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What To Do Please Need Your Help!


Mama Melissa

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Mama Melissa Enthusiast

Hey everyone, i recently was diagnosed with celiac disease after a bout of stomach issues and severe constipation, i am a 27 year old mom of 2 children. Of course my first reaction when finding out this disease is herditary was to have my 2 children blood tested which both came out negative,my 3 yr old daughter has for months and months now and even before tested displayed symptoms of this disease constipation complaining her belly hurts her and very moody personality with irrability.I have however made the whole house gluten free but there are times she does have gluten when out with family or if husband orders food etc .My question is do you suggest i push her peditrician for biopsy???I feel so helpless when she is hurting and there is nothing i can:(Thank you for listening!


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Leah's Mom Rookie

First things first, you are Not Helpless in the matter. You are your child's best advocate. Since the biopsy is an ordeal . . .my suggestion is that since your household eating habits are already gluten free for the whole family, make sure she follows the same diet when away from home too(no cheating). Make sure you know her vitamins and meds are also gluten free. If her symptoms stop after a few months of being on a strict diet, you can assume she does have Celiac Disease or a gluten intolerance. I wish I had taken that advice 8 years ago when my daughter was three.

Best of Luck!

-Marcie

srall Contributor

First things first, you are Not Helpless in the matter. You are your child's best advocate. Since the biopsy is an ordeal . . .my suggestion is that since your household eating habits are already gluten free for the whole family, make sure she follows the same diet when away from home too(no cheating). Make sure you know her vitamins and meds are also gluten free. If her symptoms stop after a few months of being on a strict diet, you can assume she does have Celiac Disease or a gluten intolerance. I wish I had taken that advice 8 years ago when my daughter was three.

Best of Luck!

-Marcie

I wholeheartedly second this.

Skylark Collaborator

If she is mostly gluten-free the biopsy may not show anything without a few months of gluten challenge. Even if she is only gluten intolerant and not celiac, current thinking is that keeping her off gluten can keep her from eventually developing celiac. She is at risk since you're celiac and she's symptomatic. You need to put your foot down and stop her family from feeding her gluten for a while. Make it clear how much she is hurting, and that you're pretty sure gluten is the problem. As Marcie says, if her symptoms clear up on a strict diet you can be reasonably sure it's a gluten reaction.

Mama Melissa Enthusiast

thank you everyone:)

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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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