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Original Request
I am a celiac but since the symptoms of celiac disease and IBS are similar, it has taken me a while to figure out that I probably have IBS.    I have gone to the simplest brown rice and salad and protein diet.  I am taking acidophilus in the form of Megadophilus from Naten. I take a good assortment of vitamins and L-glutamine. I get regular exercise and sleep.  But I still have the symptoms:  Loose stools, occasional gassy and growling stomach.  So I think I have something more, perhaps IBS.  It seems to fit with symptoms.

  Has anyone out there figured out and additional good things to try to take or do?  Are there any enzymes or other supplements with which people have had success?

Response:

I wanted to wait and see if anything would help before responding to the list.  I was very heartened by the quality of the responses and the knowledge that there are a lot of us out there that are working on the same problem with different stomachs.  Thank you all for your assistance.  I should have posted the list long ago but never knew the right question to ask.

  Right after my post I found some IBS pills at the drug store. (I think basicly a lactose aid).  So I tried them.  Then I added some Kefir on my morning cereal.  Then I added some Citrucel- two in the AM and two in the PM.  Then I added some ground up Flax seed on my cereal.  Well, there has been some noticable improvement after my stomach got used to all the new stuff.   As soon as I get solid improvement, I will start pruning away these new supplements until I find the right levels.

Thank you all for the helpful responses.  I got quite a few people asking about the suggestions so I am giving you nearly all of them somewhat edited.

The suggestions from many of you are below:

Add fiber.  Every morning I grind up 1 tablespoon of flax seed and eat in on my cereal.  No more loose stools - they are completely gone!  Grind them up in a coffee grinder that's "dedicated" to flax seeds!    My doctor told me start out slow - so maybe start out by grinding up 1 teaspoon, and work your way up to 1 T (that's the measurement before you grind - the volume increases in the grinder, I think). I also have used a food mill.
Flax seeds have nutrional value (whereas the over the counter fiber additives don't), which is why my doctor recommended them.

Citrucel capsules everyday for IBS. I am not sure of the dosage but it does bind. Stay away from high fiber foods so I am not sure if brown rice is the correct choice for you. Calcium also assists in binding, so eat them when eating a food that might make loose stools like fruit etc. Tried enzymes but we couldn't tolerate them .

If you are close to nyc you might consider seeing Anne Lee the nutritionist at the Columbia University Celiac Center , she is wonderful in helping you determine the correct diet.

I had good results with a couple of things:

1. Almost no grains. Brown rice gives my son diarhhea, and doesn't set
well with me at all. White rice is ok, and tortillas (made with masa,
not straight corn). But potatoes and sweet potatoes are the
best on the gut.

2. No dairy (at least for awhile). Except some kefirized milk or cream
on occasion.

3. I don't like acidophilus as a probiotic. It produces the wrong
isomer of lactic acid. I use kefir grains in juice to make
"kefir beer" and sometimes I have kefir cream in ice cream or
chip dip. THAT helped a lot. Acidophilus is ok if it is with OTHER
bacteria, but the supplements that JUST have acidophilus throw
the gut out of sync, I think. You are supposed to have a symbiotic
colony of several types of bacteria, which you can get from kefir
or something like Primal Defense (which I don't use because it
has barley grass, tho that doesn't seem to bother some folks) or
Effective Microorganisms.

4. I use the Warrior Diet approach to eating ... fresh fruits
and vegies during the day, one meal (meat, potatoes, vegeis)
at night. That seems to be miraculous for my gut ... maybe
because it only needs to produce enzymes one time a
day, and because I *sleep* while digesting (it takes a lot
of blood flow to digest something, most animals take
a nap after they eat). I've lost fat and gained muscle on this,
plus I have more energy during the day.

I have had some luck by
eliminating other foods that have simliar protiens to gluten, for example
soy, legumes, dairy, tree nuts, and corn.

My doc said there was nothing more that could be done--I had been untreated for celiac for so long that the damage was extensive.  I would not accept that and decided to do research on my own.  I ended up researching "leaky gut syndrome".  It sounded to be the most likely problem and so I began doing research into how to heal my gut.  What I did was drastic, but worked.  Basically, I had other offending foods that I needed to avoid besides glutens.  Some people also have gut parasites that need dealt with.  I also took L-glutamine between meals, which you are already doing.  (Good idea.)  You can research leaky gut syndrome online.

Take an acidophilus supplement from Metagenics that is dairy free because we react to casein (the protein in dairy).  Dairy is a problem for many celiacs.

  I would suggest the book "Breaking the Vicious Cycle" by Elaine
Gottschall.
Unfortunately eating brown rice and salad could be making things worse.
You would think they were "gentle" foods but they are not.  Salad is
rough on your GI tract and brown rice (even though a complex carb)
converts to a complex sugar which is also irritating.
Seek out a naturopath - who specializes in nutrition and the "other" side of medicine - more Eastern than Western.
The book I suggested outlines a great diet that seems daunting but is a
good way to figure out what foods are causing you problems.  And it
explains why so many of us with stomach issues continue to have problems
after doing what the doctors tell us.  After I went GF, I was typical
and ate a lot of sweets and GF carbs - which led to more problems
because basically I was feeding the bad bacteria in my gut.
Unfortunately a probiotic isn't enough.

Pancreatic enzymes are needed to digest sugar and fats in food.  Before I
went on pancreatic enzymes, I had gas (primarily belching), noisy digestion,
and the big-D.  The gas and noisy digestion went away immediately with the
enzymes.  The Big-D took a while longer.  In fact, I continued to have
diarrhea until I gave up dairy.

My GI (Peter Green) prescribed Creon 20.  But, there are over the counter
pancreatic enzymes described in the email below.  You might find it worth a
try...
  Most said that the   enzymes helped them.
 > -One person took Creon 20 by prescription from her doctor.
 > -Another took pancreatin Enzyme 1400mg.(#4920) and ordered it on line
 > www.puritan.com or by phone 800 645-1030

I have a heck of a time with all grains- the way wheat affects me is really different than the way rice affects me though, but neither is fun; I can tolerate several servings of rice a week, but not a whole lot at once.  I probably have some IBS- Chrons also runs in my family too.  Maybe you should try sweet potatos instead of rice.  They are also very easy to digest and not very allergenic.  Also taking a soluble fiber supplement (like metamucil) can help when you have diarrhea.  (it absorbs water and makes a "gel" so there is something sort of solid in your intestines- it also helps the inflammatory materials, whatever they are, move through faster)  Insoluble fiber (bran, vegetable peeling, etc...) makes diarrhea worse (for me and most people with any type of colitis).

You need to eat SOLUBLE fibers for the ibs.  Heather Van Vorus has a great web site and good info on how to eat for IBS.  Also, fats are the worst for IBS as well as raw stuff.
Effexor XR is a good med for slowing the gut.  Check out her web site and follow the eating rules.

>I solved my IBS problem after years of struggling with an herbal combination called IBX Soothing Bowel Formula by Natural Balance. I buy it at the Vitamin Cottages in Colorado and know they have an online store.
>
The gassy, growling stomach makes me think immediately of dairy
intolerance - lactose and/or casein sensitivity - which afflicts many
celiacs AND many IBS sufferers.  Have you tried eliminating all dairy
(milk, cheeses, yogurt, casein, whey, lactose etc.) and is your
acidophilus dairy-free?

Many new celiacs are also lactose intolerant.  You might try removing
lactose from your diet for 6 months or so as well.

Primal Defense from Garden of Life. It is a probiotic like you have never known. If you want more info on this, call at 610-286-5985.

May I suggest that for a time you quit eating raw vegetables, like salad, which can irritate the lining of the intestines.  Instead, eat lightly steamed veggies.  Also, vary your rice.  Eat brown and white and uncle ben's, basmati (not wild rice though), because we can become sensitive to only one kind or rice grown in one field (like eating the same brand all of the time).

Try Kefir.

Dr. Jonathan Rubin, a naturopath, states that one of the strains in yogurts, s thermophilus, I believe, is damaging for people who have any autoimmune disease. So it is possible that the acidophilus is counterproductive. My kids and I (all celiac) find that our symptoms return when we eat yogurt on a regular basis.
I take Primal Defense, which has homeostatic soil organisms. It has helped people restore health to their digestive tracts. Go to <http://www.gardenoflifeusa.com/>www.gardenoflifeusa.com I know that many naturopaths prescribe Primal Defense first for any IBS problems, because it works so well (but celiacs still need to be GF, of course. It has helped me get over other serious food sensitivities, such as to corn and soy.

Have you read about microscopic colitis by Dr. Fine?
http://www.finerhealth.com/Educational_Info/Microscopic_Colitis/
Apparently this can be a cause of continued gut problems.

I was talking to someone who suggested it might be rice that I couldn't tolerate.  I thought it was impossible, but did find that I had become intolerant to rice!  I had been eating so much of it for years that I must have become sensitized to it.  I found white rice causes me the most trouble, I can eat a small amount of brown rice if I only have a little once in a while.  Even the rice flour in baked goods is a problem.
I'm just suggesting you not overlook anything even if you're sure it agrees with you.  I'm sad to say, I have to limit rice to only small amounts now, but I don't get sick if i do this.

Often times the supplements are not broken down correctly by our bodies because our body
rejects them.  I'd focus on an EXCELLENT diet with lots of fruits and
veggies or consider Juice Plus to help you get all the nutrients you need
from the real stuff!  Hope this helps!  I know it's done wonders for me.

Do you have a gallbladder?  without it it is hard to digest some foods... especially soy.  I have this problem.. got better going off gluten but still had loose stools.. most of the time to loose... i gave up soy and am doing much better.  Am allergic to milk to... that caused alot of problems to.
Actually my gall bladder was bad and I had the problem with soy but did not know it was the soy. Some years now after having it removed I found out about the soy...

If you haven't already, you might want to also consider other foods
that might be making you sick.  Canola oil is one that many celiacs
cannot eat.  You might want to get a food intolerance test done to see
if any of the healthy foods you are eating are not right for you.

  I eliminated all soy and have greatly improved. I can also be sensitive to other certain foods at different times: high acid foods, some vegetables like cauliflower and beans, etc.

Try eliminating L-Glutamine for a while. It gave me loose stools and gas
even though it is supposed to help us. Probiotics makes me constipated. Go
figure! I am doing great with a multivitamin and healthy GF foods.

I was unable to get rid of the gas and bloating I experienced even on strict
GF diet until I eliminated all grains completely. I eat no grain or grain
products and flours of any kind, not even from beans. This has made an
enormous difference in eliminating problems with bloating, hypercycling of
intestine, etc.

Try eliminating ALL grains of any sort.  Eat only lean protein, fruits,
and non-starchy veggies.

I have Crohn's: for me it is very much down to diet.
- no raw veg, - no sugars,- no gluten, no milk
- mainly cooked veg and proteins. seems to work like a charm
and then the mental side: relaxation and exercise as I get sick when
stressed out supplements: vsl 3 (probiotic), fish oil
peppermint tea if stomach upset
www.wellnessfoods.ca
www.crohnstreatments.ca

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