Maybe Hes Wrong

[Lister]

Well i have been gluten free for about a month now and ithought things where going great, but for the past 3 days i have been getting worse each day and im almost to the point physicaly where i was before i was dianosed and even went on this diet. If things continue to get worse and not better i think i will be removing myself from the diet since obviusly its not working. I meen i had a good 6 days with good bms and now there turning back to mucus and my fatigue and brain fog have all come back as well. I dont understand how you can go from good one day to bad the next if you are healing so obviusly im not.... i dont know what to do really, i think i will stick it out with the diet for 1 more week and then talk to my doctor if things dont turn back onto the brighter side again

[Girl Ninja]

Try to poke around on here for other people's postings about time frame. What I've gathered is that you can still have random gluten responses for at least 6 weeks. It doesn't mean you're not healing or doing anything wrong, and it can be confusing at first when you're still new to the diet. I encourage you to hang in there.

[Guest nini]

this takes time... my own healing process took a good TWO YEARS... yes you read that right. TWO YEARS before I started feeling a lot better. I had good days and bad days. Usually my bad days were when I was eating something that I THOUGHT was gluten-free but I found out later it wasn't. I've gotten contaminated more times than I can count from Amy's meals and I saw that you ate one of those recently.

I recommend sticking to the basics for now. Avoid ALL processed foods even the ones labeled gluten-free. Give your body time to heal. You do have Celiac. Your dx is not an error. Give it time and keep at it.

I am sure you have gotten some gluten, probably from the Amy's meal... just don't give up.

[eKatherine]

You've posted almost every day that you've been glutened over and over again. How gluten-free do you really think you've been?

[Mango04]

A good six days = progress. Hang in there. Try to find a way to limit processed foods. It might just make an enormous difference.

[jerseyangel]

Hi Lister--I know you're really trying, and I think you are doing a good job at being gluten-free. These setbacks happen--I know I must sound like a broken record by now, but it is the truth. Please keep at it! There will be periods of up and downs--you just have to stay with it. I know it's a lot easier to stick with it when we feel good--but it's just as important to do so when we don't. It's taken me a year to feel better--for some it takes less time, and for some, more time. You may have just eaten something that irritated your healing intestine--the prepared foods will sometimes do that because they contain a lot of ingredients. Keep with your simple, fresh foods--6 days in a row is really good! I definately hear you on wanting more variety--have a look at my signature--there is a ton I can't eat! But that's the way it is, and I have gotten very creative with what is left! You will, too. For now though, just keep it simple--and try to relax--everything's gonna be ok!

[Rachel--24]

I'm just going to repeat whats already been suggested. Not eating processed foods will make a big difference. I know you've said you cant cook but do you really want to go on like this? I never knew how to cook either but I taught myself and it was the best thing I did for myself. I had to change my whole way of eating but I'm not sick like that anymore. If I can do it you can too.

[CarlaB]

You have a doctor's diagnosis. You've got it! I went through a period of a couple months that I had a lot of denial ... my family would set me straight every time, all they'd have to do is remind me how sick I get when I eat it. Amazing that I still have denial occassionally and have been feeling great, looking much better, and get sick when I eat it, which is never on purpose. It's normal to feel how you're feeling and to have ups and downs. I myself am having terrible brain fog today.

[wolfie]

I have to agree with what everyone else has said. This is going to take longer than 1 month. I am 5+ months in and I still have a bad day or days every now and then. Most of the time I can pinpoint why, but sometimes I can't. The best thing you can do is go to very basic foods. That way if you do have a reaction you can tell what it is. If you are lactose intolerant, stop all dairy or take Lactaid with any dairy product. If you drink alcohol, stop for a while and give your system a chance to heal. Keep a food diary, if you don't already, so you can look back and see what the issue was if you have one.

Good luck and hang in there!!!

[Lister]

i dont have celiac im only sensative or atleast that is what my doctor has said he did tests for celiac when i was having major symptoms and all my levels were perfect nothing abnormal at all. but i have slight damage in my small intestine. These past 2 days have felt like im back on square one my stomic wont stop making very loud growls folling or before a burning sensation. i thought these where gone i had not had them for 6 days. i thought i could contain them by eating but they wont stop......... and i know i did not get glutned so i dont know whats going on

[Guest nini]

are you even listening to us? not trying to be mean or anything honest, but listen, even though your Dr. didn't call it Celiac, this is what you have like it or not. You do have damage to your intestine, you do react to gluten, so at the very least you are gluten intolerant which to most of us means Celiac. One month is not enough time to heal. You are improving, it takes time, it takes vigilance and seriously, if you are eating anything processed, there is always a risk of getting glutenened. ESPECIALLY with companies that make gluten containing products as well as gluten-free ones, like Amy's. So you cannot be 100% sure you are not getting gluten, I've been doing this three years and I'm still not 100% sure I'm not getting gluten. You just stick with it, keep learning, and don't give up.

[Lister]

all i am simply stating is its one thing to have days where you feel bad and days where you feel good but to have days where you are completly back to where you started makes me feel like maybe there is something wrong that is not celiac or even related to gluten. we never finished my testing because we thought the diet was working but if the symptoms keep beeing the same after this week then i feel maybe i should go back. and i am listning to what everyone is saying

[ianm]

It took me a good two years before I could say I was healthy. It was not always a smooth ride during those two years. You have to be extremely vigilant about the diet and give it more time. You did not get sick overnight and you will not heal overnight.

[Lister]

the thing is i did get sick overnight, i was perfectly fine up until last month i got the flue and during the flu i started to get pains so iwent to the doctor and thats when this all started. no problems before the flue. I understand the diet takes time but i just dont get how acuall pain can come and go as it pleases without reason

[Becky6]

I am at almost 6 months gluten-free and I have been back and forth quite a bit. Just a few weeks ago I felt almost back to where I had started for a good week or so! It is very frustrating but it is worth it in the end. Have you looked at all your body products? Are you sure you are not getting gluten some where? If you are eating things made in a facility with wheat that could be getting you. You need to eat whole foods for a while and see if that helps.

[Lister]

i was eating whole foods, the only thing i had was yes the amys but that was yesterday afternoon and i started to feel this way like the night before yesterday, i have checked all of my body products and they all are gluten free

colgate toothpaste suave shampoo i dont put my calon on me anymore i spray onto my clothes. laundry deterget i dont know about but my clothes dont tuch my mouth. soap for dishs is ajax so i think all my products are safe.. gah this is all so stupid and frustrating sorry i complain alot

[Guest nini]

it's not stupid... we all go through a learning process...

I understand what you are saying about getting sick overnight... it very well may seem like it... you had a virus that triggered this. You said before you were using medical mj for back pain, the back pain very well could have been a symptom... (no I'm not crazy)

What we are trying to tell you is that what tests you did have show that you are gluten intolerant and you treat gluten intolerance exactly the same way as Celiac, by adhering strictly to the gluten-free diet. We are not trying to pick on you, just trying to help you realize there is a steep learning curve with this lifestyle. Even those of us that have been doing it a long time still make mistakes, so you can't be too hard on yourself only one month or so into it.

Also, yes it is common to have days where you feel like you are starting from scratch... it's not fair, but it is common. It takes a long time to heal even if you weren't sick that long. You just might take only six months to heal, where it took me 2 years.

[Lister]

ok so the backpain was bs, i just dont like to mention mj without backing it up with medical because it makes me look bad i smoke yes no its not perscribed but it is from someone who is perscribed... yeah so i guess i lied on that sorry. just did not want to mention mj on the forum unless i was on it for medical

[Guest nini]

ok so the backpain was bs, i just dont like to mention mj without backing it up with medical because it makes me look bad i smoke yes no its not perscribed but it is from someone who is perscribed... yeah so i guess i lied on that sorry. just did not want to mention mj on the forum unless i was on it for medical

well anyway... not everyone has symptoms but the damage is still being done, and then when something happens like an injury or illness to trigger it, all hell breaks loose, so to speak... just chill, you seem to have a LOT of anxiety which is a HUGE symptom!!! It was one of my biggies so yeah I can talk... Once I had been gluten-free for a year I was able to go off my anti anxiety anti depressant meds...

[Lister]

it just sucks i cant figure out a way to make the pain go away besides eating, if i eat something the pains seem to go away for about 30-50 minutes but then come back, A. i dont want to eat that offten B. i dont have the food to last me to eat that offten. not sure what to do but the pains become so unbarable i have to force myself to eat

[Guest Robbin]

Hey Lister, I have been frustrated just like you are right now and I found out I am casein intolerant (dairy) too, and that was why things weren't going too well for me. Try cutting out dairy and see if that helps. You may just need to heal and you can try dairy again later, but it is worth a try. I was ready to lose my mind before I realized the other food problems that came along with this for me and got straightened out somewhat. I'm only five months into it now and it has been a struggle, but what is the alternative?! Getting even sicker. What can you do but keep on this until you get well? You are lucky, you are young when you found out before you had major-life-changing damage. We CAN do this with support from each other and you WILL get better. If you need quick meals, try some of the gluten free soups you can add some things to it and it is a good quick meal. Try peanut butter and jelly on rice cakes. Cocoa Pebbles are gluten-free. Try that with almond milk-it is sooo good that way. Check out the threads on the recipe section and the products section to get ideas. Get a crock pot and put a chicken in it with some honey and gluten-free seasonings and roast it while you are at work, or do other meat. You can even pick up a slow cooker or crock pot at a thrift store sometimes for a couple of bucks. The library probably has some gluten-free cookbooks, too. I recommend The Gluten Free Kitchen by Roben Ryberg as a good one to start without a lot of fancy flours. Just potato starch and cornstarch. PM me if you want some recipe for something specific and I can find it for you. We all want to help. Take care.

[Lister]

unfortuntly i already had cut out dary the first bit of dary i have had since going gluten free was yesterday but the pains came before that. and it was only like less then a spoons worth of cheese

i thout milk substatues usaly contained a gluten ingrediant to distill it or whatever. like i read that soy milk and rice milk we cant have. who makes almond milk?

[Rikki Tikki]

Almost 3 years before I started feeling really good. Hang in there!

[Rachel--24]

Lister,

Even if you do have something else going on it doesnt mean that your doctor was wrong. You obviously need to be off gluten so going off the diet is only going to make things worse. Try not to stress so much...stress will worsen your symptoms tremendously. If you stop eating processed foods like Amy's you wont need to stress about whether or not you'll get glutened. Stick to whole foods and you wont have to worry about cross contamination and all that. Also I'm guessing that all the weed and cigs cant be helping matters. Can you cut back a little?

You need more time to heal and work out if you have other food intolerances or something else adding to your problems. Stay on your gluten free diet and give it more time and less stress. Your body can heal but you need to help it also.

[Lister]

i acually almost quit cigs, for the 6 days i was feeling great i started to cut back and made it down to 3 a day instead of 11 but i found myself smoking about 12 yesterday and 15 today yeah i know thats really really bad and im gonna have to quit really soon before i get worse when it comes to cigs. as for my mj im not gonna cut back on that i am trying to enjoy it while i can since my minimum wage job is starting uas soon but they will give us a 3 month warning to get clean before hand but until then i like it to much to quit before i have to.