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Grr... Need To Rant About Doctors....

Smunkeemom

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Smunkeemom Enthusiast
Smunkeemom
Posted

Okay so my daughter Kathryn has decided to go gluten-free to see if some of her physical symptoms subside.

She is having these symptoms

stomach cramping

muscle aches

trouble concentrating

irritability

bone aches

trouble sleeping (because of aches and pains)

She is constantly cranky and claims to be in pain, she has dark circles around her eyes from lack of sleep and cries for no reason. She had a pos blood test but a neg biopsy, I called her GI and she said she was "reluctant to start a gluten-free diet without severe damage" but agreed that it would be a good place to start since we can't find any other cause for Kathryn's problems (and her sister is already gluten-free because of severe celiac disease) I got things squared away at school about breakfasts and snacks, and gluten-free playdough and such, but they want a dr note about her celiac disease to be put on file.

Her general practice dr won't write one because he thinks that I am trying to push her into a gluten-free diet when her biopsy was neg, because he says the blood test means nothing without the biopsy. I asked her GI for a note but she wants to see Kathryn and her GP won't refer us because "Kathryn isn't having diarehha"

I am on the hunt for new doctors, does anyone have a link to an article that says that diarehha isn't the only symptom of celiac disease?

My kid is sick, I think that the gluten is making her that way, she wants to go gluten-free, I want her to go to school, and I want a dr that will support us in trying to help her feel better.

sorry to rant, but this is just ridiculous to me. I need sage-like advice from someone who has been through all this before. HELP!!!!! I am frustrated, I need encouragement. I am a good mom right?! I am just trying to help my kid.

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Ursa Major Collaborator
Ursa Major
Posted

Poor Kathryn, I had the exact symptoms she does when I was her age, and I was miserable (add asthma to the mix, though). So what the biopsy was negative, she very obviously has celiac disease and needs to be off gluten now!

I am sorry I can't help with finding new, more knowledgable doctors. I hope somebody else can help you with that.

How ignorant of the doctor to think you should only go gluten-free if severe damage is visible. How about avoiding that damage? It's just another example of how poorly doctors are trained these days. It's all about treating symptoms, not fixing the cause.

Tell the school that they can write their own report on Kathryns improvements they can observe themselves when she is gluten-free. And that you're looking for a new doctor, who knows what he/she is talking about, and that they'll have to wait for that note until you do.

If everything else fails, tell them you are thinking of pulling her out of school. They won't like that, because they get a lot of funding for each kid. I know, when I pulled my second youngest out of school to homeschool her, they made a big fuss.

Oh, and I just want to say that you sound like a fabulous mom who wants the best for her children. Don't worry about offending doctors and principals etc., you need to fight for your kids! They come first.

nettiebeads Apprentice
nettiebeads
Posted

I agree with Ursula - don't worry about what others think - You're being a good mom trying to keep one child healthy and have another regain her health. The biopsy isn't the gold standard that most dr's think it is. And why should you dd have to get worse before she can get better, especially when something as simple as the gluten-free diet could help her NOW? Have dr's forgotten the Hyppocratic oath?

"First, do no harm" And not helping in my mind is the sin of omission. Not helping is harming. Rant and vent away. I can't help you much in the ridiculous rules of public school, but I can give you emotional support as a mom. Trust your instincts. In this case, I'm sure mother knows best.

tarnalberry Community Regular
tarnalberry
Posted

The NIH Consensus on Celiac Disease may be just the paperwork your doctor will listen to:

Open Original Shared Link

Smunkeemom Enthusiast
Smunkeemom
Posted
  • Author

My 4 year old said the cutest thing just now, "you know how the preacher said that if you are doing something right that satan will come against you? well, God must really want me to feel better or people wouldn't be so mean to you about my gluten-free diet"

I think I am going to have to learn from her, that her health is worth fighting for, I really must have been naive thinking that she was going to be the one fighting me on the gluten-free diet and not her doctor.

nettiebeads Apprentice
nettiebeads
Posted
My 4 year old said the cutest thing just now, "you know how the preacher said that if you are doing something right that satan will come against you? well, God must really want me to feel better or people wouldn't be so mean to you about my gluten-free diet"

I think I am going to have to learn from her, that her health is worth fighting for, I really must have been naive thinking that she was going to be the one fighting me on the gluten-free diet and not her doctor.

<{POST_SNAPBACK}>

Kids are amazing creatures. Please give her a big hug from me for being so smart, and you get one too for being such a good mom! :wub:

ianm Apprentice
ianm
Posted

Your daughter has great wisdom for a 4 year old. What she says is true. Right before I was diagnosed my life was ready to implode. Almost two years later and it has never been better.

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Ursa Major Collaborator
Ursa Major
Posted

There you go, from the mouths of babes...............She is so very right! She sounds like an amazing, strong, beautiful child.

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