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Results On Gluten Free Diet After 4 Months...

rachelh4207

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rachelh4207 Apprentice
rachelh4207
Posted

Hi all! I have a now 3 year old daughter who I posted about here:

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.

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tarnalberry Community Regular
tarnalberry
Posted

Yay! It's wonderful to hear you stuck with your gut and she's doing so well!

AGH2010 Apprentice
AGH2010
Posted

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.

rachelh4207 Apprentice
rachelh4207
Posted
  • Author

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).

tom Contributor
tom
Posted

...

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. :)

justlisa Apprentice
justlisa
Posted

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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    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

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