Help, Keep Getting Gluten!

[key]

I have really been depressed over this whole thing. I feel as if I am trying to stay gluten free, but I guess I just need to make some changes. When I started on the diet I felt great pretty soon after. I had had bone pain, especially in my legs, constipation, abdominal pain especially at night, irritability, mild depression, etc. All of the sudden about 4 months into the gluten free diet, I am feeling pretty rotten most of the time. Bone pain, fatigue, constipation, horrible waves of nausea, all of which is making me depressed.

I was basically trying to feed my whole family gluten free for months, but felt that their diet was lacking (also vegetarian), so I started cooking two meals almost every meal. THe gluten and then gluten free for my son and I. I also have never bought separate pots or checked on hair products. I try and wash my hands.

Anyway, I feel like I am dying of something, because I feel so bad. Can this all be from celiac and getting gluten. I know I have to be run down. I had a fever last week with sore throat that I still have seven days later and I just feel wasted! No one else in my family got sick, but me. I exercise everyday and try and eat healthy.

I guess I am just wondering how to make this all work. I hate to place my whole family on this diet, but I feel like I am going crazy trying to wash in between bread, etc. I still haven't found a good gluten free bread. Everything else I have found pretty good substitutes.

Does it sound like I am getting gluten or is this something else?

Thanks for listening. I just feel like I am trying so hard, yet failing at this so miserably! Anybody know about Clinique make up?

Monica

[julie5914]

I felt the same way, and I was getting gluten. I am also about 4 months in, felt good at first, and then got worse. I am apparently more sensitive to it than ever before. I was getting it from some frozen yogurt and who knows what else. I threw out all the shampoo with wheat, wash my hands more often now and cook my food first before I do anything with gluten. I am trying to be more careful about only eating foods with questionable ingredients like "natural flavors" and "modified food starch" only when I know it is a company that will list out wheat at the bottom. Hope this helps - I went through a myriad of tests, also feeling like I must have cancer, but I was just still getting gluten. Celiac is a very big deal, and gluten is absolute poison for us - more than ever before once you go on the diet.

[julie5914]

I meant to answer your clinique question - I use their perfectly real foundation, some type of lip gloss and eye touch tints. I had to list the name and color of each though to get them to tell me if they were gluten-free. All of them were, but I would have to contact them again if I want to change colors or types. So I am switching to Bare Minerals when I get paid.

[key]

Thanks Julie,

I am assuming I am getting it from somewhere. I don't eat out anymore, because I am tired of being sick. I also wasn't being a hundred percent careful with some stuff. I think my motto now is that it has to say gluten free on it for me to eat it. AT least until I feel better again. What really irks me more then anything are brands that don't have an email or a phone number on them. I don't like any kind of food enough to feel as rotten as I have felt!

It is so frustrating, because my hairdresser just bought me a new shampoo to try with her discount, and I spent $25.00 on it and then remembered this morning to check the ingredients and there is wheat starch in it! I just wish someone could make this whole thing easier.

Thanks for the Clinique info. I need to call about the lipsticks I am using. It is just so annoying when you call and don't get anyone on the phone, etc.

I think I am making my house gluten free for the time being. At least until I feel better.

THanks,

Monica

[VegasCeliacBuckeye]

Sorry to hear about your pain and frustration....you may not like this next morsel of advice/reality.

Some people with celiac when going through the "healing process" become ultra sensitive and even "sick for no reason" --- you sort have to accept that your body is healing itself and may react adversely to some foods that normally never gave you a problem.

One thing that helped me was I kept a journal and labeled a day with a red, yello or green.

RED = pain and suffering

Yellow = General sense of Malaise

Green = Felt Good

This way I could keep track of what I was taking into my system and after a month I could see some items that were eaten on the same day or day before that kept coming up ( we all are different).

I also went 2 weeks (OMG -it sucked) with only eating steamed veggies ( usually spinach), white rice and grilled chicken with salt/pepper (+ Water, OJ and sometimes milk).

After 2 weeks, I felt better than I had in 6 months --- I also began adding food into my diet that I knew I could take --- It was here that I made my calandar of "red-yellow-green" foods....

I admit this was radical, but I WAS SO MAD ABOUT BEING SICK ALL THE TIME!!!!

It does work, it just takes discipline...

Hope this helps

Hope you feel better...

[quantumsugar]

I've been going through the exact same thing the past few months. I got so much better right away, and then after that initial improvement, wham! I feel like crap again. Here's what helped me:

Beauty products: I threw out everything that I didn't know about, from mascara to moisterizer. I was already using some Bare Escentuals, now I use that and Dove. (BE is the best makeup ever).

Food: After being depressed for weeks the last time I got glutened, I decided to cut everything that could be hurting me for a month to see if I improved. For me, that meant cutting out any possible source of gluten, dairy and soy (neither of which I knew I had a problem with). I went to only: meat, rice, and fresh produce (and salt/pepper/oil). You can try cutting dairy and soy for a week, then adding back in one at a time. If you have additional sensitivities (common at this stage), that could be what is making you feel bad.

It also meant, that meant no more going out, no more sharing dishes/pots/pans, obsessively washing hands. If it drops on the countertop, I don't eat it... (my roommates think I'm OCD now).

All this seemed kinda crazy, but so did hurting myself by not being careful. The good news is, I'm finally starting to get better for more than a day or two at a time.

Good luck, (Another) Monica

P.S. I've been going through all this (and going crazy about it) lately. PM me if you ever want to talk more.

[kimjoy24]

One thing that helped me was I kept  a journal and labeled a day with a red, yello or green.

RED = pain and suffering

Yellow = General sense of Malaise

Green = Felt Good

This way I could keep track of what I was taking into my system and after a month I could see some items that were eaten on the same day or day before that kept coming up ( we all are different).

<{POST_SNAPBACK}>

I keep a food journal as well, but I definitely like your color coded system. (Right now I just use smiley/sad faces to distinguish between good and bad days).

[key]

I guess I will do the same thing. I think it would be easier if I was the only one that I had to worry about feeding! HA! I have three boys under 6 and I am homeschooling the oldest. I feel like my life is a bit chaotic! THen when you feel aweful it is hard to have the energy to do what you need to do. I just got rid of everything with wheat. I know I am not as obsessive as I should about touching it and then about skin products. I haven't checked clinique yet and I use their lipstick, but not now. Plus I am going to get new pots and pans for my son. I can't afford to feel terrible all the time. I already eat a pretty simple diet. I don't eat alot of dairy and I don't buy foods with alot of preservatives, etc. I can do better though I am sure. What I need to do is learn to cook more creatively with tofu, vegetables. I swear if I hadn't grown up not eating meat, then I would, but it is so against what I am used to. Don't know how to cook it, etc.

I am just glad to know that I am not alone and that others have had the same experience. I know if I talk about this with anyone other then someone with Celiac, they think I am nuts! TO even think you need to check your makeup and worry about what your food touches. THen to understand how getting gluten can affect your whole body!

Thanks for sharing your advice. I think I will start keeping a food journal.

Monica

[Rachel--24]

I keep a food journal as well, but I definitely like your color coded system.  (Right now I just use smiley/sad faces to distinguish between good and bad days).

<{POST_SNAPBACK}>

How funny....thats exactly what I do. If its just an OK day I have a face with just a straight line mouth. No smile or frown.

[skoki-mom]

Monique,

I use Clinique as well, so I e-mailed them and this is the reply I got:

Thank you for your interest in Clinique.

In response to your inquiry, the following products contain Gluten:

Moisture In-Control

Moisture On Call

Moisture On Line

7 Day Scrub Cream

Anti-Gravity Firming Lift Cream

Repairwear Intensive Day Cream

Repairwear Intensive Night Cream

Repairwear Intensive Night Lotion

Superdefense Triple Action Moisturizer for normal to dry

The following products do not contain gluten:

Dramatically Different Moisturizing Lotion

Quickliner for Eyes

Cream Shaper for Eyes

Water Resistant Eyeliner

Almost Lipstick

Colour Surge Bare Brilliance Lipstick

Colour Surge Lipstick

Colour Surge Lipstick Metallic Finish

Cream Shaper for Lips

Different Lipstick

Glosswear for Lips

Glosswear for Lips Sheer Shimmers

Long Last Soft Matte Lipstick

Long Last Soft Shine Lipstick

Moisture Sheer Lipstick

Quickliner for Lips

We trust that the above addresses your concern. We hope you will look to

Clinique for all your skin care and cosmetic needs

[skoki-mom]

Monique,

I use Clinique as well, so I e-mailed them and this is the reply I got:

Thank you for your interest in Clinique.

In response to your inquiry, the following products contain Gluten:

Moisture In-Control

Moisture On Call 

Moisture On Line

7 Day Scrub Cream

Anti-Gravity Firming Lift Cream

Repairwear Intensive Day Cream

Repairwear Intensive Night Cream

Repairwear Intensive Night Lotion

Superdefense Triple Action Moisturizer for normal to dry

The following products do not contain gluten:

Dramatically Different Moisturizing Lotion

Quickliner for Eyes

Cream Shaper for Eyes

Water Resistant Eyeliner

Almost Lipstick

Colour Surge Bare Brilliance Lipstick 

Colour Surge Lipstick 

Colour Surge Lipstick Metallic Finish 

Cream Shaper for Lips 

Different Lipstick 

Glosswear for Lips 

Glosswear for Lips Sheer Shimmers 

Long Last Soft Matte Lipstick 

Long Last Soft Shine Lipstick 

Moisture Sheer Lipstick 

Quickliner for Lips

We trust that the above addresses your concern.  We hope you will look to

Clinique for all your skin care and cosmetic needs

<{POST_SNAPBACK}>

Doh! Sorry Monica, for calling you Monique!

[mytummyhurts]

I'm not trying to alarm you or make you think that you may have another disease in addition to celiac. But I just wanted to let you know my experience. I have celiac disease and mixed connective tissue disease, which is another autoimmune disorder. The mctd didn't start up until after I was diagnosed with celiac disease. People with one autoimmune disorder are more liking to get another. Anyway, I do have similar symptoms when I'm in a flare up. My throat starts to hurt really bad (I had a sore throat for about two months earlier this year), I get really tired, I have a fever, and my muscles hurt and are weak. I also have joint swelling/pain and reynaud's syndrome (fingers turn white/purple when cold). I'm not saying that you have anything else, but you may want to go to a doctor and explain your symptoms and have tests done.

How is your son doing on the gluten-free diet? Do you think that he is improving?

[key]

Lori,

Thanks for the list of clinique products. AT first I didn't see the Do NOt on the bottom listings and thought, Oh great! I am not using any of the one's with gluten in them.

For now I have cut out McCann's oats and that seems to have helped. Also some other food brands that I hadn't been able to contact.

Thanks,

Monica

[julie5914]

Hey Monica,

I am still in the boat with you, and I am 99% positive I have no gluten in my diet. I think after we get through this week's menu I am trying the specific carb diet. Anything to feel better. My midsection and lower half are growing exponentially, and I don't even get to eat cake to have a reason why! Here's hoping we both feel better soon.

[Guest BERNESES]

Sorry to hear about your pain and frustration....you may not like this next morsel of advice/reality.

Some people with celiac when going through the "healing process" become ultra sensitive and even "sick for no reason" --- you sort have to accept that your body is healing itself and may react adversely to some foods that normally never gave you a problem.

Oh my God- Broncobux- do you have any idea HOW MUCH YOU MADE MY DAY????? If you were here I'd give you a giant hug. I went gluten-free in February and definitely started to improve but since July I have been getting really sick, often with very little lead as to what is making me sick. Now it makes sense. I'm going back to BRAT for a few days and then onward slowly. You made me feel so much better! Beverly

[spetti]

Well, I'm glad to learn that I am not the only one with this problem. I KNOW everything I eat is gluten-free. I even make my own dessert and have stopped eating out and still have D, bloating, etc. every night during the night and most of the morning hours.

So........do I look at what I ate for dinner? for lunch? I am beginning to suspect it is lactose - I generally snack on cheese before dinner and that is the only consistent thing I can think of that would be causing this over an extended period.

[Cindy H]

HI

I have enjoyed reading your postings. I have tried to be gluten-free since August, but I too still feel awlful. Getting through the day sometimes is just tough. I count down until I can get home and to my couch. I am cooking gluten-free for both me and my son. My husband is really careful with his foods with gluten. I like the system with the colours and think I will try it. It is amazing how depressed you can get with this disease. It's nice to know that there is support out there through this message board.

[Guest BERNESES]

I've kept a food journal since going gluten-free back in February and it helped a lot at first. Then I noticed I was reacting to so many bizarre things that I also started coding my days. I do a 0-5.

0 means sick enough to stay in bed

1 means sick but some functioning

2 still sick but more functioning

3 some symptoms but able to have a decent day

4 is a good day with very few symptoms

5 is stellar

I've actually had a few 4.5 days in there (Can't help it- I'm a teacher and it's never a stright grade- there always has to be a + or - involved

So, I've decided to go elimination style. Yesterday afternoon, after a horrible night before and morning, had an apple and I made uncle Ben's rice with chicken, broccoli, water chestnuts, carrots, lemon juice, olive oil and garlic. Felt great. (Till I ate a Reese's- duh!.) I think lactose and peanut butter are out for me right now. For lunch, I had gluten-free falafel wrapped in lettuce (found an organic, live food restaurant). Feel pretty good.

My biggest question is these intolerances that pop up after awhile, are they forever or is it just part of the healing process?

I went from being lactose intolerant to tolerating it tpo being lactose intolerant again. I miss cheese more than anything, but if this is what it takes to heal then so be it.

[blondehart]

It's so good to hear everyone else's issues. I've been (mostly) gluten-free for two months & I think I'm less tolerant of some things. Right now, I used a perfume that I haven't used in a while & became very ill. I went from feeling fairly good to crappy & the perfume was the only link.