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shan1523

So Confused....

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Ok, mini-history...ds Noah started solids at 5 months age, reacted badly to oatmeal and barley cereal, rash, distended belly, screaming in pain and diarrhea, so we took him off gluten...well except I didnt know all hidden gluten stuff, so he would have diarrhea and the rash stayed for a few more months, he was always a big boy (9.8 born at 36 weeks, yes the dates were right) so when he didnt gain any weight for a few months, the dr's didnt worry, but when he didnt grow height wise (also tall--always 98% for height) they worried ...anyways we took him totally off gluten at 9 months, after I found this site, and talked to some others about what all gluten is...he had a bite of some glutened food at 14 months and screamed in pain, got the distended belly and diarhhea....the doc did some blood work (only 2 of the 5 tests though, I have since learned) and they told me in was inconclusive (didnt say yes, but didnt say no, and wanted me to continue the diet for now since he;s young)....flash to now..he is 2 years and 4 months...Im going crazy not knowing if its celiac or gluten intolerance....(I got tested all five tests, and Im negative) his baby sister is 3 months and we are going through multiple GERD tests and milk soy protien allergy issues, she has apnea issues blah blah blah...so I figured shes going through all the tests, might as well try Noah again with gluten, and do his tests(another reason - have paid our out pocket maxs for the year so all tests would be free to us right now)

ANYWAYS, point is, he has had gluten, small amouts, but gluten none the less, for 3 days now, and no diahrea no screaming no distended belly....Im so confused, I thought he would react somehow...but does this mean he outgrew his intolerance and never had celiac?

He couldnt drink milk for 2 years, but we trialed it in June and hes doing fine...(he has milk protein intolerance issues as a baby, but thankfully outgrew them)

Im so confused..and sick of being at the doctors..my three month old was at the ER sunday, her dr Mon, we have another appt tomorrow and a test on mon......

anyone else have a toddler that suddenly has no symptoms?

Thanks

Shannon

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There was a study where they fed potentially Celiac babies gluten starting at different months (3-6 months, 6-9 months) and found that babies who started eating gluten sooner had more of the painful symptoms. Babies who started eating gluten later still developed the damaged villi, but didn't have the gastro symptoms.

So Noah could still have Celiac, but be in the silent phase of it.

You could try the antibody tests, or the biopsy, or just not feed him gluten, but I think feeding him gluten without finding out for sure might be doing him damage in the long run.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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The kids don't seem to react to the accidental gluten exposures as I do. My daughter didn't seem to react for at least three or four last times, until she was just vomiting two days ago. (could have been a stomache bug, but she didn't have a fever only vomited once and has wanted to just sleep since and the brown circles under her eyes - Dr.'s call them allergy shiners)

You've got to remember that some people are asymptomatic.

You just don't know what kind of reaction you're going to get.

It is really hard trying to figure out what little ones are experiencing. My son gets brain fog so bad it scares him because he can't remember the words he wants to use, and then he can be so iiritable you just want to run away from him.

L.


Michigan

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The kids don't seem to react to the accidental gluten exposures as I do. My daughter didn't seem to react for at least three or four last times, until she was just vomiting two days ago.

Thats kinda why Im confused --in the past he has reacted to accidental glutening, and now no reaction at all...he is tired, but he also gave up naps and has a colicky/GERDling sister who keeps him awake....

I know part of me doesnt want to trial it in case Im hurting him, but then I also just want to know...like give it 2 weeks and then do the full celiac panel....

Thanks for the quick responses...

Shannon

ds Noah 6.28.04---gluten issues...now confused

dd Audrey 7.13.06---preemie, GERD, MSPI, apnea

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I believe that for the tests to be accurate, he'll have to be eating gluten for at least 3 months. (That's the recommendation, anyway.) If you are going to be worrying about this for years if you don't have a definitive diagnosis, then I'd suggest that you go through with the gluten challenge. My daughter's bloodwork came back "Indeterminate", but I knew it runs in the family, and I could see the symptoms she was displaying, so I took her off gluten anyway. 3 days later her diarhea was gone and she was smiling. For me, that's enough. When she does manage to eat gluten (sneaking her sister's sandwich crusts, etc.) she doesn't have any major reactions but her initial reactions make me stick with the diet. I decided that she can decide to do a gluten challenge when she gets to be 12 or so (if she wants), but until then I am going to do the best for her that I can - and that means keeping her off gluten.

That may seem like conflicting advice, but what I mean is: If you need a definitive diagnosis in order to be consistent with a gluten free diet, then do what you need to do in order to get one. Doing a gluten challenge for a few months is unlikely to kill him (although, if he does have celiac, it might lead to further food allergies because of the Leaky Gut problems celiac causes). Either way, think long and hard about it and weigh the options and then do what you need to do.

Good luck!

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Even with going back on gluten for 3 months, it may not be long enough. Many teens and adults have suffered other intolerances and autoimmune diseases with challenges and/or not adhereing to the diet.

If you can, try enterolab. You can do the whole gluten panel or maybe just the gene test. If you know the genes you'll know more of what you're looking at.

www.enterolab.com

Personally, I'm inclined to think that if he had a problem before it will manifest itself again at a later time.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Thanks for the replies...its just so hard, cuz I want to know, but I dont want him to suffer, my DH and I decided to stop trialing the gluten since tests are often inconclusive so young anyways (and I dont want to do the biopsy (my 3month old has to have one for gerd issues and that will be hard enough)

anyway we started to see his behavior and mood change,and he got an odd rash, not the typical DH rash, but a rash...so it was enough to know his body was reacting somehow...so we are off it again, and I dont plan on re-trying it for many many years...

I think i just had a momentary lapse of judgement on my part, I never really planned on re-intro-ing it so young, but I think Im just overwhelmed with my daughters issues I just wanted Noah's to be done...oh well...

thanks for all the replies though

Shannon

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