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Am I Just Being Paranoid?


goldyjlox

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goldyjlox Contributor

I just got my DX and my doctor told me that one if not both my children will be positive with Celiac....and I have read the book Children with Celiac and now Isee symptoms in both my children but they could also be alot of other things so I was hoping that if I mention them and they sound familiar that someone could give me so advice.

My daughter is 3 1/2 years and she is more so the one I worry about. She is skinny as skinny gets, hardly eats anything, she never gains weight, she has always had a hard time with her bowels (she used to hold in her poo until it got so hard that it came out dry, large and it hurt her to pass it) She since has stopped this but she still has weird bowel habits. She is super whinny lately, throws tempers and for some reason she has been peeing in her pants. Now this could all be related or none of it can. But Isont know why she is like this. I Am going to talk to my doctor about it next week.

My son is 11 1/2 months and has had rashes in his diapers for about 6 weeks now and its starting to become a pain. I took him off wheat, dairy and he was using a medication and the rashes healed up. Then I started giving him oatmeal and I noticed the rashes again. I am now introducing milk as of today and I will see if that causes any more rashes. At first the rashes looked like Eczema and they were all on his buttocks and up his back a bit. Now they are small read dots and look like Hives.

Could my children have Celiac?? I am trying to change their diets to gluten free also, my daughter eats alot of crackers and cookies...alot of gluten. My son not too much as he is still so young. Today I gave him some cheerios so I will see if those react any way.

thanks.


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gfpaperdoll Rookie

Yes, it sounds as if your children should be gluten free & dairy free. the best thing for children is not to feed them these items & then if their symptoms change - there is your answer. but they must be 100% gluten & dairy free, it takes a bit to get it out of your system. I am sure you are in a bit of shock & denial it is very common... Have you read any of the books on celiac - gluten intolerance?

You can check at your library or order them on line...

wishing you the best...

ptkds Community Regular

If you plan on testing them, you need to keep them on gluten until the tests are done. But if you are just wanting to try the diet, then take them off of all gluten.

My dd had a diaper rash that I couldn't get rid of, and that is one of the things that led us to Celiac disease. I tried antifungals, Rx's, and different diaper rash meds, and nothing worked.

Also, some celiacs crave gluten before going gluten-free. So if your dd is always wanting bread/ gluten-filled things, it could be a symptom. My older dd who has celiac would often want ONLY bread w/ butter for meals. I coudn't get her to eat anything else. But now that she is gluten-free, she doesn't crave it as much.

ptkds

JennyC Enthusiast

I would get your oldest blood tested right away before you take her off of gluten, and if you want to biopsy her then she will have to continue to eat gluten untill the procedure is complete. My son was a gluten junkie before he was diagnosed. He lived on crackers, cereal and pasta. Before diagnosis he would only eat the pasta or bread at dinner, and now he only really eats the meat. B) Your youngest is too young for accurate testing. I believe that children should be atleast 24 months old before blood tested. That is a very long time, so you may want to consider trying the diet with him as well. You could also get genetic tests done. That would tell you if he has a predisposition to develop celiac disease. I know this is a lot to deal with, but you will get through it. It gets so much easier as time goes on. :)

lovegrov Collaborator

Have your oldest one tested. The youngest is too young for testing and the rash doesn't particularly sound like DH or celiac related.

Anybody who has been diagnosed with celiac should urge every first-degree relative to be tested.

richard

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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