Do Everyone Have Setbacks In The Beginning?

[Guest cassidy]

I have been trying to be gluten free for about 3 weeks. I have checked every food label, every lotion, toothpaste, cosmetic that I use and I have still been glutened. Does everyone have this happen in the beginning? I have had a taste of what feeling good is like, so now I get frustrated when I have eaten something bad without knowing it.

I ate a salad on Tuesday at Johnny Carino's. I went into the restaurant before lunch, told them about my allergy and they said they could make me something safe. They didn't. I'm in sales and I have lunch with my customers at least 4 days a week. So far, I haven't had much luck.

I also changed all my face lotion that had gluten. I read that my Oil of Olay is safe and I've been using that for a year, so now I'm just using that. The corners of my lips are now very cracked. It hurts to open my mouth and smile. I have started putting chap stick on them, but I know this isn't just chapped lips because it is only the corners that are irritated. I can't figure out what I have added or done that is causing this. I read that it could be a vitamin deficiency, but I take good vitamins and I don't think it is that. I also checked and my lipstick is safe. I think something is irritating my skin and I don't know what it could be.

I bought all these Amy's meals and then discovered that the Rice Mac & Cheese made me sick. I looked at the box and saw the wheat allergy warning. I bought about 7 of those Amy's meals at the same time and later noticed that most of them have the warning. I just ate another one because I feel guilty about wasting all that money, and now don't feel well at all.

I have never been mad that I have to be on this diet, I have accepted that. I'm just glad there is something that will make me feel better. I am trying my best to not get glutened, does it get easier? Any advice on what else I can do.

[VydorScope]

Everyone gets gluten from time to time, alot more in the beging, and its gets easier as you go beucase you learn to build your "comfort" zone of products that you know are safe, and you can always use.

OF course some stupid manufacture will "improve" a product on you and UGH!!

But yes, everyone has struggles, and it does get eaiser...

[jerseyangel]

Hi Cassidy--I know how dissapointing it is to get that "taste" of feeling better, only to backslide and get some symptoms back. This is common--3 weeks is a short time in terms of healing. It took me that long to just figure out what I was doing wrong! The best thing you can do for yourself is to continue to keep the gluten out of your life. The first 3 months gluten-free, for me were up and down. I started to feel better around the 4th. month. It will get better--really .

I also had the cracking on the corners of my lips. The thing that helped me--beside the diet--was vitamin B6. I take that daily, along with a multi. and calcium.

A thought about eating out--I know you have to do it for your job, but that's where CC can really get you. I am still afraid to eat out--I go out, but only get something to drink and have something for myself in my purse. It dosen't sound like much fun, and it's not! But when you're new at the diet, and trying to heal, it's something to think about.

[pogirl1786]

It does get easier! I remember how extremely frustrating it was for the first part after my diagnosis. There were times when I was still sick, and had no clue what I could be getting gluten from. After getting all new pots, pans, drinking glasses, and containers, as well as double checking products with manufacturers, I talked to my doctor and she explained that it would take time for my small intestines to heal. Sometimes you have good days, and then other times you have bad days. One thing that helped me was taking digestive enzymes that you can get at a nutrition store usually. A girl who works at my nutrition store also has Celiac disease, and she was the one who introduced me to them. You can take them before you eat, and it helps to break down foods. I had a lot of small intestine damage done to me, so this was very helpful. Finding products and places you are comfortable with also makes you feel better. I rely a lot on Chick-fil-a's chargrilled chicken salad when I am eating out with friends. I also remember eating a lot of Snickers bars when I was feeling down! Just know that it will get easier, I promise!

[Guest nini]

absolutely I had setbacks... all those pesky "hidden" glutens that are in everything will get ya.

for the longest time I assumed that Taco Bell would be safe to eat at. WRONG! The corn tortilla's were being fried WITH the flour tortillas, the meat mixture HAS WHEAT IN IT and the one that I would eat at near my work had RAMPANT cross contamination issues. Ahhhh live and learn. I finally called the 800 # on the cup one day after getting so sick I had to leave work again. The lady on the phone graciously informed me that I could have (get this) pintos and cheese and THE CONDIMENTS!!!!! OH JOY!!!!! I have since learned that there may be more on the menu at Taco Bell that may be safe, but I just don't trust it.

[CeliaCruz]

Setbacks? Oh yeah. It's funny how all the literature you read at first just makes it seem so easy. All you have to do is decide not to eat gluten anymore and all of your problems are over. Poof! And then you actually try to go on a gluten-free diet and you realize that you were only getting the Readers Digest version of things. There's so much to learn. I don't think people GO on this diet so much as they learn over time to MASTER the diet.

"I went 'gluten-free' a few months ago" is what I tell most people, but there's way more to the story. At first I glutened myself twice a week. Then I started glutening myself once a week. Then it was once every two weeks. I know that I'm making progress because I'm glutening myself less often and feeling much better -- no more eczema, rage, hot flashes, bone/joint pain and a lot less diarrhea. But technically I'm glutening myself too often for my body to heal properly and that skeeves me out.

[Rachel--24]

Well...I've been on the diet quite some time now and I dont how many times I've glutened myself but its ALOT. Pretty similar to CeliaCruz actually and I'm pretty skeeved out too. One more thing that seems to be common around here is additional food intolerances...mainly dairy. If you still eat dairy you may wanna give that up for the first few months.

The lady on the phone graciously informed me that I could have (get this) pintos and cheese and THE CONDIMENTS!!!!! OH JOY!!!!!

LOL...Nini!!

That made me laugh. If I was eating dairy I'd definately go in for the pintos and cheese....I love that stuff! Sheeesh I'd love anything from a fast food chain right about now.

Setbacks? Oh yeah. It's funny how all the literature you read at first just makes it seem so easy. All you have to do is decide not to eat gluten anymore and all of your problems are over. Poof!

So true....I actually believed all that and then I was like "What the heck??....Its been like 2 weeks and I'm not better." I thought I could go out and buy every gluten-free product on the market and life would be perfect. They LIE.

[traveljunkie]

I can relate to your frustrations! In the beginning, I never realised "wheat free" didn't mean "gluten free." It took us awhile to catch that one. But, trust me it will become second nature to you. Just keep hanging in there. You could donate the food you bought that isn't gluten, so it won't go to waste. But, I wouldn't recommend eating it and harming yourself even more. Good luck to you!

Charlene

[Guest cassidy]

thank you guys. It is good to know that other people have challenges with this as well. My husband's birthday was yesterday so Wednesday I baked him cookies and yesterday I baked a cake. I wore rubber gloves when I was baking, but I wonder if just doing that was enough to cause me any additional problems? I cooked dinner for the extended family last night. All of it was gluten free (except the cake) and no one even knew.

I have 5 lunches scheduled this week, but I might just stick to the Boost I have been keeping in the car. I want to have a good week this week.

[nathela]

thank you guys. It is good to know that other people have challenges with this as well. My husband's birthday was yesterday so Wednesday I baked him cookies and yesterday I baked a cake. I wore rubber gloves when I was baking, but I wonder if just doing that was enough to cause me any additional problems? I cooked dinner for the extended family last night. All of it was gluten free (except the cake) and no one even knew.

I have 5 lunches scheduled this week, but I might just stick to the Boost I have been keeping in the car. I want to have a good week this week.

Hi!

I had so many setbacks after I went gluten-free. My make-up, shampoo, were the problems. BUt, something else was the problem.

I would like to discuss it with you: CARBS FROM RICE, POTATOES, CORN, CHEESE and SUGAR.

NOt only we have to eat gluten-free, but I deeply believe that we need to change our diet to help the intestines heal. Not eating complex food ( polysaccaharides) for the intestines to digest peacefuly, is NUMBER ONE PRIORITY FOR AVOIDING ANY SETBACK.

Only the sugar from fruits: fructose, and honey are the only two sources of sugar allowed.

Corn syrup, refined sugar, are toxics for us!!! Believe me!

I followed the diet of a wonderful book called," The Special Carb Diet." I get no more of those awful endless fatigue. I got to know about this book from one of us. Thank you so much to the person who brought this book to me, It saved me from depression!!! Allelouha! Good luck!

[jenvan]

Setbacks are the norm initially I'd say. It takes a tremendous amount of work and research to get rid of all your unsafe foods and products....and to figure out what those are! Be patient with yourself, and try to be hopeful too. For many people, some improvements come quickly, but substantial healing can take time.

[carriecraig]

I've been "gluten-free" for over 6 months now, and I've had a glutening incedent as recently as a few weeks ago. Hang in there, it will get easier. You'll get better at reading labels, and will know what is safe and will be able to stick to staples.

[VegasCeliacBuckeye]

Setbacks are part of the gluten free lifetstyle (unfortunately)

what most people don't realize (this includes "newbies") is that in order to be successful at the gluten free diet, you must be able to master

1. Cooking/Food Knowledge

2. Ingredient Labeling

3. Risk Management in Restaurants

4. Risk Managaement in Pharmaceuticals

5. Risk Management in Envelopes, Play-Dough, Dog Food, etc etc etc

Basically, you need to become a Chef, a Waiter, a Bartender, a Food Manufacturer, a pharmacist, a chemist, a health freak and still try to maintain your sanity and be a good person...

Its tough being a knowledgeable Celiac!!

[jenvan]

Bronco--that posts says it all! (Could we infer from that statement that Celiacs are, generally speaking, more successful and well-rounded than average non-Celiacs??)

[Canadian Karen]

Well said, Broncobux!

Karen

[ebrbetty]

I hope you don't mind if I "butt" into this thread but I wanted to say THANK YOU to all who posted, I'm teary eyed with a bit of relief just reading this..I've been so scared there is something else wrong, 4 weeks and still having stomach pain, most everything I eat, but, the pain is better than before I went gluten-free. I just keep telling myself "theres probably a lot of damage" so it takes time to heal and my stomach does not like food. If I read one more time how easy this is..to just stop the gluten,wheat etc and all the pain will stop I think I'll go crazy, that was one of the first bits of info. I read..I wish it was that simple!!

so anyway, thank you all very much!!

BTW~ are you all symptom free unless you get glutened or do/did you experience your glutened symptoms even eating safe food in the beginning??

hugs, Betty

[VydorScope]

BTW~ are you all symptom free unless you get glutened or do/did you experience your glutened symptoms even eating safe food in the beginning??

I hate to give you bad news but some ppl take a year or tow for all teh symptons to clear up, assuming they stay gluten-free....or at least mostly gluten-free.

[ebrbetty]

thank you for the reply, though I would love heal faster, your answer actually makes me feel better, I keep thinking there's something seriously wrong with me because even safe foods still upset me. glad to hear its a "normal" I guess after a year of severe pain,[ I spent MANY days and nights on the floor in a fetal position thinking I was going to die within a couple hours after I ate.] it will take time to heal the damage.

thanks again..everyone

[VydorScope]

thank you for the reply, though I would love heal faster, your answer actually makes me feel better, I keep thinking there's something seriously wrong with me because even safe foods still upset me. glad to hear its a "normal" I guess after a year of severe pain,[ I spent MANY days and nights on the floor in a fetal position thinking I was going to die within a couple hours after I ate.] it will take time to heal the damage.

thanks again..everyone

Alos many ppl have troulbe with other foods, esply dairy till they heal enough to handle it. Might want to look in to other food issues.

[Guest cassidy]

Betty,

My stomach still hurts when I eat safe things. It doesn't feel like gluten - with that I have intense stomach pain, bloating, gas, cramps, head ache that last for a long time. Lately, when I eat something safe, my stomach hurts for about 45 mins afterwards, but not very badly. I also have reflux, so I don't know if that has anything to do with the pain either.

I also consistently can "feel" my abdomen. Like you know your arm is there, but you don't really feel it. I am always aware of my stomach area, and it doesn't really hurt, it just feels funny enough that I am constantly aware of it. I don't know if that makes any sense or if anyone else feels like that.

[VegasCeliacBuckeye]

I agree...

One of the strangest side effects of going gluten free for me was that I became SOOOOOO much more hungry (or aware of hunger)

This has continued for 8 years...

when I was younger, I could go half a day without eating -- now I get cranky a couple of hours after a meal -- weird huh?

[ebrbetty]

Hi Cassidy, yes, thats how I feel! its not as bad but still upset enough to other me. I had a safe luch and the grumbling, gas and slight pain lasted a few hours.

I have gerd, the acid can get bad

what I have noticed is my stomach will start to get quiet bad, like before, but after awhile will calm down to a easier degree of pain on its own..before I started the gluten-free diet once the pain started it never stopped..and to think cheeseburgers and subs are my favorite food, I lived on them! [thank goodness I love to workout lol]

hope you feel better soon!!

[jenvan]

ebrbetty--

You may want to keep a food and symptom journal also, to see if you are missing a problem food or connection...

[Guest nini]

I'm almost 3 years into this and other than the very occassional accidental glutening from cross contamination or hidden ingredients, I'm doing a lot better. However, I do still have some symptoms. Fatigue and pain being the most obvious. Sometimes right after eating my face gets all hot and red, also sometimes right after eating I get a pain in the upper left quadrant of my stomach, behind my ribs, followed by excessive gas. I'm noticing that I may be having issues with soy and possibly other foods.

Gluten is only part of the puzzle, it can help you start healing, but most of us are so malnourished that our bodies are hyperreactive to other foods as well.

[Canadian Karen]

thank you for the reply, though I would love heal faster, your answer actually makes me feel better, I keep thinking there's something seriously wrong with me because even safe foods still upset me. glad to hear its a "normal" I guess after a year of severe pain,[ I spent MANY days and nights on the floor in a fetal position thinking I was going to die within a couple hours after I ate.] it will take time to heal the damage.

thanks again..everyone

So many painful memories have rushed back to me when reading this. I can remember curled up in a ball, death grip on the headboard, writhing in pain, and absolutely convinced I wouldn't live to see another day and regretting that I wouldn't be there to see my kids grow up......

The road back to health is a very long one, we must be patient, as long as we are no longer poisoning ourselves with gluten, the rest will slowly fall back into place.

Hugs.

Karen