IC & celiac

[cnemcik]

Sorry this is so long, and it starts off seemingly unrelated though I really think that it is all connected. I've had a bunch of on and off health problems ever since the birth of my son in 2004, which was by emergency c-section with 3 extra hours of surgery to remove grapefruit sized cysts from my ovaries. Since that time I've had problems with vulvular and pelvice pain every month with PMS. I was diagnosed with GERD in 2005, and had my gallbladder out in 2006 after hyda-scan showed function at 4.2 (removal showed chronic inflamation of the organ). I have multiple allergies to just about everything in the environment, and I have asthma (allergic to all inhaled steroids).

In October of 2008 I was put on first a very strong dose of Augmentin and then Z-pack for a chronic sinus infection. After that my system went haywire. I had horrible yeast problems (vaginal & oral), and basically my digestive system shut down -- colitis (though not c-diff...tested multiple times), chronic diarrhea for about a year, malabsorption, etc. After multiple ER visits, losing over 20 pounds due to malabsorption (I'm quite small so 20lb is a lot), and lots of testing it was confirmed by endoscopy in February 2009 that I have celiac disease. I'm sure that having an undiagnosed auto-immune disorder until I was 41 contributed to a lot of my other health problems over the years.

I was doing great on the gluten free diet and lots of probiotics & olive leaf extract for the yeast (I'm also allergic to Diflucan) until I got what seemed to be a UTI in October 2009, right after finishing a round of Amoxicillin for sinus problems. I had such horrible (seemingly kidney) pain in that I ended up in the ER. Urinalysis was negative but they prescribed Bactrim anyway, another medication to give me a horrible allergic reaction (mild Steven Johnson syndrome after just 2 doses). Went in to my GP and she tested my urine again...negative again, but still having symptoms. Sent it out to be cultured and nothing. After another week of symptoms (though lessening) she suggested that it could perhaps be IC and said we could consider a urologist if I wanted. Since the symptoms seemed to be lessening (started taking fish oil and followed modified IC diet) I decided to wait and see. Things got better -- I went back to eating and drinking anything (gluten-free) that I wanted and feeling great.

This past December-January ('10-'11) I had to go to get some retreatments done on failed root canals. 10 days of Amoxicillin. Followed by a confirmed UTI 2 days after finishing the Amox (I attribute to a honeymoon-like weekend away with my husband) treated by 10 days of Keflex. More Amox for the next retrement of root canal...that didn't work so back on Keflex for another 10 days. All that finished at the end of January. Now starting a week ago I'm back to the UTI symptoms with no bacteria showing by urinanalysis or culture. (Tested more than once).

So my GP has unofficially dx'd me with IC. I'm leary of going to a urologist because I have problems with so many meds causing very serious side effects or allergic reactions (Steven Johnson Syndrome, dystonia, severe asthma, closing of esophagus). I also get freaked by the stories of people who have had significantly worsening IC symptoms from the testing. Insterestingly enough the natural and herbal remedies I've tried for different things so far have not caused reactions...not sure why that is. My symptoms right now are: bladder spasms/pain (seemingly mild from many stories I've read here), increased frequency, and burning in the urethra mainly after urniation. And I'm paranoid of being intimate with my husband for fear of making this all worse.

Meds and what I'm doing at this point:
*Zegerid for GERD (have gotten myself down from taking 2x/day to just 1 tablet 3x/week)
*Singulair for asthma
*Zyrtec and Nasonex for allergies (Astelin too during worst seasons)
*probiotics & olive leaf extract for yeast control
*digestive enzymes (help with GERD and with nutrient absorbtion)
*strict gluten free diet and now strict IC diet
*just started fish oil gelcaps (staring with 1/day to see how I do since reactions can change over time)
*drinking marshmallow tea when burning is worst
*Ranitidine 150mg a couple of times at night for acid, though seems to help bladder?
*heating bad over bladder
*things I'm considering trying: quercetin, MSM, glucosamine hydrocloride, other teas -- but will only add one thing at a time and have to wait 5-7 days inbetween because of all my allergy problems

Since I have also gone back to similar diarrhea problems that I had in 2008/2009 after those rounds of antibiotics I really think that antibiotics (more than the infections) have something to do with all this. But I also think that maybe the celiac disease (though on a gluten free diet since Feb2009) may have something to do with the seemingly IC problems as well. Anyone else out there have celiac also?

Thanks for letting me tell my story!!
Christine

[ICNDonna]

There are some people with IC who also have celiac, but not a lot of us. I wouldn't hesitate to see a urologist because of allergy fears. If you take a list of your allergies with you, you should be safe. I have some medication allergies and they always avoid giving me problem meds.

Donna

[Zygala87]

I had some symtoms that you have. Mine turned out to be Diverticulitis. I had a fever and sick stomach as well. Only a Doctor can help you. Most Doctors well not give you anything that you know you are allergic to. I keep a list of my meds plus what I know I'm allergic to in my wallet. I'm thinking you feel they might offer you something unknown to you. Totally understandable. You really need a diagnosis soon. My gosh you are going through way too much. Sure hope you get help soon. Hugs, Ziggy

[klite]

It sounds like you are having a really hard time right now.

I have IBS that involves a definite gluten-sensitivity as well as being lactose intolerant. I also have a very irritable bladder. I follow an IC-safe, gluten-free, and lactose-free diet and I still suffer from frequent diarrhea as well when I eat too much fat at one time or I'm stressed in some way.

Have you been tested for lactose-intolerance? That was a big cause of stomach issues for me.

Also, when I was seeing a naturopathic doctor years ago, she put me on some digestive supplements as well . . . and they really irritated my IBS. The worst one was something that started with "gluta ..." I can't remember the name, but I do recall thinking that if I can't tolerate MSG (which has glutamate) than it makes sense that I can't have other similar glutamate compounds.

And of course antibiotics are well known to destroy your fragile gut-health by killing off friendly bacteria. I haven't had much luck myself with probiotics (I seem to get weird side effects), but I imagine that your intestinal flora are not at their best right now (which would cause the digestive problems).

I hope that you are able to find some relief soon.

[cnemcik]

Thanks for all the responses!

Thank you for your concern Ziggy...I've actually been checked for diverticulitis as well as other intestinal issues. I've had multiple abdominal CT scans and recently had another colonoscopy (all healthy and normal), so I know that's not the case. I didn't list all of the testing I went through with my GI doc, just what came out positive, which was the celiac test.

I'm really not fearful of a doctor giving me something I'm allergic to...I do trust medical doctors to know and pay attention to those things. My fear, though, is that I seem to be developing more and more sensitivities and/or allergies to medications and I don't like to be put on new things because of the severity of reactions I've had in the past couple of years. Steven Johnson Syndrome, neurologic dystonia, severe asthma attacks, and anaphalaxia are frightening.

klite (sorry, I don't know your name ), I haven't been checked for lactose intollerance but probably I should. I don't know why my GI never did that one. But I have eliminated all dairy in the past week since I went on the IC diet -- going a bit more extensive with it. I've also gone back to doing food combining, which I've done in the past and has helped me with some of my gastro issues. The digestive enzyme I take is one I've been on for over a year so I know it at least hasn't been a problem for me in the past. I believe it was that together with probiotics that got me back to normal finally with the chronic diarrhea I had '08-'09.

This may sound funny because of all my history I've given, but for the past year I was really healthy...until I had to have the root canal retreatments and was treated for the UTI. No digestive issues (in fact weaning myself off GERD meds), no diarrhea, no real illnesses, and I even ran a half-marathon last May. That's why this new stuff is so frustrating!

[lynng]

Hi Christine, I have many of your same issues, IC, celiac disease, cannot tolerate dairy, allergies, asthma, sensitivity and bad reactions to many medications. You may be either lactose intolerant or have an allergy to casein, the protein in dairy, about one third of celiacs do. Also, many celiacs have lactose intolerance when first diagnosed because the villi are damaged and are not producing lactase, the enzyme that aids lactose digestion. This takes a while to heal, a year or more. If you toss in the antibiotics and the havoc they wreak on intestinal flora, there will be problems.

I was bad the other night and had a taste of my husband's vanilla ice cream, probably no more than 2 tablespoons. I paid for it most of yesterday with bad diarrhea and today with a rash. (I am allergic.) Coconut milk ice cream is a good substitute, but I was out. It went to the top of my grocery list for the week.

[ginaaa22]

You should ask your GI dr about fructose intolerance too! I am fructose intolerant. I cant eat fruits, vegetables, high fructose corn syrup.. It is a simple test to find out.

[Snowden1]

H, I was taking many antibiotics after having infections following a hysterectomy. I could have written lynng's post. I have all the same allergies and issues. I was very healthy too, before having the hysterectomy and getting IC. Also, was running 2 miles a day. Now, I can barely move off the couch, it is frustrating to say the least. No one realizes how lucky they are if they just have "health."

[Merkaba]

I have celiac and although I haven't been diagnosed yet with IC I'm sure I have it because I have all the symptoms. Surprisingly I don't have any celiac symptoms but I have had extreme fatigue for the passed few years that seem to come after bowel movments. Your comment about having teeth work done made me think about mercury fillings. These filings can cause all sorts of problems for people because mercury is very poisonous. If you have filings there's a good chance they're murcury. Fortunatly they can be removed.

[Landish]

I was very healthy too, before having the hysterectomy and getting IC. Also, was running 2 miles a day. Now, I can barely move off the couch, it is frustrating to say the least. No one realizes how lucky they are if they just have "health."

Snowden I also miss my exercise. I was climbing mountains, doing aerobics, playing squash, swimming, riding bicycle and horses, and now I can't even walk a long distance without pain and this nasty feeling that I have to pee. I feel like I am trapped in this sick body that can't go anywhere. I miss so much that great feeling you get after a workout!

“It is health that is real wealth and not pieces of gold and silver.” Mahatma Gandhi.

[425runner]

I have gluten intolerance aka celiac disease and IC. Celiac is an autoimmune disorder, at least that's what my gastro said. One of the causes of IC is also autoimmune reaction, so strange...