1 Week Into Being Gluten Free And...

[Curious121]

I have been feeling exactly the same as when I started the Gluten Free Diet. The thing is, though, I was never tested. I have all of the usual symptoms - C and I just experienced a very painful D episode (only one since I started the diet but I usually had D once every other week or so), bloated and always full of gas, usually painfu, thinning hair, swelling of the intestines, a few psychological issues but not life changing. So, I figured just try the diet and if it works stick with it instead of going through all the testing and money.

I have been gluten free for a week and for the first few days I actually thought I was feeling a lot better...not as much gas but still a good amount, I was still constipated but my gas was less and that is my major problem - so I was pretty excited. I just figured the gas would decrease as I go further without gluten. Then I started feeling sick again, painful gas, stomach aches, still slightly constipated.

SO I thought about it, what could be making me sick? I may have been glutened, I ordered chilli one night at a restaurant, that may have had gluten. However, I realized that I am still eating milk products (which milk and butter never made me really sick but Yogurt and Icecream will put me in the bathroom for hours until I am empty) so I cut them out a day or two ago. I am still sick and I just got a major painful D episode. I did have icecream today, but it was lactose free icecream. I was very careful all day as to not eating gluten or lactose, everything was gluten and lactose free.

I know it takes time for people to heal, but what caused me to get painful D when I was gluten free. I had gluten free waffles and syrup, then applesauce. Later I made gluten free bread and had a sandwich - everything was gluten free. Then what had to have made me sick was either a little bit of lactose free ice cream or the gluten free spaghetti with hamburger in it. Could the ground beef have gluten? Could I not even be gluten intollerant? Am I wasting my time? I really do not understand. Maybe I ate gluten at some point today but could a little amount affect me so much after only a week of being off of it?

Does anyone recomend I stick with the diet? Are my symptoms possibly coming from something else besides Gluten that I have not thought of? I have been Diagnosed with IBS after a Barium Enema showed no problems a year ago but that is it. Could I be allergic to a lot of other things besides gluten and lactose? Could it be soy? How do you test for that? Allergist? I just would love to have less gas, have a regular bowel movement daily, and no more painful painful painful D. I would love to feel normal, I would love to be able to go out with my friends and not worry about if I may be sick or not tonight. It is devistating my life and I need answers. I know everyone understands my frustration. What do you think? Stick with it?

[elonwy]

A week is a really short amount of time. I would stick with the diet for at least a month and see how you feel. The other thing is, as we start out, there is a little learning curve and little mistakes we make as we figure out how to work this diet, so we're often not completely gluten free at first. A week is not enough time to give up.

Also, depending on how sick you've been, if this is indeed whats wrong with you, it can take quite a while for you to feel better.

And if you're worried about other things, just keep it simple, veggies and meat. Probably get you feeling better faster too. Too many Gluten free goodies too quick can make you feel funny all by themselves for completely seperate reasons.

Elonwy

[happygirl]

hey curious

although to someone on a gluten free diet for a week seems like a lifetime (and oh, god, it was!!!)....in the big scheme of things, it is not.

It can take months to heal. Just getting the gluten out of the diet makes it better, but it will take time to heal. So, EVEN if you are 110% gluten free (and that takes time to learn, trust me), you will not get better immediately. You can still be getting sick, gluten free, because your body has been sick and isn't functioning. It isn't like an allergy (i.e., take it out, you are fine) because it causes damage, malabsorption, lack of nutrients, and it goes on and on. Plus, in the beginning, it might be that you are still getting hidden gluten, which further delays the process. I remember eating simple and plain things and still reacting and freaking out: thinking I was eating gluten. I finally realized it wasn't the gluten, it was the damage caused by the gluten. It took me awhile to get back to normal. I had ups and downs...it didn't make sense and was horribly frustrating to me. And, even if you did just have a "tiny" amount, through cross contamination, or other hidden sources, yes, you can get horribly sick from it.

If you think gluten is your problem, one week is not enough to know definitively either way. I would highly suggest that you continue. Otherwise, you might always 'wonder'.

I hope this helps, even a little bit. I know you are overwhelmed with all of this and I wish any of us could magically make it all better. Let us know what we can do, ok?

By the way, there are other penn staters on this board. maybe they can help some with eating out.

take care, and best of luck, and enjoy happy valley for me

[Guest cassidy]

I didn't start feeling better for 2 weeks. Then I was able to tell when I glutened myself because I had good periods and I could see how they were different from the old feeling. I wouldn't just to any conclusions until you have been on the diet for several weeks.

Also, to make your life easier, I would simplify your diet. Basic meats, frutis, veggies and rice in the beginning. Eating in restaurants is tricky and what I call "advanced gluten-free eating" and probably not a good idea in the first few weeks. If you keep it simple you have less of a chance of glutening yourself and more of a chance of feeling better. Once you get the first taste of feelng good everything will be worth it and things will be easier.

[elaine33]

I didn't start feeling better for 2 weeks. Then I was able to tell when I glutened myself because I had good periods and I could see how they were different from the old feeling. I wouldn't just to any conclusions until you have been on the diet for several weeks.

Also, to make your life easier, I would simplify your diet. Basic meats, frutis, veggies and rice in the beginning. Eating in restaurants is tricky and what I call "advanced gluten-free eating" and probably not a good idea in the first few weeks. If you keep it simple you have less of a chance of glutening yourself and more of a chance of feeling better. Once you get the first taste of feelng good everything will be worth it and things will be easier.

I am a week into my gluten free diet too. I have noticed that I feel better when I am sticking with chicken, fish, potatoes, veggies, apples or applesauce - a very bland diet! I actually think I glutened myself over the weekend or some of the gluten-free stuff I baked is not agreeing with me.

My nutritionist advised me to do a hunter-gatherer diet for two weeks to a month at least to clean out my system, and I am going to try my darndest to stick to it although it can be very boring.

Good luck and I hope we see some real results soon. I actually have noticed my bowels are much more quiet and less gassy overall so I hope that happens for you soon too.

Oh yeah, I am lactose intolerant and I have gone completely lactose/casein free although I have been 'lactosed' a few times accidentally (rice crispy treats for one).

[Guest nini]

a week is not nearly enough time to judge by. First of all, there is a steep learning curve and you are most likely not completely gluten-free despite your best efforts, Second, if your kitchen has not been "decontaminated" you can be getting glutened from things like toasters, cast iron pans, scratched non stick pans, cutting boards previously used for gluten foods, wooden spoons, collanders, contaminated condiments, etc., Third, as you've noticed you have an issue with dairy, many of us need to eliminated dairy completely for a while (sometimes permanently) until our intestines heal, Fourth, if your personal care products are not gluten-free or your vitamins or supplements, that too can be a major issue (YES you can get glutened from lotion and shampoo and makeup).

I had a positive blood test and it still took me SIX MONTHS before I truly started to feel better. I was extremely frustrated that I was being vigilant about the diet and cross contamination, but I still wasn't feeling better. It simply was taking my body that long to begin to heal because I was so sick and malnourished to begin with (despite being morbidly obese, yes I was malnourished).

My advice, hang in there, eliminate all dairy as well, keep your diet VERY simple for the time being, yeah it may be boring but it will help your body to heal. Give it a MINIMUM 3 months before calling it quits, but remember, it took me six months to START to feel better and 2 years to really get well. 3 1/2 years into it I'm still having issues because of occassional accidental glutenings that hang with me for weeks at a time.

[spunky]

I agree that one week is probably nothing; you really can't expect results that quickly...sorry.

I'm self-diagnosed and found the first several months trying, confusing, felt like giving up all the time. Finally, I made myself a little chart of symptoms, listing the symptoms on the left-hand side of the page and having 1-10 under each symptom, so that I could put a dot on how I evaluated that symptom every day, 1 being good and 10 being awful. I listed the dates along the top and then made a dot at 8:00 every evening, by then I felt I could adequately evalutate that day...I even called it my 8:00 report! I connected the daily dots with a line to form a graph so I could visibly see improvement, which I was desperate for. It was only during about the 4th month (I'd made the chart sometime during month 3) that I could look at the dots, and see a very erratic step-wise and gradual improvement happening. That, plus lurking aournd on this board, kept me going. By the end of month 6, I pretty much felt I was greatly improved and was generally having a lot more good days than bad, and bad days were rarely up to 10.

I know it's frustrating. I'm horrifiec now because after 2 entire months of everything being a 3 or less...and lots of what I call "flatliner days," meaning days with NO SYMPTOMS at all, now I'm very screwed up. I'm charting lots of 10's, awful days with awful symptoms during the past week, after having eaten "gluten-free" soup at someone's house. So, I guess I'm saying, yes it is a long and difficult road getting and staying gluten free long enough to finally see results, and then, I'm thinking if I ever get back to normal again, I won't EVER eat anything at anybody else's house, ever again! I would say you need to be extremely diligent about everything you eat for a good 4-6 months to see gradual improvement. I've read some people are luckier than that and get better faster, but some have to wait even longer. Hang in there and don't give up just yet.

[breann6]

my best advice, and i am only a week ahead of you on the gluten free diet, but nearly a month gluten lite. Is stick with whole foods and eat lots of fresh fruit and veggies. i am going seasoning lite right now and also laying low with processed foods. the fruit with meals has helped my digestion A LOT!. the whole foods diet- naturally gluten free really is helping the most. my energy is picking up and its been over a week since i was sick

hope you feel better soon. it sure is hard starting out, but becomes easier as you are feeling better.

also, are your shampoo's and shower care products gluten free? lotions? soaps?

[Gamecreature]

During my first week of gluten-free I made so many mistakes that I don't think it really counts. Foods that I assumed were gluten-free actually weren't. Interestingly enough, when I ate something that I later learned had gluten in it I had a very strong reaction, much stronger than I had before I went gluten-free. You notice it more when it's no longer there.

Also, for older folks like me, it takes a long time for the body to heal. The end of the immediate reaction of the body's immune system responding to the gluten is a relief, but the response of your damaged intestine to any foods is going to be around for a while. As long as you remain vigilant on your diet, that will gradually improve as well.

[happygirl]

elaine,

you mentioned rice krispy treats...i am hoping they were not regular rice krispies as they have malt in them. that was one of the biggest shockers to me---I remember thinking why in the world would RICE krispies need gluten? sigh.

Laura

[Gamecreature]

elaine,

you mentioned rice krispy treats...i am hoping they were not regular rice krispies as they have malt in them. that was one of the biggest shockers to me---I remember thinking why in the world would RICE krispies need gluten? sigh.

Laura

I noticed that as well. My guess is that it's probably just easier to say Rice Krispies treats than gluten-free rice cereal treat. That's my hope, anyway, but yes, that's one of the mistakes I mentioned in that proverbial first week that didn't count. We really need to come up with a new name for that snack one of these days.

[elaine33]

I noticed that as well. My guess is that it's probably just easier to say Rice Krispies treats than gluten-free rice cereal treat. That's my hope, anyway, but yes, that's one of the mistakes I mentioned in that proverbial first week that didn't count. We really need to come up with a new name for that snack one of these days.

Um they were kellogg's rice crispy treats. Obviously I glutened myself without knowing it. I thought I was just lactosing myself. Either way, they were part of my learning curb and are out the window, but thanks for that info.

And for Pete's sake, why wheat in rice crispy treats!

[Gamecreature]

And for Pete's sake, why wheat in rice crispy treats!

It's not wheat, it's barley malt. Don't know why, but malt is a popular sweetener in a lot of processed food, especially anything with processed rice (that means Nestle's Crunch, Hershey's Krackle, M&M's Krispy and the 100 Grand bar to name a few).

Oddly enough, Post Fruity and Cocoa Pebbles do not use malt, which is probably one of the reasons that they are sweeter than a 5-pound bag of sugar. But I digress.

It's scary how much of this stuff is in the food we buy. So, important safety tip - no wheat rye or barley and that includes malt!

[debmidge]

for my husband: He felt some improvement after first month. gluten-free ...then every few months later on gluten-free more improvement in symptoms; finally took more than the first year to see the major change.

One thing however, he never gained his weight back and despite being 100% gluten-free he can't gain weight for long. Loses it if he skips a meal (like has to go to Dr. for a test and isn't supposed to eat). He doesn't skip meals on purpose or because he's too busy. He tries to get in as many calories a day as he can.

[happygirl]

elaine,

it is ok, trust me, we have ALL been there. that is why this board is so great.

there are specialty gluten-free "rice cereals" though, at least.

also, something that took me a little while to adjust to, but helped me in my thinking/dealing with food (esp to start off with). I took the approach of assuming that EVERYTHING had gluten in it (instead of thinking, oh, that should be fine). Assume everything has gluten---do not eat it until you know 1. what the ingredients are/if it is or isn't safe and 2. how it was prepared (someone might have used safe ingredients, but their ingedients had cross contamination, so then it isn't safe). That really helped me and helped me get over the hurdle of being "gluten-lite" and going really "gluten free." I started thinking of gluten like poison....I wouldn't risk poison, would I? Then I took that same approach to eating and gluten (I react horribly to gluten, so it was in my best interests, not only long term/preventing other problems, but short term effects!)

But, we all make mistakes......we just start over, and better, and try harder next time. We all remember our specific mistakes, even those who have been at this for a long time (i'm about 2.5 years in, and boy, do I remember some of them!!!!!!)

good luck

[tarnalberry]

Assume everything has gluten---do not eat it until you know 1. what the ingredients are/if it is or isn't safe and 2. how it was prepared (someone might have used safe ingredients, but their ingedients had cross contamination, so then it isn't safe).

this is the best advice. it sounds exteme, but it's accurate.

[ajay]

But, we all make mistakes......we just start over, and better, and try harder next time. We all remember our specific mistakes, even those who have been at this for a long time (i'm about 2.5 years in, and boy, do I remember some of them!!!!!!)

good luck

Oh yeah... I still vividly recall learning that Hershey's miniatures were not safe way back, um, this Halloween. All this time and I thought I was OK if I just avoided the "krackle". @#%*!!

This board is so helpful with stuff like that. It can take a lot of trial & error to learn some of this stuff, and luckily people share info about their trials.

Hang in there. It takes awhile, and even years from now you may get adventurous and try the wrong thing... but you *will* start to feel better, and as you learn more it will get easier.