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Kiahrea


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18 replies to this topic

#1 Ally2005

 
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Posted 20 April 2005 - 02:56 PM

Hi, thought I would share this with those of you who have diahrea. I have been gluten-free for two months now and still have diahrea, sometimes 8 times a day. I have made very little progress in the last few months in terms of this symptom. Here's what the GI said today:

Having D does not mean you have been contamininated nor does it mean you are not healing nor does it impair healing. He said that when you have severe damageand eat fat, you overload your system and it "floods" (D). Interestinly, the times that I noticed improvemtns in my bowel habits have been the times I was adhering to a whole foods diet. I lost weight eating this way and on the advice of my dietitian, i increased the fat in my diet. The D came back in full force! I know from reading other posts that many of you have also been concerned about chronic D. I'll give you the same advice he gave me..if at the 4 1/2 month point your D is still frequent, contact your GI and they will start to investigate. In his opinion, D means that you are not yet internally healed and by 3/4 months symptoms should be improving. So don't worry, D does notnecessarily mean gluten. And yes, Imodium is fine to take. I spoke to someone a week ago and thaey had stage 4 damage, her diahrea didn't stop for six months.

I would appreciate any of your perspectives.

Also, he said that antibodies don't decline until the three month point and then it takes a while for your immune system to readjust itself.

Ally
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#2 KaitiUSA

 
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Posted 20 April 2005 - 03:31 PM

The first question I have is have you been completely gluten free? Have you checked lipsticks, lotions, shampoos? Anything that has a possibility of getting into your mouth needs to be checked. Have you got a new toaster? Cleaned utensils and pans you cook with?Wash your hands after handling anything containing gluten?

It is true it does take time to heal. I started seeing a difference after 3 months and got back to normal a few months after that.

antibodies decline when you get off of gluten...thats why you have to be on gluten when you test for celiac
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#3 minibabe

 
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Posted 20 April 2005 - 07:04 PM

I spoke to someone a week ago and thaey had stage 4 damage, her diahrea didn't stop for six months.

Not sure what you mean by this, you can have certain stages. How do we find out what stage we have?
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#4 nikki-uk

 
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Posted 21 April 2005 - 12:31 AM

If you have had a biopsy done,and it shows 'villous atrophy', the labs categorise what level of damage,stages 1-4 I think.
Doctors however do not usually tell us 'mere mortals' what stage it's at.
My husband was told he had 'partial villous atrophy',but I have no idea what 'stage' the damage was.Maybe at the next appiontment we will ask!
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Nikki



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

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#5 Ally2005

 
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Posted 21 April 2005 - 04:09 AM

Yes, there are four stages. Stage three is partial to sub-total damage. Stage four is complete /total damage.
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#6 Lesliean

 
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Posted 21 April 2005 - 08:34 AM

Please tell me whether or not you are eating dairy? The villi damage you refer to would have damaged the villi ends of the small intestines that are used to metabolize dairy and the main symptom of dairy intolerance is diarrhea (bloating, pain..). You might want to go off dairy for a while too, but, make sure you take a good calcium supplement like Citracil which can be taken on an empty stomach. Only 500mg can be utilized at a time so space them out throughout the day and take the recommended amount (I take 1500 to 2000 to catch up my skeleton which is low from years of intestinal damage).

Leslie
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#7 Ally2005

 
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Posted 21 April 2005 - 05:47 PM

I was tested for lactose intolerence around the same time as my biopsy and it came back fine. May I ask your age and the number of years you went undiagnosed. I am going for a bone scan in 6 weeks and I am worried I have osteoporosis.
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#8 Lesliean

 
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Posted 22 April 2005 - 08:59 AM

Hi Ally- Osteopenia and osteoporosis is present in 50-100% of Celiacs but I couldn't find the medical article right now. It is at brain.hastypastry. but they are down for a day or two more. Another article said 25% of those with lactose intolerance will have Celiac and the another that weeks after going gluten-free the lactose intolerance will go away in 25% of those Celiacs with lactose intolerance. I also read that it is being considered to recommend a Celiac blood panel screen to all patients who test osteopenia or osteoporosis. I don't remember the % that test positive from that study but think it was around 20%.

I am 48 and was tested at my own request years after a doctor commented that from looking at my chest x-ray she could tell that I had fractured my back. That had happened teaching skiing when I was 45 and it wasn't a really hard fall. I personally think all women should have a bone density x-ray at perimenapause as they lose 20% bone mass in the first 5 years after menapause. Since going gluten-free and taking calcium supplements my back and neck pain have gone away and I feel stronger.

If you have a low bone density from Celiac disease it will improve dramatically no matter what age you are. Just make sure you are taking enough calcium. There is something about Celiac caused low bone density that makes the bone take up calcium as soon as the intestines begin to heal. But you weren't lactose intolerant and the odds are in your favor that your bones are just fine! Let us know how you are doing and I'll add those web links next time.
Leslie
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#9 junevarn

 
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Posted 24 April 2005 - 05:18 PM

If you are continuing to have diarrhea you might want to investigate whether or not you have an infection or parasites. :blink: My Doc has tested me for this and I find out the results tommorrow.

Take care,
June
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#10 Ally2005

 
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Posted 24 April 2005 - 06:16 PM

I was tested for infection and parasites at diagnosis as well. I'm not sure what the problem is! Today is a bad day...I'm imagining all kinds of things - refractatory celiac disease, cancer. I read earlier today that GI symptoms should settle in TWO WEEKS. As soon as I read stuff like that I feel soooo depressed and anxiuos.

Ally
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#11 nikki-uk

 
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Posted 25 April 2005 - 02:52 AM

Some of the lucky guys start to feel better after 2 weeks gluten-free-but for alot it takes a longer.
I do sympathise with you as my husband has had a similar problem.
After finding out what was making him feel so bad,we all imagined that he would start to feel better after a couple weeks gluten-free.
We suspect that my husband has had celiac disease undiagnosed since childhood(he's 40 yrs now)-so to be fair there's alot of damage to undo.
My husband has had continual diarrhea-having cut out gluten & dairy,and has found it impossible to put on weight.
A secondary biopsy done after 6 months gluten-free showed a very slight improvement to his villi.I was convinced it was cancer as he was still so ill-so was suprised (& relieved)when it showed some improvement.
However,docs decided he needed help to speed up the recovery so is currently on steriods.(Prednisone-down to 15mg a day)
It has done wonders for his appetite and can eat anything(excluding gluten of course)without any problems.Diarrhea and pain have stopped too.
My husband also takes calcium supplements, folic acid,and multivitamins.He hasn't had a dexa bone scan yet.
Anyhow,what I wanted to say is,I too was imagining the worse case scenario-when there could be other things slowing your progress.
I hope you feel better soon,& get some answers.
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It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki



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

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#12 Ally2005

 
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Posted 25 April 2005 - 07:14 AM

Thanks for the support and info. How long does he take the seroids for?
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#13 nikki-uk

 
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Posted 25 April 2005 - 07:39 AM

My hubbie is 2weeks into a months course of steriods.He see's his gastro doc after a month,by which time he will be down to 10mg.
I suppose the docs will assess how much weight he's put on,as to whether he can come off them.
Just to see him want to eat is fantastic,(I think after years of pain he unconsciously avoided food).Trying to cram as much in as possible!
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

Nikki



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

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#14 Ally2005

 
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Posted 25 April 2005 - 07:43 AM

Do you know how much damage he had at the time of diagnosis (stage 1-4)?
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#15 nikki-uk

 
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Posted 25 April 2005 - 08:02 AM

Stage three I believe(partial villous atrophy).
If you could have seen how ill he was,you'd be suprised he had any villi left!
He also unfortunately has neurolgical symptoms,(waiting to see neurologist)
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It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki



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

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