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Nic

Could This Be Celiac?

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Hi, as a lot of you may know, I am on this desperate search to find a solution to my son's (non celiac) medical problems. Here is a list of his symptoms: hypotonia, developmental delays, constipation, insomnia, weight gain, leg pains, heart burn (I am assuming, he says his heart hurts). I did have his genes tested through enterolab but they said he was negative for the gene but that he does have 2 intolerance genes, I don't remember which off the top of my head, I believe DQ1 and 3. He spent a day in the ER this past week because he had not urinated in 24 hours. After running many tests I was told that he is so badly constipated that it is pressing on his bladder and causing the urination trouble. This prompted me to google constipation, insomnia, and weight gain and food allergies came up with gluten being named as a possibility. So I went farther and googled Celiac and those 3 symptoms and I found countless articles naming all of his symptoms as Celiac symptoms. His brother and grandfather as well as countless aunts and cousins are Celiac. I have been staying away from the concept since I got a negative from Enterolab. I made a gastro appointment for next month and I am going to request he be retested through Prometheus. Any thoughts on this? Has anyone experienced weight gain or insomnia from gluten?

Nicole

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Celiac.com Sponsor (A8):

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There are definitely members on this board with those symptoms. There are also members w/o genes that the US recognizes as celiac genes, but they do have celiac. Genetic research is very preliminary. It is still definitely possible for your son to have celiac. Hvaing him retested may not be the answer- they tests were likely right. Also prometheus is a much more expensive test and I'm currently fighting with insurance over it :-/

Just remember, the best test is the diet! :P Good luck and I hope your son gets better.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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I just have one thought - please forget about any testing and take your son gluten free immediately. You do not need any tests to know what is wrong with him - if you want to save his life - change his diet.

My grand daughter also got a negative thru Enterolab when she was 7, she is 9 now- she is double DQ1 & her parents thought oh, JUST gluten intolerant, grand-mother (me) is just a radical nut case.. Well the kid had walking pneumonia twice last year, this year she got "chunky" & lost ALL the enamel on ALL her teeth. Enamel does not grow back. Enamel loss on teeth is caused by one thing - & that is gluten intolerance/celiac.

Please I am begging you to think about this, you have a strong family history, you child is suffering, he could get a complicataion & it would not be good. I have a long post on here soemwhere about all the complications of my double DQ1 friends & family - not good - GUTEN INTOLERANCE is very serious, although not recognized by the medical commnuity. It damages you neurologically & will damage your organs & nearly kill you BEFORE or IF EVER any damage will show up to the intestines, or show up as a postive on testing. Please also read Ravonwoodglass's posts on here about the same thing - she lived but suffered for many years because she alwasy got a negative test & no one ever told her to just try the diet.

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I just have one thought - please forget about any testing and take your son gluten free immediately. You do not need any tests to know what is wrong with him - if you want to save his life - change his diet.

My grand daughter also got a negative thru Enterolab when she was 7, she is 9 now- she is double DQ1 & her parents thought oh, JUST gluten intolerant, grand-mother (me) is just a radical nut case.. Well the kid had walking pneumonia twice last year, this year she got "chunky" & lost ALL the enamel on ALL her teeth. Enamel does not grow back. Enamel loss on teeth is caused by one thing - & that is gluten intolerance/celiac.

Please I am begging you to think about this, you have a strong family history, you child is suffering, he could get a complicataion & it would not be good. I have a long post on here soemwhere about all the complications of my double DQ1 friends & family - not good - GUTEN INTOLERANCE is very serious, although not recognized by the medical commnuity. It damages you neurologically & will damage your organs & nearly kill you BEFORE or IF EVER any damage will show up to the intestines, or show up as a postive on testing. Please also read Ravonwoodglass's posts on here about the same thing - she lived but suffered for many years because she alwasy got a negative test & no one ever told her to just try the diet.

Hi, I know you are probably right. I just feel so nervous about taking him off gluten. He has a lot of problems with food already as his hypotonia has affected his mouth and he has trouble chewing or tolerating things with different textures or tastes. I know what I have to do, I was hoping a doctor would tell me the same.

Nicole

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Hi, I know you are probably right. I just feel so nervous about taking him off gluten. He has a lot of problems with food already as his hypotonia has affected his mouth and he has trouble chewing or tolerating things with different textures or tastes. I know what I have to do, I was hoping a doctor would tell me the same.

Nicole

Please, I can not urge you strongly enough to get your child on the diet. He may not have one of the two recognized celiac genes but he does have one that has serious neurological impact.

My neuro impact started at about age 4. It progressed slowly from there until by the time I would be diagnosed 40 years later I had almost lost bowel and bladder control, could barely walk, taliking to me was real interesting because I couldn't remember the names of anything, I could go on but the important thing for me to get to is this. By the time I had been gluten free two years I had regained reflexes in my legs, My gait is now normal, my bowel and bladder issues have resolved, I no longer fear choking to death (something that was a constant toward the end). Six months after I started the diet I ran up my stairs for the first time in over 10 years.

I can not completely assure you that being gluten free will resolve every issue your son has, but it certainly won't hurt.

As an aside, something that you may want to try with him is buckwheat cereal, the 'cream of wheat' style. It is a good source of protein and would be easy to swallow. It is quite similar in taste and texture to cream of wheat and you could add tolerated jellys or maple syrup etc to make it even moe appealing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Please, I can not urge you strongly enough to get your child on the diet. He may not have one of the two recognized celiac genes but he does have one that has serious neurological impact.

My neuro impact started at about age 4. It progressed slowly from there until by the time I would be diagnosed 40 years later I had almost lost bowel and bladder control, could barely walk, taliking to me was real interesting because I couldn't remember the names of anything, I could go on but the important thing for me to get to is this. By the time I had been gluten free two years I had regained reflexes in my legs, My gait is now normal, my bowel and bladder issues have resolved, I no longer fear choking to death (something that was a constant toward the end). Six months after I started the diet I ran up my stairs for the first time in over 10 years.

I can not completely assure you that being gluten free will resolve every issue your son has, but it certainly won't hurt.

As an aside, something that you may want to try with him is buckwheat cereal, the 'cream of wheat' style. It is a good source of protein and would be easy to swallow. It is quite similar in taste and texture to cream of wheat and you could add tolerated jellys or maple syrup etc to make it even moe appealing.

Hi, without invading your privacy, I want to question the bladder trouble. My son only urinates 2-3 times daily and never seems to feel the need to go until he is about to burst. For example, he will maybe urinate before going in the tub at 6:30 pm and then drink about 8-10 oz of water before going to bed at 8:00, and then not urinate again until about 10:00 am the next morning. From there he pretty much doesn't go again until anywhere from after school to bath time again. They tested his kidneys and they seem to be functioning normally but it seems as though his body doesn't feel like it has to go. Could this be due to a neurological thing?

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Hi, without invading your privacy, I want to question the bladder trouble. My son only urinates 2-3 times daily and never seems to feel the need to go until he is about to burst. For example, he will maybe urinate before going in the tub at 6:30 pm and then drink about 8-10 oz of water before going to bed at 8:00, and then not urinate again until about 10:00 am the next morning. From there he pretty much doesn't go again until anywhere from after school to bath time again. They tested his kidneys and they seem to be functioning normally but it seems as though his body doesn't feel like it has to go. Could this be due to a neurological thing?

It could be. He may not be getting signals properly from the nerves and that could also lead to problems with holding it when he does get the urge. Is he able to make it to the potty in time to prevent an accident? Bear in mind also though that some kids just don't want to take the time to pee. They don't have much control over thier lives and this for some is something they can control. At least till tthings get 'overfilled'. If he has a bit of an 'aspie' tendency he also may not want to us a school bathroom. If he is getting plenty of liquids and the kidneys and all have checked out okay I would try not to be too concerned.

I really hope your little guy isn't getting the same leg pains I used to. They were probably one of the most excrutiating things I ever endured. I was having them while the worst of the nerve destruction was taking place. Nothing seemed to help at all.

With your family history and the symptoms he is having I do hope you will ignore those doctors for the time being and just try him on the diet. If there is anything I can help with please do not hesitate to PM me. I am usually at the computer a couple of times a day.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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It could be. He may not be getting signals properly from the nerves and that could also lead to problems with holding it when he does get the urge. Is he able to make it to the potty in time to prevent an accident? Bear in mind also though that some kids just don't want to take the time to pee. They don't have much control over thier lives and this for some is something they can control. At least till tthings get 'overfilled'. If he has a bit of an 'aspie' tendency he also may not want to us a school bathroom. If he is getting plenty of liquids and the kidneys and all have checked out okay I would try not to be too concerned.

I really hope your little guy isn't getting the same leg pains I used to. They were probably one of the most excrutiating things I ever endured. I was having them while the worst of the nerve destruction was taking place. Nothing seemed to help at all.

With your family history and the symptoms he is having I do hope you will ignore those doctors for the time being and just try him on the diet. If there is anything I can help with please do not hesitate to PM me. I am usually at the computer a couple of times a day.

Thank you so much for the help. He doesn't like to use the bathroom in school but at home he doesn't seem to mind. When we are hitting the 12 hour mark we usually insist he try to go as well as before leaving the house. I goes in and tries willingly but says nothing comes out because he doesn't have to go. That seems odd considering he drinks normally. And no, he doesn't have accidents, he always makes it on time. This kid is turing my hair gray.

Nicole

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Thank you so much for the help. He doesn't like to use the bathroom in school but at home he doesn't seem to mind. When we are hitting the 12 hour mark we usually insist he try to go as well as before leaving the house. I goes in and tries willingly but says nothing comes out because he doesn't have to go. That seems odd considering he drinks normally. And no, he doesn't have accidents, he always makes it on time. This kid is turing my hair gray.

Nicole

Try having him turn on the water faucet. Also if he can read stick a check list by the door, you know hat, gloves, coat, books, go to restroom. Perhaps if it is more of a habit or responsibility it won't be as much of an issue. I wouldn't even ask him if he has gone, he may find that embarrassing. Most of all try not to worry about it. He has other more pressing issues going on right now.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Try having him turn on the water faucet. Also if he can read stick a check list by the door, you know hat, gloves, coat, books, go to restroom. Perhaps if it is more of a habit or responsibility it won't be as much of an issue. I wouldn't even ask him if he has gone, he may find that embarrassing. Most of all try not to worry about it. He has other more pressing issues going on right now.

Hi, one more question. Since Lucas has hypotonia his mouth is very very weak. He used to gag on everything unless it was so smooth it went down without chewing. He also was speech delayed as a result. He was in early intervention for physical therapy and then went on the a handicapped pre k in our town where he received speech, feeding therapy, phsyical and occupational therapy. Once he entered kindergarten this year they dropped his services and since then I have seen a steady decline in the clearness of his speech. I am currently fighting the school to give him speech again and they are saying his problems are clinical and not educational. I also set up an appointment with an outside therapist. Basically, he sounds like he is talking with marbles in his mouth. He seems to be not moving his tongue or something. My mother feels like it is his mouth he is barely moving. Last year of course I noticed some trouble due to his tongue thrust but this has dramatically worsened. Could it be related to a neurological problem?

Nicole

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Hi, one more question. Since Lucas has hypotonia his mouth is very very weak. He used to gag on everything unless it was so smooth it went down without chewing. He also was speech delayed as a result. He was in early intervention for physical therapy and then went on the a handicapped pre k in our town where he received speech, feeding therapy, phsyical and occupational therapy. Once he entered kindergarten this year they dropped his services and since then I have seen a steady decline in the clearness of his speech. I am currently fighting the school to give him speech again and they are saying his problems are clinical and not educational. I also set up an appointment with an outside therapist. Basically, he sounds like he is talking with marbles in his mouth. He seems to be not moving his tongue or something. My mother feels like it is his mouth he is barely moving. Last year of course I noticed some trouble due to his tongue thrust but this has dramatically worsened. Could it be related to a neurological problem?

Nicole

Yes it certainly could be neurologically related. Meanwhile you need to get that school on the ball. I realize things are tough in the school systems right now but they are really dropping the ball with your young one. My DD had speech problems as a young child, resolved mainly by the years of speech therapy she had at school. She lost her speech at about 2 due partially to a (oddly enough) celiac related excess of fluid in her ears. The doctor said it was like she was listening to everything from the bottom of a swimming pool. That certainly was not an 'educational' problem.

Have you contacted any organizations like ARC? They may be able to assist with speech therapy. Although your guy is too young for their services VESID may also be able to guide you to a good place for help.

Meanwhile were you present for any speech therapy sessions? If needed you could continue with speech therapy with him yourself for a bit. Vocal games, songs (many folks with problems talking can actually sing much more clearly for some reason, naming games. Anything you can make fun, don't turn stuff into a task or he may resist.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi, I just wanted to say that my son sounds similar. He had a variety of neurological symptoms and the doctors didn't know what it was. I found out quite by accident that it was gluten. He also had negative Enterolab results. But some people simply don't make much IgA, so they would have a false negative. I also wonder if the IgA non-secretors are the ones who have the neurological signs more than the purely digestive ones. But in any case, you may be thrilled and amazed at the improvement in symptoms by going gluten free. I was! His excess weight dropped right off. He sleeps like a baby all night. His memory came back. His handwriting, which was hideous, improved dramatically. His coordination had been so poor that he had a diagnosis of dyspraxia, but that is all but gone now. His rashes went away. He started trying different foods, where before the only thing he would eat was mac and cheese, chicken nuggets, and pizza. His hyper-sensitivity to things diminished. (By the way, they told me to get him a vibrating electric toothbrush to desensitize his mouth so the different textures wouldn't bother him so much, and it did help.) I just tell you all this to encourage you to try the diet. You may be surprised!

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Hi, I just wanted to say that my son sounds similar. He had a variety of neurological symptoms and the doctors didn't know what it was. I found out quite by accident that it was gluten. He also had negative Enterolab results. But some people simply don't make much IgA, so they would have a false negative. I also wonder if the IgA non-secretors are the ones who have the neurological signs more than the purely digestive ones. But in any case, you may be thrilled and amazed at the improvement in symptoms by going gluten free. I was! His excess weight dropped right off. He sleeps like a baby all night. His memory came back. His handwriting, which was hideous, improved dramatically. His coordination had been so poor that he had a diagnosis of dyspraxia, but that is all but gone now. His rashes went away. He started trying different foods, where before the only thing he would eat was mac and cheese, chicken nuggets, and pizza. His hyper-sensitivity to things diminished. (By the way, they told me to get him a vibrating electric toothbrush to desensitize his mouth so the different textures wouldn't bother him so much, and it did help.) I just tell you all this to encourage you to try the diet. You may be surprised!

Hi, was your son unable to stay asleep at night? I am trying to think back to when this started. I know as a new born he got up the appropriate times per night, just for feedings and back to sleep. Then somewhere before his first birthday (I don't know when now, maybe when I started cereal) he started waking anywhere from 5-8 times per night. Eventually it led to him going to sleep fine and then waking by 2:00 am and that was it for the night. When he was 4 he was put on Zyrtec for allergies (seasonal) and miracuously enough he began sleeping through the night. I didn't even realize it was the zyrtec until I forgot a few times to give it to him and he was up again at 2:00 am. OUr current pediatrician (who I will be changing in April) said just let him have it, it is harmless. No one ever got to the bottom of it. How soon after going gluten free did it stop, I am getting excited at the idea :P .

Nicole

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Hi, I just wanted to say that my son sounds similar. He had a variety of neurological symptoms and the doctors didn't know what it was. I found out quite by accident that it was gluten. He also had negative Enterolab results. But some people simply don't make much IgA, so they would have a false negative. I also wonder if the IgA non-secretors are the ones who have the neurological signs more than the purely digestive ones. But in any case, you may be thrilled and amazed at the improvement in symptoms by going gluten free. I was! His excess weight dropped right off. He sleeps like a baby all night. His memory came back. His handwriting, which was hideous, improved dramatically. His coordination had been so poor that he had a diagnosis of dyspraxia, but that is all but gone now. His rashes went away. He started trying different foods, where before the only thing he would eat was mac and cheese, chicken nuggets, and pizza. His hyper-sensitivity to things diminished. (By the way, they told me to get him a vibrating electric toothbrush to desensitize his mouth so the different textures wouldn't bother him so much, and it did help.) I just tell you all this to encourage you to try the diet. You may be surprised!

Hi, was your son unable to stay asleep at night? I am trying to think back to when this started. I know as a new born he got up the appropriate times per night, just for feedings and back to sleep. Then somewhere before his first birthday (I don't know when now, maybe when I started cereal) he started waking anywhere from 5-8 times per night. Eventually it led to him going to sleep fine and then waking by 2:00 am and that was it for the night. When he was 4 he was put on Zyrtec for allergies (seasonal) and miracuously enough he began sleeping through the night. I didn't even realize it was the zyrtec until I forgot a few times to give it to him and he was up again at 2:00 am. OUr current pediatrician (who I will be changing in April) said just let him have it, it is harmless. No one ever got to the bottom of it. How soon after going gluten free did it stop, I am getting excited at the idea :P .

Nicole

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Yes, he had a lot of trouble sleeping. Either he couldn't get to sleep and would keep coming out of his room, or he would go to sleep and then wake frequently during the night. I bought some Melatonin and would give him a half of a pill and that seemed to help. But I would say within a few days of going gluten free he started to fall right asleep and stay asleep. But when he's been glutened, he will be up that night. Yesterday he went to a friend's house and was glutened there, and slept badly last night. But he should be alright tonight.

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Hi, was your son unable to stay asleep at night?

Nicole

Boy does this little one of yours sound like he is a mix of my two :D My son never slept through the night. He was up for 2 hours then asleep for 2 hours for the first three years of his life. I thought I would never sleep again and when he was an infant I would bring him in to sleep with me, not safe I now know but I would have never slept otherwise. He was not diagnosed until he was 19 and he continued to have severe sleep problems all through childhood and the teen years. When glutened he now, like me, gets what we call a 'speed' effect. We will go almost without stoping for at least a couple days and then we crash. (We get a lot done but stay out of our way cause will bite your head off in an instant.) Gluten free this has gotten a lot better for him, although he would still prefer to be up all night and asleep all day if he has a job that fits.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Boy does this little one of yours sound like he is a mix of my two :D My son never slept through the night. He was up for 2 hours then asleep for 2 hours for the first three years of his life. I thought I would never sleep again and when he was an infant I would bring him in to sleep with me, not safe I now know but I would have never slept otherwise. He was not diagnosed until he was 19 and he continued to have severe sleep problems all through childhood and the teen years. When glutened he now, like me, gets what we call a 'speed' effect. We will go almost without stoping for at least a couple days and then we crash. (We get a lot done but stay out of our way cause will bite your head off in an instant.) Gluten free this has gotten a lot better for him, although he would still prefer to be up all night and asleep all day if he has a job that fits.

It is funny that I never really thought of his sleeplessness as a possible result of gluten. Everything else came to mind like hypothyroid and things like that but never this. I didn't realize how many symptoms can come from a food intolerance. Interestingly though, he went for a sleepover at my mom's on Saturaday and ate regular pasta for dinner. At home he does eat gluten for lunch and breakfast but dinner is always gluten free as it is easier for me to just cook one meal since my other son is celiac. Well Saturday night at my mom's he pulled one of his all nighters. He was complaining that his "heart hurts" and his leg hurt. This was the first time in a long time that he did this while on the zyrtec. I wonder if it was because he ate such a heavy amount of gluten so close to bed time. As hard has it will be with him to go gluten free I will be so relieved if this is really it. We have been searching for 5 and a half years (which I know is not long compared to so many).

Nicole

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It is funny that I never really thought of his sleeplessness as a possible result of gluten. Everything else came to mind like hypothyroid and things like that but never this. I didn't realize how many symptoms can come from a food intolerance. Interestingly though, he went for a sleepover at my mom's on Saturaday and ate regular pasta for dinner. At home he does eat gluten for lunch and breakfast but dinner is always gluten free as it is easier for me to just cook one meal since my other son is celiac. Well Saturday night at my mom's he pulled one of his all nighters. He was complaining that his "heart hurts" and his leg hurt. This was the first time in a long time that he did this while on the zyrtec. I wonder if it was because he ate such a heavy amount of gluten so close to bed time. As hard has it will be with him to go gluten free I will be so relieved if this is really it. We have been searching for 5 and a half years (which I know is not long compared to so many).

Nicole

Nicole I do so hope that you are going to get him onto the diet also. With one already eating gluten-free at least you have some idea what you are doing. With a brother that has celiac the chances that he does also are really high. No matter what conventional tests say. I don't know how common it is to have one family member show positive and another a false negative but I know it happens as it happend in my family. My family would still be suffering if I hadn't been diagnosed, I don't show up in blood tests and noone even thought to test my children for celiac in all those miserable years. Even though my son could have been a poster child. The rest of my family showed positive in blood work. All of them.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi,

Just wondering if you would please let me know just how the neurological problems can effect one. I did post a message a few days ago and did not get a return on the experiences of this concern, maybe I was doing something incorrect with posting as I am new here.

Can you have foot pain (in just one foot)? This would be daily pain and with four surgeries nothing is taking it away. Our son is putting the celiac testing off for the last, as he does think or wish this to be his problem. Please let me know if this sounds as if this could be his problem. He does have a number of the other symptoms that go along with the disease.

Thank you all so much for your help,

Susie

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Hi,

Just wondering if you would please let me know just how the neurological problems can effect one. I did post a message a few days ago and did not get a return on the experiences of this concern, maybe I was doing something incorrect with posting as I am new here.

Can you have foot pain (in just one foot)? This would be daily pain and with four surgeries nothing is taking it away. Our son is putting the celiac testing off for the last, as he does think or wish this to be his problem. Please let me know if this sounds as if this could be his problem. He does have a number of the other symptoms that go along with the disease.

Thank you all so much for your help,

Susie

If he has a number of other indications of the disease then it could be associated. He should at least be tested but as mentioned the best way to know if the diet is needed and will help is to do it. Testing does miss a lot of us.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi, as a lot of you may know, I am on this desperate search to find a solution to my son's (non celiac) medical problems. Here is a list of his symptoms: hypotonia, developmental delays, constipation, insomnia, weight gain, leg pains, heart burn (I am assuming, he says his heart hurts). I did have his genes tested through enterolab but they said he was negative for the gene but that he does have 2 intolerance genes, I don't remember which off the top of my head, I believe DQ1 and 3. He spent a day in the ER this past week because he had not urinated in 24 hours. After running many tests I was told that he is so badly constipated that it is pressing on his bladder and causing the urination trouble. This prompted me to google constipation, insomnia, and weight gain and food allergies came up with gluten being named as a possibility. So I went farther and googled Celiac and those 3 symptoms and I found countless articles naming all of his symptoms as Celiac symptoms. His brother and grandfather as well as countless aunts and cousins are Celiac. I have been staying away from the concept since I got a negative from Enterolab. I made a gastro appointment for next month and I am going to request he be retested through Prometheus. Any thoughts on this? Has anyone experienced weight gain or insomnia from gluten?

Nicole

Just want to add,- milk is a huge problem with constipation. I would also take your son off all dairy products, I have seen miraculous results with constipation in children with in a day after the removal of milk, obviously following the gluten free diet is going to help all problems

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It is so funny how this thing is coming together. Up until now I never paid any attention to when his "tummy" aches occured because I thought the genetic testing ruled Celiac out. But, yesterday he ate pasta for dinner and had a stomach ache. Today he ate toast for breakfast and another stomach ache. For lunch mac and cheese and another one again. I spoke with the gastro's nurse who we will be seeing the end of March and she said keep him on gluten until then. I feel I should just take him off of gluten and see how it goes rather than wait a month. Has anyone ever had trouble with school accomodating their child without an actual diagnosis?

Nicole

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It is so funny how this thing is coming together. Up until now I never paid any attention to when his "tummy" aches occured because I thought the genetic testing ruled Celiac out. But, yesterday he ate pasta for dinner and had a stomach ache. Today he ate toast for breakfast and another stomach ache. For lunch mac and cheese and another one again. I spoke with the gastro's nurse who we will be seeing the end of March and she said keep him on gluten until then. I feel I should just take him off of gluten and see how it goes rather than wait a month. Has anyone ever had trouble with school accomodating their child without an actual diagnosis?

Nicole

Nicole you may want to head over to the parents section of the board to ask about the school compliance issue. It may be possible that his ped may give the diagnosis based on dietary response if his improvement is good. The choice on whether to continue or do a trial on the diet is up to you. Will you do the diet anyway for a bit no matter what the GI determines? That may be a key part of the answer.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Yes, even if the doctor says he tests negative I would still try the diet. And I feel as though with him not having the "celiac gene" and in the past he has been negative for antibodies, he will most likely be negative. So is all this doctor business just delaying what I will have to do anyway? I will ask on the parent board about the school issue. That may help in the decision. Thanks for all your help.

Nicole

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