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lorna

Re: Re Diagnosed

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Hey folks not sure if any of you remember me but I posted on this site a few weeks ago saying that I was diagnosed when I ws 5 years old and had not stuck to a normal diet since I was 17 because the docs told me I was no longer coeliac.....

I phone the docs on monday and was told that my blood tests were clear. I was not convinced and decided to go gluten free on my own. How ever I got a phone call at work today to say that I am infact coeliac and they could not understand why I had been told otherwise 25 years ago.

I am horrified at the damage that may have done over the last 25 years thru miss diagnosis. I am now waiting to get a density scan and further blood tests.

I did actually have skin problems for years and my hair is falling out and yet the doc had made no conection until I asked to be re-tested. has anyone else had this problem.

I know I will have to contniue to dye my hair to camoflage the baldness but maybe it will grow in stronger and not break so easily.

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It is a travesty that so many people here were diagnosed as children, and then told later they recovered from celiac disease. Only to get really ill, and developing other autoimmune conditions later on in life.

On the gluten-free diet, your hair may indeed start getting thicker, I hope it works for you. Unfortunately, you can't erase the past 25 years (wouldn't that be nice), and of course, you will have damaged your body by eating gluten foods.

The good news is, that by being gluten-free from now on, you will get much healthier, and some of the damage is reversible (possibly not all of it any more, but you never know). And your risk of developing cancer will be back to average within five years on the gluten-free diet, too.

So, look ahead instead of back, and do the best you can from now on. That is all you can do. I hope you feel much better soon.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I did actually have skin problems for years and my hair is falling out and yet the doc had made no conection until I asked to be re-tested. has anyone else had this problem.

I know I will have to contniue to dye my hair to camoflage the baldness but maybe it will grow in stronger and not break so easily.

Me too. My hair also turned almost all white, what there was of it. Mine did grow back and I now have clearer skin than I have had since since I had 'poison ivy' head to toe for 12 months of the year as a kid. Needless to say it was DH. One thing you need to be careful of though is hair dye and shampoos etc. Many do contain gluten so you want to make sure they are safe.


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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Lorna,

Same thing happened to me. I was diagnosed at age 2, then told at age 18 that I didn't have Celiac. I was just re-diagnosed 4 months ago (I am now 27). It's horrible how ill-informed about this disease doctors can be!


Lisa

"The world is a book and those who do not travel read only one page" -St. Augustine

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Me too. My hair also turned almost all white, what there was of it. Mine did grow back and I now have clearer skin than I have had since since I had 'poison ivy' head to toe for 12 months of the year as a kid. Needless to say it was DH. One thing you need to be careful of though is hair dye and shampoos etc. Many do contain gluten so you want to make sure they are safe.

never thought of shampoo/hairdye etc being the cause of my hair to fallout. I think itwas originally the DH that caused it. although I will be more vigilant from now on and check what ingredients are in theproducts that I use..........

Thaks for that advice :rolleyes:

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Lorna,

Same thing happened to me. I was diagnosed at age 2, then told at age 18 that I didn't have Celiac. I was just re-diagnosed 4 months ago (I am now 27). It's horrible how ill-informed about this disease doctors can be!

i can't believe that the GP never picked up on my symptons ..........

Altough when I spoke to my GP today who wasn't in practice 25 yars ago she can't understand why I was informed that I was not coeliac all those years ago.

Something to think about though... i had called on monday of this week and ws told the results were negative tehn the GP called me today and told me they were positive. Its like they were looking at some other patients results and not mine!!!!!!!!!

Maybe that's what happened 25 years ago thats the NHS for you :( not impressed

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