A Tough Week

[Kari]

Hi friends,

Well, just as you think MC is somewhat under control, it gives you a good whack and reminds you who is in charge:). I got glutened at my only "safe" neighborhood restaurant a week and a half ago, and have been having D. ever since. The first night, I also had hip aches :(.

I think it's the first time since I went gluten free 14 months ago, that I knew with absolute certainty that I ingested gluten. It was a busy night, so the kitchen staff neglected to leave out the tiny tortilla chips from the black bean sauce, and I noticed it too late, since they were black like the beans. I would have thought that after so much time, and doing reasonably well, it would take much less time to recover??? I feel that I have been through the whole grieving process again, finally getting to the stage of "acceptance".

Anyhow, some puzzling issues emerged from this experience. Two days after it happened, I had a scary incident with my bladder. It reminded me of how it used to be with my BM's before going gluten free, when there were times I felt it was pointless to get off the toilet, as I'd be back in no time. That's kind of what happened with my bladder, I did not experience relief after urination, as the urge to go did not let up (I knew it was not a UTI, as it was not painful to urinate). My SO went on the internet to try and figure out what it could be, and came across "Interstitial Cystitis". This sounded exactly like what I was experiencing, so I guess I can now add another autoimmune issue to my "collection":).

I thought I'd better go in to see my PCP, but as time went by and I felt better, I decided against it, as I don't think there is anything she can do for me. According to the research I did, antihistamine is supposed to help, and taking it did offer some relief. Since I was in a flare from being "glutened", I had taken half an imodium. Then when I read up on possible side effects from imodium, it seemed that it could slow down bladder motility, along with the BM motility. This gave me pause, and I decided to stop the imodium, which, in turn, I believe contributed to the longevity of my flare.

Boy, MC really knows how to wear a person down!!! Sunday (after more than a week) I finally threw in the towel and took half an imodium again, and have been doing better yesterday and today. For me, the psychological impact of MC is at least as traumatic as the physical one, and I find that only when I stop "fighting against" what is happening and start to relax and accept it, do I feel better. Needless to say, I have reverted back to a "core" diet. To top off my miserable week, I went to see my acupuncturist and discovered that I have developed a strong sensitivity to coffee again - so being back in caffeine withdrawal certainly has not added much sunshine to my state of mind.

I'm very curious to know from you experienced MC'ers out there how long a typical "gluten flare" lasts for you? Also, have any of you experienced bladder issues when taking imodium?

Thanks for being here - it's amazing to have a place where venting is accepted and even encouraged!!!

Love,
Kari

[tex]

Hi Kari,

I'm sorry to hear that a simple oversight made by someone preparing a meal for you, had such a long-lasting effect. I'm sure that most people in the food service business don't realize just how much misery seemingly-innocent little slip-ups can cause. Anyway, that's the pits.

I'm not sure whether that bladder issue is actually interstitial cystitis or not, because IC is defined as a long-term (chronic) inflammation of the bladder wall, but it sure matches the symptoms, otherwise. I am sure, also, that I definitely had that problem, whenever I was reacting. I've posted about it several times, over the years, but no one else ever seemed to acknowledge having the problem, so I finally just wrote it off as a rare event, that I just happened to be lucky enough to experience.

When it was really bad, I couldn't take a chance on utilizing one of the usual privileges of being a male - that is, I couldn't take a chance on urinating while standing, because trying to do so was too risky. IOW, it was almost impossible to release urine, without triggering watery D, as well. It was almost as if one valve controlled everything. My bladder seemed to have no capacity at all, because as you say, it always seemed full. I wrote it off to lack of room in my abdominal cavity, due to all the bloating, but apparently, the bladder was inflamed as well, which probably played a big part in the experience. I always had alternating D and C, and as soon as the D phase ran it's course, (usually about a week, more or less), the bladder problem would disappear, and it wouldn't show up again until I was back in the D phase. As far as I can tell, it's definitely associated with the inflammatory reaction that causes the MC symptoms. because it showed up right on schedule, every time the D showed up.

I don't have much experience with being glutened, since I rarely eat out, these days. When I did the oat challenge, the D lasted for about 6 weeks, but I attributed that to the fact that I had eaten oats for about 6 weeks, before the D started. Also, it wasn't as bad, as time went on - the first few days were the worst. Other than that, I have been glutened by trace amounts a couple of times, over the years, and each time, it cleaned me out, a few hours after the meal, but within half a day, the problem was gone. When these events happened, though, I had been in remission for at least 4 or 5 years, and the amount of gluten was small. One time, for example, I think it was a small piece of pasta, (about half an inch square), that accidentally fell into a bowl of chili. IMO, the amount of gluten, and the length of time in remission, make a big difference. For the first year or so, we are much more sensitive than we will be after our gut has had a chance to do some serious healing.

I note that coffee is one of the problem foods often associated with interstitial cystitis, but since I was never a coffee drinker, I never had a chance to check that out, personally.

They must have glutened you pretty good, (or pretty bad, depending on how you look at it), to cause such a powerful effect. I hope your symptoms disappear soon.

Love,
Tex

[sarkin]

Oh, Kari, I'm so sorry. I hope you can get this behind you asap.

My last 'glutened' experience was only miserable for the first few days, and the D tapered off, leaving mostly fatigue and achiness and fog for the rest of that week. As Tex said, they must have glutened you pretty hard. I think my mast cell issues have their own independent ups and downs, and suspect that when they are on the rise, it would take less gluten to lay me low for a longer time. I don't totally understand why those issues seem to be calm now... but I am glad the antihistamine helped you, and that's good to know.

I hope the bladder symptoms turn out to be a one-time thing, and that they stop as you recover.

I know what you mean, that the psychological suffering is as bad as the physical. Feeling helpless, wondering when you'll turn the corner and whether it will last, is just rough.

I don't know whether a little white or green tea would cut the caffeine withdrawal (or whether you could tolerate it), but I wish I could brew you a pot right now.

Sending you healing thoughts...

Love,
Sara

[Sharaine]

Dear Kari,

It's sure sad and frustrating when we get glutened, isn't it?!! Last week I ate two spinach and onion patties, noting they had oat bran in them. Since I'd been doing so well lately (or wanted to believe I was), I decided to try the patties. Oh, they were delicious! That was on Wednesday; Thursday I had a headache and some D. Friday morning I awoke miserable with a massive headache, D, and vomiting/nausea. I was worried it was related to my RCVS so my husband called my neurologist. The doctor ended up giving me Tramadol for the pain and another medicine for the nausea. I slept almost all day Friday into Saturday. Then I started feeling better. Sunday I was more tired, but by yesterday I was bouncy again.

Interestingly, I was to quit my Entocort on September 13, but had been weaning down to 2/day (6mg) and planned to do so through October because of my traveling for work. When I was so sick on Friday, I missed my Entocort. I could not safely take it and keep it in. So, I decided on Sunday that I'd just stay off Entocort and see how I do. Yesterday I had some D, but today so far, nothing, not Norman or D.

I can tell you that my reactions to gluten, avenin, and dairy are definitely stronger since I went GF/DF/OF. It's actually kind of scary.

I do hope you are feeling better, Kari.

Hugs, Sharaine

[Gabes-Apg]

Kari
sorry to hear that you had such an intense reaction to gluten.

before my recent scopes i decided to do a gluten reaction test (as it was bread it was a gluten and yeast test) the D and impact on BM's was not too bad. The joint aches, heavy feeling in the body and foggy brain lasted almost a week, it was enough of a reminder as to why i avoid gluten.

I too had bladder issues when i was having lots of BM's/D. i have had slight bladder incontence since my 20's (laughing/coughing etc) so with the years of MC symptoms my pelvic floor has lost its strength.

the new GI I am seeing, has a treatment chair for pelvic floor, it uses magnetic pulse to tighten the pelvic floor muscles. I was doing the treatements twice a week until the Tooth issue, and plan on restarting next week.
the treatment takes about 25 minutes. If the specialist is in rooms on the day I attend the treatment is billed to medicare (ie no cost to me) if she is not there, it costs $15.

when i was doing the cleanse out for the scope i did notice that my pelvic floor had improved (i had been doing the treatments for 3 weeks)

[nancyl]

Kari,
So sorry about your flare. I can understand how depressing that can be when you were doing so good.
I take something called Diarrhea Stop by Renew Life which I get at a health food store or you can get it on line. Personally, I like it better than imodium. It cantains the following: apple pectin, koalin clay, and activated charcoal.

http://www.renewlife.com/diarrhea-stop.html

I sure hope you start feeling better soon.

Hugs,
Nancy

[Kari]

Tex - you've made my day by telling me you've had the same bladder experience!!! You've also managed to calm me down about Interstitial Cystitis - perhaps it was a unique experience, which will only show up again (or not) in another flare - one can only hope. Don't know why I never noticed you talking about this problem in your posts - perhaps it's because I couldn't relate at the time I read it. Anyhow, thank you for your reassurance.

Sara - I don't seem to do well with any teas, so my only drink lately has been water. Believe it or not, I had hot water instead of tea at a party a couple of nights ago, and it actually felt very soothing. Unfortunately, I'm sensitive to both caffeine and coffee - it is now about a week since I dropped it, so thankfully the withdrawal symptoms are easing. My thought today is to add fresh ginger (juiced) to hot water and see how that goes. Thanks for your kind and thoughtful post.

Sharaine - sorry you've had such an unpleasant and tough experience. At this point in time, I would never risk knowingly ingesting gluten - it's simply poison to my system, and probably always will be. It amazes me that people who have been gluten free and in remission for many years, still react strongly if exposed to it. Lots of luck to you with your entocort tapering and thank you very much for your well wishes.

Nancy - thank you for your recommendation - I will definitely look into that product, as I would love to find a replacement for imodium. I used to do OK with Pepto, but at some point along the way, it started giving me trouble.

Love,
Kari

[Kari]

Hi Gabes - I'm not sure why I missed seeing your post until after I responded - perhaps it's the brain fog :). Sorry to hear you've also got bladder problems, but it sure helps to know I'm not alone. That sounds like an interesting treatment for the pelvic floor - perhaps more effective than doing the recommended exercises I've read about. Will most definitely keep it in mind should this become a persistent issue for me.

Thanks for your note - I feel so much better already now that I finally got my fiasco of a week off my chest :).

Love,
Kari

[Gabes-Apg]

Kari
when i was researching which of the 2 GI's available in this area, i chose this one due to the availability of treatment for the pelvic floor

this is another situation where the move to the T-bar has given me the chance to access affordable treatment options, i had some friends interested in the same treatment and we could not find one in Brisbane (the capital city 2 hours away where i used to live)

i think this is one of the only doctors in this state offering this treatment



The Neotonus chair

How does it work?
The Neotonus chair delivers a magnetic pulse to the perineal area (the area around the back passage).
This pulsed magnetic field stimulates electrical activity in the pelvic nerves, which in turn cause a rhythmic contraction of the pelvic floor muscles.
Low frequency stimulation activates the sling muscles which hold the bladder and bowel from falling down into the
pelvic outlet.
High frequency stimulation contracts the squeeze muscles around the bladder and bowel outlets.
Recent studies have also shown it to be useful pre and post operatively for men undergoing radical prostatectomy for prostate cancer
What is involved in the therapy?
Each session on the chair lasts 20 minutes
in duration and it is recommended that you
have 16-20 sessions in total. The sessions
are usually scheduled twice weekly and should be at least 36 hours apart. The low
frequency pulsing starts for 10 mins then there is a 3 min rest period followed by a 10 min high frequency pulsing.
The candidate adjusts the power setting to individual comfort. 8 sessions may be required before any change is noted.

Who will benefit most from this therapy?
The best results in trials have been in treating stress urinary incontinence (leakage of urine when you cough, sneeze or
exercise).
Definite benefits have also been shown in urge urinary incontinence (when you feel the urge to go you have to hurry), interstitial cystitis and chronic prostatitis
(inflammation of the prostate and bladder which is not due to bacterial infection). Trial results for treatment of faecal incontinence have shown minimal improvement.
Clinical experience suggests that anal seepage and constipation due to difficulty in evacuating a bowel motion are helped by this therapy.
Some studies have shown improvement in erectile dysfunction in some men and some women have reported increased sexual awareness following therapy. This therapy may also have a role in treating pelvic pain due to pelvic muscle spasm.

[tex]

Sharaine,

Tramadol contains an opiate agonist, which has the side effect of constipation. That residual effect could be the reason for no BM today, depending on when you stopped taking it, (or whether you're still taking it).

Hugs,
Tex

[tex]

Don't know why I never noticed you talking about this problem in your posts - perhaps it's because I couldn't relate at the time I read it. Anyhow, thank you for your reassurance.

Those posts were written before you joined the board.

You're most welcome.

Love,
Tex

[Gloria]

Kari,

I'm sorry you got glutened and it set you back. Hopefully you'll be back on track soon.

I suspect that I got glutened a couple of weeks ago at my favorite Mexican restaurant. All I ate were corn tortillas and pork. They must have seasoned the pork using flour, or cooked it on a grill shared with items using gluten. It took me several days to get over it, and I'm taking Entocort.

Gloria

[MaggieRedwings]

Morning Kari,

Well I think we are both in the same boat and luckily we have recovered somewhat. I got glutened while on vacation when the restaurant told me the corn chips were corn only - they later came out from the kitchen and quite profusely apologized saying they were corn and flour. By that time, I had consumed about 4. Bad D and the same bladder effects you had. Lasted for me a couple of days with the aches, brain fog and watery D & constant feeling like I had to urinate. Much better now. Just wanted to let you know that you were not alone.

Love, Maggie

[karenswans]

I'm sorry about your bad experience, Kari.

I have the bladder issue, too. But the thing that struck me in your post, Kari, was the mention of hip aches. I definitely have that, and it's the first time I've seen anyone else mention it. I've only been gluten (and soy, and dairy, and egg)-free since Sunday, so I don't know if it will help my hip pain yet or not. The only effect that I've noticed so far is that I don't have to jump up at 4:30 am to run to the bathroom. I had been doing that since May, and it stopped on Monday. I still have D when I do go, but it's wonderful to be able to stay in bed in the early mornings.

[dgshelton]

Kari - I'm so sorry you're having a rough time! I hope you feel better soon! I had to get back on Entocort because of the stress of my daughter's upcoming wedding. I am hoping things will settle down and I can wean off if it again soon. I've never had the bladder thing, but my mother did. She had IC and was on a low dose of antibiotics all the time for it. I so wish she had been diagnosed as gluten intolerant. I think she would still be alive today.

Karen - I've had the hip aches too. I was given a diagnosis of fibromyalgia and put on long term pain management because of it. Since going gluten, dairy, soy and egg free, I no longer need the pain meds. My fibromyalgia is gone.

Hugs,