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Refractory Coeliac Disease

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Posted 13 March 2005 - 07:58 AM

Didn't read every word but is your husband taking a probiotic? If not, it might help and certainly won't hurt.

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Rikki Tikki


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Posted 13 March 2005 - 08:40 AM

Hi Nikki:

If it's any help several years ago I had a brain tumor removed. Before the surgery they found lesions on my brain and thought I had MS based on that and other symptoms. I have read either here that many people with celiac also have lesions on their brains. Food for thought.
I agree with everyone, it seems the longer it takes for the diagnosis of celiac the harder it is for the body to recover. I went with at least 15 years of symptoms before the doctor checked. That after being told about 10 years ago that my bloodwork showed a disease called celiac but it was so rare he was sure I didn't have it. I believed him and suffered several more years thinking I had IBS and was somehow doing it to myself.
As far as the steriods, I took them for something else recently and found a very pleasant side effect. My stomach stopped churning and I had an appetite like I had not had in many years. I don't think I was on them long enough for any side effects, 14 days, but what a difference.
I have to have a repeat colonscopy in 1 1/2 weeks and find myself more scared than the first time. He wants to do it again because he had removed several pre-cancerous lesions 3 years ago. Does anybody have any suggstions that can help psyc me up for it. I am so ready to cancel it but I know that would be a foolish thing to do. Please help
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac
offering support, my
experience and advice



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Posted 13 March 2005 - 09:58 AM

Hi Nikki,

I am glad to hear that you are going to try to limit lactose, that's a good first step. I don't usually have a problem with butter and as someone else said try to stick with hard cheese even if you have to melt it down for him, because it contains the least amount of lactose. He is so lucky to have a wife like you. I also have a wonderful husband who cooks for me and reads labels and call companies. I hope things go better for you, i'll keep both of you in my prayers.
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller

Judy- Gluten Intolerant



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Posted 13 March 2005 - 01:56 PM

Thanks all for your posts.
In answer to your questions regarding his neurological state,he is on a waiting list to see a neurologist-however there is only one neurologist at my hospital(it's ridiculous)-so he can expect a year wait.
I know MRI's have been mentioned to pick up lesions(hate to think of the waiting list for that!)but my husband did have aCT scan of the brain 9months ago when he was admitted to hosp for severe weight loss.
The CT was clear(he was suffering terrible headaches),but it's since then that the symptoms have really kicked in. (ataxia,gait)
He was also tested for TB(chest pains),had a lumber puncture,thyroid screen,diabetes test,CT of stomach,many x-rays,HIV screen(scary time waiting for that result!)all negative!!
It would seem that neurolgical symptoms are not as rare as I was first led to believe.The only thing that puzzles me is why his neuro symptoms have got worse since going gluten-free-maybe the lack of vitamins being absorbed if it is refractory celiac disease?
Thought he should try to eliminate lactose just to rule out intolerances hindering his progress.Cannot afford to get york tests done for him-obviously he is not working and with 3 kids it's out the question.
Deb,inanswer to your question'how does he cope with family get togethers'--He doesn't!He really only summons the strength to go out for docs appts(what fun!)& that just wipes him out.
I generally have to help him get dressed as he is so very weak.He cannot get jumpers on ,socks and shoes etc,so it takes about an hour,& then he's exhausted before we go.He doesn't drive any more.
I'm sorry to hear you're in a similar situation,but you just have to play the hand that's dealt you,don't you?Good to know that there are others understanding my position.
Thanks all for your posts,good luck!
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It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill


Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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