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Previously symptomatic undiagnosed child now asymptomatic?

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Looking to see what else other may have seen or experienced. My 5 yo daughter had issues with gluten since birth. I had been gluten free for 4 years before being pregnant with her. ( I was not diagnosed celiac, had gene test, positive, antibody test negative. later figured out I was IgA deficient, but already gluten-free diet by then) Anyway, I got glutened when exclusively breastfeeding her, she had diarrhea for days until it cleared my system. Diarrhea reoccurred when she  had milk pumped from that time period. Fast forward to solid food introduction: she had diarrhea when she tried wheat foods around 12 mo old. I make everything at home gluten free, so she tried gluten at grandmas. Decided to skip wheat, since washing diarrhea diapers is no fun.  She was probably glutened some times during toddlerhood, as toddlers put everything into their mouths. At three, we decided to try a gluten challenge, which in hindsight, really messed up potty training. She had alternating constipation for days, then followed by a couple days of diarrhea. After 10 weeks, her antibody tests were negative, her IgA ok,  her gene test positive. I skipped endoscopy for $$ reasons, but returned to gluten-free and her BMs became normal consistency and regularity again. Since then, she had occasionally been glutened, usually an oops at daycare or gluteny playdoh. Last time we knew she was glutened was regular playdoh at preschool in Sept 2016, after which we bought her gluten-free doh and gluten-free toys for her to have in class.  AND potty training issues greatly improved over this past year. BUT just three weeks ago, she got into a regular ice cream sandwich...and there were no diarrhea poops. So last week, I fed her one whole piece of gluteny bread....and no diarrhea.  So I'm torn about what to do! Has she outgrown something? Is she 'silent' in her symptoms now? I know the Dr would say go back to gluten and retest if symptoms return. But mommy bear worries if silent symptoms would hurt her during years of growth? Or maybe I'm overthinking and she'll be just fine for the rest of her life?

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Celiac.com Sponsor (A8):

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Celiac disease does not go away, you do not out grow it. Unsure if the D/C manifestations were due to a shock to the system or if actual celiac. I would personally wait a few more years and perhaps try a gluten challenge again when she is a tad older. Everyone is different in how they react and your symptoms evolve and change over the years. Also was wheat listed in the ingredients on the sandwich? Or was it just not labeled gluten-free? I have noticed now days some foods they are omitting wheat where it is NOT needed in everything for a hypoallergenic sub like rice, potato, tapioca, etc.

Perhaps someone else can give your better advice, I know if I have kid I will be overly protective about them getting into gluten since I was very damaged growing up not knowing. As a baby my mother now admits I had all the classic symptoms and they had a terrible time trying to get me to eat formula, and baby foods having to use very special and specific brands mostly ones that here hypoallergenic and easy on the stomach. As I got older the D/C went away with exposure but the C came back on and off in middle school progressively getting worse over the years, and all the other major symptoms slowly started manifesting then hit hard much later in life. Wish we had known about the disease way back then.

While testing now would give  the benefit of peace of mind, and access to assistance programs if positive diagnosis on the record, it is up to you which route you wish to proceed with.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Celiac symptoms can wax and wane.  It is rarely consistent. Small children often test negative to the TTG.  Do you know if she had the DGP or EMA antibodies tests?  

  You might want to consider a challenge now and get that official diagnosis since she is five and she should be making antibodies now.    She will be starting school and I can tell you as a parent, school becomes more challenging each year.  Being sick makes it hard to learn.   She would need a 504 plan in plan to get accommodation in school.  Trying to do a challenge later could put her behind.   At least you could get a NCGI diagnosis from a GI, and that would help too.  

I know you are between a rock and a hard place.  I hope you are able to figure it out.  My heart goes out to you!  

Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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There are some reasons for a diagnosis, like a 504 plan in the public schools. Celiac would be a disability and they would have to accommodate your child in the cafeteria with special lunches, etc. Also all their teachers would be specially notified and know, from an official standpoint, that gluten is a major issue. This would matter in college as well.

See this https://www.understood.org/en/school-learning/special-services/504-plan/the-difference-between-ieps-and-504-plans and this


i have 3 children, and I personally would contact the doc and talk to them about testing and doing the gluten challenge now. That's just my personal opinion, for my personal boys.... I'd want to know for sure, or as for sure as I could. Considering some testing can be wrong.

it would be good to know how much your doc sympathizes with the situation. Leave him off gluten until you make a decision. 

Again, just my opinion!!!!! You must decide what best for you guys.

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This is completely anecdotal, but I ran into the story of a woman whose daughter didn't have a firm diagnosis and then, like your child, appeared to become asymptomatic. At that point they met with the doctor and started the testing process. She ate as much gluten as she wanted until she had symptoms. It took 4 months.  she suddenly presented with diarrhea and vomiting.  They did the endoscopy and biopsy and she was Marsh 3. 

Coming from experience for my daughter and myself, the gluten challenge is very difficult if there are symptoms. And many don't last long enough for accurate testing.  If your child is currently asymptomatic, now might be a good time to begin a challenge. 

But I completely understand your concern. No one wants to subject their child to illness for the sake of testing. There is always the hope that more accurate testing that doesn't require a prolonged gluten challenge may arrive over the next few years. I know it's being worked on. 

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