is a very functional evaluation. It is designed to determine which areas of the brain are not functioning or coordinating properly. A MMPI is completed at the end of the session. As you will read on my report, it was well within normal limits. In addition, I have documentation from two Psychiatrists stating that my condition, and the symptoms with which I present, are not a result of a mental defect or
You can sign a form that prevents the office staff or the doctor from disclosing information to your parents with regard to your condition. They mark the chart (usually) with some brightly colored sticker so that everyone will know that you have one of these papers on file. HIPAA makes it VERY clear that once you sign this, no one is allowed to discuss with your parents your condition. The last thing you need, on top of battling an illness, is people who don't believe you. I've been there with my sister, who tried to convince my entire family that I had "conversion disorder" -- a Freudian concept which is not accepted by today's standards. At 20, you have the right to privacy. I treated patients who revoked permission to disclose information. It's more common than you think.
I'm anxious to hear how the scope goes (or went -- have been in a whirlwind lately) and hope you're doing well. Please take care of you.