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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.

Fatty Stools And Confusion
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10 posts in this topic

I haven't been on the celiac sight for awhile, but I was looking over some posts and noticed some things that worried me. I read somewhere where someone said fatty stools are usually the end stages of celiac? What does "end" mean here? Very scary word. I've had fatty stool for about a year now and I'm waiting on my insurance to go back into effect in a couple of months so I can get my colonoscopy and endoscopy done. My blood tests are fine, but I have chronic "D" and malabsorption, specifically weight loss and fatty stools) in my small intestine. Now, I read that villi can heal themselves over time, but the way I read this one post it scared the crap out of me. With that said, overall I'm pretty healthy. I don't have bone problems (though I do have teeth enamel problems), I have a healthy appetite, no blood in my stool, no pale colored stools, just loose stools, and chronic "D". My biggest thing is I have a problem losing weight, but I've managed to maintain my weight by drinking Ensures, because I don't know of anything else I can get the nutrition and calories needed except through these. I also can't have too much dairy or I have a hard time digesting it, but in moderation I'm fine (for instance, I can have an ice cream cone, a bowl of cereal, etc, but if I eat a lot of dairy in one day I have problems). Also, for some reason, when I drink a malted-milk shake I get what I can inflammation, because I get eye inflammation from it, so I've learned not to get them anymore. I also get joint pain in the back of my neck at times, but nothing extreme and it normally goes away with sleep. If you guys can shed any light on the healing process specifically, and that things can get better, or that the villi can heal with time, it would be appreciated. Thanks.

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I can say that all of my stool issues went away within two days of going gluten free though abdominal pain seems to be related to additional vitamin deficiencies that I'm still working on.

This is the first time I'm hearing the phrase "end stage" in relation to celiac. And as far as I know now, even those with celiac sprue can heal if they manage to figure out additional food intolerances (dairy being a common one) or imbalances and go hard-core on avoiding gluten - no parts per million.

It sounds as if you are already planning on taking the right steps needed to monitor healing in the future, an endoscopy now that can be used for comparison should the vilii be damaged.

But the fact that you already notice a problem with dairy but are still consuming it may mean that you could use some additional motivation in order to pass on it in the future. If you haven't started a food diary yet, that could help you pinpoint your specific issues.

I'm presuming that you're still eating gluten now, but even if your endoscopy didn't show any damage, I'd still consider giving gluten-free a try as you could have the sensitivity. They are still learning a lot about gluten reactions so better to find out if your body does better without it than waiting for the science to catch up.

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I haven't heard the term " end stage" for Celiac Disease also known as Celiac Sprue. Perhaps someone was referring to almost total damage of the biopsied parts of the small intestine. That can heal on a gluten free diet.

The reason many Celiacs have trouble with dairy is that the lactase that digest the lactose in milk, is made in the villi. No villi - no digesting milk products. Some milk products have less or no lactose and may be fine to consume. When the villi grow back, you may be able to digest milk products again. However, you can google lactose intolerance and find that many adults have lost the ability to digest milk - even with a healthy intestinal tract.

Have you had Celiac blood tests? Have you actually seen them? I ask because many doctors don't actually run the right tests. Get a copy and see what they say. Have you eliminated dairy? Maybe this is an issue with dairy, Celiac or not? You should continue to eat gluten until all testing ( including the endoscopy) is done. You can eliminate dairy as it shouldn't affect the Celiac damage but might make you feel better.

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I had blood test done for Celiac over a year ago and it came back negative, but according to my new GI he says he wants to make sure I had the right one and that sometimes they don't come back accurate. 

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I had fatty, floating stools 5-6 times per day for years and years, and I didn't even realize the floating part was abnormal until I started researching celiac. I just thought everyone's stools floated! My celiac tests were negative, but I've been gluten-free for about two months now and they are starting to sink occasionally. My daughter's stools firmed up and starting sinking within two weeks of her celiac diagnosis. I've had low cholesterol and a bunch of borderline vitamin deficiencies over the last few years, but overall my vitamin tests were remarkably good considering that I had diarrhea for 20 years. I think that eating a very nutritious diet helped mask the problem early on; I'm sure the deficiencies would have showed up much sooner if I'd been eating more processed food. Dairy or any fatty foods (olive oil, sunbutter, etc.) are definitely still hard for me to absorb. Anyhow, I was scared too when I found out that all those years of floating stools could signify a serious problem (though I would have been relieved to find the cause of all my symptoms), but my malabsorption seems to be improving steadily since going gluten-free. Probiotics seem to help, too.

Looking back on my pre-gluten-free diet now, I seemed to react much more strongly to baked goods and barley malt than to plain wheat crackers. I'm waiting for the results of an IgE allergy test for bakery's yeast now. True yeast allergies (different than candida overgrowth) are uncommon, but if you notice itchy eyes and other classic allergy symptoms when drinking malted milkshakes, it might be worth getting allergy tests, especially if your celiac tests were negative or inconclusive. Yeast (Saccharomyces cerivasiae) occurs naturally in all fermented and some dried foods - vinegar and any condiments containing it, malt, cheeses, alcohol, coffee, fruit juices, dried fruit - so it's much more widespread than just in baked goods, and naturally-occurring yeast won't be listed on ingredient lists. I always thought I was just so extremely lactose intolerant that I still had problems with the supposedly-nonexistent amount of lactose in aged cheddar cheese, but now it seems like I might actually be allergic to the yeast produced by fermentation. Maybe this is an unrelated tangent...who knows, but a food allergy can get progressively worse with continued exposure. My tongue swelled up during my gluten challenge and is still swollen three months later, while in an earlier stage I just got itchy eyes, diarrhea, and bloating after eating baked goods. I was shocked that my celiac tests were negative (and my GI was shocked too, given my health history and symptoms), but it now seems like a yeast allergy would cause many of the same symptoms. If I get any useful info when my tests come back, I'll post it.

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Can someone explains what constitutes a "fatty stool". My son has gray colored poop and it always sinks. I however have what I believe to normal color but mine float and always have. As far as the fatty part...how would I know? Sorry if that's TMI but it seems to be the norm here.

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Can someone explains what constitutes a "fatty stool". My son has gray colored poop and it always sinks. I however have what I believe to normal color but mine float and always have. As far as the fatty part...how would I know? Sorry if that's TMI but it seems to be the norm here.

 

The doctory name for it is steatorrhea.  There is more info on the Wiki page than I pasted in here.  The floaty part is one of the main features that characterize it.  Color can vary.

 

http://en.wikipedia.org/wiki/Steatorrhea

 

Steatorrhea (or steatorrhoea) is the presence of excess fat in feces. Stools may also float due to excess lipid, have an oily appearance and be especially foul-smelling.[citation needed] An oily anal leakage or some level of fecal incontinence may occur. There is increased fat excretion, which can be measured by determining the fecal fat level. The definition of how much fecal fat constitutes steatorrhea has not been standardized.

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I had blood test done for Celiac over a year ago and it came back negative, but according to my new GI he says he wants to make sure I had the right one and that sometimes they don't come back accurate. 

 

 

Getting new blood antibody test now is a good idea.  Things can change in a year.  Or much less time.  Make sure to ask for the full celiac disease antibody panel.  And ask for a printed copy of the results with the test result normal ranges.

 

A few threads that may help.

 

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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"End Stage Celiac" is not like end stage cancer. Don't let the term scare you. It means your small intestine villi are completely eroded flat and your digestion is all screwed up. It's the "end" of your villi, but not THE end. Your villi can heal and re-grow. In fact so easily and fast that just a few months on a gluten free diet can screw up your tests for the disease.

 

Fat is digested by bile from your liver and stored and concentrated in your gallbladder. If you have floating stools, and you've had your gallbladder out, you can try taking a bile salt capsule with every fat containing meal. When I stated the bile salts, my poop sank, and smelled better! This also means the nutrients are being absorbed better.

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"End Stage Celiac" is not like end stage cancer. Don't let the term scare you. It means your small intestine villi are completely eroded flat and your digestion is all screwed up. It's the "end" of your villi, but not THE end. Your villi can heal and re-grow. In fact so easily and fast that just a few months on a gluten free diet can screw up your tests for the disease.

 

Fat is digested by bile from your liver and stored and concentrated in your gallbladder. If you have floating stools, and you've had your gallbladder out, you can try taking a bile salt capsule with every fat containing meal. When I stated the bile salts, my poop sank, and smelled better! This also means the nutrients are being absorbed better.

Where do I get bile salt?

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    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
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