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HI, my oldest son has Celiac and carries the DQ 2 gene. I had my youngest son tested just for the gene through Enterolab and he has the DQ1 and DQ3 genes. They said not Celiac but gluten sensitivity genes. I have been reading a lot about the DQ1 gene and the slight possiblity of Celiac related to the gene. But all of the articles are connected to Dr. Fine. It isn't that I don't trust Dr. Fine but I wonder if other doctors have the same belief. Has anyone been diagnosed as a Celiac with this gene?

The reason I got my son tested was because he has had a life time of problems. He was gross motor developmentally delayed and has hypotonia (low muscle tone). As a result he has received physical therapy and speech therapy. His mouth muscles are very weak and therefore he as a terrible gag reflex and a tongue thrust which not only interferes with speech but is doing quite a job on his teeth. He also has sensory issues as he gags on things that are textured or too sweet. Up until he was about 4 he licked everything he could, the walls, the couch, the floor, thank God he outgrew that. He gets these terrible leg pains sometimes at night where he is screaming in pain and it takes quite a while to console him. He also has never had a normal bowel movement. He has always pooped pebbles since he was an infant and sometimes he says it is hard to go. He has no signs of malnutrition as he is above the 95% in both height and weight even though he does not eat much. I am sure Celiac is a long shot but I can't help but worry am I missing something with him. I spoke to my pediatrician about him and he said he didn't think it was possible. I don't know though. Any thoughts?

Nicole

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Im dq1 and dq3 and i tested positive threw blood and i have DH, so it does happen. Is your son by any chance subtype 7,6, that is what i am for dq1 and and dq3.

paula

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HI, my oldest son has Celiac and carries the DQ 2 gene. I had my youngest son tested just for the gene through Enterolab and he has the DQ1 and DQ3 genes. They said not Celiac but gluten sensitivity genes. I have been reading a lot about the DQ1 gene and the slight possiblity of Celiac related to the gene. But all of the articles are connected to Dr. Fine. It isn't that I don't trust Dr. Fine but I wonder if other doctors have the same belief. Has anyone been diagnosed as a Celiac with this gene?

The reason I got my son tested was because he has had a life time of problems. He was gross motor developmentally delayed and has hypotonia (low muscle tone). As a result he has received physical therapy and speech therapy. His mouth muscles are very weak and therefore he as a terrible gag reflex and a tongue thrust which not only interferes with speech but is doing quite a job on his teeth. He also has sensory issues as he gags on things that are textured or too sweet. Up until he was about 4 he licked everything he could, the walls, the couch, the floor, thank God he outgrew that. He gets these terrible leg pains sometimes at night where he is screaming in pain and it takes quite a while to console him. He also has never had a normal bowel movement. He has always pooped pebbles since he was an infant and sometimes he says it is hard to go. He has no signs of malnutrition as he is above the 95% in both height and weight even though he does not eat much. I am sure Celiac is a long shot but I can't help but worry am I missing something with him. I spoke to my pediatrician about him and he said he didn't think it was possible. I don't know though. Any thoughts?

Nicole

All I can say is that if I were you I would put him on the diet. IMHO the only difference between celiac and gluten intolerance is the systems impacted. It sounds like he is being effected both neurologically and physically. His history reads like my childhood, and those leg pains you refer to are excruciating. I would dream I was being cut in half almost every night for years. I am currently waiting on my gene tests and I will be very surprised if I am not DQ1 and perhaps a couple more. You have nothing to lose and everything to gain by ignoring those doctors and trying the diet. You may have a really different kid after a month or two and improve his life by 100%.

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Im dq1 and dq3 and i tested positive threw blood and i have DH, so it does happen. Is your son by any chance subtype 7,6, that is what i am for dq1 and and dq3.

paula

Hi, you are right, it is subtype 7,6. He was tested through blood about a year ago and it came back negative but we know how that can go. He currently does eat gluten but I would say he is about 50% gluten free as it is easier for me to cook gluten free for the whole family since my other son is Celiac. But he does still eat gluten for lunch everyday. Maybe since he is not gluten heavy he will continue to test negative. I think I need to try the diet.

Nicole

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I also had those leg pains as a child. They are no fun. You might find that your gluten intolerant son has a worse reaction from gluten than the celiac son. It is so sad how the testing misses these kids. Good for your son that you knew about gluten free because of the first diagnosis. I think that he will be 100% better on the diet.

& yes, although people say it is not celiac unless you have DQ2 or DQ8, I have a friend that is double DQ1 & was diagnosed by biobsy & then by Enterolab.com & she is 54 & has osteoporosis & HS. My sister is also Double DQ1 & was diagnosed by blood test & by Enterolab.

Oh, a lot of us gluten intolerant people are also dairy intolerant. I would also take him dairy free.

There are two other doctors (at least ) studying gluten intolerance none of which names I remember but you can google it, one of their names starts with an Hadi...

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There's a doctor with a long name beginning with H that studies neurological problems among the gluten intolerant. He has found that 80% have the usual "celiac genes," and 20% have DQ1. I thought I had this study bookmarked, but apparently not :o

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Here's a link to an article about gluten sensitivity as a neurological disease. It's by Dr. Hadjivassiliou - there's a lot more stuff by him. Google his name.

http://jnnp.bmj.com/cgi/content/extract/72/5/560

Nic, my 9 yo dd is a 7, 6 also. She had classic celiac symptoms, and was getting sicker by the week. We didn't have blood tests run because she was already gluten-free by the time we figured out what was going on. She started to improve almost immediately when we removed gluten from her diet, and when we removed casein as well, her symptoms disappeared. I did the Enterolab fecal and gene tests for her, just to "be sure." She was postive for gliadin and casein antibodies, AtTg, and had elevated fecal fat. Everything we'd seen IRL was supported by the Enterolab results, so we probably won't pursue any further testing at this time.

My ds had neuro symptoms - mainly, a pervasive brain fog that made focusing very difficult for him. I'd always thought that it was more of an educational/learning issue, and he went through O.T. and vision therapy to "treat" some of his problems. I also had some educational testing done, which showed that he was a very smart kid (which I knew) but that he had a very slow processing speed. On a hunch, a few weeks after dd went gluten-free, I put my ds on a gluten free trial. O.M.G. He felt awful for a couple of weeks (headache, fatigue) but when that passed, his head was clear! He told me that he was thinking more clearly and I could see evidence of it. My mom visited a couple of weeks later, and SHE commented on how much more focused, attentive, etc., he seemed to be. It was a VERY subtle thing, except to me, because I'm with him so much. I did the Enterolab testing for him, too, and he also had a positive anti-gliadin & AtTg. He turned out to be a 7, 7 on the gene test.

Two kids, very different symptoms, different genes, but both with overwhelmingly positive results to a gluten-free diet. If we'd pursued traditional testing, I wonder if we'd have come to this point. I guess I'll never know, and maybe I'll always wonder a bit, but not enough to put either of my kids back on gluten to try and find out. I think that there is SO MUCH that is yet to be discovered about gluten sensitivity and gene involvement, and the best that we can do right now is to listen to our guts (pardon the pun) and accept what we see with our own eyes, rather than blindly accepting what the medical establishment tells us. It's OUR health, or OUR KID'S health that is at stake....and ultimately, it's our decision about which path to take.

Okay, off the soapbox. Good luck to you. I think it's worth a try to put your ds on a gluten-free diet, and see what happens!

Rho

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hi there, have you had your son diagnosed with anything else? like sensory intergration disorder? he sounds similar to my son in some aspects. its just a thought. hypotonia is common in kids with it.

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hi there, have you had your son diagnosed with anything else? like sensory intergration disorder? he sounds similar to my son in some aspects. its just a thought. hypotonia is common in kids with it.

As an infant his hypotonia was so bad that he could not bare any weight on his legs at all. That is what first clued us in. He also couldn't suck well and had very little appetite. At 5 months he was drinking between 3-5 ounces per bottle with no interest in cereals or other baby food even though he was drinking 4 ounces when we left the hospital (he was 10 pounds, 8 ounces). We saw a neurologist and were put into an Early Intervention program where he received physical therapy. We saw an endocrinologist because his calcium was always high. She suspected Williams Syndrome. She sent us to a Genetisist who agreed that Williams was likely as he has the history and the physical features to go with it. She ran the appropriate blood work (a fish test I believe) which is looking for a specific genetic marker, it wasn't there. She then sent us to a cardiologist to see if he has the heart deffect of Williams and he did not. Also, his soft spot on the top of his head was wide open until he was 2, this was one of the Williams traits. So everyone just decided to blame it on the viral meningitis he had at 5 weeks old even though if you research viral meningitis all the research shows there are not long term damage. No one ever mentioned "sensory intergration disorder" even though I find it fitting and all the doctors agreed that as long as he continued to improve there was no reason to find the cause. He seems to be catching up in his delays. He is 5 now and was just exited out of the handicapped pre K program and will be mainstreamed in Kindergarten with no services. He still can't keep up physically with other kids his age. He trunk muscles are extremely weak and he can't sit up from a lying down position. His mouth muscles seem to be the worst for him. He still gags on food a lot. He is extremely bright, above average for his age and so are his fine motor skills. Socially/emotionally I would say immature and on testing came up equivalent to 3.5. So I believe maybe going gluten free can help us at least see if gluten is his problem all along. Sorry for the long post, it is very frustrating to have never found the cause and if it turns out to be gluten it will be so upsetting to know that we could have fixed everything sooner.

Nicole

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