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mkmom

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  1. Thank you all for the encouraging words. I know I really need to do a long term trial and be very strict. I had met a mother of a celiac daughter and she said after 2 1/2 years of a VERY strick NO gluten at all diet that her daughters learning disabilites went away. My problem is I feel so lousy myself I really don't have the energy to do it all. I went to my doctor yesterday with what he called "my list" (new doctor). I have the following family history and personal history:

    maternal grandfather: very thin (malabsorption?), had all teeth pulled at age 25 (peridontal disease?) and had 1/2 of stomach removed. Died of heart attack.

    mother: had all teeth removed around age 40, IBS dx, lactose intollerance, died of lung cancer (67) (smoker)

    older brother: type 2 diabetic

    younger brother: type 2 diabetic and schitzophrenic

    me: Rheumatoid Arthritis, panic attacks, VitD deficiency, (nail ridges) calcium deficient?, joint pain, brain fog, unable to nurse 3 children, hypothyroidism, bone pain, overweight, fatigue, insomnia

    So I went to see if my doctor would order genetic testing for me as I already had a neg antibody test a in '07.

    He ordered a new antibody test and said for me to eat gluten for 1 week. I asked him if that was enough time (I haven't been gluten free but don't eat alot) that I had read 4-6 weeks at least. He said if you ate one bite your body would immediately have antibodies if you were celiac. Oh well....I guess I still have another 10 years of fighting before I can get a dx. LOL. Not funny really.

    I am thinking of doing an Enterolab gluten sensitivity test. I have had allergy testing and I am not allergic to gluten but am allergic to eggs, dairy, sugar, and sesame seeds (I like chinese food).

    Again, thanks for your help. I have some real work ahead of me getting my health back and my son and perhaps my other children too.

    MKmom


  2. Thank you for your comments. We have done alot of testing for the autism. He is high functioning but still has several "traits" of the condition.

    We did have him tested for the gluten and casein proteins and he did have a slightly elevated gluten protein but not with the casein. He is mostly gluten free but he does have the occaisional gluten item, especially when around others like this Sunday at a bbq he had a hot dog bun. He has what is called "melt downs" when he is disappointed (although his are more mild, mostly bad attitude and crying). If I had tried to force the gluten free diet at the bbq then he would have had a melt down, so I let him have the bun and cookies. Had I brought something gluten-free from home he would have been resistant to that as it is what he has all the time.

    I am just concerned that by allowing some gluten every so often I may be damaging him. I guess as he gets older I can explain more how the gluten could be hurting him. It is difficult to adhere to a strict diet like the gluten-free diet when you do not have a definitive diagnosis.

    Again, thanks for your info.


  3. Can anyone tell me what my sons results mean?

    He is 12, type 1 diabetic but doesn't complain about typical celiac symptoms. He is high functioning austic.

    The Prometheus Celiac Plus tests states:

    Serological markers for celiac disease not detected.

    HLA DQB1*02 detected. This represents half of the DQ2 heterodier associated with celiac disease.

    His total IgA was 178 mg/ml and ref range for his age is 41-395 (so that appears normal)

    They say the results do not exclude a diagnosis of celiac disease. (so I am in limbo. do I go gluten-free or not? we have been gluten-free off and on and sometimes when my son eats gluten he gets canker sores. Last time he had gluten for 3 days in a row and got a HUGE sore inside his mouth.)

    What would you do in my situation? It is difficult enough to be type 1 diabetic but throwing in the celiac disease on top is really hard for the guy. Yet, I do not want to compromise his future health by allowing him to eat gluten.

    Thank you for any help you can offer.

    Janet


  4. Hello. I am wondering if you all could help me with a few questions.

    1. I have Kaiser (CA) and am wondering what testing they do. I am going to write out a family history and try to get my new doctor to test me. I was tested for antibodies but it was negative. My son was tested and his antibody test was negative but the Prometheus Genetic test was interpreted to me as " He has 1/2 of a celiac gene so we cannot rule that he has celiac or does not have it. (he is on autistic spectrum and gets canker sores in his mouth. Those are his only "symptoms" as far as I can tell, OH except he got type 1 diabetes two years ago! I lost my copy of his test so do not know the actual results).

    Since my son possibly has celiac he must have gotten it from either me or his father and considering my health and my family history it is probably me.

    2. If Kaiser will not order testing for me and I want to order it and pay for it myself, what lab do you recommend? I read that Entrolabs also tests for gluten sensitivity.

    Thanks for your responses.


  5. I am guessing it is the gene called DQ7. Genes have an alpha and a beta part. The DQ7 shares one of these parts (can't remember which) with the DQ2, which is the gene commonly associated with celiac. The DQ7 was found in something like 2% of European celiacs in one study (with DQ2 and DQ8 being absent.) I have the DQ7 (no 2 or 8) and I have been diagnosed with the disease.

    Some people here feel that the genes don't really help you very much in diagnosing the disease, because the relationship between the genes and the illness is not completely understood and there are other factors that come into play.

    Your best bet is to try eliminating gluten to see what that does. If it helps, then you have an answer.

    Good luck!

    Lisa: Thank you for the quick reply. I am going to request another copy of his test from the doctor. I have read, and believe it would help me, that actually knowing that you have the disease (in this case the gene) helps people stay on the diet. I read the latest issue of Living Without with Elizabeth Hasselbeck where she says this was the case with her. I did go gluten free for 3 months (Jan, Feb & Mar) and didn't have all the bloating that I have now. I don't seem to get stomach aches, just bloating, gas and bowel issues (constipation has troubled me since I was a kid).

    I think I'll just go gluten-free and see how I feel (going to keep a food journal). I have been tested for food allergies and am "allergic" (immune reaction ) to eggs, dairy, sugars and sesame. I had eliminated all of those while on my diet in January and felt better.

    Thanks for your help.

    MKmom


  6. Hi everyone. I am new here but not so new to the celiac issue. My 11 yr old son was dx'd with PDD-NOS (autisum spec) in 04. Through detox and treatment for that we had genetic testing done (in 06). I've lost the test results but it was done by Prometheus and said he had one half of the celiac gene and they could not rule it out or in.

    I've read on this site that you can have one gene and still have celiac. Do you think when they said one half gene that they meant one of the two that definately causes celiac??

    I am beginning to think that all MY troubles are celiac and am going to pursue a dx for me. That is why all this is coming up again.

    I have RA, hypo thyroidism, and have had bowel issues for years. My mother did too. She was lactose intollerant and I probably am to a lesser degree.

    Any info you can give me would help. My son was dx'd with Type 1 Diabetes in Jan 08. I have him mostly gluten free, fearful that he will develope celiac. He doesn't seem to have many symptoms but I did notice he had mouth sores (inside, canker?) after eating Carl's Jr. crisscut fries two days in a row.

    Thanks for your help.

    MKmom


  7. Hi. My family was tested for the celiac antibodies which all came back negative. Having learned about false negatives I had my younger son who is 8 gene tested as he is on the autistic spectrum.

    His gene test came back and the dr. said that although the gene test was negative for celiac there was an abnormality which could indicate that he still had the disease.

    Has anyone heard of this abnormality? I have to request a copy of the test which will take a couple of weeks. I will have more infomation then.

    I also have an older son, 16, who has had "sores" on both forearms. I always thought it was some kind of acne but now I realize it may be dermatitis herpaformis (?). We have an appt with a dermatologist on 11/7.

    Thanks for any information you can give me.

    MK's mom