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Results On Gluten Free Diet After 4 Months...


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5 replies to this topic

#1 rachelh4207

 
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Posted 20 July 2012 - 10:16 AM

Hi all! I have a now 3 year old daughter who I posted about here:
http://www.celiac.co...943#entry785943

This is her symptom list from March of this year:
My 2 year old has had a rough two years! First of all, had ear infections from 6wks to 9 months when she finally got tubes, was very small for her age and always has been. Currently her issues are:
-night sweats (and nap time ones) wakes up SOAKED
-irritability
-broke her leg- two bones- a few months ago from a very small fall (not sure if that could be related)
-fell a few months before and chipped her front tooth which quickly abscessed and had to be pulled. (she was trying to run and bless her heart she is just not very good at balance) (again, not sure if this could be related)
-swollen stomach- she is skinny but in the last year her stomach has gotten huge! still tiny body and you can see her ribs on the sides but her belly swollen
-chronic yeast infections
-rashes
-not water diarrhea, but loose stools
-blood sometimes when i wipe her (but she is NOT constipated)
-delayed development (walking and such)
-very weak compared to my other children
-Has the "allergy" look to her. sick eyes and such. 


So wanted to share our experience for those who really struggled with not knowing what to do. We did the blood work which came back negative but we were 6 days into the gluten free diet. Also did the endoscopy with a colonoscopy and both came back normal 3 weeks into the gluten free diet. Our insurance paid about 85% of everything and out of pocket it cost us over $1300 (so far, still getting bills in 4 months later) So what did the doctor say to do? Go on with normal life on gluten. Did we? NOOOOOO WAYYY.... So 4 months later:

She went from LESS than 3rd percentile on weight and height (has always been that percentile even at 6 months old) to 17th on weight, and 33rd on height!!! Gained 3 pounds in 4 months and grew almost 3 inches! Her hair has grown over 4 inches!!! She sleeps all night, she tries to run (still has major issues with her leg not healing right), she is HAPPY, she plays with her sisters and is NOT on my hip non-stop, no night sweats, no weird bowel movements anymore, stomach size has decreased DRAMATICALLY, and developmentally, she is EXCELLING!

I wanted to post because if you are like I was and New to this celiac/gluten intolerance issue- then You are searching the internet reading everything you can looking for "what to do"...I want to say listen to your GUT. regardless if you do the tests (which I DON'T recommend) PLEASE try the gluten free diet and don't look for reactions right away. Wait a few months. My daughter is "thriving" for the FIRST TIME IN HER LIFE. Gluten free changed her life and mine (I also discovered that I have it and feel GREAT).

Our house is GLUTEN FREE. Our other daughters are gluten free. It is not always easy and at first I CRIED trying to figure out what to cook. But after 4 months, I feel confident that this diet is the best thing for our family and it is WORTH the extra time in the kitchen. We have GREAT meals a night and sometimes have some gluten free bread there and there also.

Also, she got "a hand full" of pretzels by mistake at church one day and her reactions were like this: SO SO SO whiny and irritable. She wouldn't eat the rest of the day and cried non-stop. Didn't sleep through the night for SEVEN NIGHTS! Her gas started hours after getting the gluten and it smelt awful and her belly was tore up for two days. She even Sweated more than usual those few days after. So we got our "reaction" accidentally and now know it ISN'T WORTH IT....


If your child has signs of gluten issue, don't stress out. Everything will be okay. It is a LONG road that I am still on, BUT it gets so much easier:)
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Rachel

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#2 tarnalberry

 
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Posted 20 July 2012 - 01:43 PM

Yay! It's wonderful to hear you stuck with your gut and she's doing so well!
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#3 AGH2010

 
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Posted 20 July 2012 - 02:28 PM

Thank you do much for posting!! I'm struggling with whether to go ahead with an endoscopy for my 2 year old or to just go gluten-free and skip the test. Her blood work came back positive for celiac and showed high inflammation. I've taken her to 3 GIs who say I have to do the endo but warn me that the damage may be patchy so it may come back negative.

The description of your girl pre-gluten-free is similar to mine, ESP the bloated belly despite being tiny everywhere else, the sweating in her sleep and the allergy look on her face. I really hope hers is related to gluten too!! She's had bags under her eyes since she was an infant.

The only things the doctors say to refute their stance is that a gluten-free diet for the rest of her life is an extreme measure and I owe it to her to have her tested via biopsy. But like you, even if it comes back negative I'm going to eliminate her gluten to see how it helps.

So happy to hear about your daughter's changes for the better. Thanks again for sharing.
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#4 rachelh4207

 
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Posted 20 July 2012 - 04:37 PM

Thank you do much for posting!! I'm struggling with whether to go ahead with an endoscopy for my 2 year old or to just go gluten-free and skip the test. Her blood work came back positive for celiac and showed high inflammation. I've taken her to 3 GIs who say I have to do the endo but warn me that the damage may be patchy so it may come back negative.

The description of your girl pre-gluten-free is similar to mine, ESP the bloated belly despite being tiny everywhere else, the sweating in her sleep and the allergy look on her face. I really hope hers is related to gluten too!! She's had bags under her eyes since she was an infant.

The only things the doctors say to refute their stance is that a gluten-free diet for the rest of her life is an extreme measure and I owe it to her to have her tested via biopsy. But like you, even if it comes back negative I'm going to eliminate her gluten to see how it helps.

So happy to hear about your daughter's changes for the better. Thanks again for sharing.


If I could go back again, I would NOT go with the endo. I know others may disagree BUT at this point it may be pointless since they even said the damage may be patchy. When she is older, if she WANTS an endo, she can go back on gluten for a few months and get one. After a day or two back on gluten, she will be okay with skipping it;) It was VERY expensive and since it didn't help us at all, we regret it. Save the money and put it towards the gluten free change (buying new stuff for the kitchen and all the food).
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Rachel

#5 tom

 
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Posted 20 July 2012 - 04:57 PM

...
So wanted to share our experience for those who really struggled with not knowing what to do.
...

Fantastic post Rachel! What a story. I bet it'll directly help some ppl too. :)
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#6 justlisa

 
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Posted 24 July 2012 - 05:05 AM

Rachel... Thanks for posting this! Very informative and inspiring... I love to read about folks who, regardless of the professionals, have done what THEY feel best (especially when the "pros" weren't able to help).

I've been having some difficulty "understanding" the folks who go to such extraordinary means ("gluten challenges", testing, etc) for an "official diagnosis"...especially when they have seen improvement gluten-free... And, when it's your child??? I just can't "see" not trying gluten-free when nothing else is working... There is nothing worse than having something "wrong" with our child and unable to help them...

I, also, do not "get" this "not fair- it's a lifetime change and would be cruel- meme" that is spewed... Do doctors think that everyone is too stupid to be able to tell if gluten-free isn't working? Are they saying that "you can never go back to gluten once you've gone gluten-free" if gluten-free doesn't help? I really wish someone could explain his to me...

IMO, it is insanity to NOT try gluten-free when you have sooo many symptoms that correlate with gluten issues...when NOTHING else is helping!

So very happy your baby girl is thriving!
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