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Dear Listmates,

I asked the following question recently and got these responses. Thankyou
to everyone who helped with information! I am so very grateful for all the
support offered in addition to information. I am posting an addendum with
attachment that someone sent as 'Part 2: cystitis"

Lissy

Question:

> I recently acquired yet another bladder infection which the DR now
> suspects may be interstitial cystitis. I'm wondering if any other people
> on the group have a lot of bladder trouble as I can almost guarantee an
> infection if I consume gluten as I did about a week ago by mistake.
> Custitis is an infection of the bladder by microorganisms and can
> generally be remedied by antibiotics.
>
> Interstitial cystitis is bladder discomfort which is not always related to
> an infection, is to do with problems with the integrity of the bladder lining,
> and I think is an autoimmune problem which I have read on our group is
> something some celiacs will be prone to.  If there are celiacs on our
> group who have bladder infections/interstitial cystitis, I would much
> appreciate hearing how you deal with the symptoms as this can be a very
> painful problem at times!


Replies:


I was diagnosed with Interstitial Cystitis 16 years ago.  I was diagnosed
with Celiac and Fibromylgia  12 years ago.  I am sure I was born with celiac
since I had colitis at age 12 and IBS after that.

I am sorry that I can't give you any magic answers.  I did get relief from
the IC with Acupressure many years ago.  I am having a major flare lately
and am going to have a nerve block done.  If you are planning on trying
something to help you you can email me and I will tell you how I did because
I have tried it all.

http://www.ic-network.com/
This is a support group for people with IC.

Yes, IC is auto immune.


        I do NOT have biopsy or blood diagnosed celiac. My cousin has
celiac, and I lost thirty pounds before I went gf and started to feel
better. When I have a gluten accident I also get a urinary tract
infection. I have been tested for interstitial cystitis - I don't have it.
My theory is that the gluten accidents cause diarrhea or loose stools,
this is much harder to clean properly. This is a known cause of UTIs.

        One dr. in England suggested to me that I take a bath after every
bowel movement. Not always practical!! Sometimes I carry those baby wet
wipe thingys. I have also been much more careful to only have sex when we
are BOTH clean. (just washed). Especially careful about myself.

        This seems to cut the frequency of infection. I am a little bit
paranoid about getting a UTI as I had to be hospitalised in Britain for a
week in the fall of '97. Very scary. That UTI turned into this illness
which they can't diagnose and which is still making me ill, though
responding to a gf, soy free, corn free, dairy free diet.

        Anyway, I hope some of this info. is helpful to you.

        Take care, and feel better (remember resting does help your bdy
fight an infection!),


I do have too many urinary tract infections; but I attribute them to sex, and
probably not drinking enough water.  I am not familiar with Interstitial
cystitis.  I take antibiotics for the UTIs.

*This part is a summary from a previous poster's similar question:


Lissy, what I am sending you is, I believe, related to your question, and
it's already summarized. What I don't mention there is that I did have
several urinary tract infections when I was drinking milk and eating gluten.

I got several responses from both men and women saying they had the same or
similar problems. Surprisingly, many also said they had the same problem
with gluten accidents. Perhaps someone needs to look into this. In the
following posts, each paragraph is from a different person, and they are
typical of those I received. -vance

My son and I are both undiagnosed celiacs (pseudo-celiacs?).  We are also dairy
and soy intolerant.  He is 8 and when he ingests gluten accidently (or dairy),
he goes to the bathroom constantly.  He also will wet the bed sometimes up to 3
times each night when he gets gluten, although he never has accidents the rest
of the time.

When he gets gluten, in addition to the other more usual celiac symptoms, even
when he goes to the bathroom before bedtime, restricts drinking in the evening,
and gets up to go in the night, he will still have an accident, usually several
nights in a row until the dairy or gluten gets out of his system.  This only
occurs when he has had an accidental gluten ingestion, and not at other times.
I also find that I need to go to the bathroom frequently when I accidently
ingest gluten or dairy.

My brother has the same problem.  He was horribly teased all through grade
school because he just couldn't hold it that long and teachers were not
sympathetic to his frequent requests to be excused.  When he was 13, our
grandmother suggested he might be allergic to milk, and voila!  No more
incontinence.  My 6-year old son seems to have the same problem.  As long as
he's 100% dairy free, he's fine.  But feed the kid so much as a Dorito and he's
going to need a couple of changes of clothes before the day is out, and better
send some for the next day, too.

I have a problem called an Irritable Bowel Syndrome (IBS). It is caused
when the smooth muscles in the bowel contract in front of and behind a
waste matter. This causes intense pain. These same kind of contractions
can occur in the urethra (tube that caries urine from the bladder) causing
incomplete emptying of the bladder. This can be triggered by allergies or
stress. I also have this problem as a result of stress. I think it is
great that you can control it without taking medication.

I am the one with gluten enteropathy, and my husband doesn't have the CD [celiac
disease].  However, he has ALWAYS maintained that after big bowls of ice cream,
which is about the only milk product he consumes, that he would live in the
bathroom, the reason that he would make frequent trips to the bathroom all night
long.  Well, the doctors thought he was crazy, and quite frankly, even I did,
too.  Now after your post, I realize that my husband was right on target.  I
can't wait for him to get home to show him your post.  It will be the first
validation he has had.  He has been through the prostate surgery and is really
having problems, but his drs won't even consider the possibility of CD or
lactose problems.  Since he has been in the retirement center, he has increased
his consumption of cottage cheese by ten-fold or more.  The drs say his diabetes
explains everything.  They refuse to look further.

Thanks for bringing up this association between milk and urinary
frequency. I have always loved milk too, and even with lactose
intolerance find it hard to give up dairy products, but I've noticed
I go to the bathroom a lot more some days than others, when my
overall fluid intake is always about the same. I'll start watching to
see if my MILK intake (I use Lactaid 100 in my coffee, eat yogurt,
etc.) is the culprit. I'll let you know if I notice any relationship.

interesting observations, Vance.  I have been cheating with cream in my coffee
for the past 2 months and think I have noticed myself making more trips to the
Ladies Room while at work, and getting up more at night.   Now I have more
incentive to go totally dairy free.  Thanks again for your comments.

Funny you should comment  about frequent trips to the bathroom.  When I was
quite ill before being diagnosed with CD about 11 years ago I found the
same frustrating problem.  After going gluten and dairy free it has largely
disappeared - except every now and again.  There seems to be some trigger
that sets me going, as if I had taken a diuretic.  I have wondered whether
it is related to an allergic reaction or something, but haven't managed to
pinpoint anything.  Bit of a nuisance, however the last checkup of the
prostate and, etc. was all OK.

I am not sure if I have such problems or not.  but when I was a child, I had
big problems with diarrhea and vomiting and also the urinary thing.  I wet
my pants more often then not up to the age of about 8 when I got quicker to
get to the bathroom.  I always thought that something there was not quite my
fault. I had simply no control over it.  But I see I definite connection
between gluten accidents and having to spurt to the bathroom to pee, not
just diarrhea.   I Wonder how those things are connected.  I am glad, you
asked the question.  Maybe we can find a pattern there that is not
considered at this time.

Thanks for your post - you have struck a chord here!
I had the frequency like you, with a slight variation.  My biopsy
first showed up negative for CD but proved lactose and sucrose
intolerance.  This was when I was about 35.  I had been urinating
about  every hour for the previous 20 years but for a lot of the
time it was accompanied by extreme pain like a cutting knife.
I drastically reduced my milk intake to about one or two coffees
a week and drank soy most of the time.  A few years later
I changed to another gastroenterologist as I suspected there was
something more to be discovered.  I still had the bladder pain and
frequency (together with several CD symptoms which were assumed
by the first doctor to be due to the lactose/sucrose problem .
The new doctor immediately  suspected CD as apparently when
the biopsy shows up deficiencies for both enzymes, it is usually a
marker pointing to CD.  The first doctor only took one.

The second took seven, and this biopsy proved positive for four
samples and negative for three.  He said this result proved his
conviction that one sample is useless.

        He also predicted that within one week of eating GF, my bladder
pain would reduce by 50%.  He was right.  The frequency did remain
but I admit to still  having a cappucino or two each week as the lactose
count had come back to normal.  The pain and frequency has taken
about three years to reduce to practically normal.   Every so often though,
I may have a day of frequency.  The other thing I have noticed that may
have helped the pain problem was to drink more water.   However, I am
intrigued by your speculation about milk.  I hadn't made the connection
to suspect milk  as a cause of the bladder problems, rather than
recovering from 41 years as an undiagnosed celiac.   Maybe it's the
milk protein as well.  It will be interesting to read the summary later on.
Thank you for this, I am now speculating about whether it would be
better to be as vigilant with milk as I am with gluten.

        As an extra point to maybe speculate about and add to your theory  -
I visited a urologist several years ago about the pain.  When I described
it and after he examined me he pronounced that it was interstitial
cystitis (sometimes also referred to as "mast cell cystitis".  From what
I remember this is due to the tissue surrounding the bladder and
urethra being "leaky" so that if you have ingested something that you
are allergic to, the fluid from this allergen leaks through this tissue
and creates inflammation.   Mast cells congregate around this area
in an immune response.  The pain can sometimes last for 20-30
minutes.  (Then you have to urgently go to the toilet yet again and it
starts all over again.)  The pain is like sitting on a red hot barbed wire
fence and being zapped by electricity.

        My worst ever experience was from having a pizza, which was why I
believed my gastroenterologist when he predicted that the symptoms
would reduce.

        When I first started to see the term "leaky gut" used to describe CD
I immediately wondered if there is a connection with interstitial
cystitis.  The urinary system is so close to the small intestine that it
seems feasible that both areas could exhibit a similar characteristic
i.e. being "leaky".  Hope this is helpful.

Yes, I've noticed a similar problem - not really frequency, but urgency.

I thought it was tied to accidental ingestion of gluten, but then, that's
what gives me the lactose problems.  So it may be the lactose.

Interesting observation.


*end of summary from other poster.


I suffered with chronic bladder infections for over 25 years; it was constant
and horrible. I would get severe infections on an on-going basis. When I was
young (and stupid), I would try and ignore them. I ended up in the hospital
the last time I tried that. I had coloidal silver treatments (do you know
what that is?) and they would work for a while. I had the cauterization many
times which only worked for a while also. Then a urologist finally told me I
had this interstitial cystitis (which he said was "an infection outside the
bladder") and gave me some sort of treatment for it (sorry, it was about l0
years ago and I don't recall which antibiotic it was). I remember that I was
supposed to sit in a hot tub several times a day while I was taking this
medication. Whatever it was he gave me, it really did help alot, combined
with the sitz baths. I remember the doctor's telling me that it was critical
to the effectiveness of this medication to soak in the tub along with it.

All of this was pre-CD diagnosis and looking back, I think there had to be a
connection between the two things. I can't tell you why, but about 3-4 years
ago I stopped having the cystitis, although I sometimes feel that an
infection is coming on; so far, it hasn't turned into anything. I take
Macrodantin for about 4 doses if I think something is "brewing." The problem
for me in doing that is that it has both cornstarch and lactose in it and I
am allergic to both of those things. I am also highly allergic to sulfa so it
is really a good thing that the cystitis has stopped.

It may be that the fact that I started taking HRT and actually absorbing it
that helped the cystitis stop. That's the only thing I can think of which may
have made a difference. The bladder infections stopped BEFORE my CD diagnosis
so I can't relate it to being GF, but it does seem too coincidental about the
estrogen-progesterone regimen occurring about the same time.

Good luck with this terrible condition; I wish I could be of more help in
telling you how to get it under control. Most of the related things I have
had with the CD, I know how I detoxed it out of my body, but the cystitis
remains a mystery to me......


I just got home from a visit with my urologist.  I am scheduled for a
cystoscopy, ultrasound and other bladder tests.  Since January I have
been on one antibiotic after another - even 10 days on an iv Rocephin
which is supposed to kill everything.  Last week I passed a kidney stone
and will find out tomorrow what it contained.

I did get some relief after I passed the stone, but I know without some
kind of help the vicious anti-biotic/candida cycle will continue.  I
take Diflucan for the candida, but I think it is becoming resistant, so
I'll have to switch.

It is very possible that IC is an auto-immune disease.  The urologist
considers it a good possibility that he will find evidence of it.

It is amazing how the celiac syndrome takes in so many of our body parts
---and frustrating.  If you have any specific questions, I will be happy
to answer them.  I almost feel as if "been there, done that" with all
kinds of uti problems.

Keep drinking water - they say 48 ounces/day.  I am very bad about this,
but I am getting better because of the constant infections.  I also am
showing red blood cells in the urine.  The urologist put me on
Macrodantin, 1/day and I probably will be on it for 6months to a year to
try to prevent future infections.  He also said that depending on what
he finds, there are new medications to help ease the problems.  I really
hope so.


I use Dannon Vanilla Yogurt to clear up the infection.  Eat about 1\2 cup
every day.

My doctor told me about this.


Yey!! Finally found someone with similar problems to my own - you've
answered a couple of question for me.  I suffer from a lot of blood in my
urine because of infections at time, but when I'm tested they all come back
clear & ok so my Dr just thinks for some reason my bladder is irritated - I
never considered the Celiac connection.   I drink gallons of Citravescent
drinks to neutralise the urine and then after a day or two of discomfort I
seem to be ok - now that I jump straight onto it as soon as my cystitis
starts.


Hi!  I had urethral problems my whole life until going gluten-free.  Beer made
it the worst.  Hot soaks in the bath, eating celery, apples and parsley were
great pain relievers, then there is an otc product called phenazopyridine
(generic name) that turns your pee bright orange but gives pain relief.  You
just have to get it checked out with the doc to make sure there's no infection.
Whenever it was an infection, bactrim DS worked for me.  There was even a time
where a urethrologist gave me them to have on hand so I could take 1 if I felt
an infection coming on.

Good luck!


My wife suffered for a long time with cystitis.  This
eventually became linked with any major stress episode.
The most effective way we have found to control this USED
IN MODERATION is a teaspoon of sodium bicarbonate in water
(soda water is best) drunk AS SOON AS POSSIBLE AFTER
SYMPTOMS START.  This will stop about 80% of sterile and
infection cystitis without needing any other treeatment.  A
second dose could be taken later in the day but if symptoms
continue you need to seek medical help and not continue, as
it it unlikely to have much more effect.  Sodium
bicarbonate is very safe but like anything you should not
take too much as it WILL have an effect other than the
desired one, if you take too much.

I'm not a medic.  I've offered this advice as the husband
of a sufferer to another sufferer and hope it'll help you
as much as it did Karin.


I have had bladder problems (frequent infections despite meticulous hygiene
and urgency/frequency symptoms without infection). I have had these at least
a decade before my CD diagnosis.

I see a prominent urologist in Boulder, CO, and her specialty is interstitial
cystitis. She did a cystoscopy on my (look inside the bladder to see whether
the lining had the "telltale" stellate appearance of IC). My bladder lining
is fine, but I still have trouble with frequent infections and urgency.

I have learned over the years that my bladder issues are related to two
things: the leaky gut syndrome that accompanies CD. Bacteria that should be
restricted to my intestine make it "over the line" and cause infection. Also,
I know I have a candida problem, and the yeast imbalance causes me to feel as
if I have an infection, even when I don't.

My urologist gave me a list of dietary things to avoid to reduce IC symptoms.
These dietary things include avoiding:
   caffeine
   sugar
   dairy
   spicy foods, such as hot chilese/curries
   citrus juices
   chocolate

You may want to try some of the things I do just to see if it relieves any of
your symptoms:
   Take 3 grams of L-Arginine (an amino acid) daily. This has been shown to
reduce interstitial cystitis symptoms in many IC patients).
   Try avoiding the foods above.
   Try some Lactobacillus acidophillus (GF, obviously) daily to restore good
flora in your body and fight the possibility of yeast
   Try some yeast-fighting herbs, such as Pau D'Arco, Goldenseal, or Blackwalnut
Hulls. You may find your bladder symptoms are related to yeast.
   Do your symptoms get worse after you've had sugar? If so, it may be yeast,
which also is common in CD patients.

Best of luck to you. I know this is a difficult problem, especially if it's
IC. But I highly recommend my urologist in Boulder. She does accupuncture
just for IC and also recommends yogo to exercise pelvic muscles. She's had
much success with her methods.


Sorry it took so long for me to reply, I have been very busy lately.  I am
a new list member and recently discovered that I am gluten sensitive.  For
about 5 years I have struggled with recurrent uti's (urinary tract
infections) and at one point thought that I had interstitial cystitis.

Basically, I have been able to control my bladder discomfort by doing the
following:
1.  avoid gluten
2.  avoid all dairy products (milk, cheese, yogurt, etc.) - this is an
important one because my doctor said that undigested proteins (milk protein
is difficult to digest especially for celiacs) are primary food for
micro-organisms that cause uti's and I have found that milk indeed causes
bladder problems.
3.  avoid soy products (same reasons as number 2)
4.  avoid bladder irritants:  chocolate, alcohol, tobacco, citrus, some
spices, caffiene
5.  drink lots of water
I have found these things to really help.  Most of the time my bladder
doesn't bother me anymore except when I eat dairy or something.  I also
found that I don't have to be so strict anymore like I eat chocolate and
drink alcohol occassionally with no problems.  For the most part, I think
it is key that you avoid undigestable proteins and allergenic foods.  I
have also found that an absorbable enzyme  supplement called NESS 419 has
actually saved me from getting bladder infections.  This supplement is hard
to find - I get it through my doctor.  Incidentally, I haven't had a uti
for a year now :-).


I have had both problems for years but the infection part stopped when
I was diagnosed with cystitis.  I went for treatments for 4 years and
then found out through the internet how to keep the cystitis under
control. I gave up caffeine, pop (anything that has the fiz in it
or citric acid), chocolate, citrus and tomatoes.  I do very well and
can sleep for 8 hours without getting up to the bathroom. Also
the pain and the odor has disappeared. I do not nee treatments
anymore and I went on Shaklee vitamins which I believe has helped alot.
Vitamin E, evening of primrose oil and B vitamins are important. Look at
your local health food store in the vitamin book under bladder or
inflamation. I know this sounds like alot but it is worth it! Let me
know how you make out.

Also, I agree that gluten flares up cystitis and my arthritis as well.


Symptoms of IC - can be frequency, pain, urgency.  The only way I tell
the difference between an infection and IC is with an infection I get
burning when I urinate.

No, there is no connection to gluten
I was diagnosed with a biopsy by a Urologist.