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Who Else Has It?


Elyse

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Elyse Newbie

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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Guest aramgard

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

mom of 5 celiac Rookie

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

Guest aramgard

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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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