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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.

Different Levels Of Intolerance?
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15 posts in this topic

I've been reading the forum a lot lately and was just wondering is there different intolerance levels? I ask because I never thought about my make up or hair shampoo etc as having gluten in, nor did I ever think about animal food, using completly different cookware etc. I've known for the last year I have celiac but its only since March that i took it 100% serious (and came out of denial) when my husband said enough is enough because I was ill all the time etc. Since then I've been a lot better but occasionally I still get stomach pains but Im not sure if its because I've accidently had something with gluten in it or what and have no idea how to find out. I guess Im mostly worried incase "its all in my head" (especially since a doctor I saw once about 5 years ago told me that my pains were all in my head because they said they had run loads of tests on me and didnt know what else it could be)

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I've been reading the forum a lot lately and was just wondering is there different intolerance levels?

My response to that would be a definite yes. My hubby and I are intolerant in totally different ways and have different sensitivities. He occasionally cheats when he is in town and sometimes gets away with it and sometimes not. I would never dream of cheating because of the dire consequences. I immediately changed all cosmetics, toiletries and hair products; he just the other day discovered wheat protein in his shampoo and started using my tea tree products.

Also consider that you may have some other intolerances that you were not aware of before avoiding gluten. I am also intolerant of soy (which I had suspected) but also tomatoes which I had never imagined. Also green pepper, but can do red pepper. The only way to find out is to eliminate the things you suspect (nightshade family is a big offender) and then challenge yourself by trying them one at a time. I challenged myself with tomatoes last night again, just to be sure, and sure enough, my head felt like it was plugged into an electrical outlet with current buzzing through it, I was gassy and had pounding heart.

Do not accept that non-diagnosis of "it's all in your head" although some of the symptoms can be, like my head last night :P

Neroli

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Sorry if this sounds a daft question but what are "the nightshade family" :unsure:

I hope Im not allergic to tomatoes, I love them...or even worse cheese, that would be devistating to me! Although Cheese isn't very healthy for me being as Im trying to loose weight! :rolleyes:

So how long should I cut a certain item out of my diet and try it again to know if I'm allergic?

should I do groups i.e dairy then narrow it down that way or go one by one? I'm not very good at this!

Thanks for the advice

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The problem is that gluten damages whether someone feels it or not. I would say intolerance is a black or white thing but how it presents itself is different for all of us. So, someone may be able to cheat and feel no symptoms while it is silently destroying villi. My friend's husband had no symptoms he could identify but had scalloping on his biopsy. He was only tested because their son came up positive.

There is a big learning curve but it is so worth it! Start with totally eliminating gluten and see how you feel. If symptoms remain, look at cutting out dairy. Then you will be able to tell if you have other intolerances. So of us do, some do not.

Welcome to the club! :rolleyes::P

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The problem is that gluten damages whether someone feels it or not. I would say intolerance is a black or white thing but how it presents itself is different for all of us. So, someone may be able to cheat and feel no symptoms while it is silently destroying villi. My friend's husband had no symptoms he could identify but had scalloping on his biopsy. He was only tested because their son came up positive.

There is a big learning curve but it is so worth it! Start with totally eliminating gluten and see how you feel. If symptoms remain, look at cutting out dairy. Then you will be able to tell if you have other intolerances. So of us do, some do not.

Welcome to the club! :rolleyes::P

I have totally eliminated gluten from my diet.

I found out last year in February (after ending up in hospital and being sent home because they didn't know what it was but I continued to go to my doctors until he finally found out) and tried eating as gluten free as I could but I don't like being fussy and being a burden on people. Over the summer I came to USA for 3 months and got so ill I couldn't cope so stopped eating it again for a while then in November I got married and the last thing I wanted to do was start causing a fuss (plus it was stressfull enough!). When I came back over to the USA on 28th December I should have started off on the right foot by not eating anything with gluten in it but I didn't. Then March came and my husband saw how I wasn't coping with eating the stuff I shouldnt and told me no more. Since then he has been my rock, he refuses to let me eat pizza etc when I feel like caving in, so since March this year I havent eaten anything knowingly containing gluten. I don't eat out often (and if I do its at the restaurant my parents own in which the chef knows exactly what I can and can't eat so prepares it all very carefully for me and uses seperate utensils etc to avoid contamination) but occasionaly I still get the pains randomly which is why I was asking if its possible to have different levels of intolerance meaning could I be more sensitive than I thought now that I've finally stuck to it and changed my lifestyle for good.

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I asked a related question here a few months ago. Bottom line is that we are all different and there are different systemic reactions to gluten. Despited being a fully diagnosed (blood and biopsy) Celiac, I have not had a noticable reaction the few times I've slipped and had a food with barley malt. Who knew table syrup would have that? I do have a noticable reaction to accidental wheat and don't think I've accidentally had rye or oats.

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You mentioned cookware and I wanted to tell you to consider having your own of some particular items. I got rid of all the wooden utensils and cutting boards I had as those seem to be really hard to clean. If you have a nice cutting board you could sand it down and seal again. Scratched nonstick and plastic storage ware I got rid of as well.

I do buy gluten free shampoos and lotions. I don't worry so much when I get my hair done but I figure there is a good chance I get some in my mouth when I am still bleary-eyed in the morning. :lol:

If you search the board you can find very detailed explanations about why we should avoid dairy initially. It's something about the ends of our villi being responsible for lactose digestion.

The biggest surprise item for me was frosting. Who knew that?

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If you have celiac, you have celiac. There are NOT different levels of intolerance. It's easy to be fooled that there are, however, because we all manifest symptoms differently. Unfortunately, our body's symptoms are NOT a good predictor of whether or not we are reacting to gluten.

Even very small amounts of gluten trigger an immune response in the gut that damages the villi and causes chemical changes in the digestive and - depending on your system - other areas of the body. You may or may not notice these symptoms because they may be minor or your body's healing mechanisms may keep up with them fairly well. That doesn't mean you're safe - doing damage even that your body isn't letting you feel still increases your chance for cancer, other autoimmune diseases, and so on. Damage you don't feel but your body isn't quite keeping up with (it's just below your threshold for detecting) will leave you open to nutritional deficiencies that can lead to osteoporosis.

Plenty of people have "silent celiac" - it's why people aren't diagnosed until they have a bone break from osteoporisis in their 20's. They have no other symptoms but extreme nutritional deficiencies that don't make sense in any other context.

So, no, there aren't levels. Whether or not you're going to get cross contaminated from shampoo is a debate that you have to have with yourself. Some people don't think it's worth the risk to be near a gluten containing product, other people don't think there's any way they could ingest these items. But just because you don't experience symptoms does not mean you're not doing damage.

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Search the board for the phrase "all in your head" and you will discover that is how doctors put the blame on *you* when *they* can't figure out what is really wrong.

Keep a detailed food diary and note when you have pains or other symptoms. You may find things are not as random as they seem! ;)

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Search the board for the phrase "all in your head" and you will discover that is how doctors put the blame on *you* when *they* can't figure out what is really wrong.

Keep a detailed food diary and note when you have pains or other symptoms. You may find things are not as random as they seem! ;)

It was very upsetting that the Dr said that, made me doubt a lot of things in myself.

Good idea with the diary, I didnt think of that!! Will give it a go for a few weeks!

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Im thinking of good replies when a Doctor says "It's all in your head"....

1. Yeah, so is your co-pay. Because I am not paying for this kind of service.

2. Of course it's in my head. Last time I checked a medical book, it says the brain controls everything. Where did you go to medical school?

3. I wonder if you would say the same thing if I was your wife? Are you divorced doctor?

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Im thinking of good replies when a Doctor says "It's all in your head"....

1. Yeah, so is your co-pay. Because I am not paying for this kind of service.

2. Of course it's in my head. Last time I checked a medical book, it says the brain controls everything. Where did you go to medical school?

3. I wonder if you would say the same thing if I was your wife? Are you divorced doctor?

haha I like it!!

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Sorry if this sounds a daft question but what are "the nightshade family"

no questions is ever daft! :)

Nightshades refer to plants that grow at night - and there is also another group called Morning glory plants - they grow in the morning part of the day!

Nightshades include: potatoe, tomatoe, peppers and eggplant.

My daughter cannot handle potatoe at all, but can handle tomatoe sauce in homemade chili ( no peppers) and ketchup. She doesn't like actual tomatoes (fresh) so never tried them for a reaction.... I know the reaction: "eeewww, mom I dont like tomatoe"

Sandy

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Oh Crikey, I eat potato ever single day almost in some form or another. I think I'll start eliminating things one by one and keep a diary. I've had really bad pains in my stomach the last few days amongst other problems, I don't think I can carry on like this really. :(

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If you have celiac, you have celiac. There are NOT different levels of intolerance. It's easy to be fooled that there are, however, because we all manifest symptoms differently. Unfortunately, our body's symptoms are NOT a good predictor of whether or not we are reacting to gluten.

But can't you have intolerance without having celiac? Or is this not true? My genetic testing came back negative but my antigliadin IgA came back at 57 (normal is something like 4-12). I did not get a biopsy. I'm confused as to whether I have celiac or not. I definitely have symptoms including very possibly osteoporosis and now that I have eliminated gluten, I feel pretty lousy when I accidentally have some.

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