How long til feel effects from gluten free

Hi, I've been gluten free for 3 weeks and feel no effects. I stopped coffee 3 days ago hoping that would help but it hasn't..... yet. How long does it take for gluten to get out of your system? I know the scd diet is another option but I need to go one step at a time. I'm a compulsive overeater when I have an appetite so going gluten free completely was challenging enough. I can't imagine doing SCD. Any thoughts? I currently take Remicade (dose was just doubled) and stopped Imuran on my own. Remicade isn't helping. I'm so frustrated.

Hate to say it, but if you haven't felt *any* difference by now, you're probably not going to. I tried a gluten-free diet for six weeks a few years ago, and saw no change to any of my symptoms.

I do think diet is overrated. Yes it can work miracles for some people. But at the same time very few people rely on diet alone. Most are on lots of supplements, or LDN, or a conventional med, or whatever. When you try 12 different things at once, I don't see how you can possibly tell which is responsible for your remission and which isn't.

The only thing I can suggest, dietwise, is to cut out all processed foods. There's an awful lot of GF-free commercial products nowadays, but most of them have as much preservatives and sugar as their non-GF counterparts. Maybe that might make more of a difference. I do feel for you though. I haven't yet been able to make myself try the SCD; my heart sinks whenever I seriously contemplate it.

Edit: Sorry, just had another thought. Can you tolerate Ensure? And nothing else except Ensure for 4-6 weeks? If so, you might want to consider trying a liquid diet. Liquid diets do actually have a good track record of getting people into remission, but even if you don't end up in remission, it might still give you a bit of a break.

Post Edited (NiceCupOfTea) : 5/22/2012 1:40:40 PM (GMT-6)

Or gluten-free might just not work for this particular person...

This is what gets to me the most about, for want of a better word, 'alternative treatment' types. They just never accept that sometimes diet simply doesn't work. Instead it's always a variation of 'give it a few more weeks/months/years' or 'cut out even more stuff'. I have no problem accepting that meds don't work for everyone, why do you find it so impossible to believe your diets and supplements don't work for everyone?

I don't think I was bashing other approaches; I was bashing the idea that other approaches are incapable of failing...

The way InSoFla put it, she made it sound like the topic creator was doing something wrong, either by not giving it long enough or by ingesting the wrong food. I don't mean to say it was done on purpose. I'm sure it wasn't, but that's the implication of her post. I just wanted to point out that sometimes diets don't work and it's not because the dieter has done it wrong; the diet just doesn't work for them.

I don't think that's such a controversial thing to say; but I do see that my last post is a bit abrasive, so if you or a mod want to delete it, be my guest...

NCOT- I did not take InSoFla post that way at all. In fact, quite the opposite. In my opinion, you constantly bash many posters who talk alternative methods. Please remember, not every person can or will take pharmaceuticals and we want to hear what others have done to help their situation. This forum is about sharing ideas that may or may not work. Each person is individual but we should have the opportunity to decide what is in our best interest without someone interfering with negative comments.

Take care!

NCOT- I did not take InSoFla post that way at all. In fact, quite the opposite.

Fair do's.

In my opinion, you constantly bash many posters who talk alternative methods.

Only person I ever bashed was InSoFla. I could justify myself all over again, but I wouldn't say anything different to last time and you still wouldn't believe me, so let's not, eh?

Please remember, not every person can or will take pharmaceuticals and we want to hear what others have done to help their situation

How can I put this tactfully? Okay. Let's say I wanted to heavily promote Remicade. Then this is what I'd do. I'd post about Remicade in every single reply of mine. I'd make threads about Remicade as often as I could decently get away with. I'd invite people to email me about Remicade at any opportunity.

Have you ever seen me do that? Do you even know that I'm on Remicade? In other words, do you know a single thing about my situation? I don't care if you do or not; my point is I do not push anything onto anybody. I make suggestions about different drugs or diets and I try to tailor my suggestions to the individual. I do not have a stock reply that I can bring out and copy and paste.

Each person is individual but we should have the opportunity to decide what is in our best interest without someone interfering with negative comments.

You, InSoFla, etc. are considerably more negative about conventional drugs and surgery than I am about alternative treatments, I'm afraid. Refering to surgery as 'barbaric' (I do not know if that was you; but certainly somebody on the UC board did) is about as negative and off-putting as it gets. Ridiculous, when surgery is literally and metaphorically a lifesaver for thousands of people. You should be grateful we live in an age of safe surgery.

You're welcome. Sorry for the, er, diversion... >_>

LDN = Low Dose Naltrexone. Wiki link here... en.wikipedia.org/wiki/Low-dose_naltrexone

It's pretty sceptical. Being wiki, I thought it would be duller than that - was trying to find a completely neutral article :-/

Anyhow, if you search LDN on HW you'll find loads of threads about it. If you search for LDN + Crohn's, you'll get mainly results from the Crohn's board. Pro-tip: if you do ask your doctor about LDN, make sure you include the full title. Just asking for Naltrexone will result in a surefire 'no', since [full dose] Naltrexone is used to treat drug addicts.

NCOT- This is the last time I will respond to your attacks and normally I would simply ignore someone like you but I need to set the record straight before I put you on ignore.

First of all, You have bashed me and others on this board and the UC board. We are who you bashed although I am sure you do not remember since you say one thing in one post and something totally different in another post.

Second- InSoFla has never "promoted " anything. She is open about what has worked for her and has an open door policy if anyone has questions, they are more than welcome to email her. She has never pushed a single thing on me or anyone else I have chatted with so where that is coming from I have no idea. As for you and Remicaid, I have no idea what you are talking about. I am pretty sure if you take Remicaid and it worked well for you, then you would want to tell others and I have no problem with that at all. That is what this board is all about. Sharing what worked for us.

In your last paragraph, you again attack InSoFla but she hasn't said a word to defend herself. She probably has you on ignore, just as I will. I, pmedic, am the person who made those comments to you and only me. I have never seen her say anything about surgery being barbaric and I find this especially offensive because now you are flat out making accusations when you don't even know
( in your own words) who said that about surgery. I think you owe me and InSoFla an apology.

For many years I used to post in another place about LDN. Two of the users there always disagreed with me and was really negative that LDN could work. They adviced others to stay away from it, without knowing too much aboout it. They actually knew nothing, but still they convinced other people that LDN was a scam.

Going gluten free could be a good thing, and I have followed some doctors sites about how the protein called "gluten" in flours could create inflammation and / or allergy in the small intestines. When there is an allergy, it's called celiacy. When the gluten is creating inflammation it's called gluten sensitivity.
To avoid gluten craves a lot of work from us, we have to learn to cook, we have to read all labels we have to learn that vitamins, beer and a lot of other foods are containing gluten.

This knowledge will take time to get, and during this long and difficult learning process we may fail, we may eat something that leads to another gut reaction if we are sensitive or allergic to gluten. We may think that our diet is 100 % clean, and we'll find ourselves sitting there wondering: why isn't this helping me?

Please, don't give up, go to forums that can support you. You may find that you have to avoid not only gluten, you may have to avoid all wheat products there is, even if the gluten is processed out of the wheat.

Or you may find that you are neither allergic or sensitive to gluten / wheat or what else you would like to investigate, but never stop untill your sure that you've really got the grip of a totally gluten free diet.

We're all different, we react different to medications and we react different to try any new diet. But we need to be 100 % dedicated when we do try something new. If it's LDN or remicade or no gluten, - just take your time and keep the good work going.

And don't listen to those telling you that it's no idea. If I had listened to the two guys telling me that LDN was a scam I would never sit here being in remission since the first time I tried LDN. 5 years ago. I am also gluten free. And it helped me a lot. But I have no celiac. I am sensitive to gluten. // Good luck!

I agree with NCOT

BeeSting has promoted LDN, diet, and alternative treatment for years without incident. I find her posts to be a helpful contribution to the forum, and not just because I happen to agree with most of what she posts.  I don't see her being attacked for her views. 

Contrast this with InSoFla who who also advocates LDN and diet but regularly incites a grassroots rebellion. I agree with NCOT that one reason might be she disparages conventional treatment. I personally eschew conventional meds for myself but I can respect those with different views. And when she finds herself in trouble she does not respond directly but asks her followers of true believers to flood the forum with posts supporting her. Check out some of the egregious and inflammatory posts written when the admin tried to rein her in. Perhaps NCOT should also request forum participants to share their opinions so we can get a more balanced view of the situation.

NiceCupOfTea said...

Have you ever seen me do that? Do you even know that I'm on Remicade? In other words, do you know a single thing about my situation? I don't care if you do or not; my point is I do not push anything onto anybody. I make suggestions about different drugs or diets and I try to tailor my suggestions to the individual. I do not have a stock reply that I can bring out and copy and paste.

Each person is individual but we should have the opportunity to decide what is in our best interest without someone interfering with negative comments.

You, InSoFla, etc. are considerably more negative about conventional drugs and surgery than I am about alternative treatments, I'm afraid. Refering to surgery as 'barbaric' (I do not know if that was you; but certainly somebody on the UC board did) is about as negative and off-putting as it gets. Ridiculous, when surgery is literally and metaphorically a lifesaver for thousands of people. You should be grateful we live in an age of safe surgery.

Sorry, No. I AM the one who is more negative about conventional drugs and surgery, and the reason being is because its sickening to read all of the forum posts from newbies in that devastating state of active colitis or crohns, looking for anything to help them, when the bulk of replies are fixated on what only doctors know how to treat you with -standard medicine or drugs. But you know what? Doctors are not stupid, they are paid to push conventional medicine and go by what they read from the book. I've said it before, i'm thankful to have had medicine like prednisone available to me to achieve a state of well-being so that I could continue treatment through alternatives to pharmas, but thats where I feel its important to address what I have learned to help myself significantly.

You have to understand that all of us have a different story, and for me I was denied any right to know about natural or alternative treatments from the very beginning of my diagnosis. When you're in a panic mode situation, its likely you will do anything to help yourself, but had my doctor informed me about the possibility of going gluten free, trying different diets or probiotics, or supplements that may help, I would not have been on prednisone for as long as I was. I will forever feel its my duty and right to acknowledge the treatments that helped me in hopes that even 1 out of hundreds on this forum, may benefit. InSoFla has done no 'pushing' of the sort, and any of you finding her posts or anyone elses a minor annoyance should take your own advice and use the ignore button.

Gluten can take weeks to months to be out of the system, depending on how much you eat it, and yes there are hidden ingredients that are disguised as gluten, i'll have to find the list.

To BITW and NCOT- Why continue to attack InSoFla who wants to share about alternative methods they use to control disease? Do you work for a pharmaceutical company? I am appalled and shocked how you guys can argue against something you have never tried! There are those of us who are interested have a right to ask questions and learn from others who have tried non conventional methods successfully and not successfully! NCOT IS constantly on the attack against InSOFla and others who support alternative treatments.

There are MANY of us who simply would like to learn about LDN or supplements! Why is this such a problem?

BITW- "grassroots rebellion"?????? In case you havent noticed, she hasnt said a word, NOR has she told me to participate in a "rebellion"! 

 
Please stop attacking and allow us the same rights to learn about anything we deem relevant to our disease!

Post Edited (pmedic) : 5/24/2012 9:31:53 AM (GMT-6)

Facepalm.