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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.

Can Eating Gluten Cause Damage?
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9 posts in this topic

Hello

Forgive my lack of understanding. I don't have coeliac disease myself but my baby going on toddler does. She's been living with it very well for the past year and we have never had an episode at home with any reactions.

Unfortunately she's had 3 reactions at daycare despite them knowing about her condition. She will vomit continuously each time she eats gluten, the final time is just some saliva and perhaps a tiny bit of food, we know it's over and she's happy and wanting to eat more food and running around.

My concern is, does eating gluten cause her any damage to lead to other medical complications or increase risks.

i'm going to stick my neck out here and say i've been worried it could increase the risk of bowel problems, maybe even increase risk of bowel cancer, stomach cancer, diabetes etc. This perhaps shows my complete lack of understanding but i would like to find out at least.

Thanks!

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I don't have celiac, but am gluten sensitive. I din't find this out until my mid thirties. The way I found out was due to developing epilepsy and following a suggestion to check into gluten sensitivity. So I guess that answer from me is, yes. I believe that gluten can cause damage. To what extent to the individual, I am not sure. I nor anyone in my family had any thought that I may have this sensitivty to gluten and I had a "normal" life until the epilepsy started. From what I found out about my condition (which is called hippocampal sclerosis)is that the processing or lack of (I don't know how to describe it) of gluten affects a calcification at the occipital lobe of the brain, which then causes a deteriorization of the hippocampus (right side in my case) that progresses over time, usually the early to mid thirties. I don't think that this particular thing would happen to people that are already diagnosed with celiac though, but I'm sure some other kind of damage can be caused over time if things are not carefully whatched over.

Good luck to you,

Ray

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I am quite sure that eating gluten does increase her risk of developing cancers and other celiac-related conditions if she has celiac disease. I imagine it is very hard to keep her from eating gluten in daycare since she isn't old enough to know what she can and can't have, but I would keep working toward a solution to keep her completely gluten free.

Good luck!

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Many individuals with Celiac and Migraine experience that their migraines are minimized or cured by a gluten free diet. Studies show that migraines are linked to lesions on the brain, significantly raising risk of developing Alzheimer or experiencing stroke.

Eating gluten will likely (though it seams not always) cause damage to the villi in her small intestines, preventing her growing body from taking in the all nutrients she needs. Without a gluten-free diet, she may get sick often, and have stunted growth.

The more research you do, the more you find may be linked to this condition. Since she is young and growing, and is already diagnosed, it may be best to not take any chances. Give her the best chances of growing up strong and healthy and make sure her diet is gluten free now.

You may need to print out information on Celiac to give to the daycare attendants to be sure that they understand the seriousness of the situation.

On the plus side, there are lots of delicious gluten free foods and snacks, so it's not as though she has to grow up without cookies and cake :)

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Also, sorry, just remembered.

Has she been tested for any other food allergies or sensitivities?

Many people with Celiac are also either lactose intolerant or are outright allergic to dairy. Soy is also a common offender for many people.

Neither of these will cause villi damage to the best of my knowledge, but they each come with their own bag of worms.

My husband has a severe dairy allergy. He was colicky as a baby. In his mid 20's he experienced a throat constriction due to Eosinophilic Esophagitis, which made his throat hurt and tighten so much he couldn't eat anything but liquids, until he had surgery and discovered his allergy. Now he eats faster than I do.

Soy is a very good source of nutrition for those not sensitive to it. For those of us that are, it causes symptoms from brain fog and migraine to vomiting.

Best of luck to you and your little one.

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Over time, continuously eating gluten does cause risk. In a way, your daughter is lucky that she reacts obviously enough that it cannot be missed as her body rejects it, otherwise, she could be eating gluten and nobody would know it.

For us older adults who were not reacting in the "classical" sense, and who did not get diagnosed or figure it out until after decades of damage, now that we have been off of it for a long time, we are acutely aware of our non - traditional reactions, even if the medical community over on this side of the pond (U.S.) is still fumbling around a bit.

Eating gluten, for celiacs, (or gluten intolerants) can cause an auto immune reaction in which the body slowly attacks its own tissues. This "silent" damage can be just as devastating as the obvious classic ones of vomiting, intestinal upset. It can cause heartburn. It can cause lack of balance and coordination issues. It can cause brain damage, aka "bright spots." It can cause vision problems. It can cause increased chances of having asthma or other allergic reactions. It can make one very sleepy or feel very lethargic "brain fog." It can depress thyroid function. It also seems to be linked to type 1 diabetes onset. (All of these problems will obviously affect the ability to learn and do well at school or work) In the future, it can affect how her reproductive organs function, such as decreased fertility or having cystic ovaries. It can make one's bones too thin.

We adults are always afraid of "cancer." But that is mostly an older person's disease.... But the overall crashing fatigue issues, brain fog, the thyroid issues, and lack of well being can also be a lifestyle wrecker. Especially when we are in such a competitive world, expected to be able to remember lots of information, and interact with a lot of different rules and restrictions.

Some kids like the adults, when they get older, will get really tired and irritable when they get glutened- who needs the extra hassle ? It could be worse in a school situation, where the teachers are tending to blame it on a behavioral problem.

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Thanks for the advice

Yes she has had all the tests and they found evidence of the problems in her gut effecting her development. She had 6 months of diagnosis when she was one and a half, and this delayed her development physically, slightly. She is about 1 or 2 cm's shorter than her piers and at the time had a severe lack of energy and began loosing weight.

Her belly was distended and it was putting in the bath one day that i didn't think something was right. About a month later they were still doing tests and she began vomiting back up her foods occasionally. They put it down to teething or the way her bowel was developing. Anyway, we got it sorted in the end after about 6 months.

As far as we know she is fine with all other foods, loves milk, dairy etc.

My only concern is what gluten can do to her. I know you have all said it can lead to complications, but are we talking a continuous supply of gluten that can cause cancer and lifestyle issues or are we talking even a tiny amount. It is very hard to quantify.

Cheers,

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I read recently on one study that 1/100th of one peanut can be enough gluten to begin to cause damage (or about two breadcrumbs) but it is cumulative. Aside from increasing various cancer risks, gluten is definitely linked to infertility and miscarriages as well as other auto-immune diseases.

I believe it was Sylvia here who recommends "Celiac for Dummies" which I also read which can be a helpful book in understanding the extent of damage and the problems it can cause. BUT that is for those with undiagnosed celiac disease; once diagnosed apparently and strictly following the gluten-free diet most of our guts would look the same as a normal gut in approximately two to five years' time (less for children).

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My only concern is what gluten can do to her. I know you have all said it can lead to complications, but are we talking a continuous supply of gluten that can cause cancer and lifestyle issues or are we talking even a tiny amount. It is very hard to quantify.

If she is getting into gluten regularly enough to cause her TTG to rise or even slight villous damage, there is a danger of cancer and other autoimmune diseases. If her antibodies are at zero and her villi are healed on followup biopsy, my understanding from the scientific literature is that she doesn't have any increased risk of cancer or other celiac-related problems. (Malnutrition, developmental problems, other autoimmune diseases.)

Unfortunately, that threshold is different for every person with celiac disease. Some celiacs react to as little as 10 mg gluten/day while others can tolerate over 500 mg. It generally does take 2-3 months of daily gluten exposure to get a complete relapse so it is unlikely that her infrequent gluten exposures are doing any long-term harm. The best way to tell if her lifestyle in general is working is for her doctor to do followup antibody testing. This is pretty standard care for celiacs anyway.

I assume you have followed up with the daycare people and made sure they understand that gluten is dangerous for people with celiac disease.

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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