I thought I would post my husbands experience

[sari]

He is nearly 28 and the majority of his life he has been ill & underweight. I am glad that we continued pressing for tests after the Coeliac Society recommended we do so.

DH was finally diagnosed after his 3rd biopsy. We persisted, not because we wanted him to have this disease, but because we knew something was wrong and we didn't want to second guess for the rest of his life. This time we went private as the first test at the public the Doctor took a biopsy from the wrong area and only one biopsy, and then the second time the test came back inconclusive, so basically negative.

I spoke to a rep from the Coeliac society and they informed us that because the disease is patchy Doctors are meant to take multiple samples for diagnosis purposes. At the public hospital both times they only took 1!!

It really annoys me because I wonder how many people have gone undiagnosed. You can get all sorts of problems if you go undiscovered! My MIL only just found out a few years ago at the age of 50 and has so many health problems. She has Oesteoporosis and some other equally scary thing.

There are the symptoms DH had:

1. Eczema as a toddler
2. Bowel problems, and stomach aches
3. Muscle aches
4. Depression (even as a small child, from a happy well balanced family)
5. Lethargy - always wanted to sleep
6. Underweight his whole life
7. Found it hard to eat at times
8. Weird reaction to dairy

My MIL was her Doctors first Coeliac patient (she had been seeing him for the last 20 years). Doctors are not taught all that much about Coeliac Disease, I have been told that in their text books there is only one page dedicated to it. I would assume this is all changing now though. I am surprised though at how many people have been given incorrect advise about Coeliac Disease by their Doctors. My MIL's Doctor found out she was a Coeliac by accident, they were doing a heap of other tests and checking for coeliac Disease was just a routine thing that the hospital he sent her to did. Since then her Doctor has done some extra study on the topic has found that quite a few more of his patients have the disease.

My MIL was told that my DH was just "putting up an act" so many times throughout his life. They said they couldn't find anything wrong with him, and one Doctor even told her that she fed him too well which is why he was apparently underweight (how on earth does that make sense?).

I am glad he finally has a diagnosis. He wouldn't have it though if we hadn't have really pushed for the tests. It is a bit of a worry to be honest. I wonder how many people out there have Coeliac Disease, but have been tested for it, and due to human error, or perhaps a lack of understanding on how the Disease works - they have been told they don't have it.

My husband is slowly improving now, which is good
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~*~Sari~*~

[NoahsWife]

Wow! Poor Guy! I'm glad he finally knows what is going on. It took me several years of not knowing before I was finally diagnosed this year. I look back and realize that almost all the health problems I've had are related to CD.
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Never let your fears become the bounderies of your dreams!

[aklap]

Hi Sari,

Thanks for sharing his story. Could you do me a favor? Could you also post it in Our Path's to Gluten Free-dom Thread? That way will have everyone's stories together

thanks!!

I am glad to hear hubby is improving. Lack of knowledge is a huge issue when it comes to CD. Both for medical community & for the patient. That's why we all here...to spread the word!! Hopefullly if the patients become more educated, they will push for testing from their docs. Then it won't take an average of 11 years for dx! More people have issues with gluten than anyone wants to acknowlege - even to themselves. It's estimated 1 in 133 NORMAL people have issues. 1 in 56 if there are symptoms. That's a lot of people... Just think about all the people on reflux meds alone!

Glad you've joined in the cause
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[sari]

Oops! I didn't see that other thread.

Will do that now.
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~*~Sari~*~

[aklap]

Hey - no problem!! Thanks!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa