Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Much Ocd?
0

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :-)

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

(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:

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

:)

0

Share this post


Link to post
Share on other sites

: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 :)

0

Share this post


Link to post
Share on other sites

I wash hands very often.

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

I love vanicream :P

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,146
    • Total Posts
      919,572
  • Topics

  • Posts

    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,178
    • Most Online
      1,763

    Newest Member
    Sarah.e.may9602
    Joined