I have had serious neurological problems for two years. I have two nephews and two sisters with Celiac's. I have seen countless doctors and neurologists baffled by my problems that new my family history and never mentioned this may be my problem. It has been two years I have been sick and I always thought of celiacs as purely a gasto problem. As the doctors in my area are obviously not that aware of celiac's I would like to know the names of the specific tests that ate the most accurate so I can specifically ask for them. Also can these tests show negative even if there is Celiac's? Also is genetic testing a good thing to have done? My 16 month old son has loose, crumbly stools sometimes and the smell is so fowl i am concerned about him having it as well especially when this may be the reason for my severe neurological illness I have been suffering with for two years. At what age can my son be tested for Celiac's? So any advice on which testing I should be asking for would be much appreciated. Thanks, Mya
From all what I have been reading..yes genetic testing is good to have done especially for your son. If you are not on a Gluten Free diet, I would advice you to have your dr refer you to a GI who you should ask to perform biopsies of your small intestine. From all that I have read sometimes the blood test may indicate negative but that is still not conclusive so the biopsy is the way to go. I also read that the gene testing is wonderful too because it will show whether or not you have the genes for Celiac even if the blood test or biopsy shows negative.
What neurological issues are you suffering? because although, I get the nausea, fatigue, bloating, I also get near syncope and vertigo and have been asking on various forums whether this would be part of Celiac too.
Every tests that I have taken came back normal except that I haven't done the biopsy of the small intestine because all these years the doctors could not understand what was causing my near syncope even when I told them about the foods. I just found out about Celiac in March and went on the Gluten Free diet and that has helped me tremendously but to do the biopsy to confirm whether or not I have Celiac, I would have to go back on Gluten diet which i am so scared to do because of the near syncope feeling..
I have been suffering for over 12 years but the last two years have gotten worse. I get near syncope(feel like am going to faint but never do) and vertigo(like am falling or moving when standing or sitting forward). I have always associated my feelings with what I ate because it starts with my digestive system then the feeling of nausea, sweat, ringing in the ears and the feeling of going to pass out comes...then the bowel movements and after it's the lethargic or generalized weakness which now last for days after eating some kind of food. I have done blood work for Celiac which was negative but I may not be celiac but gluten intolerant...not sure. I am now on a Gluten Free diet which has helped tremendously but am still cooking gluten foods for my family and sometimes I guess even if certain foods indicate they are gluten free, there is lactose in there which makes me sick too.
Please let me know if you are having the same symptoms as I do..
My advice is try the gene testing for your son...google the celiac site and you will see which tests by Dr.Scott Lewy. For you if not on a gluten Free diet then do the biopsy to confirm....it is an easy procedure but like everything else has risks.
Thanks for your reply. The neurological issues I'm suffering are muscle wasting, muscle twitching, severe memory problems all at 32 years old. I googled neurological and celiac and many articles including one from DR. Lewy came up on this issue and many articles said that people that have celiac and suffer the severe neurological problems often have no evidence of in in there bowels. No neurologist can diagnose me they see the problems but can't explain them as my tests are normal. I am hoping I can reverse some of the damage or slow down what is happening to me. Odds of celiac are high because of two nephews and two sisters with celiac. This genetic testing pardon my ignorance would it be best for me to have it done or would my son and I both need it done?
If you are having that many issues and no one can give you a good answer, I would try just eliminating gluten from your diet for a while. I was sick for several years, same story, doctors doctors doctors and no one would help me. I ended up severely ill and in the hospital for 4 days due to accute dehydration. I had never heard of Celiac at that point but a great GI doctor recommended I try the diet. I do great on it though no tests show levels high enough and I think I would become incredibly ill if I tried a challenge test for biopsy and stuff. I had a lot of confusion and difficulty with language at times before I changed my diet. If gluten is the culprit you should feel better rather quickly.
what testing have you had done? a biopsy will not always show celiac damage as it is spotty and can only get about 6 ft into the small intestine--which is about 222 feet long. our family has been part of a celiac study through the university ofr california, irvine. my husband and i and 8 of my 9 kids all carry one of the main celiac genes--but only 3 of my children have celiac disease---but at least we know to test for it if we get symptoms.
you need to be eating gluten and the best tests to have done are a totql IgA serum and a Ttg IgA. however, children under 3 usually do not produce the Ttg antibodies, even if they have celiac.
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