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Is She Gluten Sensitive Now That She's gluten-free?


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6 replies to this topic

#1 Grace'smom

 
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Posted 27 September 2010 - 02:40 AM

Hi all,

I've shared before that my 6 yo daughter Grace was asymptomatic of celiac right through the positive biopsy. She did have thyroid disease as a result of undiagnosed celiac, but no stomachaches or headaches, etc. I mentioned to the GI this summer that about 8 wks into the gluten free diet, if Grace had accidentally ingested gluten (which in the beginning she definitely did) she would complain of a stomach ache. I asked the doctor if this were common and she said no. I'm confused. I know for a fact that one time, Grace ate a grilled chicken patty that I'd mistakenly assumed was wheat free. After she complained of terrible stomach pains after eating it, I went back and was horrified to find that the seasoning on the chicken DID contain wheat. Beyond that, I posted Labor Day wkend that we believe she was accidentally glutened in oral surgery w/some of the medication she was given, despite our best efforts to inform the surgeon of her condition. Again, vomited for over 24 hrs. I am still trying to compile the list of meds to bring to her next GI appt and upoming physical. This past week in school, I was concerned becz she was complaining of mild stomach aches. As it turned out, she picked up a virus w/a fever so I could rule out glutening. My question is: the GI seemed to think she would not show signs of glutening NOW if she hadn't THEN. I'm perplexed, because it seems obvious to me that once she went gluten free, when her body receives it now she's sensitive to the glutening. Any one have any thoughts on this? I don't want to continue wondering if she's been glutened if it is truly physically impossible for her to now experience physical side effects, and all of the above have been wild coiincidences. Thank you, Emily
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#2 dilettantesteph

 
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Posted 27 September 2010 - 03:44 AM

I know my dad who is around 80 is poor comparison for a young child, but he experienced the same thing. He was pretty much symptom free. Now he really feels it if he gets glutened. I think that he had just gotten used to his symptoms after so many years. His glutening symptoms are also worse than what he was living with before. That goes for me too, though I was super symptomatic before.
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#3 ravenwoodglass

 
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Posted 27 September 2010 - 05:53 AM

What your seeing is not unusual. It is not uncommon for folks who seemed to be asymptomatic at diagnosis to have reactions after gluten is taken out of the diet. Once the antibody reaction from gluten is gone from everyday life when she injests gluten the antibodies will spike as her system is trying to protect her from the substance that it finds poisonous.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 Grace'smom

 
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Posted 27 September 2010 - 08:13 AM

Thank you both...it makes sense to me, and I was surprised that her doctor looked at me funny when I made that observation. Makes perfect sense; I'll keep paying attn. to these "episodes" to consider the possibility of accidental glutening.

Em
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#5 cassP

 
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Posted 27 September 2010 - 08:52 AM

my reactions have intensified since going gluten free.
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#6 T.H.

 
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Posted 28 September 2010 - 11:17 PM

That is exactly my daughter's reaction - stomach pains now with gluten, no stomach pains before going gluten free. And as both my daughter and I are celiac, we've both reacted to the same thing a couple times, so it's a bit hard to swallow that both of us are 'not' reacting to the same thing at the same time, LOL.

Also my father and I also both have specific reactions now to gluten where we didn't before.

Afraid the doctor is just not real aware, sigh.

Thank you both...it makes sense to me, and I was surprised that her doctor looked at me funny when I made that observation. Makes perfect sense; I'll keep paying attn. to these "episodes" to consider the possibility of accidental glutening.

Em


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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#7 AndrewNYC

 
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Posted 03 October 2010 - 08:07 PM

She may have had a lot of issues when she used to eat gluten but wasn't aware that they were any cause for alarm. Now that she had felt better for awhile she understands how she is supposed to feel when she is well.
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