It's Been A Month...

[7-cody]

Is it common to not feel any different after a month of being gluten-free? I've also been dairy free as well for three weeks.

The only changes I've noticed is that my nose isn't as stuffy and my reflux seems to have gone away. It used to be that even brushing my teeth if I went as far as my back teeth I would start to choke and if I wasn't quick enough I'd puke a bit.

Now I can literally stick my toothbrush down my throat and nothing happens... weird.

Other than that my horrible brain fog and fatigue are still here... shouldn't I be feeling a lot better by now?

[Guest j_mommy]

Some take awhile to feel better!!! give your body time.

That said....are you sure you're not getting hidden gluten somewhere????

[newlyfree]

Hi Cody - it sounds like you are seeing improvements, which is a great thing! You say you don't feel any different, but getting rid of the reflux sounds huge - many people wouldn't need their fancy purple prescriptions if they could get results like that

Don't expect it all to go away in a month. Many sources say the healing can take form 6 months to 2 years. I'm over 4 months in, and still healing, not at 100% but probably about 80%. Still, leaps and bounds above where I was.

Are you taking any vitamins/supplements and/or talking to a nutritionist? You might be lacking essential nutrients from the damage you've sustained and some supplements may help. I know my brain fog got much better after I started taking vitamins.

[7-cody]

Hi Cody - it sounds like you are seeing improvements, which is a great thing! You say you don't feel any different, but getting rid of the reflux sounds huge - many people wouldn't need their fancy purple prescriptions if they could get results like that

Don't expect it all to go away in a month. Many sources say the healing can take form 6 months to 2 years. I'm over 4 months in, and still healing, not at 100% but probably about 80%. Still, leaps and bounds above where I was.

Are you taking any vitamins/supplements and/or talking to a nutritionist? You might be lacking essential nutrients from the damage you've sustained and some supplements may help. I know my brain fog got much better after I started taking vitamins.

I'm taking vitamin B12, it's a powder I've been putting in a bottle of water every morning. I've been doing this the entire month. I've only missed one day...

And I'm pretty sure I haven't got any hidden gluten. I ate at Outback once and Roadhouse once, both with gluten-free menus. Got a steak one time and a salmon the other.

Can it really take 6 months for this brain fog to go away?! Has anyone here had it take that long... I also have really bad rosacea... is it possible for that to clear up on this diet?

[newlyfree]

It took me a good 2 months to feel like my brain fog was REALLY gone. But it probably took me almost that long to REALLY get the diet right.

Have you weeded out possibly hidden glutens in your home? Old cutting boards, wooden spoons, colanders, spice mixes, that sort of stuff? I made those mistakes for the first month and it was bad - the last thing we threw out was a pepper mill that hubby had bought at some discount store. He loved how it looked and even though we had no way of knowing if the pepper inside had wheat flour to prevent caking, he just wouldn't give the thing up. I finally told him it was me or the peppermill, darnit!!!

B12 is a good thing - you may not be absorbing it fully yet. Many on the boards recommend a subligual B12 that gets absorbed through the mouth and doesn't need to go through the intestines. You may need more that just B12, however.

[Yellow Rose]

I've been at this since April and I am starting to feel better. It seems very slow going in the beginning. There have been little changes that looking back are adding up to quite a bit of improvement. The brain fog does go away but for me took at least 2 months. One thing I just figured out ( would like to blame it on brain fog HA!) is the ingrediant list. I read all the posts I could in the beginning and was obsessed on learning as much as I could. But, didn't get it until 2 days ago that even though the government requires company's to list the 8 major allergens wheat being one of them. I didn't catch that oats, barley, and rye, don't have to be listed because they are not one of the 8 and are hidden in food starch, natural flavorings, , caramel, spices, etc. I have gone back and rechecked everything and today discovered that my hand soap that I wash with at least 30 times a day (I run a daycare in my home) had gluten in it. I knew I was getting it from somewhere but hadn't figured it out yet. I know the whole you can't absorb it through your skin debate. I don't believe that myself but I do have small nicks in my fingers, I do put my hands on my food that goes into my mouth and I do believe I have been glutening myself in this way. Don't trust anything. You can go on line and check out the labs websites and get phone # and call the places to find out if the product has gluten in it or search the company's web sites most of them have a place that lists questions on their products and gluten is on a lot of them. I have found Unileaver and Kraft don't hide gluten and will list all sources of gluten in their products. Unileaver has a bunch of companies that are part of their group and they list them on line. Kraft is the same way. There is a big learning curve on this and you are just beginning. Hang in there it does get better.

Yellow Rose

[sickchick]

Congratulations to everyone who's showing improvements YAY!

[mftnchn]

I agree with what has been said, that improvements can be very slow. I have just reached 4 months, and it is still very up and down. When I looked up about my gene type, I found that my double DQ2 is associated with more severe disease and slower recovery. So I told myself I needed to be strict for a year at least before giving it up. It has been hard to wait!!!

Vitamins and minerals are good suggestions. Also realize that you could have other complicating factors. For me the biggie is lyme disease, also a lot of allergies, and elevated mercury. I have had to get on top of those as well to see progress. Brain fog is a big issue with lyme, but can be from other things as well.

Also you might consider a really good probiotic, be sure of the ingredients.

I just started taking L-glutamine, and I think it is helping. Check the posts here, some have had reactions to it.

[hathor]

It can take time. It seems to be rare for people to go off of gluten & casein and have all symptoms immediately clear up. I remember the first couple months being kind of rocky for me.

That said, you may be getting glutened regularly by something. You've been told about kitchen items and personal care products. What about ... licking envelopes? vitamins or other pills you regularly take? (For the latter, if they don't say "gluten free" you may need to contact the manufacturer.) Using a product where others might have stuck their gluten-crumbed knifes in there? Something you regularly eat that says it is processed on the same equipment or in the same facility as wheat? Any items where you haven't checked the ingredients yet? (Sometimes weird things get thrown in ... I can't seem to get my mind around a falafel mix that has soy sauce in it. I keep picking it up in the store and having to put it back.) Are you having oats?

A third alternative is that you have another intolerance in addition to gluten and casein. Soy seems to be a common one, and it is really ubiquitous in food & supplements (for the last one, you have to check with the manufacturer -- remember, they don't have to list allergens). You might try eliminating soy for a period and seeing if your symptoms improve. If you do this, soy lecithin seems to be OK because it doesn't have the protein in there. (For soy oil, it apparently depends on how it is processed.)

I know someone who got better over the course of a year but still had some problems. She tried eliminating soy (difficult since she's a vegetarian also) and found she immediately felt better. She only tried this because I was told my Enterolab that I have a soy problem. I never noticed one before (I'm also vegetarian). But then I found that I got better from eliminating it. It took some doing, since I found that my vitamins contained it (not on the label, naturally).

Stick with it. I hope you will get feeling better soon.

[Guest kivmom3]

I'm still new at this myself. I've been gluten free for 2 months now. I have a lot more good days than bad days now. I think I am about 50-60% better than I was before getting the diagnosis. That said, I am much happier feeling only 50-60% better. I do have days where my stomach hurts a bit, or I get bloated/gassy, headaches but overall feeling better.

I also take vitamins on a daily basis that are gluten free.

I think everyone heals differently. I know the "normal" time frame is 3-6 months.

Hang in there. If you are feeling a bit better, at least you are on the road to recovery.

Gg

[CtheCeliac]

I started gaining weight the first six weeks (gained 10 pounds) and then plateaued for a few months. From months 5-8 started feeling much better (gained another 10 pounds). Yeah! I'm headed into month nine and am amazed at how much more focused and organized I am with some work-related tasks.

Thanks for the reminder about vitamins. I have gluten-free vitamins I bought and need to start taking. I've heard some recent debates and questions about PABA in vitamins...any thoughts?

I recored a food journal of everything I ate (including caloric intake) the first six weeks to help identify any possible problems.

[7-cody]

It took me a good 2 months to feel like my brain fog was REALLY gone. But it probably took me almost that long to REALLY get the diet right.

Have you weeded out possibly hidden glutens in your home? Old cutting boards, wooden spoons, colanders, spice mixes, that sort of stuff? I made those mistakes for the first month and it was bad - the last thing we threw out was a pepper mill that hubby had bought at some discount store. He loved how it looked and even though we had no way of knowing if the pepper inside had wheat flour to prevent caking, he just wouldn't give the thing up. I finally told him it was me or the peppermill, darnit!!!

B12 is a good thing - you may not be absorbing it fully yet. Many on the boards recommend a subligual B12 that gets absorbed through the mouth and doesn't need to go through the intestines. You may need more that just B12, however.

I'm pretty sure I'm doing the diet right... the only thing I can think of is maybe cutting boards. I use Suave, gluten free shampoos, gluten free spices when cooking etc.

Can you tell me more about the sublingual B12? When I went to the health store I was told that the one I got, wich is powder I put into my drink was sublingual.

But yeah it's been a MONTH... did you feel any better a month later? I feel the same, actually I kinda feel worse sometimes... is it normal to feel worse in the recovery stage?

I've been at this since April and I am starting to feel better. It seems very slow going in the beginning. There have been little changes that looking back are adding up to quite a bit of improvement. The brain fog does go away but for me took at least 2 months. One thing I just figured out ( would like to blame it on brain fog HA!) is the ingrediant list. I read all the posts I could in the beginning and was obsessed on learning as much as I could. But, didn't get it until 2 days ago that even though the government requires company's to list the 8 major allergens wheat being one of them. I didn't catch that oats, barley, and rye, don't have to be listed because they are not one of the 8 and are hidden in food starch, natural flavorings, , caramel, spices, etc. I have gone back and rechecked everything and today discovered that my hand soap that I wash with at least 30 times a day (I run a daycare in my home) had gluten in it. I knew I was getting it from somewhere but hadn't figured it out yet. I know the whole you can't absorb it through your skin debate. I don't believe that myself but I do have small nicks in my fingers, I do put my hands on my food that goes into my mouth and I do believe I have been glutening myself in this way. Don't trust anything. You can go on line and check out the labs websites and get phone # and call the places to find out if the product has gluten in it or search the company's web sites most of them have a place that lists questions on their products and gluten is on a lot of them. I have found Unileaver and Kraft don't hide gluten and will list all sources of gluten in their products. Unileaver has a bunch of companies that are part of their group and they list them on line. Kraft is the same way. There is a big learning curve on this and you are just beginning. Hang in there it does get better.

Yellow Rose

Oh yeah.. thanks for the information. I've got brand names, grocery lists etc already... I've done all that hours of homework. I usually just print out a few gluten/casein free recipes and go shopping for them.

It took two months for your brain fog to go away? Did it just happen over night or slowly make progress each day? BEcause my brain fog, if anything, is worse now than it was before. Did you have days where you felt even worse while recovering?

It can take time. It seems to be rare for people to go off of gluten & casein and have all symptoms immediately clear up. I remember the first couple months being kind of rocky for me.

That said, you may be getting glutened regularly by something. You've been told about kitchen items and personal care products. What about ... licking envelopes? vitamins or other pills you regularly take? (For the latter, if they don't say "gluten free" you may need to contact the manufacturer.) Using a product where others might have stuck their gluten-crumbed knifes in there? Something you regularly eat that says it is processed on the same equipment or in the same facility as wheat? Any items where you haven't checked the ingredients yet? (Sometimes weird things get thrown in ... I can't seem to get my mind around a falafel mix that has soy sauce in it. I keep picking it up in the store and having to put it back.) Are you having oats?

A third alternative is that you have another intolerance in addition to gluten and casein. Soy seems to be a common one, and it is really ubiquitous in food & supplements (for the last one, you have to check with the manufacturer -- remember, they don't have to list allergens). You might try eliminating soy for a period and seeing if your symptoms improve. If you do this, soy lecithin seems to be OK because it doesn't have the protein in there. (For soy oil, it apparently depends on how it is processed.)

I know someone who got better over the course of a year but still had some problems. She tried eliminating soy (difficult since she's a vegetarian also) and found she immediately felt better. She only tried this because I was told my Enterolab that I have a soy problem. I never noticed one before (I'm also vegetarian). But then I found that I got better from eliminating it. It took some doing, since I found that my vitamins contained it (not on the label, naturally).

Stick with it. I hope you will get feeling better soon.

I don't lick envelopes, the other day I was at the post office and asked this lady (nicely) if she would please lick this envelope from me because "I get allergies". She was totally cool about it.

I've been so strict and working so hard on this diet that if I DID find out I'm being regularly glutened... well, that'd be frustrating. I'm pretty sure I'm 100% gluten-free.... the only thing I can think of is the sharing a kitchen issue. But I wipe the counters well before I cook. Double clean the pans, etc... clean the cutting board as well as I can (maybe I ought to get my own... but I'm the only one that really uses it really, and bread and stuff does it go on it -- not that it matters, true enough)

You said your first few months were rocky... by that do you mean somedays you felt a little better and then the next day you'd feel like a walking zombie that can't even complete a simple task properly? Then you put that on repeat and it's a rollercoaster ride back and forth, feel like crap, dead, feel like crap, dead, hey I feel kinda good... two hours later, dead.. etc etc

Can Enterolab test for soy? I don't think I'm eating any soy either way.. but you never, I'd have to check for that. My diet right now is basically steak, corn tortillas, chicken, salad mixes, omelets, fruits, veggies... and yeah, that's basically what I've been eating lately. I also snack on Corn chips and Pace Garlic Salsa often.

I started gaining weight the first six weeks (gained 10 pounds) and then plateaued for a few months. From months 5-8 started feeling much better (gained another 10 pounds). Yeah! I'm headed into month nine and am amazed at how much more focused and organized I am with some work-related tasks.

Thanks for the reminder about vitamins. I have gluten-free vitamins I bought and need to start taking. I've heard some recent debates and questions about PABA in vitamins...any thoughts?

I recored a food journal of everything I ate (including caloric intake) the first six weeks to help identify any possible problems.

I wish I could gain weight. I'm scrawny as hell -- if I hadn't lifted weights so much in my Basketball years, I'd be walking chopsticks. I guess I basically am anyway.

If I was going to gain weight though, wouldn't I be doing it by now?

Thanks guys...

P.S. Can it REALLY take 6 MONTHS for brain fog to go away... I just started College again and it's hard to do anything feeling this way...

[babygirl1234]

omg i cheated and had cake the other day and wanna talk about stomach pains they where bad, my aunt said "no more cake for you" LOL because she though it wouldnt brother me hello of couse it gonna brother me it isnt gluten-free LOL and my stomach doctor said it can take up to 2 weeks to get back to normal

[newlyfree]

I'm pretty sure I'm doing the diet right... the only thing I can think of is maybe cutting boards. I use Suave, gluten free shampoos, gluten free spices when cooking etc.

Can you tell me more about the sublingual B12? When I went to the health store I was told that the one I got, wich is powder I put into my drink was sublingual.

But yeah it's been a MONTH... did you feel any better a month later? I feel the same, actually I kinda feel worse sometimes... is it normal to feel worse in the recovery stage?

The sublinguals I use go under the tongue and dissolves there, getting absorbed right into the bloodstream. I am not sure, but if you're drinking a powder, I'd assume it goes straight into the damaged gut which can't really absorb anything right now.

I know you feel crappy, but hang in there, some people (like me) just take longer to heal. I'd go with some of the advice of others here, too - try cutting out soy (if you haven't already) and see how that goes. Try a food diary - see if your symptoms get better/worse after you eat something specific. Make sure you call the manufacturer on any item you're not sure of, because they don't have to list everything on the label.

It's normal to have ups and downs during recovery. A month really isn't a very long time to heal - I know you feel a time crunch because school is approaching, but hang in there. It will get better. And you did say your reflux is gone, so that's still progress! Don't sell yourself short!

[7-cody]

The sublinguals I use go under the tongue and dissolves there, getting absorbed right into the bloodstream. I am not sure, but if you're drinking a powder, I'd assume it goes straight into the damaged gut which can't really absorb anything right now.

I know you feel crappy, but hang in there, some people (like me) just take longer to heal. I'd go with some of the advice of others here, too - try cutting out soy (if you haven't already) and see how that goes. Try a food diary - see if your symptoms get better/worse after you eat something specific. Make sure you call the manufacturer on any item you're not sure of, because they don't have to list everything on the label.

It's normal to have ups and downs during recovery. A month really isn't a very long time to heal - I know you feel a time crunch because school is approaching, but hang in there. It will get better. And you did say your reflux is gone, so that's still progress! Don't sell yourself short!

I wasn't officially diagnosed with reflux or anything... but all my life I couldn't go anywhere near my throat or I'd cough up food into my mouth... from uhh.. my throat? Anyway it sounds like reflux to me and it wasn't bad by any means, but I definitely had something going on. Now, like just barely I tried this, I can stick my finger as far into my throat as I can and it doesn't do much... I'm definitely not puking or tasting anything. Sorry about all the details.

My nose isn't nearly as stuffy now... it feels more cleared up.

This is all my improvements so far, otherwise I feel the same. I'm going to stay on the diet by all means (I'm actually considering using a Paleo approach, it just makes so much sense to me) but at the same time I'm extremely discouraged. It's hard to do anything right now. I can live with a headache or fatigue, but this brain fog just (*@(*^ me off. And the mood swings too... I can't do anything properly. I constantly get side tracked and do something wrong, or my mind just spaces out, etc...

But yeah, hopefully it doesn't take 6 months! lol ... that would suck.

edit: what sublingual vitamin brand do you use?

[confused]

I had good and bad days for about 3-4 months. I have finally felt great for 2 weeks straight and it is great. I have been gluten free for about 5 months. I had problems with fritos for the first 3 months. I can now finally eat them and have no reaction. Maybe cut them out for about 2 weeks and see if you feel better.

paula

[celiacgirls]

I only feel totally symptom free if I stay out of restaurants. I only eat at gluten-free friendly restaurants but even then, probably half the time, I notice that my brain fog and irritability are back for more than 2 weeks. It also feels worse to me now than it did before I went gluten-free. I'm not sure if it really is worse or if I'm just used to feeling better.

[7-cody]

I only feel totally symptom free if I stay out of restaurants. I only eat at gluten-free friendly restaurants but even then, probably half the time, I notice that my brain fog and irritability are back for more than 2 weeks. It also feels worse to me now than it did before I went gluten-free. I'm not sure if it really is worse or if I'm just used to feeling better.

What restaurants are you going to? And how good is 'good'? =p Like when you felt good did you have tons of energy, a clear and strong mind, etc?

[jesscarmel]

i defintley felt way worse when i first went off the diet and i was mad because alot hte books/articles falsely say that you will feel better within a week or month. it took at least 6 months before i started to feel better.....i think its normal to not feel better right away. everyone is different. my dad felt better within a month of starting the diet

i shoudl also say that i started to feel better when i made the entire house gluten free- threw out all gluten stuff my husbadn was eating and did not allow it in the house- not for everyone but worked for me. i also started taking a probiotic- culturelle which seemed to help

[7-cody]

i defintley felt way worse when i first went off the diet and i was mad because alot hte books/articles falsely say that you will feel better within a week or month. it took at least 6 months before i started to feel better.....i think its normal to not feel better right away. everyone is different. my dad felt better within a month of starting the diet

i shoudl also say that i started to feel better when i made the entire house gluten free- threw out all gluten stuff my husbadn was eating and did not allow it in the house- not for everyone but worked for me. i also started taking a probiotic- culturelle which seemed to help

What's a probiotic- culturelle?

and judging from your pic ( that is your right?) do you/did you have rosacea or any skin disorder? I have really bad rosacea. As long as I remember, probably since I was 6 or 7 I've had the darkest reddest cheeks... does the diet help that at all>

thanks in advance...

edit: I just realized how rude my question sounded! You're very pretty... no worries there=p

[mftnchn]

7_Cody,

I agree with what many have already said about being patient, it takes awhile.

That said, my brain fog and fatigue also worsened. Within a month it was clear that my lyme disease had recurred. No one knows if this was related to going Gluten-free Casein-free, or was inevitable after going off all treatments for it early this year. My guess is that they are related. Perhaps my immune system starting waking up once the gut started the healing process.

After started to treat the lyme disease again, after 2 weeks, my head started to clear, and within 4 days I was mostly clear. Fatigue has taken a little longer.

If you continue to not get better, eventually it may be important to look for co-existing conditions. Brain fog and fatigue are also symptoms of candidiasis and heavy metal toxicity. There could be other reasons too.

[hathor]

You said your first few months were rocky... by that do you mean somedays you felt a little better and then the next day you'd feel like a walking zombie that can't even complete a simple task properly? Then you put that on repeat and it's a rollercoaster ride back and forth, feel like crap, dead, feel like crap, dead, hey I feel kinda good... two hours later, dead.. etc etc

Can Enterolab test for soy? I don't think I'm eating any soy either way.. but you never, I'd have to check for that. My diet right now is basically steak, corn tortillas, chicken, salad mixes, omelets, fruits, veggies... and yeah, that's basically what I've been eating lately. I also snack on Corn chips and Pace Garlic Salsa often.

Well, my first few months I was learning not to gluten myself. So there was that problem. Also it seemed like my intestines were manic depressive at times for no apparent reason. My theory is that they were detoxifying and getting used to not consuming gluten or soy. I know at week 3 I had an inexplicable bout of amazing diarrhea (my usual problem my entire life was the reverse -- I didn't even know I could HOLD that much ). Several times I've seen people hear report that the same happened to them. I had a few cycles of that pattern in subsequent weeks, although not as extreme as the week 3 blow out.

Of course, my difficulty could have been made worse by my idiotic and clueless slathering of my hair with wheat protein. How I missed that for so long I don't know! Must have been the gluten making me stupid

Brain fog I just got when I was glutened. Or I figured I had been ... I could usually trace it to something, though. Fortunately, my brain fog lifts in a couple days. Or at least when I get trace amounts of gluten it does; it could be if I got a substantial amount now I would fog up for weeks.

Yes, Enterolab tests for soy. That test is bundled in with tests for egg and yeast.

You might want to look up the thread talking about tostitos. Apparently there is a cross contamination problem with certain types or runs of corn chips. You might see if you can track symptoms to times you have chips or cut out the chips and see how you feel. I think I've seen other threads about problems some have with corn chips as well. You might search this site for any mention of the type of chips you eat or start a thread about them. Of course, many chips and other processed foods contain soybean oil, so if you have a problem with soy, you would react to them.