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Noel1965

Want To Give Up

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Ok all - I check my ingredients very carefully and I have not knowingly eaten anything with gluten for 9 months and I do not feel one iota better than I did before. I know it must be cross contamination and I try my best to avoid it......I very very rarely eat out anymore - maybe 3-4 times in 9 months (and ate salad with no dressing when I did). Hate to say it but my husband and daughter are not willing to go gluten-free with me, so there continues to be gluten in my home and there's not much I can do about it. I have bought all my own pots/pans/utensils and cook myself seperate meals. I have my own counter area for my food prep. I wash my hands constantly and have not kissed my husband in 9 months......because I do not feel any better I feel like the payoff of "the chance of feeling better one day" does not outweigh the losses of life I am feeling. I have been thinking that I would give it one full year to see if there are changes but that year is soon coming to a close and I will have to make my decision. If I'm never going to be able to get the celiac under control - why am I putting myself and everyone else through this?

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Hang in there, Noel!

It astounds me how much hidden gluten there is. The other day I got an email about a brand of paper towels that now uses gluten in its adhesive or something....WHY? As if this isn't hard enough already.

Have you double checked all your personal care products? Especially things like lipsticks and chapsticks that you would undoubtedly be ingesting all day.

How did you get diagnosed adn what symptoms are you still showing? I hate to say it, but it has helped a lot cutting out dairy for the past few weeks. cutting out gluten stopped about half of what I was feeling, but I still felt pretty crummy (just not quite as bad). Have you experimented with any other intolerances?

Good luck

Courtney

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Hi Courtney - I know it is EVERYWHERE! And that's why I feel like it is not even possible to do. I guess I have seen that some of you on here HAVE made it so it is not entirely impossible but that's how I'm feeling right now. Yes I have checked all my personal care products including lipstick. My symptoms include GI problems (feels like a baby kicking inside me), diarhea 5-10X's /day for a year straight, headaches/migraines, neurological problems(vision problems, tingling hands/feet), constant brain fog, depression. This has all been going on for about 10 years - but my last doctor thought it was stress and my family thought I was a hypochondriac. My son passed away last year at the age of 12. He was severly disabled and I had no time to look after myself. Last year I finally decided to find a new doctor - she thought of Celiac on the first appointment. I had the bloodwork done and she said she was fairly certain I had celiac disease but sent me for the biopsy to confirm and yes she was right. So thankful that I finally made a change in doctor.

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I would suspect other food intolerances. Have you cut out dairy? Casein is a common intolerance for celiacs. It gives me the same reaction as gluten does. I'd cut out all the common allergens for a few weeks until you feel better, then add them back one at a time watching your reaction for a week or two before adding back the next one.

Oh, and start kissing your husband again, just be sure he brushes first.

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Carla - thank you - you made me laugh! I know I should kiss my husband, it just seems so "sdkjlsfdjk" to have to send him to brush his teeth before a kiss. I am going to try to take out a few more things out of my diet but I do not know where you all get so much willpower. You are all to be commended!!! Your idea of the casein is good - International Delight Coffee Creamer seems to affect me - but it's my favorite!!! K - that will be the next thing to go. Thanks Carla!

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Carla - thank you - you made me laugh! I know I should kiss my husband, it just seems so "sdkjlsfdjk" to have to send him to brush his teeth before a kiss. I am going to try to take out a few more things out of my diet but I do not know where you all get so much willpower. You are all to be commended!!! Your idea of the casein is good - International Delight Coffee Creamer seems to affect me - but it's my favorite!!! K - that will be the next thing to go. Thanks Carla!

My husband brushes his teeth when he gets home and everyone eats gluten-free at home .... it becomes natural.

I used to like that creamer, too. Vance's Dari-free is good. It's a powder that you mix with water. I didn't really like it as much as cream, but yesterday I mixed it with almond milk instead of water and it was GREAT!!! The almond milk was too watery, yet I didn't like the flavor of just the Vance's in my coffee. The Vance's thickened up the almond milk to more of a cream consistency.

I get my willpower to stay off casein the same way I get it to stay off gluten -- I get so sick if I eat it!!

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Carla - Thank you for your time....where do you get almond milk and this Van's powder. I have never heard of either of them....I am in Alberta Canada

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have you re-done your celiac blood panel and/or biopsies? this can help-potentially-show if it is still Celiac related or other issues. It would give you a good starting point. Hang in there---

Laura

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Guest cassidy

In the beginning I too was very frustrated. My husband isn't gluten-free so I have to be careful at home as well. I don't get myself sick at home anymore, so it can be done.

You said you aren't feeling better so I'm guessing that means that you feel bad when you are glutened. How can you give up? I think maybe giving it a time frame made it seem temporary and something that you don't have to figure out. If you say this is your new lifestyle and you are going to make it work no matter what, then maybe you would be more committed and have an easier time giving up other foods.

There must be something else going on if you aren't feeling better. I would recommend a basic diet and see if you can figure it out.

How I understand things is that the gluten does damage and the longer we eat gluten the more damage we may have. You may feel crappy now, but what if you get thyroid problems or cancer because you didn't want to do this. I hope none of that happens, but these are real concerns.

I know I went through a type of grieving process when I went gluten-free and it does take time to accept things. I still have days when I don't accept it and I get frustrated that I can't just go pick up a pizza. I don't know how you deal with things, but maybe you can get some help so you will be mentally ready to do what it takes to figure this out so you can feel better.

It will get easier although it doesn't seem like it now. If you give up, you give up on the possibility of ever getting better.

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In the beginning I too was very frustrated. My husband isn't gluten-free so I have to be careful at home as well. I don't get myself sick at home anymore, so it can be done.

You said you aren't feeling better so I'm guessing that means that you feel bad when you are glutened. How can you give up? I think maybe giving it a time frame made it seem temporary and something that you don't have to figure out. If you say this is your new lifestyle and you are going to make it work no matter what, then maybe you would be more committed and have an easier time giving up other foods.

There must be something else going on if you aren't feeling better. I would recommend a basic diet and see if you can figure it out.

How I understand things is that the gluten does damage and the longer we eat gluten the more damage we may have. You may feel crappy now, but what if you get thyroid problems or cancer because you didn't want to do this. I hope none of that happens, but these are real concerns.

I know I went through a type of grieving process when I went gluten-free and it does take time to accept things. I still have days when I don't accept it and I get frustrated that I can't just go pick up a pizza. I don't know how you deal with things, but maybe you can get some help so you will be mentally ready to do what it takes to figure this out so you can feel better.

It will get easier although it doesn't seem like it now. If you give up, you give up on the possibility of ever getting better.

Hi Cassidy - I am dedicated to being gluten free. And I know of all the possible consequences if I do quit the diet. But is the diet doing any good if I can't seem to find all the sources of cross contamination? Is being rid of 99% of the gluten helping me as far as the possible consequences. My doctor had said NO. That all gluten must be gone in order for my intestines to heal. And I'm frustrated that I can't seem to find what is still making me sick. I don't want to spend my entire life being obsessed about this if I am never going to get better or be able to find all the sources of contamination. I'm just frustrated Cassidy.

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When I first went gluten free, it felt like EVERYTHING was contaminated.

Try going right back to basics again. Check everything, your spice rack, the spreads on your toast, everything.

Have you been diagnosed celiac or were you trialling the diet? And have you considered another intolerance, like lactose?

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I am constantly impressed by my willpower.

True, as Carla said, most of us just don't want to get sick!

But I was having migraines like you - almost on a daily basis. And I'd had enough. I wouldn't call it willpower so much as desperation - at some point you become desperate to figure out what is wrong with you and will do anything it takes to figure it out. Sure. Stuff smells really good. And I miss things. And I'm still in denial. But I would try doing an elimination diet and see if it helps at all.

Good luck and keep us posted!

Courtney

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Hi Noel,

Your symptoms sound like you are still getting gluten. Also, as has been said, many people

with celiac also have a lactose intolerance.

Some individuals can take up to TWO YEARS for the gut to heal and to start feeling better. I

know that's not what you want to hear, but it's worth the effort. I've been gluten free for

32 years.

Celiac is hereditary, my two full sisters have/had it and one of my half sisters had it (I say had

because I lost one sister last year and the half sister this year). With my half sister's diagnosis,

we know which side of the family it was from. One of my half sisters on my mother's side tested

negative, so it's from my father's side.

I don't know if West Vancouver, BC is near Alberta, but there's a Whole Foods Market there and

they usually have a good selection of gluten free foods, including the Almond drink.

Bill

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Jay, Bill and Courtney - Thank you for your input....... I think the next step is to start eliminating other foods. If I could only have 1 good day and feel better for even 24 hours then I would have the strength to continue doing this diet. Some of you have said that it is not willpower that helps you keep gluten free (as well as dairy, etc.) but the not wanting to feel sick that keeps you going. It is more difficult if you have not had a day of feeling well and you can't feel the difference. It sounds like many of you can tell when you have had gluten. I can't - as my symptoms are nonstop.......thus the frustration.

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Noel,

I can empathize with you in so many ways! My household isn't completly gluten free (although I've threatened the kids recently that unless they start watching their bread crumbs it will be!) I am also there with the migraine sufferers as well. It got to the point I was almost afraid to leave the house alone incase one hit. The kissing thing...we just had a discussion about that last week on here...as a matter of fact last night we were heading to bed and my husband went in our bathroom and started brushing his teeth, and the laughing began! I've also wondered if it is truely possible to be 100% gluten-free...but I give it every shot I can. After my last bad doctor induced glutening when I had my biopsy I can tell you I started out extremly basic. I ate a lot of rice, very plain low fat meat, etc...you get it I"m sure. It seemed to soothe my stomach and my mind because there wasn't much room for error. I also seemed to recover much more quickly. I then slowly started to add things back in. As far as the diet goes...it is frustrating at times even after almost a year and a half. I have found myself sitting here staring at a can of Progresso soup that I have seen on some gluten-free lists but I'm too afraid to eat it. The people here on the board are an inspiration to me, so come here often! When I"m down they offer words of encouragement and ideas to help. There are more great looking recipes than I had ever dreamed were possible. Anyways...good luck to you and I hope you are feeling better soon!

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Noel, I get Vance's Dari-Free from the health food store. You can buy it online if you can't find it. The almond milk I get from the regular grocery or from the health food store. It comes in boxes that are not refrigerated, but you do refrigerate them after opening.

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I'm so sorry you still feel bad.

I've only been gluten free for 3 months, and I still have days that I know everything was gluten free but I feel cruddy. When I have a string of bad days, I go back to eating nothing but brown rice, bananas and zucchini, and water. Those are my "safe" foods. After doing that for a few days, when I start to feel better, I start adding items back in, one per day. Like an elimination diet. It's a pain, but when I start to feel better, it makes it all worth it.

Just remember you are changing your entire life, and that's not an easy thing to do. It will get easier, you will get better, and it will all be worth it. Hang in there!

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Guest AutumnE

I had to do an elimination diet to feel better and am still getting use to it.

I eat plain meat, veggies, virgils root beer( on occasion when I need a pop fix), and fruit it eliminates corn,soy, dairy and gluten but I feel so much better and my diarrhea stopped. My daughter and my husband are gluten free also, it makes it alot easier.

My daughter is only 2 1/2 so she eats what I fix her and I make sure I have gluten free bread, pretzels, animal crackers and the fake pastas so she doesnt feel like she is missing out. My husband does it by force ;) but he doesnt want to eat it in front of her anyways because it would be cruel and she wouldnt understand.

I had a problem with cc with my husband at first though. He would reach into the food with his fork after touching gluten food or touch bread before he went into the lunch meat. Do you have little containers separate so you can keep your food on your own without anyone touching it. I have made large amounts of food and freeze them as entrees and I can pull it out the night before and microwave it the next day.

Its not been easy giving up everything but I feel so much better that it is worth it.

I hope you feel better soon.

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For me, in order to remain healthy, I need to be gluten-free, soy-free, dairy-free and I need to stick to an all natural organic diet. If I so much as eat too much processed sugar, too much pre-packaged gluten-free food, or too many vegetables that aren't organic, I start to feel really "glutened" I know it sounds crazy, but I think it's worth pointing out, because being paranoid over CC can be a pain, and sometimes feeling better can be as simple as changing your diet in other ways beyond eliminating gluten (I really don't think CC is always to blame :ph34r:). I do think we're all different, so what works for me might make another person feel horrible, but it's worth exploring and working towards figuring it out anyway...

:)

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Noel,

I might have missed it, but did you say if you have or haven't had your celiac blood panel re-done? Or the biopsy?

I'm happy you have found the support you need...this board is such a blessing in our lives, amongst all the uncertainty!

Laura

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I gotta say, I think that if gluten was the only problem, cc or no cc you should have noticed some little improvement by now. It sounds to me like your even more careful than I am, and I'm really careful!

Eliminating dairy is a good place to start, and looking at other possible food intolerances/allergies is the next.

After that, I'd consider seeing a doctor for other possible problems on top of the celiac. It might be that it's not the answer to everything, as nice as it would be if it was.

Pauliina

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Hi, sorry you are having such a miserable time. I can relate.

I went gluten free at the beginning of May and dairy free at the beginning of June and I saw about a 50% improvement in my symptoms and then I had dreadful pain up my spine and after that went away a pain that wrapped itself around my torso and seemed more in the tissue than the organs began. I felt that although gluten was an issue I wasn't convinced it was my only issue. I was recently diagnosed with Lyme Disease and the symptoms that you mention fit with Lyme. I actually saw a doctor at a private clinic in Calgary, I'm from Winnipeg, after I learned that it is difficult to get the right tests here in Canada. The Calgary clinic uses a lab in the states. PM me if you want more information.

We are also talking about this on the "OMG I might be able to eat dairy" thread.

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I can relate to the migraine thing, and I agree with many of the others who suggest that you look at the possibility that you may have other food allergies / intolerances. In my experience my crippling migraines stopped almost immediately and completely (after 20 years + of suffering!) when I eliminated not only gluten but peanuts, sugar, chocolate and diary from my diet. I find that now I am reacting to eggs, potatoes :blink: , but I take it in stride as part of the process. This all gets overwhelming at times but please hang in there, and lean on us when you have to! I wish you all the best!

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Noel, I see that you have come to the realization that there is something else that might be making you sick.

I will just put in my two cents which is the same thing that I always say.

Give up dairy & for a time quit eating any grains, yes all those gluten-free breads & crackers etc.

I recommend the book "Superfoods" by Steven Pratt, M.D. and Kathy Matthews, just ignore the parts about dairy and wheat :blink: When you have celiac and have damage of the intestines the goal is to achieve a nutritious diet - not to find replacements for the wheat things that we were eating.

Some people can eat all the gluten-free goodies with no problems, but those people are busy doing all the fun things in life, not staying home feeling miserable. Or worse working and sick at the same time. :(

I hope you are better soon.

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