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Does My Daughter Have It Now?


ILOVEOMC

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ILOVEOMC Enthusiast
:D My son was diagnosed in March and his younger sister is complaining of things which make me think she is developing it. She had the blood panel done in May and nothing showed positive. She complains of her tummy hurting, feeling like she is gonna throw up, burping and saying it came up in her mouth, and head hurting occasionally. Do you think she has it too?

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KaitiUSA Enthusiast

Sounds like a possibility. How old is she? Is she over 2? Because if she is under 2 then testing can be inaccurate. She may be starting to develop a problem...I would definitely monitor it closely especially knowing there are other celiacs in the family. Do you know what testing she had done? Some tests are more specific then others.

ILOVEOMC Enthusiast

She just turned 6 and she had the complete panel like my son did. If she is feeling the pain then I think there must be damage and a scope would detect that. I made an appointment with the GI but they can't see her until end of Sept.

KaitiUSA Enthusiast

Definitely don't want to see her suffer through those symptoms. She is obviously having a problem with something.

Ever considered getting an Enterolab done for her? They test for the gene, gluten sensitivity,malabsorption, and I think other things as well.

Have her symptoms started since being tested?

ILOVEOMC Enthusiast

What is an Enterolab? Her symptoms have gotten more specific and pronounced since the testing. Before the testing when she would complian of these things I thought it was just becase her brother was getting diagnosed and there was a lot ot talk in the house of tummy aches and such. He is doing better and she is still complaining.

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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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