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Who Else Has It?
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Hi, my name is Elyse and I have 11 year old triplets. 2 boys and 1 girl. One of my sons, Joe, always had trouble focusing, was very picky with his eating habits, and always had stomach issues. Before this past Thanksgiving, I had noticed that the stomach problems were getting worse, and when he had to go, he had to go right then and there or else... We went to see the pediatrician who suggested that before we went through invasive testing, just keep his gluten intake to the bare minimum. I did this, and almost immediately he was more focused, he became involved in conversations with everyone, and he had no more "accidents". This was fine for about 3-4 months, and now it seems that he is having the problems again. Do I see my regular pediatrician, gastroenterologist, allergist? I'm not sure, and my pediatrician is really no help. Can someone point me in the right direction. Just to let you know, my other two kids do not seem to have this problem and my husband and I do not have this problem, so we can't figure out where it developed from. I was told that it was hereditary. Thanks so much for your input.

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Celiac disease is hereditary and you may carry the gene but not have the disease, unless it is triggered. If you have only been keeping his gluten to a minimum, you may try cutting out gluten altogether. This is the only way to control gluten intolerance. One way to tell if the problem is really Celiac, is to have the genetic testing, which costs about $160 from enterolab without a doctors order. If he truly has Celiac disease the only way to prevent future problems is to maintain a totally gluten free diet for life. If he has been on restricted gluten for some time he may or may not register on a Celiac panel (blood testing). But at least the gene test would tell you if the disease is in the family. Many people carry the gene. At least 1 in 150-200 people in the U.S. Try reading up on Celiac disease on Celiac.com and then turn to enterolab.com. Dr. Fine, who runs this web site, is a Celiac and has developed testing which is cheaper than most of the lab tests in the U.S. Good luck with your hunt for health. Shirley

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Elyse,

I have 3 kids also and they all have celiac. My husband was first diagnosed with it then as I read on it I saw that the kids were having symptoms. They are all colleg kids and having a hard time dealing with the diet. I found out I have it too. SO I think the whole world has it and just hasn't been dianosed.

I say you need to cut out all gluten Karne

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I also believe all of my three children have Celiac, but try to convince them. At least the oldest one is really unconvinced and I think she has had it since infancy. Please read all that you can about this disease and take appropriate moves to keep a gluten free diet, eventually your child will grow into a healthier adult. Shirley

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    • Might have Celiac.. so many symptoms and pain!
      I agree with the previous posts. Get some reliable info. Also, have you had your thyroid checked? Might be something to think about. Just don't panic, breathe... Keep your blood sugar where it needs to be. Good luck figuring it all out!          
    • Might have Celiac.. so many symptoms and pain!
      It is too bad the doctor didn't advise you to take the blood tests before going gluten free.  There is a chance they could still be positive.....  But a good chance that being gluten-free for weeks will make them negative.   I Have not seen any medical evidence that Celiac disease is caused  by any other disease. It is a genetic auto immune disease.     Perhaps you should read some info from reliable source s like the Univ of Chicago Celiac Center?   http://www.cureceliacdisease.org/faq/how-much-gluten-should-be-consumed-prior-to-being-screened-for-celiac-disease/
    • Might have Celiac.. so many symptoms and pain!
      I have a requisition for blood tests, but there is no way that I am going back on gluten. The cramps and pain is horrendous. I've only been off for a couple weeks, and I'm also doing the IgG tests, not really sure what those will show.  I have suffered with hypoglycemia in the past, and when I wasn't overweight and always dieting, I guess celiac maybe didn't rear it's ugly head... until after I went through something difficult in my life and started eating more carbs and then gained weight. I was never officially diagnosed with diabetes, but have been in the "pre-diabetes' range for a while. And I read that Celiac is either caused by PCOS or PCOS causes Celiac... not sure...  
    • Might have Celiac.. so many symptoms and pain!
      Welcome Jane! If you seriously suspect celiac disease, you should get tested (blood test), but that means you must be eating gluten.  Even being gluten-free for as little as a few weeks can impact your tests results.  Here's more information: http://www.cureceliacdisease.org/screening/ In the meantime, it sounds like your blood sugar is wonky.  How often do you check your blood sugar?  Do you have a meter?   This is a good site that you might find helpful with your diabetes: http://www.phlaunt.com/diabetes/ I hope you feel better soon! 
    • Might have Celiac.. so many symptoms and pain!
      Hello. This is my first post. I am at my wits end at this point. I've been experiencing some pretty crazy symptoms and although I don't have a diagnosis yet, I suspect I may have Celiac. A few months ago I threw up after eating some pasta, I felt like I was going to pass out actually and it felt like I was going to die! I thought it was food poisoning..  Then I had some VERY BAD fatigue... I was driving once and I literally wanted to get out of the car and lie down on the pavement! It happened again about 3 weeks ago, I was in the store and fatigue hit me like a ton of bricks.. I had to leave!  I have been trying to lose weight so I stopped eating all wheat, bread, etc.... well what happened truly scared me. I take Metformin for PCOS/pre-diabetes by the way. Anyway, I woke up had something to eat and an hour later felt like I was going to collapse. My heart was beating so fast, thought I was having a heart attack! I went to the doctor and I nearly passed out again in the office, they gave me some sugar to bring up my blood sugar and then I felt okay. My neck feels swollen, and like there is something in my throat...  So I've been off gluten/wheat/bread/pasta..etc. for about 2 weeks. At first I felt kind of okay, hmmm... but now I am entering week 3 and I feel like I'm dying! The hunger is still bad... although not as horrendous as before stopping gluten... but the hunger just doesn't want to calm down. I eat and less than an hour later I'm hungry again.  Can someone provide some advice, thoughts, anything at this point that can help me figure out what to do next... I'm losing my mind and I feel so depressed    
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