Could there be a connection with Celiac?

[Mimi_jones]

I first went to my doctor 10 years ago because I would get pain just above my pubic bone that radiated to/from my back and, sometimes, down my thighs. It would last anywhere from hours to weeks and was bad enough to make me just sit there and cry, nothing makes it stop hurting. I had a hysterectomy for endometriosis and heavy bleeding 11 years ago.

15 months ago I was diagnosed with Celiac Disease (biopsy confirmed) and I have been gluten free since and my dr. figured that was my problem all along. BUT my pain has not gone away. It comes periodically and stays for awhile, then goes away again. I have tracked my food (Celiac diet is quite strict) and there doesn't appear to be any specific trigger food as I always eat the same stuff week in week out.

My doctor just prescribed Bentytol yesterday because this last flare has been 4 weeks now and I can't stand it anymore. The pain is gone today - but I also started taking aloe vera juice, more calcium, glucosamine and quercitin at the same time.

I've been reading about IC, PFD and IBS... I have no burning and not really any urgency - I pee a lot but can hold it if I have to, or if I'm lazy. My only symptom is this aching pain, like low menstrual cramps that move into my back (both my back and pelvis ALWAYS ache together) and pain on initial vaginal penetration (which is always present even if my pelvis isn't hurting).

Has ANYONE heard of anything like this? Any information? Any treatments? Anyone read anything that links Celiac with pelvic pain? Could it be that I'm getting gluten somewhere, is it a pelvic floor muscles issues, adhesions, bladder, all of the above, any of the above???? I'm in Canada so I can't go get a new doctor or a better doctor... I have had the colonoscopy, gastroscopy and whatever it is when they blow up and look at your bladder for disease. All my results, other than Celiac, were normal.

I just need to know where/how to look next for anything that will stop this pain, other than chemical medications. If it's diet, or massage or whatever, I'll try it... I just need to figure out what to try! Anyone have any suggestions, however crazy they might sound?

[ICNDonna]

First of all, I'd like to welcome you to the IC Network.

We do have some people who post regularly and have celiac, but I have no idea whether celiac is more common in people with IC --- I haven't heard of any studies that would either rule this out or confirm it.

I do have a suggestion, and that is to stop the over-the-counter stuff you started along with your new prescription. It's not usually a good idea to start more than one medication at a time unless it's with a doctor's order. Then you will know if it's the new prescription that's helping. You can always add back the alternative meds, one at a time, after you know. If you add them back one at a time, you should be able to find out which is helping.

Donna

[kadi]

Checking into pelvic floor physical therapy might be an idea, especially since you've had pelvic pain off & on. Once we've had pain, we start "guarding" the area with muscle tension, which then leads to more pain.

Donna has a good point about the supplements. It's really best to add only one thing at a time, especially when some of the things you mentioned as supplements are ok for some IC patients & not all. Aloe vera juice can be hard on an IC bladder. You might look into Desert Harvest aloe vera capsules, which is a brand many IC patients have tried. We're all really individual & some things that other patients mention as helpful can be problematic for others.

I don't know much about celiac, but I do have an acquaintance whose son has it. He started getting rashes, even though they had stripped his diet of gluten. Turned out his shampoo had gluten in it & when they changed that, he was okay again. I guess it just shows that gluten is in lots of places & best to check them all. Be sure to check your supplements if you decide to keep them & make sure none of them contain gluten as an additive.

There is an IC diet, you might just check it & see if there are foods that might be triggers. If you're eating enough of them, they can cause continuous irritation, til you've cleared your system of them for several weeks. http://www.ic-network.com/handbook/diet.html
Be especially careful of preservatives hidden in foods, like citric or sorbic acid.

Hang in there, I hope you find some answers soon.

[Kara29]

I have Celiac Disease.

I was diagnosed with IC in 1999. I didn't develop symptoms of Celiac until last year in May, 2007 at age 30. My Mom was diagnosed with Celiac two years before me at age 54.

It's possible to have Celiac and IC.

Many poeple have other conditions that canaccompany IC.

Kara

[Ginny]

I also have celiac and have had it for 20 years. I have been diagnosed with IC for 24 years. I believe I was born with celiac since I had symptoms from the time I was born. I was diagnosed at age 32. I believe that all those years of not being diagnosed could have contributed to the problems with the pelvic floor. This is just my thoughts on it and I have never found anything in writing to prove that.

I have been gluten free free for the last 20 years and I know the diet did not make a difference in my IC.

After reading your post I wonder if the doctors ever thought of pelvic floor disfunction or vulvodynia. These two are very closely related to IC and can be confused by the other.

The first year or two of celiac is very difficult. You can be extremely strict and gluten can get into the diet. When I was first diagnosed it would take me weeks to figure out what it might have been that gave me symptoms of celiac.

If you would like to talk to me more about both illnesses send me a private message.

Ginny

[Mimi_jones]

Thanks

Thanks to everyone who replied... or PMd me... last week was a very tough one; after several weeks the pain just gets you so down you wanna... I dunno... scream.

Fortunately, this Bentylol did relieve my 4 week long flare, and I have removed all the big IC triggers from my diet (chicken and rice anyone?)... And, while I'm very strict with my Celiac diet, I also stopped eating anything that isn't specifically labelled gluten free. I just want to be pain free.

I am going to see a urologist (again) and will request a laparoscopy so they can either confirm or deny that I have adhesions and/or endometriosis. Wish me luck convincing the doctor to do anything... Canada's medical care might be free but it's quite the challenge to get it. To get my referral to the urologist I had to have a long cry in my family doctor's office first...

[Mimi_jones]

My bladder pain has been around for probably 10 years and I was only diagnosed with Celiac 18 months ago. My doctor was very pleased because he thought that he had found the source of my pain: Celiac. So for the last 18 months he's been saying that once my bowel healed from the Celiac my pain would go away. But not so. Pain is identical in every way 'cept now I can't eat any grains either.

[emilyjean]

My Dr. Said the same thing....

My bladder pain has been around for probably 10 years and I was only diagnosed with Celiac 18 months ago. My doctor was very pleased because he thought that he had found the source of my pain: Celiac. So for the last 18 months he's been saying that once my bowel healed from the Celiac my pain would go away. But not so. Pain is identical in every way 'cept now I can't eat any grains either.

Mimi,

I have Celiac too, and my Dr. told me the same thing. I was eating a strict gluten free diet for a year and my pelvic pain was actually getting worse. Now I'm doing a lot better! Here's what I'm doing that's working (maybe it will help you too?)I really feel your pain, literally. So I would love to help! Strict IC diet (which I know you're already doing, celiac and IC diets suck don't they?) Stemming (Dr. does electrical stimulation to work/relax the pelvic floor muscles) Apparently muscles and nerves have memory so even if you're no longer in pain they can keep spasming or telling you you're in pain. Heat packs for the pelvic floor muscles help and ice packs for the bladder.

I had a Laproscopy too cause my Dr. thought it might be endo and every thing came out fine but my hormones were out of wack so they put me on hormones and that has helped a lot with the pain.

Good luck! I hope you find something that helps! I had to go on a short course of prednisone (steriods) to get me out of the flare but I hate to take strong medications!