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A Brief History Of My Coeliac (Uk)

testing symptoms dynski-klein

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#1 Cranleighbeemer

 
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Posted 16 December 2012 - 05:30 AM

I am 58 and have a medically mixed history with Coeliac (as spelled in the UK!). Born in the relatively early years after WWII, I was diagnosed as having a ‘wasting disease’. Initially I had digestive problems and unable to keep food down was placed under paediatric consultant Dr Dynski-Klein at West Middlesex Hospital. I was constantly ferried back and forth to hospital to try different dietary regimes. By the age of 7 I had been on a milk-free diet for a couple of years but, despite eating like a horse, was suffering symptoms of malnutrition complete with the distended stomach.

I under-went some pretty novel test procedures including the horrendous sweat test. At age 7 I was put on the gluten-free diet and things began to improve. I was not a ‘strong child’ but started to gain weight and my school work improved.

In 1968, at age 14, Dr Dynski-Klein had retired and under a new Consultant was given a biopsy the results of which declared me ‘free’ of Coeliac. There was never any explanation as what preceded this and I am only too aware that I need to be careful with my gluten intake.

Subsequently, in her early 50’s, my mother went through some dietary problems and testing but the doctors ignored the obvious until I suggested that the symptoms reminded me of my experience and mother adopted a gluten-free diet with almost immediate improvement. Mum went on to contract a high-degree of sensitivity to gluten but lived to 89 years of age.

When my wife and I had children we were concerned about the prospect of Coeliac and spoke with our GP. Both the children and I had blood tests and were declared free of the disease.

The Celiac.com website has proved a complete revelation to me.

It explained the milk-free diet, the dietary response, the biopsy and its results and threw some light on the whole historical context. More importantly, it has explained why I have been diagnosed as ‘free’ from Coeliac when in fact it’s more likely that I do have the disease in a very mild form with some of the more vague symptoms like the need to monitor my gluten intake, occasional word-dropping, and concentration deficit. Your recent articles on blood testing suggest that this is a not the definitive test suggested by my GP in the mid-1990s.

I would like to take this opportunity to reassure newly diagnosed Coeliacs that life does go on. There is relatively good awareness of the disorder now and that there are numerous commercially available products and pre-packed meals that meet your dietary needs. In my formative years we had to get some awful gluten-free bread ordered from the CoOp bakery and when we went on family holidays, mum arranged to have the bread posted to us! When I married the love of my life, Susan, she embraced the whole gluten-free ethos and early in our married life in complete ignorance of the difficulties suggested but adhering to a gluten-free regime produced a perfect gluten-free Victoria sponge for a visit from my mother. This produced tears of joy that somebody had cared enough to produce a real cake that she could enjoy without any of the side-effects!

I would be delighted to hear of other sufferers' experiences and any advice relating to my history.
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#2 jlaw

 
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Posted 16 December 2012 - 06:44 AM

Nothing ground breaking to add, but it is lovely to hear a voice of optimism and hope. And a beautiful marriage by the sounds of it! Thanks for sharing your story :-)
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DH dx by skin biopsy July 2012

#3 Celiac Mindwarp

 
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Posted 16 December 2012 - 08:22 AM

Hello there

I am in the UK too. Thank you for sharing your story. I, like you have found this site a revelation, as knowledge seems patchy here. My observation is that 'classic' cases are dealt with better than more complex ones.


I strongly suspect that my mother in her 60s and grandmother in her 90s have the condition. I am working of persuading them to be tested.

Your wife sounds marvelous. My husband has perfected a gluten-free victoria sponge, and it is often requested by gluten eating friends!

I assume you have spotted that the blood tests require that you eat gluten, and as you know that you are better gluten-free there seems no need to put yourself through that.

I am sure that if you have any remaining health issues you think might be related people here would be happy to help.

Best wishes
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#4 ButterflyChaser

 
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Posted 16 December 2012 - 11:08 AM

What a beautiful story!

I am glad to see there are other people who change their lifestyles for the sake of a loved one, it makes me feel less of a nutcase :P (I learnt to cook gluten-free and DF years ago when I was dating someone who had celiac, and would have everything separate when I was cooking/serving him stuff)
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Hashimoto's thyroiditis and Grave's disease (2011). It must have been a Black Friday.
Intestinal dysbiosis. Suspected damage to my vili (2012). NCGS according to my dermatologist upon seeing my post-wheat rash.

Gluten-free. Sept 2012.
Canola, almonds, soy = evil.

Grain-free, legume-free. December 2012.
No peanuts and tree nuts. February 2013.
Erb-Duchenne palsy from birth trauma.

My body is trying to kill me.


#5 1desperateladysaved

 
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Posted 16 December 2012 - 01:04 PM

Thanks for sharing. I was so glad when your mother went gluten free so willingly. That was the highlight of your story for me
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