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Question About Accidental Gluten-Eating


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#1 nicolebeth

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Posted 22 October 2012 - 01:49 PM

Hi, everyone. We decided to take our son (7) gluten-free on October 3. Anyway, until yesterday, we feel pretty good that he's been gluten-free. The new GI we saw was pretty unwilling to classify him as celiac (though acknowledges the existence of non-celiac gluten intolerance) because our son had a negative biopsy in June 2010. After an x-ray, our son was deemed very constipated and was told to take Miralax. While we gave it to him, and were willing to make the nutritionist appointment as recommended by the GI, we also decided, on our own (and after much advice from this forum!) to take him gluten-free. Interestingly, he had NO reaction to the Miralax at all, but feels his stools are more normal now. We've been gradually reducing the Miralax dose (and he started with a whole capful). That adult dose did not incapacitate him as predicted by the GI. Yet, somehow, his stools have become smaller since taking it (and since we've taken him gluten-free).

Anyway, yesterday, he was given Twizzlers at a birthday party. My husband had no clue those have gluten. For some reason, I've known this for several years. I know that less than three weeks is too soon to know anything about whether our son is responding to the diet. He claims to have had no reaction to eating the Twizzlers (I asked him, separately, how he's been feeling, even before mentioning the Twizzlers).

Am I right that three weeks is too soon to know anything? And how much of a setback is this? We're trying to see if our kid starts to grow/gain weight, and realize that, at some point, it might be clear that gluten is not his problem (although, again, he says he feels better, digestively, without it). Are we on Day 1 again because of this?

My husband felt badly, and admits that he would not have messed up if our son was actually diagnosed with celiac. That's why the GI doctor wasn't recommending a gluten-free diet for gluten intolerance. He thinks it's too difficult to follow. It's annoying that he was proven right. My son has otherwise been doing well, even turning down bread from forgetful-but-well-meaning-teachers.

Thank you (and thanks to everyone for the previous advice--it was very helpful!!)
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#2 Celiac Mindwarp

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Posted 23 October 2012 - 12:55 AM

Everyone has hiccups when starting out, dont beat yourself up. My husband accidently fed me 3 wholemeal bread rolls when I was 3 weeks gluten-free.

I am 7 weeks now and getting the hang of it more.

Worth sticking with it and it is unlikely he is back at day 1. If nothing else, you are learning about the diet.

I always stash snacks in my bag for things like parties and playdates - gluten-free for me nut free for my son

Good luck
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#3 Celiac Mindwarp

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Posted 23 October 2012 - 12:56 AM

Oh, and I am self diagnosed
:)
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#4 nicolebeth

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Posted 23 October 2012 - 06:40 AM

Thank you! We did notice that our son, while having no direct complaints, seemed to be constipated (or, at least stopped up) again yesterday. We are pretty sure he actually has celiac, but were hopeful this wouldn't be too much of a setback. Thanks again for the reassurance!
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#5 shadowicewolf

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Posted 23 October 2012 - 11:47 AM

It happens! Don't sweat it!
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#6 GottaSki

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Posted 23 October 2012 - 12:55 PM

I agree - tell your hubs to try not to feel bad - I know mine always did each time he's made a mistake with ingredients - we both cook. It happens - more frequently in the early days, but accidents will happen again. Each accident will not reset your son back to day one - although he may develop a few more symptoms to accidental glutening as his time gluten-free increases.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 Darn210

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Posted 23 October 2012 - 01:46 PM

We're five and a half years into this and my husband glutened my daughter within the last year with regular Rice Krispies at a hotel . . . "Hey, she eats Rice Krispies at home, she can eat them here" . . . he didn't realize there are two versions.

It happens.
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Janet

Experience is what you get when you didn't get what you wanted.


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#8 nicolebeth

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Posted 23 October 2012 - 07:26 PM

Thank you, everyone. We will try to mellow out--well, I will (my husband couldn't be any more mellow).

It turns out that the nutritionist decided our son should be treated as having celiac after hearing the family history, the slow growth, the minor symptoms after having the licorice, and our willingness to have started the gluten-free diet on our own. She gave us all the celiac diet materials, talked about vitamins, etc. The GI doc is sticking with non-celiac gluten intolerance, but we're feeling supported by them, which is good!
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#9 Takala

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Posted 23 October 2012 - 07:47 PM

Funny how much easier the gluten free diet is to follow for just gluten intolerance, if you are sick enough to start out with :rolleyes:
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