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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.

How Much Ocd?
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18 posts in this topic

Hi, celiac disease has ravaged my brain pretty hard in the past 7 years. I've been gluten free for approximately 2 months straight and am beginning to get more function back in my brain. This is great, but now that I can think more I am becoming OCD about being gluten free. I know what foods to eat and not to eat and all that stuff, but how careful do I need to be, like how often do I need to wash my hands, etc?

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Hi, celiac disease has ravaged my brain pretty hard in the past 7 years. I've been gluten free for approximately 2 months straight and am beginning to get more function back in my brain. This is great, but now that I can think more I am becoming OCD about being gluten free. I know what foods to eat and not to eat and all that stuff, but how careful do I need to be, like how often do I need to wash my hands, etc?

It's great you are starting to feel the benefits of being gluten free - you are obviously doing it right.

As a rule of thumb, I always wash my hands before touching any food, which makes sense from a hygiene prospective. Always take extra care if you have to handle gluten foods (e.g. Preparing food for someone that isn't gluten free) that you wash your hands thoroughly. If you are out and about and can't wash your hands before eating, you could carry some wipes with you. At home I have my own cupboard for crockery and a draw for my own cutlery which I wash separately to ensure that gluten doesn't end up on it. You definitely need your own toaster if you eat gluten free bread so you don't get CC'd. Most of it is common sense, and once you get in a routine it becomes easier. Try not to stress too much about it - to the extent that you become obsessional. I live in UK and Coeliacs UK class food as gluten free if it contains less than 20 parts per million.

Hope this helps.

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Some things are basic precautions. Every label, every time. Everything flowerqueen mentioned. Because I actually have OCD it is difficult for me to separate what part of what I do that is normal precaution and what is me being mental. I live in a shared household and because of this before I cook I will get a fresh rag and clean the counters before I cook. I will then get a clean rag and clean the counters again. This seems completely reasonable to me. I have my own dishes, silverware, cookware, storage containers, cupboards, and pantry space. I have one section of counter that is mine also, although I still won't use even this without cleaning it first because frankly another rule I live by is never trust anyone. I won't put my gluten free dishes in the same dishwasher with the other dishes. Don't use the electric, or any other kind, of can opener if a gluten eater is using it, who knows what they opened last. (Why does no one think of this!)

I do agree that you should not stress to the point of becoming obsessional about it. The longer you do it, the more this all becomes second nature. Before you know it this will be what is normal.

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By 'ravaged my brain' do you mean that it has caused neurological damage? If you are a Celiac who gets neurological damage from gluten, then the recommendations are different than for those who only get gut damage. Doctors are not certain how much neurological damage is reversible, so docs recommend that those who get neuro damage be more cautious in avoiding glutenings as each one has the potential to cause irreversible damage.

If you are not discussing neurological damage specifically, to be honest? I think a lot depends on how safe you feel, what seems to be working for you, and how you are affected by gluten. My father and brother are Celiacs who get gut pain for a few days after getting glutened. They are moderately careful, use shared equipment at home that has been washed in the washing machine, wash their hands before touching food but not at any other point during the meal, get gluten-free food at restaurants but don't talk with the waiters too much about it, and don't worry about gluten in their hygiene products unless it's made to be put on the lips, like chapstick. They do okay, get a mild glutening once every couple months maybe, but overall they would say they feel healthy and fine and this is working for them.

My daughter and I have more severe symptoms, including neurological, and our symptoms last for weeks, so we are much more cautious. We are extremely careful, have a gluten free household now (even the pet food), wash our hands before they touch our lips or our food, don't eat out anymore, and don't use products that contain gluten if they contact our hands or lips, like hand lotion or shampoo (washed off over the face). And even with that, we, too, get glutened, although less often than my father.

After my experience with my family, I'm firmly convinced that our caution level is an individual thing, because our reactions and sensitivity level seem to be individual, too. My father started out much less cautious and got sick a lot more, so he altered his behavior until he felt better. My brother started out less cautious and like my dad, he grew a bit more cautious until he felt better. Myself, and my daughter started out at my dad's new 'normal.' We had to get even more cautious than that before we started feeling better. In the end, it took a little time, patience, and trial and error to figure out what worked for all of us and gave us the physical health we were hoping for. But we got there.

It's pretty normal to feel a little freaked out at first, because you just look around and think: I can't even see this stupid gluten, how do I know it's not getting into my food and into me? That fades with time (kind of like my fear of scorpions when I moved to the SW, LOL). You realize that you CAN tell when you've eaten gluten, and you'll get better at figuring out what a reaction feels like, even a small one. Every day you eat gluten free, you'll be able to tell more how you're doing, how the diet is working, and how much care is needed for YOU. You might be able to relax a little, you might have to be more cautious, but you'll figure it out pretty quick. :-)

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To me, there is nothing wrong with being obsessively careful. I tend toward OCD and have always washed my hands more often than most people. As a matter of fact, I miss my psoriasis a little because I no longer have a good excuse not to shake hands. But after I DO shake hands with someone I can't WAIT to go wash them! I've ALWAYS been that way and it has cut down on the number of colds I get. Now it also cuts down on the number of glutenings I get as well.

I live alone but I still scrub everthing before I cook. I wash my hands after touching the cat. I won't even have a glass of water at someone elses house, just in case they baked something earlier and there is flour dust in the air. That may sound crazy but that actually HAPPENED to me in the early days.

I say be as obsessive as you want and don't feel uncomfortable about it. :)

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Gluten is one instance where you are encouraged to be OCD :lol:

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Gluten is one instance where you are encouraged to be OCD :lol:

:lol: ....but not to where one becomes paranoid that gluten "lurks " everywhere. That will just make us anxious and cause wrinkles (and who needs those?)

I guess I could be accused of being a tad on the OCD side myself, but it was long before I had to deal with being a gluten detective.

Some of us are just "particular" about the way we like things done and some of us are very "neat". I'll leave it at that. :)

As for brain function impairment, I suffered from it, too for 3 years (I refer to that time as "gluten head hell") and I can tell you, it does get better and better as you heal. My brain is functioning almost as well as it used to before I became ill from celiac.

(But I still cannot do anything involving algebra, geometry or trigonometry, so I did not suddenly become any more mathematically inclined either. It's why I married the hubs.)

You're doing fine! Hang in there.

Soon, this will be your "new normal" and you will not worry so much.

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If it helps at all, I am the least OCD person I know, except for two things- gluten and driving. I have Celiac and was once in a very bad accident, so those two things make sense. I treat my kitchen like it's full of gluten, even though no gluten ever comes in it. I figure, I've got the process down pat, it doesn't take me any longer to cook or eat something than it takes anyone else, what's the harm in being as careful as possible? I have only ever been glutened by not reading a label or a restaurant, I have never done it to myself in my home. So I figure my process is workin just great!

Basically, I do not touch food unless I've just washed my hands and touched nothing but the clean towel, and food that's dropped on the counter is no longer safe even if I've cleaned it. I've gotten very good at keeping my left hand clean while I'm cooking and only touching other stuff in the kitchen with my right hand. (my brand new dishwasher doesn't hurt the process either! lol)

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(But I still cannot do anything involving algebra, geometry or trigonometry, )

I have always just figured that that stuff is only for nerds and freaks. :blink: - but what about Jess?? :unsure:

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Gluten is one instance where you are encouraged to be OCD :lol:

Haha, yes, I channel my OCD tendencies into keeping myself safe from CC. Better than the other useless things I tend to do!

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Lets see:

I wash hands very often.

I do not eat outside of my apartment with the exception of the small snack i must eat on mondays (8-12 then 1-7pm classes, no choice but to). But when i do, i ocd clean my hands and walk around with clean hands in my sleaves rofl.

I do use a dishwasher as standing and doing dishes (even with gloves) kills me due to the smell and whatnot. Easier to just open a window and run the washer.

I always use a dish to set things down in when i cook; a plate or something.

Everything gets rinsed off regardless if it is clean or not.

I don't touch my face when i'm out and about (only if i've just washed my hands).

I no longer eat out in resteraunts

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To me, there is nothing wrong with being obsessively careful. I tend toward OCD and have always washed my hands more often than most people. As a matter of fact, I miss my psoriasis a little because I no longer have a good excuse not to shake hands. But after I DO shake hands with someone I can't WAIT to go wash them! I've ALWAYS been that way and it has cut down on the number of colds I get. Now it also cuts down on the number of glutenings I get as well.

I live alone but I still scrub everthing before I cook. I wash my hands after touching the cat. I won't even have a glass of water at someone elses house, just in case they baked something earlier and there is flour dust in the air. That may sound crazy but that actually HAPPENED to me in the early days.

I say be as obsessive as you want and don't feel uncomfortable about it. :)

That's how I've been, but my fingertips have been getting sore and dry, supposedly from washing my hands too often.

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Gluten is one instance where you are encouraged to be OCD :lol:

:)

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:lol: ....but not to where one becomes paranoid that gluten "lurks " everywhere. That will just make us anxious and cause wrinkles (and who needs those?)

I guess I could be accused of being a tad on the OCD side myself, but it was long before I had to deal with being a gluten detective.

Some of us are just "particular" about the way we like things done and some of us are very "neat". I'll leave it at that. :)

As for brain function impairment, I suffered from it, too for 3 years (I refer to that time as "gluten head hell") and I can tell you, it does get better and better as you heal. My brain is functioning almost as well as it used to before I became ill from celiac.

(But I still cannot do anything involving algebra, geometry or trigonometry, so I did not suddenly become any more mathematically inclined either. It's why I married the hubs.)

You're doing fine! Hang in there.

Soon, this will be your "new normal" and you will not worry so much.

That's encouraging to hear :)

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I wash hands very often.

But don't your hands get really dry and sore from washing so much?

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By 'ravaged my brain' do you mean that it has caused neurological damage? If you are a Celiac who gets neurological damage from gluten, then the recommendations are different than for those who only get gut damage. Doctors are not certain how much neurological damage is reversible, so docs recommend that those who get neuro damage be more cautious in avoiding glutenings as each one has the potential to cause irreversible damage.

If you are not discussing neurological damage specifically, to be honest? I think a lot depends on how safe you feel, what seems to be working for you, and how you are affected by gluten. My father and brother are Celiacs who get gut pain for a few days after getting glutened. They are moderately careful, use shared equipment at home that has been washed in the washing machine, wash their hands before touching food but not at any other point during the meal, get gluten-free food at restaurants but don't talk with the waiters too much about it, and don't worry about gluten in their hygiene products unless it's made to be put on the lips, like chapstick. They do okay, get a mild glutening once every couple months maybe, but overall they would say they feel healthy and fine and this is working for them.

My daughter and I have more severe symptoms, including neurological, and our symptoms last for weeks, so we are much more cautious. We are extremely careful, have a gluten free household now (even the pet food), wash our hands before they touch our lips or our food, don't eat out anymore, and don't use products that contain gluten if they contact our hands or lips, like hand lotion or shampoo (washed off over the face). And even with that, we, too, get glutened, although less often than my father.

After my experience with my family, I'm firmly convinced that our caution level is an individual thing, because our reactions and sensitivity level seem to be individual, too. My father started out much less cautious and got sick a lot more, so he altered his behavior until he felt better. My brother started out less cautious and like my dad, he grew a bit more cautious until he felt better. Myself, and my daughter started out at my dad's new 'normal.' We had to get even more cautious than that before we started feeling better. In the end, it took a little time, patience, and trial and error to figure out what worked for all of us and gave us the physical health we were hoping for. But we got there.

It's pretty normal to feel a little freaked out at first, because you just look around and think: I can't even see this stupid gluten, how do I know it's not getting into my food and into me? That fades with time (kind of like my fear of scorpions when I moved to the SW, LOL). You realize that you CAN tell when you've eaten gluten, and you'll get better at figuring out what a reaction feels like, even a small one. Every day you eat gluten free, you'll be able to tell more how you're doing, how the diet is working, and how much care is needed for YOU. You might be able to relax a little, you might have to be more cautious, but you'll figure it out pretty quick. :-)

My brain is supposedly healthy based on all of the MRI's and what not, but I mean just neurological symptoms like you and your daughter

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But don't your hands get really dry and sore from washing so much?

I love vanicream :P

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I used Neutrogena Norwegian formula, the smell-free one, I discovered it years ago when I was working a housekeeping job and my hands were crackin & bleedin! The Norwegian Formula hand cream doesn't hurt when you put it on no matter how messed up your skin is, every other lotion I tried when my hands were that bad hurt like a mother.

Now, I've gotten into the habit of using almond oil to shave my legs, and on the days I don't shave I put the oil on after the shower anyway, and I rub it all over my hands then too. Haven't needed lotion in a long time,that almond oil stuff is magic.

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