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New, Have Some Questions About My Children


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20 replies to this topic

#16 frieze

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Posted 20 November 2013 - 08:46 AM

They already tested our daughter this summer and it was negative. Our doctor won't test again for another year. And, if we do the gluten-free diet and it works, do we really NEED to know that it's celiac?

for school you may, they don't have to take your word for it.  and you will need them to work with you.


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#17 greenbeanie

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Posted 20 November 2013 - 08:46 AM

(I'm not sure why my message posted twice. Just deleted this repeat posting. Browser seemed to get stuck when it was trying to post before.)


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#18 mommida

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Posted 20 November 2013 - 09:45 AM

Crazy pre diagnoses story.....

Daughter started having severe Celiac symptoms when she started "solids".  She was having symptoms on breastmilk too.  I removed gluten from the family diet because docors kept blowing off concerns and didn't do any testing. (over 10 years ago ~ but I still hear doctors are blowing off testing for that "fad diet").  Improvement!  Asked for testing to be done with new information of gluten free diet helping the situation. 

 

Put everyone but myself back on gluten.  (I was too sick immediately after eating and had to take care of 2 kids.)  My daughter was sick, sick, sick, again.  She had her Celiac panel drawn and the day after the 2 week gluten challenge she was hospitalized for 4 days for dehydration from "D" and vomitting.  Started gluten free diet in hospital.  She was labeled as too ill for the endoscope with biopsy and the genetic testing was done.  She tested positive for both DQ2 and DQ8.  She was diagnosed as "probable" Celiac.  She was pur strictly on a gluten free diet at 16 months old.  Life was pretty good.

 

Then everything really hit the fan.  She just turned 6 and all Celiac symptoms returned, but much worse.  She was vomitting up to 5 times a day.  I could not find any "hidden" gluten or cross contamination in the house.  Back to the ped. GI for an endoscopy with biopsy.  She was diagnosed with Eosinophilic Esophagitus.  EE is now known to have a connection to Celiac and all new cases of EE should have an automatic screening for Celiac.

 

The really hard question that will never be solved, Did she have EE from the start?  Could we have avoided the once a year (on average) hospitalization for dehydration if she had been fully diagnosed with BOTH Celiac and EE?

 

From my experience, I suggest you get a FULL and ACCURATE diagnoses.  It sounds like the ped. is not helping you get the diagnoses, so you need a refferal to a ped. gastro.

 

A short list of related disorders for gut pain/ "D"/ vomitting/ malnutrition in ped patients

Celiac/gluten intolerance/ DH* DH would have a noticeable bilateral rash

congenital defect of GI track

H. Ployri.

Eosinophilic Gastro Track disorder/ EGID

parasitic infection

 

(that's a short list off the top of my head from memory of pre EE dignoses 5 years ago.)


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#19 mshanson3121

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Posted 20 November 2013 - 11:59 AM

^^We live in Canada. We only see a GP. In order to see a ped gastro we would have to be referred to a ped, which would take at least 2 months. Then we would have to have the ped refer us to a ped gastro, which would take another 2-3 months.  The nearest ped gastro is 7 hours from home at the children's hospital. Now, the ped would probably order some tests, however, the wait time is normally 1 month for blood work, and would be probably 3+ months for any sort of scope. So, we'd be looking at another 3-6 months for testing, then tack on another month for results.

 

So, is it worth waiting?


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#20 nvsmom

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Posted 20 November 2013 - 12:24 PM

It wasn't with waiting for in my kids' situation. They ad some symptoms that were gastro related but my oldest had cognitive and concentration issues (we suspect mild aspergers but never completed the diagnostic testing because we homeschool - a diagnosis wouldn't affect his life. Anyway, we knew I was a celiac so thy had the tTG IgA tests (I'm in Alberta and that's all they would run) but they all came back negative. We made them gluten-free anyways and they had a lot of "coincidental" health improvements over the next few months. I wasn't about to make them continue eating gluten for another year or so just so we could test again... They can test themselves when they are adults, but I won't make them sick children just to get an answer.

As for the schooling, we homeschool through our public school and they attend school two days a week. It was no problem to inform the school of my kids' celiac disease r my son's nut allergy. I don't know what province you are in but Alberta it is easy to get provisions for kids.

Good luck.
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#21 mshanson3121

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Posted 20 November 2013 - 12:33 PM

nvsmom - We homeschool too! We're in New Brunswick, it wouldn't be a problem to get provisions for a celiac diet if they were to enter the public school system. It'd be far harder to get provisions for services for my son's sensory issues or my daughter's ASD.


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