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Help My Son My Be Celiac


mom2matt

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mom2matt Newbie

Hello All,

My Son under went an EDG or is EGD. The reason was for ab pain. Well they found 4 ulcers on his Stomach, then she told me his small Intestine was diffrent, then she told me to take him to lab to have a full celiac panel done. I'm worried. My son is a Type 1 Diabetic, and asthma. He is a very crankey boy, my opinion. What are the Panel of test she ordered, and what did the small intestine biopsy come back "Diffrent" I'm lost I don't know anything about Celiac and no one in my family has it... ANY INFO would be great...

Thanks

Kathy Ellis

Fort Worth Tx

Insulin is not a cure!


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confused Community Regular

It probably means his villi were either flat or has some flattening to them. I would ask them if that is what she meant. If he has flattening of his villi, then he really wont need the celiac panel cause the egd is the golden standard of of diagnosis of celiac.

You have came to the right place for questions. Feel free to ask anyone anything.

paula

gfpaperdoll Rookie

Kathy, there is a great Dallas support group. PM me if you do not find the link on google... Well your son's asthma should go away on the gluten free diet. I am not up on diabetes but it is connected to the gluten problem & I think when a diabetic is on the gluten free diet that it makes it easier to control - but I am sure you can talk to some of the people that have both - it is fairly common. The doctors are now diagnosing people that have asthma & diabetes with celiac because they recognize them as symptoms & are running the tests. There is a diabetic speicalist doctor in Austin, Texas that is trying to get all doctors to test ALL their diebetic patients for celiac - sounds like she might be making some progress!!!!!

Celiac may have a steep learning curve in the beginning but your child will be soooooooo much healthier. There is also something called ROCK groups (Raising Our Celiac Kids).

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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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