Does It Really Take Six Months?

[IrishKelly]

I've been gluten-free for about 6 weeks and DF for about 3 weeks. Last week was the first week that i started to feel a litte bit better and them BAM...3 days ago i started to det the big DH again ....my dr. said it could take up to six months to get better...has this happened to anyone else where you thought you were going to get better and then it hit you again? And if so, did it ever get better for the most part? It's really starteing to make me feel sad again now. I hope it gets better soon

[Corkdarrr]

It's only been about two months for me. The first week I felt amazing. I felt in perfect health. It was then that I realized how crappy I'd been feeling all along.

Then a week later I crashed and it's been a string of detox, migraines, and accidental glutenings ever since. But I still remember that one week because it wasn't so far away. And I know I can feel like that again if I just stick to it.

It's SO hard though, isn't it?

[RiceGuy]

It's been about two years for me I think. Still I'm struggling with symptoms. The way I see it is: I had many years of undiagnosed gluten intolerance, so much damage has been done. It's going to take time in my case.

Believe me it does get easier, and six weeks is nothing compared to the rest of your life being gluten-free! You'll likely find all sorts of new allergies/intolerances, which may account for your recent trouble. Surf this board for loads of ideas on what it might be, but the standard set is dairy, eggs, soy, tree nuts, peanuts, sugar, yeast, and of course any common allergen type food such as those listed on Celiac.com. Also don't overlook skin/hair care products, cosmetics, etc.

Many will advise to eliminate as many as you can, if not all suspects. Then add one at a time back in to your diet until you find one that triggers symptoms. I'd have to give each up to two weeks to be relatively certain. Others may react even in the same hour!

[IrishKelly]

It's only been about two months for me. The first week I felt amazing. I felt in perfect health. It was then that I realized how crappy I'd been feeling all along.

Then a week later I crashed and it's been a string of detox, migraines, and accidental glutenings ever since. But I still remember that one week because it wasn't so far away. And I know I can feel like that again if I just stick to it.

It's SO hard though, isn't it?

It is hard!! I hope one day this gets waaaayyyyy better! I usually have a very positive attitude about it, like i know if i stick to the diet it will get better, but this DH that started to really bother me again is driving me nuts...i refuse to leave my house when it gets like this. Oh well, i'll just have to wait another 5 months to see what happens i guess...i'm very hopeful there is a light at the end of this very long tunnel though, thanks for the reminder

[queenofhearts]

Six months may seem like a very long time, especially now when you're having to struggle to learn all the do's & don'ts, but in the grand scheme of things it is really not so long. And consider that your DH symptoms may be the result of an accidental glutening. Have you been scrupulous about cross-contamination, cosmetics, & so on?

Hang in there, you WILL feel better.

Leah

[IrishKelly]

It's been about two years for me I think. Still I'm struggling with symptoms. The way I see it is: I had many years of undiagnosed gluten intolerance, so much damage has been done. It's going to take time in my case.

Believe me it does get easier, and six weeks is nothing compared to the rest of your life being gluten-free! You'll likely find all sorts of new allergies/intolerances, which may account for your recent trouble. Surf this board for loads of ideas on what it might be, but the standard set is dairy, eggs, soy, tree nuts, peanuts, sugar, yeast, and of course any common allergen type food such as those listed on Celiac.com. Also don't overlook skin/hair care products, cosmetics, etc.

Many will advise to eliminate as many as you can, if not all suspects. Then add one at a time back in to your diet until you find one that triggers symptoms. I'd have to give each up to two weeks to be relatively certain. Others may react even in the same hour!

Is it at least much better than 2 years prior to the gluten-free diet?

Six months may seem like a very long time, especially now when you're having to struggle to learn all the do's & don'ts, but in the grand scheme of things it is really not so long. And consider that your DH symptoms may be the result of an accidental glutening. Have you been scrupulous about cross-contamination, cosmetics, & so on?

Hang in there, you WILL feel better.

Leah

Ya know, i haven't had any gluten or dairy which i am sure of beacuse of my food choices...however, i tryed to do a detox kit and some orthobiotics (replacing the good bacteria into my digestive tract and flushing out my system) and i'm just wondering if that triggered this to come on this strong again...what do you think? It seemed like the day after i started to detox kit and the orthobiotics it came back like before i started the diet!

[queenofhearts]

I've only been on the diet 2 1/2 months, & I'm already noticing distinct results. I think I'm beginning to absorb iron for the first time in many years, & my strength & endurance are improving. It took 2 months before I started to feel this way, & I have enormous hope about the future.

One thing is, I am 50 & from your pic I'm guessing you are a lot younger! That gives you an advantage since not as much damage has been done, & you still have the youthful resiliance & quicker healing. So it may not take so long.

Is it at least much better than 2 years prior to the gluten-free diet?

Ya know, i haven't had any gluten or dairy which i am sure of beacuse of my food choices...however, i tryed to do a detox kit and some orthobiotics (replacing the good bacteria into my digestive tract and flushing out my system) and i'm just wondering if that triggered this to come on this strong again...what do you think? It seemed like the day after i started to detox kit and the orthobiotics it came back like before i started the diet!

I'm not sure if there might have been gluten in those-- think some orthobiotics may be suspect-- but in any case, I'd drop them right away & see what happens. And also are you absolutely sure about the cross contamination? It takes very little to set off a reaction. Shared cutting boards, peanut butter... really eliminate any chance of contamination.

[IrishKelly]

I've only been on the diet 2 1/2 months, & I'm already noticing distinct results. I think I'm beginning to absorb iron for the first time in many years, & my strength & endurance are improving. It took 2 months before I started to feel this way, & I have enormous hope about the future.

One thing is, I am 50 & from your pic I'm guessing you are a lot younger! That gives you an advantage since not as much damage has been done, & you still have the youthful resiliance & quicker healing. So it may not take so long.

Thanks for the positive advice I am excited to see what happens over the course of the next 6 months.

I've only been on the diet 2 1/2 months, & I'm already noticing distinct results. I think I'm beginning to absorb iron for the first time in many years, & my strength & endurance are improving. It took 2 months before I started to feel this way, & I have enormous hope about the future.

One thing is, I am 50 & from your pic I'm guessing you are a lot younger! That gives you an advantage since not as much damage has been done, & you still have the youthful resiliance & quicker healing. So it may not take so long.

I'm not sure if there might have been gluten in those-- think some orthobiotics may be suspect-- but in any case, I'd drop them right away & see what happens. And also are you absolutely sure about the cross contamination? It takes very little to set off a reaction. Shared cutting boards, peanut butter... really eliminate any chance of contamination.

I'll have to go over eveything in the kitchen again...maybe that husband of mine accidentally used my vegan buttery spread or something...how many days does it take for you to recooperate if something sets you off?

[Ursa Major]

I am not sure what you mean when you say DH. Are you talking about Dermatitis Herpetiformis, or diarrhea? If you're talking about dermatitis herpetiformis, it can take up to two years (for some longer) before the outbreaks stop, after going gluten-free. If you're talking about diarrhea, then your doctor is right, it can definitely take at least six months.

And, as riceguy says, you may have other intolerances as well. It's the rare celiac person who doesn't.

Have you truly eliminated all possibilities of cross contamination and other gluten sources? Have you checked all your hair products, soap, lotions, lipstick/chapstick etc. for things like wheat germ oil, barley extract, oat bran etc., and replaced the ones that did with safe brands? Don't overlook products containing vitamin E, as it is often derived from wheat germ oil (the way to know if it is or not, is to call the manufacturer).

Did you buy a new toaster for your gluten-free bread? A new colander for your gluten-free pasta, a new cutting board? Have you replaced wooden cooking spoons and scratched non-stick pots and pans? Those are all sources of cross contamination, as none can be cleaned sufficiently of the gluten they have accumulated.

[IrishKelly]

I am not sure what you mean when you say DH. Are you talking about Dermatitis Herpetiformis, or diarrhea? If you're talking about dermatitis herpetiformis, it can take up to two years (for some longer) before the outbreaks stop, after going gluten-free. If you're talking about diarrhea, then your doctor is right, it can definitely take at least six months.

And, as riceguy says, you may have other intolerances as well. It's the rare celiac person who doesn't.

Have you truly eliminated all possibilities of cross contamination and other gluten sources? Have you checked all your hair products, soap, lotions, lipstick/chapstick etc. for things like wheat germ oil, barley extract, oat bran etc., and replaced the ones that did with safe brands? Don't overlook products containing vitamin E, as it is often derived from wheat germ oil (the way to know if it is or not, is to call the manufacturer).

Did you buy a new toaster for your gluten-free bread? A new colander for your gluten-free pasta, a new cutting board? Have you replaced wooden cooking spoons and scratched non-stick pots and pans? Those are all sources of cross contamination, as none can be cleaned sufficiently of the gluten they have accumulated.

Oh yeah, diarrhea, and i haven't replaced my cutting boards, colander, pans, etc... I just wash everything twice before i use them...not a good idea?

[CarlaB]

You're not alone here, many of us get discouraged! I've been gluten-free for 8 months, dairy free for 2 and have been in a slump for the past three months. I think a lot of it has to do with detoxing the poisons that our bodies have had to deal with for all the years we were eating them! If you did a detox, I would think that it could have just released the toxins faster than your body was able to comfortably deal with.

On the other hand, if you haven't actually replaced stuff in your kitchen, you could just be reacting to them now because most of us become more sensitive to gluten once we're not eating it on a daily basis.

BTW, I'm 43. I think the younger you are, the easier and faster you are able to start feeling better.

[Ursa Major]

Oh yeah, diarrhea, and i haven't replaced my cutting boards, colander, pans, etc... I just wash everything twice before i use them...not a good idea?

No, not a good idea at all. If your cutting boards are wood, no amount of washing will get the gluten out of them. Pans are okay if they're stainless steel, because you can scrub them properly. Plastic colanders are impossible to clean properly.

Also, I had celiac disease symptoms all my life, but never enough for doctors to clue in. But last year in May when I tried a bowel cleanse, it appeared to have been the last straw, and I went into full-blown celiac disease (I stopped the cleanse, of course). I had completely watery diarrhea for six months, starting one week into the bowel cleanse, until the beginning of October. Things would go right through me within twenty minutes. Until the day after I eliminated gluten, that stopped it immediately.

So, I don't think your bowels had healed enough to be able to tolerate a bowel cleanse. There may not have been any gluten in any of it, it was just too much roughage at this point.

I was unable to eat anything raw (fruit and lettuce included) for six months after going gluten-free, as raw veggies and fruits would give me stomach cramps and diarrhea. I had to cook everything, and I mean, cooked until really done, no crunchiness allowed, or I'd regret it within minutes.

So, stop the bowel cleanse (I can't see anything with the orthobiotics, but who knows) and cook your food, and you may notice a huge difference right away. And don't eat much at any one sitting, have several small meals over the day.

Oh, and when you say DH, that either means dear husband or dermatitis herpetiformis (and hopefully the context will let us know which is which ). When we mean diarrhea, we just call it D, or the 'big D'.

[IrishKelly]

No, not a good idea at all. If your cutting boards are wood, no amount of washing will get the gluten out of them. Pans are okay if they're stainless steel, because you can scrub them properly. Plastic colanders are impossible to clean properly.

Also, I had celiac disease symptoms all my life, but never enough for doctors to clue in. But last year in May when I tried a bowel cleanse, it appeared to have been the last straw, and I went into full-blown celiac disease (I stopped the cleanse, of course). I had completely watery diarrhea for six months, starting one week into the bowel cleanse, until the beginning of October. Things would go right through me within twenty minutes. Until the day after I eliminated gluten, that stopped it immediately.

So, I don't think your bowels had healed enough to be able to tolerate a bowel cleanse. There may not have been any gluten in any of it, it was just too much roughage at this point.

I was unable to eat anything raw (fruit and lettuce included) for six months after going gluten-free, as raw veggies and fruits would give me stomach cramps and diarrhea. I had to cook everything, and I mean, cooked until really done, no crunchiness allowed, or I'd regret it within minutes.

So, stop the bowel cleanse (I can't see anything with the orthobiotics, but who knows) and cook your food, and you may notice a huge difference right away. And don't eat much at any one sitting, have several small meals over the day.

Oh, and when you say DH, that either means dear husband or dermatitis herpetiformis (and hopefully the context will let us know which is which ). When we mean diarrhea, we just call it D, or the 'big D'.

I did stop everything i was taking...i want to leave my body alone and let it heal. I'll have to replace my things too. Thanks

Thank you everybody for listening and helping, my hubby gets tired of hearing me ask him when this D is going to go away!!

[Carriefaith]

I started feeling better within 6 months on the gluten-free diet, however, most of my symptoms did not disappear until 1 year on the diet. I believe this was becasue of a few things:

1. I was eating chips on a regular basis that were gluten-free but contaminated

2. I was having problems with dairy and I was still eating some dairy like in margerine and boost (I recently found out that I'm allergic to dairy).

[IrishKelly]

I started feeling better within 6 months on the gluten-free diet, however, most of my symptoms did not disappear until 1 year on the diet. I believe this was becasue of a few things:

1. I was eating chips on a regular basis that were gluten-free but contaminated

2. I was having problems with dairy and I was still eating some dairy like in margerine and boost (I recently found out that I'm allergic to dairy).

Wow, you sound very similar to me with your sympstons. What kind of chips were you eating that were gluten-free but contaminated? And, have you found any positive signs to being yeast free? (oh yes, and did the D get alot better over the six month mark?)

[darlindeb25]

I have been gluten free for 5 yrs last month and still am finding intolerances I didn't realize I had. It's tough, some times a very hard "row ro hoe". At any rate, the alternative, living with gluten, is so much scarier than where I am now. Keep at it. Deb

[Carriefaith]

The chips were Humpty Dumpty and when I stoped eating them I started feeling better, those chips were gluten contaminated (Lays chips also bother me, but I think it is dairy contamination).

I actually haven't gone yeast free for any extended period of time. My skin prick reaction was very low (only 1 star).

After the 6 month mark, I still got episodes of D, but I believe it was because of contamination and the small amounts of dairy I was eating.

[IrishKelly]

Thanks Deb and Carrie...if it weren't for all of you out there i would probably still be sulking in my sorrows over this whole gluten nightmare...at least in know not to get depressed anymore because i just need to stick with my diet

[sillyyak]

It took me 6 months to feel better after I was forced to go gluten free. It was a horrile process. I consider myself to be "in recovery from gluten" with , of course, possibility of relapse. I am of the mindset that gluten is an addictive substance.

[IrishKelly]

It took me 6 months to feel better after I was forced to go gluten free. It was a horrile process. I consider myself to be "in recovery from gluten" with , of course, possibility of relapse. I am of the mindset that gluten is an addictive substance.

I hear Ya!!

[KaitiUSA]

For some it is less than that and for some its more. It took me longer than that

[RiceGuy]

Is it at least much better than 2 years prior to the gluten-free diet?

Ya know, i haven't had any gluten or dairy which i am sure of beacuse of my food choices...however, i tryed to do a detox kit and some orthobiotics (replacing the good bacteria into my digestive tract and flushing out my system) and i'm just wondering if that triggered this to come on this strong again...what do you think? It seemed like the day after i started to detox kit and the orthobiotics it came back like before i started the diet!

In many ways it has made a world of positive differences. In other ways not so much, especially as the other intolerances show up. When the body is so loaded down with gluten, you just can't tell what else bothers you, or the body simply can't react to it all. That's the general thinking on the issue anyway.

The gluten-free diet isn't something I dreaded very much, except for stuff like pasta and peanut butter sandwiches, along with just not having to scrutinize ingredients even more than I was already doing (I was already sugar-free, yeast-free). Little did I know at the time how many alternatives there are. It's a good thing I already enjoyed rice often, as that has been my staple for the most part. Rice is by far the staple grain of the world, though Americans generally think of wheat when they think of grain. Many may be surprised to know that the US and Canada both grow and export rice!

As for the detox stuff:

I recently looked into that, and what I found is that most if not all are actually a bunch of laxatives (even the herbal ones), followed by a bunch of psyllium fiber. That fiber soaks up a LOT of water, which is why the kits say to drink so much. It expands to something like 50 times its volume, and when you finally get that through your gut it makes a very convincing exit, making the individual believe the detox works wonders. However, in this whole process, the laxatives purge your system of vital nutrients, which we Celiacs are already typically and chronically low on. My advice would be to forget those detox kits, and if you want to do something good for your gut, eat apples! Prunes are also very good for your gut (and the rest of you), as are so many other safe foods. Magnesium deficiency is quite common for Celiacs as well (though the typical American could also use more of it), and a lack of it will impact digestion, which then effects the rest of your system, as nutrients aren't so well absorbed.

At about six months of being totally gluten-free, I began noticing some improvement - first in the way my system was able to finally move food through the digestive tract. What a relief! This lasted maybe 5-6 months, then began to slow up some. I started wondering what I was doing wrong. Until recently I had no idea what nightshades were doing to me, so I spent the next year or more struggling. This is just one more reason why I suggested to watch for additional intolerances. From what I've read, the first damage to the gut can easily result in lactose intolerance, which explains why so many here must avoid dairy. I believe I also experienced a reaction to casein (the primary protein in milk), and that is used in a lot of processed food products.

[Guest nini]

six months is the MINIMUM... average is about 2 years... some people heal faster and others take longer. I've been gluten-free for 3 1/2 year now and only occassionally have bouts of D usually from cross contamination in my kitchen. And yes you have to be so careful with cross contamination.

If you haven't already replaced scratched non stick pans or replaced cast iron pans, or replaced wooden cutting boards and spoons, collanders, toaster, etc. then you need to. Yes it's that important. And also replace any personal care products like makeup, shampoo, lotion, etc... as even though it's not supposed to be absorbed through the skin, if you get it on your hands and your hands inadvertently make it near your mouth, you can easily be glutened. There was an interesting post a while back about if you don't believe how much of your shampoo and conditioner makes it into your mouth during a shower, try rinsing your hair with baking soda one day and see just how much of it you end up tasting! (I tried it and it's gross)...

[gfp]

Wow, you sound very similar to me with your sympstons. What kind of chips were you eating that were gluten-free but contaminated? And, have you found any positive signs to being yeast free? (oh yes, and did the D get alot better over the six month mark?)

This really is the killer!

When you first start at riceman says you have accumulated damage...

This means other things can also give you D and in either case the less irritation the faster they heal.

Many of us find gluten free a long journey.

We start off sharing cutting boards and stuff .. our first impressions are good and then we clean out the gluten and then our body starts to adjust to like without it and WHAM... we react to the slightest thing...

This is the pain in the butt phase... (pun intended)

Between purging the gluten and healing the villi.... and this phase can last a few weeks to a few years.

How long depends on your overall health and lots of other factors BUT what most of us find is that when we thought we were gluten-free .. we weren't. Also dairy/soy etc. irritate a lot of us and it takes time .. once the villi heal many of us can eat dairy and soy again! (usually in moderation)

If you want to cut down the worst phase then as already suggested... cut out anything possibly contaminated.... clean out ALL gluten from your kitchen.(everything ursual said). don't eat out and if you can take your own food. Cut out dairy and soy.. you can't really cut out yeasts, its impossible.. you breath them all the time but obviously some types are a lot worse than others (and some you would die without)...

Noone can promise how long it will take, its really quite individual... but if you do go the whole hog I im pretty sure you see results much faster.

Slowly reintroduce things.... as Riceman said one at a time... you will know when its right (and then wait a week) ...

Six months is the MINIMUM... average is about 2 years... some people heal faster and others take longer. I've been gluten-free for 3 1/2 year now and only occassionally have bouts of D usually from cross contamination in my kitchen. And yes you have to be so careful with cross contamination.

I think the six months depends.... most of us probably didn't start our gluten-free diet in the best way....(I certainly didn't) but the thing is once you get to a certain point the odd CC doesn't set back the OVERALL healing process.

Its a bit like bringing up kids.... everyone has their own ideas and the one certain thing is there is no foolproof way to do it... you just do your best from day to day. However at the moment you and the disease are codependant... you are trying to heal but each CC or mistake sets you back...

A bit further down the road you won't need to be quite so attentive... like kids you have got this for life and like kids ... it will keep coming back but just like as the kids get older and they can look after themselves you will be the same.

At the begining its a constant thing... it wakes you up in the night, drains your resources and ...... but if you continue it gets easier and easier.

[IrishKelly]

six months is the MINIMUM... average is about 2 years... some people heal faster and others take longer. I've been gluten-free for 3 1/2 year now and only occassionally have bouts of D usually from cross contamination in my kitchen. And yes you have to be so careful with cross contamination.

If you haven't already replaced scratched non stick pans or replaced cast iron pans, or replaced wooden cutting boards and spoons, collanders, toaster, etc. then you need to. Yes it's that important. And also replace any personal care products like makeup, shampoo, lotion, etc... as even though it's not supposed to be absorbed through the skin, if you get it on your hands and your hands inadvertently make it near your mouth, you can easily be glutened. There was an interesting post a while back about if you don't believe how much of your shampoo and conditioner makes it into your mouth during a shower, try rinsing your hair with baking soda one day and see just how much of it you end up tasting! (I tried it and it's gross)...

Wow...that baking soda thing sounds pretty interesting!

This really is the killer!

When you first start at riceman says you have accumulated damage...

This means other things can also give you D and in either case the less irritation the faster they heal.

Many of us find gluten free a long journey.

We start off sharing cutting boards and stuff .. our first impressions are good and then we clean out the gluten and then our body starts to adjust to like without it and WHAM... we react to the slightest thing...

This is the pain in the butt phase... (pun intended)

Between purging the gluten and healing the villi.... and this phase can last a few weeks to a few years.

How long depends on your overall health and lots of other factors BUT what most of us find is that when we thought we were gluten-free .. we weren't. Also dairy/soy etc. irritate a lot of us and it takes time .. once the villi heal many of us can eat dairy and soy again! (usually in moderation)

If you want to cut down the worst phase then as already suggested... cut out anything possibly contaminated.... clean out ALL gluten from your kitchen.(everything ursual said). don't eat out and if you can take your own food. Cut out dairy and soy.. you can't really cut out yeasts, its impossible.. you breath them all the time but obviously some types are a lot worse than others (and some you would die without)...

Noone can promise how long it will take, its really quite individual... but if you do go the whole hog I im pretty sure you see results much faster.

Slowly reintroduce things.... as Riceman said one at a time... you will know when its right (and then wait a week) ...

Thanks for the advice...and the pun intended