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fizzy

Lost In Diagnosis

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Hi Everyone,

I'm forty two, female and was advised that my early menopause was the cause of my problems. When I went to another doctor for a second opinion and for advice about the joint pain I was told to combine paracetamol with ibuprofen and get on with it - this is now several years ago. When the joint pain became too much I started taking a tablespoon of extra v olive oil daily. Within weeks my pain had decreased significantly. Anyway I still think it could be coeliac disease. For years I have had difficulty concentrating, I have joint pains, a scratchy bowel, poorly formed stools - often can tell whats been eaten, some times mud pies as well. I go properly at least four times a day and what comes out matches almost what goes in - for quantity. Now I don't look slim - I think this might be because I've always used drinks and sweets to combat the tiredness I feel. I have a great diet - in other respects as I'm mad about vegetables, fruit and grains.

I'm worried about seeing a doctor as I have been complaining to different doctors over the years and have got nowhere. I don't want to be labelled as the 'girl who cried wolf' in case I have an urgent need sometime. So I decided to cut out gluten - felt better but after six weeks then had another attack which also affected my joints badly. Being even more careful with gluten now.

So what I'm trying to say is do these symtoms ring bells with you?

Regards

fizzy

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Dietary response is a valid test for gluten intolerance. It won't tell you if you have celiac disease, but if you feel better gluten-free, that's the most important thing. :)

If you are not feeling better gluten-free and are sure you are gluten-free, then I would be looking for what else might be wrong.

Also, check out this thread and see if these symptoms ring a bell for you. http://www.glutenfreeforum.com/index.php?showtopic=36163


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi fixxy, are you in Europe by any chance?

Here it is best to get a proper diagnosis, by biopsy but then you must eat a lot of gluten feforehand----something like 0,3 grams per kg and for several weeks, or your antibodies might have decreased below the level og detection, and the gut might ahve changed to the better, making diagnosis harder.

(I did not get an official diagnosis, but daughter did)

There are some grat articles in the bmj about coeliac, also atypical coeliac, like over-weight people and old people and patints without antibodies despite total villous atrophy etc.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Hi Everyone,

I'm forty two, female and was advised that my early menopause was the cause of my problems. When I went to another doctor for a second opinion and for advice about the joint pain I was told to combine paracetamol with ibuprofen and get on with it - this is now several years ago. When the joint pain became too much I started taking a tablespoon of extra v olive oil daily. Within weeks my pain had decreased significantly. Anyway I still think it could be coeliac disease. For years I have had difficulty concentrating, I have joint pains, a scratchy bowel, poorly formed stools - often can tell whats been eaten, some times mud pies as well. I go properly at least four times a day and what comes out matches almost what goes in - for quantity. Now I don't look slim - I think this might be because I've always used drinks and sweets to combat the tiredness I feel. I have a great diet - in other respects as I'm mad about vegetables, fruit and grains.

I'm worried about seeing a doctor as I have been complaining to different doctors over the years and have got nowhere. I don't want to be labelled as the 'girl who cried wolf' in case I have an urgent need sometime. So I decided to cut out gluten - felt better but after six weeks then had another attack which also affected my joints badly. Being even more careful with gluten now.

So what I'm trying to say is do these symtoms ring bells with you?

Regards

fizzy

Boy does that all sound familiar. After I was finally diagnosed my GYN told me my periods might start back up again, it had been too long for me though. Just be aware it can happen and don't panic if it does. I do know my other thought to be menapause related issues also went away along with a lot of other stuff when I went gluten free. It sounds like you have had a positive response to the diet, and perhaps an inadvertant challenge at the six week point. Many of us become more sensitive to cross contamination as time go by. This is a good thing it shows us that our bodies definately don't want even the tinest amount in our systems. Watch out for common causes of cross contamination and check all your meds and toiletries. You have come to a great place for info and support. Ask any question you need to and feel free to vent frustrations if needed.


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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Hi Guys,

thanks to Carla B, Nora N and Ravenwoodglass for the replies.

I was so excited earlier about the potential of talking to people who might understand my predicament that I forgot to list some of the symptoms.

Tingling and stiffness in hands and feet and nausea which I think is due to cow's milk. Also beer makes me feel woozy even alcohol free which I had in Holland earlier this year - I practically accused my relatives of trying to poison me!! They very sensibly suggested the problem was probably me and not the beer they had specially bought for me to drink on my visit. I don't drink alcoholic lager now as I have noticed that it very strongly disagrees with me even in small amounts.

So that was what got me thinking about coeliacs because if it's alcohol free there isn't much that the beer can do to me.

Finally both my sisters have auto immune diseases so I'm thinking there is a possible link there.

regards

Fizzy

ps how clever of you I am in Europe

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Also beer makes me feel woozy even alcohol free which I had in Holland earlier this year - I practically accused my relatives of trying to poison me!! They very sensibly suggested the problem was probably me and not the beer they had specially bought for me to drink on my visit. I don't drink alcoholic lager now as I have noticed that it very strongly disagrees with me even in small amounts.

I always wondered why I would get drunk off of alcohol free beer and a whopper of a hangover too. We have a couple gluten free beers here and I can actually drink 3 and still walk straight and feel great the next day. My DH who is also celiac got pulled over one night and taken to the drunk tank. He had half a beer an hour before. The cops couldn't believe it when he hardly blew anything on a breathalizer. They let him go but gave him a ride home because he didn't seem safe to drive. Seems funny but we get 'drunker' off the gluten than off the alcohol and it doesn't take much.


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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