Kiahrea

[Ally2005]

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

[KaitiUSA]

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

[minibabe]

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?

[nikki-uk]

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!

[Ally2005]

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

[Lesliean]

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

[Ally2005]

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.

[Lesliean]

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

[junevarn]

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

Take care,

June

[Ally2005]

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

[nikki-uk]

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.

[Ally2005]

Thanks for the support and info. How long does he take the seroids for?

[nikki-uk]

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!

[Ally2005]

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

[nikki-uk]

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)

[Ally2005]

It sounds like he was very ill. As I mentioned I also had stage three. I was working, running 50K (about 35 miles per week) and taking a night class. The only reason I went to the doctor was to ask if I could take immodium on a regualr basis to control the D I was having. I must admit that for six months prior to diagnosis I was feeling more mentally and phsycially fatigued but not to the point I couldn't do what I had been doing. It's so odd that two people can have the same disease and to the same extent and have symptoms soooo different. What neurological symptoms does he have? What did "ill" look like for your husband?

[nikki-uk]

Hi Ally,

to describe my husbands neurological symptoms,they are;

Numbness,pain,tingling,burning pain in feet and legs.

Soles of feet hurt to stand on

Extreme difficultly getting to standing from chair(although he wants to get up nothing happens,takes about 5 mins)

Spatial awareness problems(bumping into things-like he's drunk!

Terrible headaches

Dizzy spells and balance problems

'freezing up' as day goes on-(he says it feels like he slowly being paralysed.

Shuffling gait(can't pick feet up)

Needs to sleep at least 16-18hrs a night

Constant 'brain fog'

To describe how he looks on a bad day,

I suppose like an emaciated little old man(he's only 40)as he can't seem to stand up straight,and shuffles.

Or a terminally ill cancer patient-people have asked me if he has cancer.

Not a good look,-still ,hoping the steriods will help with him gain some weight.

The battle against celiac disease is not over yet,but he's heading in the right direction.

[Ally2005]

That totally sucks!! You both must be very frustrated by now. Thank goodness he is starting to improve a bit. Will these neuro symptoms improve once the celiac disease is under control.? How do YOU cope with all this?

Ally

[nikki-uk]

Thanks Ally.

I can't tell you how frustrating it's been!.You just have to get on with it though.Whilst on steriods all of my hubbie's symptoms have quietened down,but I don't know if the neuro symptoms will return.Suppose we'll have to wait until we've seen the neurologist.

-Will keep you all posted on his progress-cases like his seem so rare.

Hope things improve for you soon!