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aileendq

Newbie Here. Need To Vent.

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So I was diagnosed with Celiac about fourteen years ago after I had my son. Since then, I've been glutened countless times (and each time I learned from it, I swear). So now I am hyper-careful with what and how I eat.

However, it seems that lately, ANYTHING I eat becomes a digestive "issue". It has gotten to the point that I I don't eat out and I tend not to socialize as much as I used to.

My rant involves several things. One is that I visted the doctor several months ago complaining of digestive issues, and they did bloodwork to "confirm" the Celiac diagnosis, which was done out of state and many, mnay years ago. Of course, the blood test came back negative. (To which I responded, "Fine, let's go have a couple of slices of pizza and then I'll hang around in your office for the next hour. When I'm doubled over on the floor and/or puking my guts out you can re-test me!" You'd think they would let a grown woman in her late thirties tell them what's up, but no. BTW, it was only a blood test- no other tests were done.

My second, and last, rant involves the sheer cost of gluten free foods. 'Nuff said.

Thank you for "listening".

Oh, yeah, what's the deal with gluten in cosmetics and toilettries?!?!

Gracias!

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Grrrrr

Aren't doctors meant to be smart?!

If you have been gluten free for fourteen years of course your blood tests would be negative (even if you slip up every now and then).

I had a similar issue when I went for a diagnosis, I had already been gluten lite for about six months when I went to get blood tests, of course the tests came back negative and the doctor did not want to send me to a gastroenterologist to get the biopsy. I did some internet research and went back to the doctor and insisted on the biopsy.

As for the price of gluten-free foods I mainly stick to foods that are fresh and naturally gluten free. The only processed things I buy are corn tortillas and gluten free pasta shells.


Australian

Gluten Free Since mid March 2008

As well as gluten I can't eat: cantaloupe, honeydew, dairy and most nuts and seeds. I also seem to have a problem with a lot of fruits and vegetables but only when they are raw.

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Doctors can be real idiots when it comes to celiac, and we suffer for it. Please don't let them poison you for a few months to prove something you already know. I know if a doctor ever tries it with me I will be bringing in a letter from my lawyer stating that they will be held responsible for any monetary loss and for compensation for pain and suffering. If they won't sign it I won't challenge, period. Whoops sorry got into a bit of a rant there myself.

Your last line may be the reason why you are suffering. Celiac involves an autoimmune reaction, that reaction can be started by even the tiniest amount of a gluten containing substance. The autoimmune response starts the second that gluten comes into contact with mucous membrane, that membrane can be in the mouth, gut, nose, eyes, vaginal tissues etc. Your system doesn't care where the gluten enters your system it just knows it is there and will react. That is the reason why we need to eliminate it from our toiletries and shampoos, makeup and even things like cat litter and pet foods (they eat and then lick themselves and us).

You have come to one of the best places to ferret out hidden gluten sources that doctors just don't think to mention.

Also many of us have developed a reaction to the protein in dairy products and soy. You may want to try and elimate them, one at a time starting with the dairy.

Also do not trust any med or supplement that is not specifically labeled gluten free. Check all meds, the generics need to be checked with the maker every time you refill as they can change binders at will. The FDA in all their 'wisdom' don't have any label or allergin regs when it comes to drugs so they are one of the riskiest substances we come into contact with. Shame on the FDA for that one.

I hope you are able to figure out what is getting you soon and that you are soon feeling better than ever.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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Doctors can be real idiots when it comes to celiac, and we suffer for it. Please don't let them poison you for a few months to prove something you already know. I know if a doctor ever tries it with me I will be bringing in a letter from my lawyer stating that they will be held responsible for any monetary loss and for compensation for pain and suffering. If they won't sign it I won't challenge, period. Whoops sorry got into a bit of a rant there myself.

Your last line may be the reason why you are suffering. Celiac involves an autoimmune reaction, that reaction can be started by even the tiniest amount of a gluten containing substance. The autoimmune response starts the second that gluten comes into contact with mucous membrane, that membrane can be in the mouth, gut, nose, eyes, vaginal tissues etc. Your system doesn't care where the gluten enters your system it just knows it is there and will react. That is the reason why we need to eliminate it from our toiletries and shampoos, makeup and even things like cat litter and pet foods (they eat and then lick themselves and us).

You have come to one of the best places to ferret out hidden gluten sources that doctors just don't think to mention.

Also many of us have developed a reaction to the protein in dairy products and soy. You may want to try and elimate them, one at a time starting with the dairy.

Also do not trust any med or supplement that is not specifically labeled gluten free. Check all meds, the generics need to be checked with the maker every time you refill as they can change binders at will. The FDA in all their 'wisdom' don't have any label or allergin regs when it comes to drugs so they are one of the riskiest substances we come into contact with. Shame on the FDA for that one.

I hope you are able to figure out what is getting you soon and that you are soon feeling better than ever.

I'd like to thank you sincerely for what you said there. I just came home from my physician's office to look at the results from my ultrasound. My response was a stupid grin after flipping through papers with, "Oh everything seems normal. It could have been just a virus irritating your liver. I mean we could do it again if you want but it appears all normal."

Normal? I get cramps, diarrhea, bloody stool when I get constipated and put in a lot of effort, gas bubbles that nearly send me ground sprawling, I regurgitate after I eat half of the time even with my digestive enzymes, hives when I get contaminated, trouble keeping on weight, and bloody blisters on my tongue. Yeah, it's ALLLLLLL normal.

But ravenwoodglass, thank you for saying words to remind me that I am not crazy and that the physicians are quite ignorant and incompetent when it comes to celiac's disease.

End of my rant.


Gluten Free since 01/28/08

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Normal? I get cramps, diarrhea, bloody stool when I get constipated and put in a lot of effort, gas bubbles that nearly send me ground sprawling, I regurgitate after I eat half of the time even with my digestive enzymes, hives when I get contaminated, trouble keeping on weight, and bloody blisters on my tongue. Yeah, it's ALLLLLLL normal.

End of my rant.

I keep wanting to say this to so many with ignorant uncaring doctors.

Ask your physician if it's so normal, is that how life is for him/her? If not would he/she care to trade places with you?

HMMMMMMMMMMM?

Just a guess but probably not. :ph34r:


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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