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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Important Are Probiotics And Digestive Enzymes?
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18 posts in this topic

I am a recovering celiac, 7 months gluten-free and still healing. I have great days (finally, yeah!) but I definitely still have a good number of crappy days. GI symptoms are gone, but I still struggle with fatigue and brain fog. In my quest for total healing I've heard several times "All Celiacs should be on digestive enzymes and probiotic supplements." I tried them a few months ago (briefly), but after a few days they seemed to irritate my digestive system so I dropped them both. A few questions then for the wise participants of the forum :

1. Do you find that digestive enzymes and probiotics indeed help? Do you recommend all celiacs try them?

2. Has anyone had problems with them and had to avoid them?

I realize complete healing of the system after initial diagnosis can take a long time (some people on this forum have told me 1-2 years, and Enterolab reports the antibody stays in the blood for at least 1 year!) , but I just want to do everything I can to help myself, without irritating my fickle gut.

Thank you!!

Christian

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Christian,

There are many people out there who cannot tolerate probiotics and digestive enzymes. I started taking probiotics and L-Glutamine about a month ago and saw some great improvements. Probiotics are rough at first because they have to cleanse the intestine of toxins and bad bacteria. This period can last for 10 days, and it can be very uncomfortable. Fortunately, for many people it does come to an end, and positive effects begin to show through. The reason why probiotics work is because many celiacs have some degree of bacterial overgrowth. Probiotics restore a healthy balance of good bacteria.

Digestive Enzymes are containdicated for people with ulcers. If you have an ulcer or erosion, Digestive Enzymes will most likely bother your stomach. Generally, people tolerate them well. Digestive Enzymes help because in many celiacs, the pancreas isn't working correctly. It is unable to secrete enough enzymes to digest food. Digestive Enzymes assist in this process, and complement the pancreas.

Did you take the probiotics and the enzymes together? If this is the case, it is possible that only one of these supplements was bothering you. You may want to introduce them one at a time, and then see how you feel. Many people take probiotics, digestive enzymes, and L-Glutamine to speed their recovery. If you have pancreatic insufficiency or bacterial overgrowth, it may take longer to recover with the supplements. Fortunately, your doctor can run tests to see if you have either of these conditions. After the tests, your doctor could advise you on which, if any, supplements to take. I hope this helps. Good luck,

-Brian

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capsule probiotics didn't do anything for me but Kefir sure does! I make it from coconut milk. I think it is responsible for my turn-around. I was still pretty bad after a year of gluten-free, better than I was before gluten-free but still having issues.

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capsule probiotics didn't do anything for me but Kefir sure does! I make it from coconut milk. I think it is responsible for my turn-around. I was still pretty bad after a year of gluten-free, better than I was before gluten-free but still having issues.

Nancy, could you tell me how to amke kefir from coconut milk. thank you so much! :blink: evie

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I take digestive enzymes daily. I don't really have any problems now but when I was still a bit sick I could tell a difference when I went to the bathroom - things were formed much better when I was taking them. Now, if I have a stomach ache (unknown reason, not gluten) I take one and it usually helps, but then again maybe the stomach ache was going to go away anyway. I take digest gold by enzymedia (some brand like that).

I took probiotics in the beginning. I had a stool test that showed I had very little good bacteria and candida overgrowth. Since getting better I just drink kefir everyday. It has a lot of protein as well. The plain tastes like liquid sour cream and I couldn't do that so I do drink the flavored kind which tastes like liquid yogurt.

I guess it really depends on why you are still having days when you don't feel great. If you are ingesting gluten, then I don't think these things will help you much. If you are just still healing, then I would think they would help if you can tolerate them.

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I just started seeing a specialized nutritionist and he put me on, among other things, digestive enzymes.

He gave me a chart of when to take what, but he told me that you can't take enough digestive enzymes. And that if everyone would eat them like candy, we'd all feel a lot better.

It's been about two weeks and my stomach has definately felt a lot better overall...

Courtney

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Nancy, could you tell me how to amke kefir from coconut milk. thank you so much! :blink: evie

I second this question rinne- how do you make kefir from coconut milk?

Miamia

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A lot of the question depends on the rest of your diet.

If you drink unpasturised milk, eat unpasturised cheeses especially and raw meats then you are getting pro-biotics.

In most cases processing of food is what removes or kills the pro-biotics hence it depends on what you eat.

Humans developed eating raw eggs, milks and cheeses but the increasing processing of food removes them.

If you have lived without them then they will likely make a difference but whether this is good or bad in the short term isn't easy to determine.

In many cases because of our dependance on processed food our body cannot deal with the pro-biotics as they do their job... because we react more strongly to them than if we had consumed them naturally from birth....

One thing is for sure, infant mortality is lowerer and life expectancy higher in countries that eat raw meats, fish and unpasturised products.

I don't think this is necassarily a direct consequence of this but if it was so bad for you then you would hardly expect not to see higher life expectancy and lower infant mortality since it is usually the old or very young that are said to be at risk!

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Is there a recommended brand of digestive enzymes??

Thanks,

Janet

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I've had trouble in the past with digestive enzymes. I rarely take them now. I have found that when I start to have small intestine pain, I go back to a very basic, easy to digest diet of fruits, veggies, lean meat, fish, & eggs, and brown rice/brown rice flour (not the starchy sweet brown rice). I make sure not to eat any preservatives or additives, and very few spices. I find that most of the gluten free items contain gums and starches that are pretty hard to digest when my system is sensitive. This helps me so much! I also avoid any foods that cause me to get congested (like corn, dairy) and foods that many people find harder to digest (nuts, beans, etc.). Then, when I have been feeling better for a while, I start to reintroduce harder to digest items. I always avoid gluten though :-)

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Did you take the probiotics and the enzymes together?

Brian, Yes, I took them together and decided "I don't know what it is but I'm not comfortable." lol Today I began digestive enzymes and I have ordered a probiotic.

I appreciate everyone's comments. This darn disease is so frustrating at times - always second guessing where the gluten could be, always second guessing potential negative affects of other foods and supplements, and the inevitable roller coaster that ensues as GI stability is chased. Hopefully the enzymes and probiotics will help ; meanwhile I appreciate the feedback anyone may give.

Thank you-

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Nancy, could you tell me how to amke kefir from coconut milk. thank you so much! :blink: evie

Same as you would from milk, just use coconut milk instead.

First thing to do is get the Kefir culture called "Kefir grains". Then you put them in a clean jar (I use 1 quart mason jars). Fill it up (leaving some air space at the top) with coconut milk (without preservatives). Drop in the kefir grains. I cover the top with a coffee filter held on with a rubber band. I put that into a cupboard at room temperature for 2-3 (or more days) until it tastes nice and tangy (using a clean spoon to taste. Then I strain out the "kefir grains" and refrigerate the kefir. The grains either go into a new batch right away or else I store them water in the fridge for awhile (not too long, they might die).

Be aware that the beasties give off gas so never put a tight lid on kefir, you could have a messy explosion if the gas can't escape. After it is done fermenting I put a loose mason jar lid on the jar and stick it in the fridge.

Here's a web site with more than you ever wanted to know about kefir. :) As far as getting the grains, I did a web search and found someone selling them.

http://users.sa.chariot.net.au/~dna/kefirpage.html

Since I started using kefir my constant, not-quite-diarrhea cleared up entirely and if I miss too many days of kefir I start getting constipated. But it seems to go away on short order when I resume the kefir.

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I take a digestive enzyme from the NOW brand. They are really good but don't take too many or they will bother your stomach. I found that out the hard way. They have helped me immensely.

When it comes to probiotics, make sure you take one that is enteric coated. That means they will last long enough to get past the stomach acid and make it to the intestines where they can do what they are supposed to. I started taking one about 3 weeks ago called Acidophilus Ultra from New Root Herbal (or something very close to that). After being on them for about a week, I went through about 7 days of detox (as Brian mentioned in an earlier post). Now, however, I am starting to get the positive results and have such amazing bowel movements, I just about want to stand there and admire them!!! Sounds gross but I'm sure anyone with Celiac/ gluten intolerance can well appreciate what I am saying :D

Best wishes!

Marlene

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... After being on them for about a week, I went through about 7 days of detox (as Brian mentioned in an earlier post). Now, however, I am starting to get the positive results and have such amazing bowel movements, I just about want to stand there and admire them!!! Sounds gross but I'm sure anyone with Celiac/ gluten intolerance can well appreciate what I am saying :D

Best wishes!

Marlene

:lol::lol::lol:

Marlene, its good to know that I'm not the only one!!! I've been taking digestive enzymes and Acidophilus by Country Life for a couple of months, now, and I've been having the most beautiful BMs that I've found myself wanting to photograph them!!!

Yes, the first week was way hard for me too... I actually stopped taking them for a couple of days but then came here to see another thread like this one, where someone suggested to the poster to ride it out for a few more days as it was probably his system kicking the bad stuff out his system. Went back on and am loving the results! Aerin, please let us know if you find them helpful...best of luck!

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I have a few questions about coconut kefir:

Do you just use whole coconut milk from a can or do you use fresh coconuts to make your milk?

Is it okay to use kefir grains from raw milk?

Do you drink it plain or add other ingredients such as in a smoothie?

Will I notice a change in apprearance as it ferments?

Thanks. I am so excited to get started with the kefir.

Cathy

Same as you would from milk, just use coconut milk instead.

First thing to do is get the Kefir culture called "Kefir grains". Then you put them in a clean jar (I use 1 quart mason jars). Fill it up (leaving some air space at the top) with coconut milk (without preservatives). Drop in the kefir grains. I cover the top with a coffee filter held on with a rubber band. I put that into a cupboard at room temperature for 2-3 (or more days) until it tastes nice and tangy (using a clean spoon to taste. Then I strain out the "kefir grains" and refrigerate the kefir. The grains either go into a new batch right away or else I store them water in the fridge for awhile (not too long, they might die).

Be aware that the beasties give off gas so never put a tight lid on kefir, you could have a messy explosion if the gas can't escape. After it is done fermenting I put a loose mason jar lid on the jar and stick it in the fridge.

Here's a web site with more than you ever wanted to know about kefir. :) As far as getting the grains, I did a web search and found someone selling them.

http://users.sa.chariot.net.au/~dna/kefirpage.html

Since I started using kefir my constant, not-quite-diarrhea cleared up entirely and if I miss too many days of kefir I start getting constipated. But it seems to go away on short order when I resume the kefir.

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Flowergirl sent me over to this thread and it's been incredibly helpful to read through all your responses here!

It took me a long time to figure out that the probiotics I'd been taking were upsetting my stomach -- I kept thinking, this can't be! These are supposed to help! I took them for months and it never got better. I switched to yoghurt, but because it's cow milk yoghurt and I think the celiac disease has made me lactose intolerant, that didn't work either. So I was stuck

Now I'm excited to try kefir -- though I guess made from something other than milk. The coconut option sounds hopeful!

I took glutamine for a couple of months but read that you're not supposed to take them for more than two months at a time. Has anyone else heard this?

And I've been avoiding digestive enzymes because I read that they "train" your system to not produce its own digestive enzymes. But maybe that's nonsense -- or I should try anyway. Anyone have a recommendation of what kind to get? The shelves at Whole Foods are a little overwhelming.

That just cracked me up about admiring the good poops. Think of all the people who get to take their beautiful poops for granted. I feel like having a party every time I have a good one.

Has anyone else tried zinc lozenges -- not for colds, but for healing the gut? I think they've helped me some. I've also been taking a lot of vit E and fish and borage oil. Don't know if they're helping but seems like a good thing.

The one thing that seems to help in moments of acute pain/gas/bloating/diarrhea is enteric coated peppermint oil.

And I've been making carrot/beet/apple/ginger juice in my new juicer -- with lots of fresh ginger. Again, that seems to help right in the moment when eating anything seems like an awful idea.

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My homeopath suggested Gentian before trying digestive enzymes. Gentian kickstarts the digestive juices and processes when taken with a little water 20 minutes before food. It gets the digestive system and gastric juices going so it can get into the habit on it's own once you stop taking it. It is not habit forming and no nasty side effects and perfectly safe and natural too. Just be careful of not buying Gentian products with laxatives like liquirce etc it. Buy pure gentian only, it really works. Google it and see for yourself. B):D

Cate, have you tried slippery elm mixed with water for the pain and inflamation of the gut. It is very soothing and calming. I have tried Zinc capsules before but they always make me neasious. (spelling?)

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I've been taking these for years and they have helped me a great deal

if on a rare abx i put the probotic.

Nutrition Now-PB8 --Pror-Bbiotic Acidophilius for life. 14 billion good bacteria..........this is the whole label.ALL MINE ARE FREE OF THE 8 MAIN ALLERGENS.

Nutrition Now-Yeast Defence.

Also a Evening Primrose but don't have the exact info now.

Judy

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