I am 52 and Female. I have Genes DQ 1 and DQ 3 with subtypes 7,6. I have Gluten Ataxia and neuropathy from severe gluten sensitivity. Blood test for Celiac Negative (gluten free at the time). Biopsy for Celiac (one in duad.) Negative after being gluten free for over 2 months. I guess I do not have full blown Celiacs, but the Gluten Intollerance.
I have been trying to find out why I have been so sick for years, but more recently the last few years with the onset of many neurological symptoms. Been thru a few doctors and most haven't known much about Celiac or Gluten Ataxia. I have done research on my own that led me to this site and many others. I finally decided to pay for the gene test myself and find out for sure. I have one gene from father and one from mother. This means my daughter (with 3 autoimmune diseases) has a least one of the genes. She will be tested soon hopefully.
I have a family full of autoimmune and digestive problems. My Grandmother lost half of her intestines at a very young age, and no one ever knew why. This may have all come from food!
I have been allergic to soy for over 30 years, but had never heard of the wheat-gluten connection until a little over a year ago. Wow!
My story is so long, I can just be brief here, but I am amazed at all of this. I have been gluten free for about a year now and have had much improvement, but still suffer too. I feel that I will get well eventually.
I have continued to eliminate other foods as I am slowly improving, but still have many neurological symptoms. I have eliminated all grains other than rice. I just eliminated corn in January, and at first, it started lessening the facial numbness and muscle twitching, then it came back, and I am sooo frustrated.
I have decreased the amount of nightshades, but have not completely stopped potatoes and tomatoes yet. I notice when I eat night shades, I have the night sweats! I am taking several supplements and my vitamin levels are normal. Every test I have had so far shows good results. My bowels have continued to show great improvement and I feel half human a lot now.
I have eliminated so much. I eat whole fresh foods mostly. The only mix I eat is Pamala's Pancake mix. I do not buy anything processed. I know I could have permanent nerve damage, but I had hoped it would all go away by now, but I see continued improvement, so it helps me keep my chin up.
I have to remind myself of the things that have improved:
I am not as dizzy and feeling like I'm going to fall as bad as before. I don't have to walk with my legs apart to balance myself as much.
I have had NO migraines other than one after the medication used during the endescope.
The muscle twitching has lessened greatly.
My constant neck pain, ache and head pressure is gone most of the time.
My bowels have improved greatly.
The muscle cramping has lessened.
I can think clearer most of the time.
Skin problems have lessened. Dry peeling skin has lessened. (especially on feet) Some skin lesions have completely gone away.
Less visual problems.
No nausea. No Gerd at all.
No chest pain.
I notice I am less depressed and have more energy than before. I have accepted my new diet and look for new ideas in cooking more. I am less anxious and full of fear. I know I am improving and will continue to get better. I have to have patience. That is a hard thing for me.
Latley ( Nov 2009) am having trouble with what appears to be Candida. Just started a new regiment for this now. I had increased my sugar and other gluten free "Carbs" after going gluten free, which may be the cause of my latest bouts with Ataxia. Hoping for the best!
Thanks so much
I had the endescope with biopsy after being gluten free for over two months and it also came back negative. That is why I decided to have the gene test (results below) and then did a pile of research on the genes that I have. Gluten sensitivity is the beginning of celiac disease and can cause many serious neurological problems with or without digestive issues. (I have gotten rid of Gerd completely since gluten free and still have lower colon problems) The gluten attacks the base of the brain when you are sensitive rather than celiac. My genes are the ones that usually cause gluten ataxia.
I had the blood test and found out they only did one part of it first of all, and then I was gluten free for a few weeks, but mine came back negative. I had done the challenge diet and had good results off of the gluten and sicker than a dog back on it. I had the gene test because I was sure it was the gluten. I am severly gluten sensitive, but do not have full blown celiac. So if your test comes back negative, beware, you could still be gluten sensitive, which leads to full blown celiac. I got a book called "The Gluten Connection", best information I have read yet. You might want to che
Your son may be "gluten sensitive" rather than celiac. It might be worth doing the diet to try and see if the cough stops.
My gluten reaction is dry cough and weezing along with many other things. When ever I wheeze, I go back over what I have eaten. I think it is part of it. I hope you realize how serious a condition you have and the autoimmune diseases you can get if you do not stay off gluten for good. Please think about this. Especially with the DQ 2 gene!! Take care.