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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

Amber M

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About Amber M

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  • Birthday 02/08/1957

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  • Gender Female
  • Interests I own a Stained Glass and Hair Business. I do hair for 2.5 days a week and Glass for over 40 hours per week when I am up to it. I love stained glass and gave up painting 5 years or so ago to devote to stained glass. I design all of my work and do a lot of custom work. It is my passion
  • Location Maine
  1. I have been gluten free for over a year now and still have problems with Gluten Ataxia which includes some of your stuff. After finally tapping into the "Candida" issue, thanks to you people, I have been on mega doses of probiotics and am getting some relief. I researched to discover that the outside of the cell of the yeast infection produces the exact same protien as gluten and will attack the same as gluten! Shock! I had a white tounge, thats it, but obviously (after several rounds of antibiotics), ya, I had an overgrowth. My Ataxia was at its worst during both of the last 2 rounds of atibiotic. But the overgrowth of yeast has been there for a lot longer than that. No wonder I haven't been well. But another issue has cropped up. The Doc thinks there may be an "underlying" issue that brought the imulogical gluten issue out to begin with since I was genetically pre-disposed for it. Upon further research, I disscovered that they now think the over growth of yeast brings out our pre-dispossed for diseases! They are testing me for "Lymes" and "Heavy Metals" too (I work with 7 types). What ever brought the gluten issue to the surface, it is here for life now, just like diabetes, etc. I don't try to fool myself into to thinking I can eat the stuff again, but maybe corn?, or the many other food allergies that have cropped up since the gluten issue. I guess also part of what I'm saying is this journey I have been on is sometimes a drag, but the one thing that has helped me the most is this sight. It leads me to go further researching every aspect of this gluten issue. It's the thing that has saved me because I have Doctors that know nothing about this. My PA is doing research now, thanks to the "mystry" I have presented to her. Best of Luck, check out the "National Ataxia Foundation" as well as the neuropathy things.
  2. Thanks, but National Ataxia foundation says "Quest" is the only one that does the "NON-deamidated" for Gluten Ataxia (not standard Celiac) and now Quest doesn't want to tell me what test to have, they say ask my doc. The problem is, my doc doesn't know either! I am back to feeling so alone in geting help. Anyone else????? Thanks.
  3. Ya, it was gluten free. I had just recently had an attack before the antibiotics too. I am sure I ate no gluten. Sorry it took me so long to respond. I did not get emailed for some reason. Still slowly coming out of it now.
  4. Okay here's the situation. I'm sure I have gluten ataxia, have the genes, been gluten free for a year and suddenly having attacks again (I think from yeast overgrowth), but I was on the National Ataxia Foundation site and they listed the blood test for this as: Only at "Quest" Labs, Gliadin Antibody Panel #3517N (NON Deamidated). The only one specifically for gluten ataxias. I emailed them as asked if I had to be eating gluten to have the antibodies show up. The Manager of Client Services, Robert M. Panarelli email back saying I did not have to eating gluten, the antibodies would show up no matter what and if I were in an attack or just coming out of one, they would be even higher. So, I went on their test lists and found the test 3517N and under Clinical Use it states: "The antibody is Undetectable when patients with hypersensitivity are placed on gluten-free diets." I wrote back to Quest about this and the latest reply is: discuss this with your doctor and they will know what to order for tests. The problem is, I do not have, nor can find a doctor in my area (Maine) that knows a darned thing about gluten ataxia, just Celiac itself. (I do not have the digestive type) I had already found information about this before and was told to have the "Quest" lab test#8889X. I had it and it came back negative. I was 100% gluten free at the time of this test recently. The national Ataxia Foundation states that most labs do the "Deamidated" form of test, not the "NON-Deamidated" which means it will show "Celiac" and not Gluten Ataxia. They say Quest is the only one that does NON-Deamitdated. I am soooo confused and can not seem to get an answer. My PA is waiting for Quest to investigate whether or not the test 8889X was Deamidated or NON-Deamidated. But it appears I may have had the wrong one anyway. In the mean time I am also being tested for heavy metals and Lyme's just to rule them out. Can any one help me with this???? Do I have to be eating gluten, and are these the right tests? Thanks, Amber
  5. Hi folks, I am just coming out of an ataxia attack, knowing I have not touched gluten. I had to take another round of Azithromycin for my gums. I had just a week previous to that started on a large amount of Probiotics for the yeast overgrowth I was already having. On day 5 (last day of antibiotic pak) I came down with the worse case of ataxia yet. I couldn't stand on my own for 2 days and had all my other neurological symptoms as well. Scared the _____ of of me! I read up on the "Yeast Die Off" info as well as the Antibiotic side effects. I also read that the yeast's outer cell shell gives off a protien similar to gluten and can cause a gluten reaction. What do you think? Think it was to whole thing combined? My father and brother have gone off the deep end and think it's the water from my well now, but I really think it's this yeast mess.....
  6. Check what DQs you have. Mine are 1 and 3 which are gluten ataxia genes, I do not have 2 or 8 and my biopsy and original blood test were nagative too. I just had the IgG Non-Diemiated #8889X by "Quest" Labs for the gluten ataxia (do not have to eat gluten for-by the way I was gluten free for 3 months when I had the original tests) Waiting for the results now. Maybe you already know this, just threw it out!
  7. I got really excited about the oatmeal till I saw the soy tooo! Oh crappy!!!
  8. Igg Test

    I broke out in what appears to be cold sore blisters inside my bottom lip. This has happened a lot in the last 2 years, mainly when I eat corn. The ingredients in everything I bought seems to be good. The Stevia is Pure, I contacted the company. One container is pure and the other (packets) has "Inulin" fiber made from Chicory root. My lips feel swollen, but don't look it. I know what a severe reaction and ER required is, believe me, I've been there from Soy, more than once when I was younger. Inside my mouth seems fine except the white tongue. It's kind of funny because other than the breakout, I actually felt better today than I have in weeks. On another note, my daughter said to me last night, "I think you dream some of this up." Nice. I was really hurt. As sick as I have been. Whats really funny is that she has at least one of my genes and 3 auto-immune diseases (had graves, thyroid nodules-had if removed and just had major back surgery for bone degeneration etc. two months ago) She will not hear anything about the gluten. It really makes me sad that she won't read about it and face the facts. I feel quite confident that she and my grand-daughter have some problems. She is 35, I can't force her to deal with it.....I breaks my heart. I am hoping for improvement daily! Thanks for all your support, I don't get it from some of my family.
  9. Igg Test

    I am giving up sugar and using "Stevia" sweetener, but I know I will still eat Pamalas Pancake mix, unless I have to give it up too, but only for awhile maybe. I am on my first day of "mega" doses on probiotics and my mouth broke out tonight. Not sure why, (its all gluten, etc. free), but I did read it might get worse for a bit before it gets better, so maybe that's why. I will be hanging in there. The lab called today, I had to go do the IgG draw again because the lady that took my blood was so worried about refrigerating it, she forgot to put my name on the tube!!!! The lab would not except it. Cute, but I forgave her and laughed when she owned up! Just a day delay, I can live with that. I'll be in touch. Thanks
  10. Igg Test

    Wolicki, I just want to give you a special Thank You! This may be what will help heal me soon. I should have listened to others before on the issue of Candida, but for some reason this article made it click for me. I wrote a post this evening here on my day with this stuff, hope you read it. Thanks again!
  11. Igg Test

    Ya, I am still a mess. It's been about 3 weeks now. I am better early now and worse by evening. It's starting to leave. The thing is, I know I did not get glutened! After reading the article and doing the "spit" test for Candida, and realizing that my tongue is white for a reason (duh!) along with many other things, and knowing I have increased my sugars and other carbs since going gluten free and reading research that says the candida infection has similar protiens that cause the body to react like it has been glutened, I now think I am reacting with the ataxia to the candida. I spent alot of time on this site reading about the candida, but because I did not have a vaginal yeast infection, I did not think I had a problem. I was lacking knowledge on the slubject. I spent half the afternoon today at the local health food store being educated by the owner, Bob. Thank God for you all and Bob! I picked up the (expensive) probiotics today and found a all natural sweetener, "Stevia Plant". I start tonight. Is it true that I may feel worse for a bit (a few days)??? Also, I noticed you have double DQ 3 genes! Know wonder you have Ataxia. Do you at least have a doctor that knows something about it? (I hope) Wish I did. And, good news, I had the IgG blood test today by "Quest". The "NON DEMEATED" Quest lab said I did not have to be "gluten free" to have it, thank God. I'll post when I get the results. If I come up negative for antibodies, where does that leave me? Could it be the Candida? I have DQ 1 and 3 (Imulogical gluten sensitivity and ataxia genes) Anyway, I must lay this tired body down. I have cried a lot today, I just want to get well again. Thanks people!
  12. Igg Test

    Great article, thanks so much. I am geting ready for a round of antibiotics, couldn't have come at a better time. Thanks again!
  13. Igg Test

    I am DQ 1 and 3 which are the genes for imulogical gluten sensitivity and gluten ataxia. I also do not carry DQ 2 or 8. The research on gluten ataxia comes with any of those genes, but no digestive symptoms in alot of DQ 1 or 3. (although I tested negative for Celiac after being gluten free for too long, I did have some upper digestive and bowel problems too)
  14. Igg Test

    Duh!!! Yea, contact the lab. Of course!! My brain is not working right now! I will, thanks. I know that when the ataxia is to the point that you can't walk, etc. then an MRI shows cerabellum atrophy. I have seen some pictures of MRIs like that on line. The quack neurologist that I saw said my MRI was okay even though the balance tests indicate that it coming from my brain. The eye movements too. But she diagnosed me with "Hperventalation Syndrome". I have an extesive list of symptoms which she did not go over with me and she was extremly lacking knowledge of the "Brain Grain Connection." I am considering requesting my MRI for another doc. to look at. I was told by some in the medical community that UBO's are often ignored if they are an "unknown" kind of thing. Anyway, I can't find a doctor around here that knows anything about gluten ataxia, just Celiac, and not too many know much about that!!! They all better get a clue, because 1 in 8 have Celiacs or Gluten Intollerance! Speaking of which, I really feel so alone in this, I appreciate so much that I have you all, but I need help from a knowledgable doctor at this point. I am walking with me feet apart again to hold me up! I am discouraged again. I was doing so good, I don't really know what happened. I am (other than the pizza) so careful and eat mostly fresh and organic foods. Right now, and for days I have had my neck a mess and up from the base of my head to my crown feeling like I am going to have a seizure or somehting. Twitching and numbess and tingling in face, mucles contracting here and there and a pulling sensation on the left facial area, ocular pain, visual disturbances, dizzy and sick to my stomach. Constipation, etc, etc. It's messing up my life! Thanks for reading my "VENT"!
  15. I have been gluten free for over a year now and done pretty good finally, until last week. Full blown gluten ataxia episode right now. I have investigated the "four" gluten free proccesed foods and discovered that a gluten free (local) pizza I've been eating had "less than 20 ppm" of gluten. I am hypersensative. No more of those of course, but my question is: although I know one has to be eating the gluten before any of the standard tests, but in reading that the "IgG" (non-demiated) with "Quest" Labs can determine it you have gluten ataxia, do you have to be eating gluten for that one? Thanks