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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.

To Gluten Free, Or Not To Gluten Free...
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9 posts in this topic

Hi there,

First off, I'd like to say thanks so much to everyone for your contributions to this message board -- it's been an invaluable resource for me over the years. Apologies in advance for the length of this post.

My question, in a nutshell, is: Should I consider reintroducing gluten into my diet?

Now for some background: I was never diagnosed by a doctor as having celiac, but I was unofficially diagnosed by my mother when I was an infant. I'm told that when she first introduced cereals into my diet, I lost a large amount of weight and stopped digesting things properly (she at one point thought maybe it was when she started me on formula, but now she says she's pretty sure the problems started when she introduced cereals). I continued eating gluten, and this issue eventually passed, but it came up again when I started kindergarten and was crying every day at lunch. Now for the record, I recall being more scared of being in the lunchroom with all the other kids than anything (huge introvert), but she says that when she switched me from peanut butter sandwiches to peanut butter on rice cakes, the problem went away. (She also experienced a reduction in health problems after switching to a gluten-free diet.)

From that point on -- 25 years now -- I've been on some degree of gluten-free diet, more strict at times than at others. For the better part of 20 years, I would avoid most large, obvious sources of gluten, but I was missing lots of cross-contamination and hidden sources: I'd pull a cheeseburger off its bun and eat the meat and cheese, pull sandwich fixings off a roll and eat them, peel the cheese off pizza and eat the cheese, consume questionable sauces, and so on. Finally, about five years ago, it occurred to me that I should be looking for gluten a bit more carefully, and I've become very strict about sticking to the diet ever since then.

A couple of times in the recent past, I've unknowingly eaten gluten (flour-coated French fries in one case, a wheat-free, but not gluten-free, brownie in another, and fish seasoned with soy sauce in another), gotten sick, and only then discovered that I'd had gluten. In these cases, at least, I know I didn't worry myself sick after eating gluten because I didn't even know I'd eaten gluten *until* I got sick. However, I've wondered if this reaction could perhaps just have beeen a result of not having had gluten for such a long time, kind of like the effect eating a ton of fiber would have if you hadn't had any fiber in years. (I seemed to be doing fine when I was eating Twinkies and pretzels in middle school and peeling the breading off chicken in college.)

All of which is to say, there's a nagging question in my mind of whether my mom could have been mistaken about me having gluten issues -- she's had hunches about health-related issues in the past that have turned out not to be the case. (Not complaining, though -- I know she was doing what it took to keep me healthy.) I'd just go and get tested for celiac, but since I haven't had gluten in so many years, the test of course wouldn't be accurate.

I'm a single gal, and dating can be difficult while staying gluten-free. If I really have celiac or gluten intolerance, I'm happy to do what I have to do, but if I don't -- well, I'd rather not have to ask dates to refrain from kissing me until they've brushed their teeth if I really don't have to!

If any of you have any suggestions for how I might approach this -- leaving it be, trying gluten again, or some other option I may not have considered -- I'd really appreciate it.

Thanks so much for your help, and have a wonderful weekend!

Sincerely,

GlutenFreeInNYC

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A couple of times in the recent past, I've unknowingly eaten gluten (flour-coated French fries in one case, a wheat-free, but not gluten-free, brownie in another, and fish seasoned with soy sauce in another), gotten sick, and only then discovered that I'd had gluten. In these cases, at least, I know I didn't worry myself sick after eating gluten because I didn't even know I'd eaten gluten *until* I got sick. However, I've wondered if this reaction could perhaps just have beeen a result of not having had gluten for such a long time, kind of like the effect eating a ton of fiber would have if you hadn't had any fiber in years.

Sincerely,

GlutenFreeInNYC

Welcome to the board. IMHO this is the most telling part of what you have said. People who don't have problems with gluten do not get sick from consuming it.

If you feel the need to get a doctors diagnosis then you need to eat gluten at least 3 times a day for at least 3 months and then get tested. I have a feeling your body will give you the answer after you have been challenging gluten for a few days.

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My spouse eats gluten free at home, and a lot of times if and when we go out, he orders off the gluten free menu, as well. He's only getting it out on work/business lunches.

Since he started working at home this summer, he is now sometimes going days without gluten. He can, if he wants, switch back over and eat a glutenoid meal if he wants to. He doesn't react at all. I, on the other hand, wouldn't consider doing this, because I will react. I have enough damage anyway (neurological, physical) I don't really need any more. I also have no formal diagnosis. I suspect I am third generation to have this, the previous 2 undiagnosed, and may have inherited the tendency from both parents (both deceased and both had other conditions associated with celiac).

My reactions now are more typically trying to track down if and when I have eaten something cross contaminated from something that wasn't marked gluten free, but is generally considered to be so, and I cooked with it or ate it, or from a manufacturer that could have done the purity issue a lot better, or who changed manufacturing processes or labels. The biggest blowout we had here was with my large, lives in the house, allergic dog when the dog food manufacturer changed the ingredients on the formerly gluten allergy friendly dog food in the fine print... exposing both of us to gluten for a week, (he drools a lot) until I read the ingredients on the bag.... I was not happy.

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Welcome to the board. IMHO this is the most telling part of what you have said. People who don't have problems with gluten do not get sick from consuming it.

I don't agree with this completely.

You may have some type of gluten intolerance. You may have celiac disease. You may have neither or something else entirely. I have no idea.

You were raised following a diet of some type that restricted a certain type of food.

The food that was restricted during your childhood, etc. is causing you problems when you eat it.

I'm not sure that we can say that it is a result of a true intolerance towards that food or that it is your body's response to a new food that is causing a problem.

We know a lot more today (specifically regarding celiac disease and non-celiac gluten intolerance) than we did 20 years ago. My recommendation would be to seek out a gastroenterologist who is well-versed on both and get his or her opinion. Perhaps some testing could answer some questions for you (and also provide some interesting data / information / anecdotal evidence for curious / continuously learning doctor who is interested in your situation of being "banned" from gluten.)

In whatever you do, good luck.

And welcome. I joined here 6 months ago or so and there is a wealth of information. These people rock.

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My recommendation would be to seek out a gastroenterologist who is well-versed on both and get his or her opinion. Perhaps some testing could answer some questions for you (and also provide some interesting data / information / anecdotal evidence for curious / continuously learning doctor who is interested in your situation of being "banned" from gluten.)

Before the GI doctor can do any testing for celiac, the OP will need to do the gluten challenge. That doesn't mean a GI doctor can't be consulted for other issues but if someone is gluten light or gluten free they can't be tested for celiac.

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You were raised following a diet of some type that restricted a certain type of food.

The food that was restricted during your childhood, etc. is causing you problems when you eat it.

I'm not sure that we can say that it is a result of a true intolerance towards that food or that it is your body's response to a new food that is causing a problem.

I don't agree.

Gluten-free diet is not restricting you from any type of food, it only restricts you from eating three specific grains. You still eat bread or any other type of food, you still eat other grains and seeds with similar nutritional properties.

In this case, gluten wasn't any new food for the body (eating small amounts of gluten is enough to make the body familiar with it), plus the amounts that caused problems were very small (quite a few soy sauces made with wheat don't even contain detectable levels of gluten). Imho, it is much more probable that the reaction was caused by intolerance of some kind rather than a normal reaction to food that is not eaten regularly.

If in doubt, I don't see anything bad about eating gluten and see what happens. Either you get sick and realize it is causing you problems, or you won't, in which case you should still consider having the blood tests done.

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If gluten makes you sick you have celiac. I don't believe in gluten intolerance. I think it's all differing degrees of celiac and the tests are inadequate. That being said intolerance is still bad if someone wants to call it that.

Eat a bunch of gluten and see how you feel. If you get sick there's your answer. Then be more careful and be totally gluten free. You don't want all the health problems some of us had because we were diagnosed late in life.

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Thanks so much for your replies, everyone! You've given me lots of food for thought, and I already feel better just knowing that, in the likely even gluten really is a no-go for me, there's such a supportive community of people here.

Thank you again! Have a happy Halloween! :)

-GlutenFreeinNYC

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The only way to be completely sure is to gluten challenge for three months and have celiac testing. If you can't contemplate eating 4 slices of bread worth of gluten for three months, you're gluten intolerant at the least. :)

Celiac testing is NOT reliable and you might make yourself pretty sick on a full gluten diet so you have to decide if it's worthwhile. My own Dr. has told me not to worry about trying to be tested because my reactions are strong enough that I'll eat gluten-free either way. We are concerned about my thyroid autoimmunity in a long challenge too.

You could try eating gluten for a week and see what happens. For me the first sandwich on my "gluten challenge" was enough of a stomach ache that I lost interest. :lol:

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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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