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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.

Questions About Villi
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11 posts in this topic

I have read about the damage that gluten does to the villi. I understand that the gluten over time will flatten the villi but this can be prevented by going on a gluten free diet.

My question are....

1/ Are the villi found in the full length of the intestines?

2/ Where else are these villi found (ie; after the stomach)

3/ Is it possible to damage all the villi over the length of the intestines?

4/ When people say that the smallest amount of gluten damages the villi, is this in one are of the all the intestines.

I understand that someone can have a vitamin deficeincy when all the villi are flattened. Does this cause diarrhea or can someone still have soild stools at this stage. the reason why i as is because my stools seem fine.

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1/ http://en.wikipedia.org/wiki/Intestinal_villus

2/ No intestines

3/ Yes and no.... they will self repair but the repair process is bad for you.... so some will always be just repaired etc.

4/ gluten doesn't damage the villi, our antibodies do. The process is just more complex.... one spark can cause a forest fire or it can just burn out... or it can do a certain amount of damage 1st... it all depends on "other factors" ... like if its dry.. wind direction etc. and destroying villi is like that... if you only have a few left it might take out the last ones... if your otherwise healthy it might take out a few...

Does this cause diarrhea or can someone still have soild stools at this stage. the reason why i as is because my stools seem fine.

Some people even get consipation.. its not so black and white...

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Just putting a few cents in about the vitamin deficiency :)

From what i've read, the villi do most of (if not all) of the absorbing of vitamins and minerals for the body, so if they are damaged, then their ability to absorb is reduced and you may not get all the nutrients you need - so its not really related to the consistency of the stool at all :)

Of course, the stool can give signs that you arent absorbing things properly - like having undigested food visible in them and stuff like that.

I'm sure someone can give more info on this and a google search on vitamin absorption in the intestines might bring up some good info too :)

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1/ http://en.wikipedia.org/wiki/Intestinal_villus

2/ No intestines

3/ Yes and no.... they will self repair but the repair process is bad for you.... so some will always be just repaired etc.

4/ gluten doesn't damage the villi, our antibodies do. The process is just more complex.... one spark can cause a forest fire or it can just burn out... or it can do a certain amount of damage 1st... it all depends on "other factors" ... like if its dry.. wind direction etc. and destroying villi is like that... if you only have a few left it might take out the last ones... if your otherwise healthy it might take out a few...

Some people even get consipation.. its not so black and white...

gfp thanks for the post, please can you elaborate on number 3 where you say the repair process is bad for you, some will always be just repaired?

What i dont understand is if i have been eating gluten for 28 years and only 7 months ago did i start getting a sore stomach (and other symptoms)could that mean that i have only just become gluten intolerant, or have i always been intolerant and not know it? after 7 months ago i had been fine, it was only after a very stressful period did my stomach start hurting. i have had this pain 2 years ago but only for a month.

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gfp thanks for the post, please can you elaborate on number 3 where you say the repair process is bad for you, some will always be just repaired?

What i dont understand is if i have been eating gluten for 28 years and only 7 months ago did i start getting a sore stomach (and other symptoms)could that mean that i have only just become gluten intolerant, or have i always been intolerant and not know it? after 7 months ago i had been fine, it was only after a very stressful period did my stomach start hurting. i have had this pain 2 years ago but only for a month.

Ok... but don't get paranoid....this is theory...

Cells repair by dividing and replicating (its termed mytosis).

The actual replication is a little recipee, it follows the instructions in the DNA... however it can make mistakes...

When it starts making mistakes one outcome is cancer... the more you force cells to divide and repair the higher the chance of the replication going wrong and hence cancer. (that's Cancer 101)

Some cells are made to die off and repair daily, like the stomach lining hence evolution has provided us with a simple cell that replicates with less errors.. the villi are not evolved to repair all the time so forcing them to repair more often or near constantly means higher risk of cancer...

On top of this simply constantly repairing your body and stressing your imune system is bad for you, the thyroid gets tired etc.

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I would say my hubby only really had symptoms of celiac disease 2 yrs prior to his diagnosis and celiac disease can be 'triggered' anytime in life.

However, although my hubby only had symptoms for the 2yrs prior to his dx , I would say he's had celiac disease for a long time.

He has alway's been super skinny and completely unable to put on weight no matter how much he ate.

I personally think he was a coeliac since childhood but was asymptomatic.

Who knows, maybe if he'd been tested as a child???.....(but they didn't have anti-body tests then)

He thought it was 'normal' for him never to have a solid stool (he simply couldn't remember a time when it was different) - it's only now that he's gluten-free that he can see a difference in his digestion.

So - at what point you actually became gluten intolerant enough for it to damage your intestine -- Who knows??...but you can be sure your immune system was in overdrive even before then.

Another thing is the symptoms can wax and wane.

My son (who also has celiac disease) had THE most atrocious nappies as a baby :o but then as he got older things seemed to settle down with only the occasional flare up of diarrhoea.

It's only because my hubby had been dx with celiac disease that I insisted he (and my other kids) got tested.

When you are a coeliac, eating gluten constantly is a bit like knocking the head off a scab on your knee all the time.....it starts to heal...maybe over a couple of days you might have a low gluten intake (maybe eating salads) ..and then you have a sandwich and BAM the villi that were the least healed (or the thinnest scabs) are the first to go.

Whilst all this is going on your immune system is in a constant state of fighting the enemy.

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My Dr. told me that the pathologist said my villi were not flattened, but still said I had Celiac Disease.

Is that possible? Healthy villi and be a Celiac at the same time?

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ALSO....your body attempts to adapt to antagonists (in this case, the gluten). You develop a degree of tolerance to gluten. Given certain circumstances, that tolerance can break down, temporarily, then recover to a degree. If you have a celiac gene, there can come a point where all ability to tolerate is gone, and full fledged celiac disease occurs. My mom feels she had vague but easy to ignore symptoms until she had surgery in her 40's, after which celiac disease hit with a vengeance and she nearly died before it was officially diagnosed. I lasted until age 56, although I now realize I too had certain "can live with" symptoms until just before I sought a diagnosis. So you can actually go quite a long time and ignore the whole thing.

It also seems that NOT all celiac genes are known, that you can be very sick without celiac genes, or that you could also have a celiac gene and not be sick at all.

Ultimately, the best thing is to understand the types of symptoms, it's helpful to know your genetic predisposition, and if having symptoms go gluten free for a month and see what changes.

The only frightening thing about all this is the existence of what they call "silent celiacs." No observable symptoms, and these people may not discover they have celiac disease until they are diagnosed with perhaps cancer or some other autoimmune disease which could have been prevented had they known and gone gluten free years earlier.

KNOWLEDGE IS POWER!!! In this case, knowledge can be GOOD HEALTH, too!! Read up about celiac disease and gluten sensitivity. Be knowledgable about the possibilities. And if you suspect anything with yourself, at the very least spring for a gene test to at least know if you are predisposed to celiac disease.

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My Dr. told me that the pathologist said my villi were not flattened, but still said I had Celiac Disease.

Is that possible? Healthy villi and be a Celiac at the same time?

dfg,

Appearently anything is possible. As I understand it, many times the biopsies of the small intestine can miss the damaged areas. The damaged villi can be at the beginning of the small intestine, farther down, or at various places.

They say there are thousands of symptoms, and none are common for everyone.

At my last support group meeting, there was a new member. He had never been sick or had any symptoms. After not having a doctors visit in over 8 years, he decided to get a routine physical. Routine blood work discovered he was anemic. The doctor ordered more test to find the cause and discovered his villi were seriously damaged and he had celiac disease.

Amazing! Never sick, no symptoms (except anemia inadvertainly found), and yet definately had celiac disease.

I'd say you are actually one of the luckier ones. Better to have celiac disease and healthy villi, than the alternative.

best regards, lm

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My Dr. told me that the pathologist said my villi were not flattened, but still said I had Celiac Disease.

Is that possible? Healthy villi and be a Celiac at the same time?

Maybe your villi were 'only' inflamed and had some damage, but were not flattened yet? Be glad, you'll heal much faster, and other autoimmune diseases may not have been triggered. But if you continue to eat gluten, it is only a matter of time, and you'll have flattened villi and will get seriously ill. It is much better to prevent that.

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The only frightening thing about all this is the existence of what they call "silent celiacs." No observable symptoms, and these people may not discover they have celiac disease until they are diagnosed with perhaps cancer or some other autoimmune disease which could have been prevented had they known and gone gluten free years earlier.

This describes my husband.

2 years before being dx with celiac disease he was dx with Psoriatic Arthritis - this was the first sign something was amiss with his immune system.

Shortly after the arthritis dx his gut symptoms kicked in.

I'm convinced that had he been gluten-free back then the arthritis wouldn't have happened.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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