Gluten Intolerance...

[Rachel--24]

Obviously a Celiac must stay gluten-free for life but I'm curious if its the same for intolerance. Does the immune system always react to gluten just as it does in celiac disease or does the problem correct itself after gluten is removed for some time? I'm not asking because I plan on testing my body in the future...I've been through enuff. I won't push it ....just want to understand everything thats going on in my body.

Also its only been 6 days since my last bad reaction started so if I can manage to not have anymore *accidents* is it still going to take some time to heal? I have bad fluid retention...I think from malabsorption. The fluid causes alot of pressure/headaches and its been there the whole 2 years I've been sick. Just wondering how fast I can start absorbing my food again and hopefully get rid of this fluid.

[Jnkmnky]

According to that book I suggested to you, Dangerous Grains, I believe there's a spectrum of gluten sensitivity that begins with sensitivity and developes into intolerance. So I would say your body is not into gluten and won't be changing that stance for the rest of your life.

[Rachel--24]

OK...thats pretty much what I thought. Somebody mentioned something to me today about it being only temporary and I could probably eat it again later. Like I said..this isn't something I'd really be into trying out but I just wanted to have all the facts.

I did order "Dangerous Grains" along with a couple others that were reccommended. They probably wont get here till next week & in the meantime I'm sure I'll have a thousand more questions

[Guest nini]

depending on just how damaged your immune system is, it may take you some time to heal... but I would hope that by 4-6 months gluten-free you would be feeling substantially better.

I'm two years gluten-free (but confirmed celiac) and I still have stuff going on, but I can def. see it getting better.

And I agree, gluten intolerance is also lifelong, it's not going to change... anyone that tells you it will is sadly mistaken. But hey, gluten-free aint so bad!

[nettiebeads]

Obviously a Celiac must stay gluten-free for life but I'm curious if its the same for intolerance. Does the immune system always react to gluten just as it does in celiac disease or does the problem correct itself after gluten is removed for some time? I'm not asking because I plan on testing my body in the future...I've been through enuff. I won't push it  ....just want to understand everything thats going on in my body.

Also its only been 6 days since my last bad reaction started so if I can manage to not have anymore *accidents* is it still going to take some time to heal? I have bad fluid retention...I think from malabsorption.  The fluid causes alot of pressure/headaches and its been there the whole 2 years I've been sick. Just wondering how fast I can start absorbing my food again and hopefully get rid of this fluid.

<{POST_SNAPBACK}>

oh yeah, it's for life. But then so are a lot of things, I think it could be worse. After you start feeling better it becomes more of an inconvenience than anything else on most days. Then there are days you feel so isolated so you come here to the board and vent. I had to go gluten-free 9 years ago and dealt with it on my own until just recently. This board has been a mental lifesaver. I have found that my body reacts a little differently to each accident since it depends on how long since the last accident and how much was accidentally ingested. You may have to take your diet way down to the basics because of damage. No milk products for awhile, easy to digest foods and such. Think baby - you are practically starting over, but it will get better.

[Rachel--24]

I think if I had gotten diagnosed right away or never had symptoms having to all of a sudden go gluten-free would have been devastating to me (especially considering my gluten-filled diet at the time). Since it didn't happen that way for me and I've suffered alot the past few years I'm pretty much embracing the gluten-free diet right now. I've kind of isolated myself from everyone the past few months so I could figure out what was making me sick. Everytime I tried to get together with people and do normal things I would get worse so I just avoided everyone. Of course doing normal things included eating out and going to clubs and drinking beer. I pretty much did go back to the basics for the past 3 months...only veggies, meat and fish. All I knew was that these foods didn't make me sick. I was getting gluten from other sources so I still have malabsorption. I guess I was figuring that since I've already been on such a restricted diet for 3 months maybe I could start eating all the good gluten-free stuff so thats what I've been doing the past few days. I get pretty bloated now and have stomach pain (not severe) also the fluid retention. Should I go back to only the bacic foods for awhile longer?

[skbird]

Hi Rachel -

My approach to reintroducing foods is to stay off for a few days, say a week, then start bringing small amounts back in. If problems persist, then back off of them I go. If I was still feeling bloated, I would just wait a little longer. Make a deadline for yourself, say, I will stick to my mimimal diet for, 2 weeks (or a month or whatever) and then just go for that. And at the end, start testing out foods again.

Know that most food problems won't be forever, but gluten is. Sometimes I get discouraged when I can't eat something (the last month chocolate has been bad for me) but I keep reminding myself not to get depressed, in a month or so, maybe I'll be able to add it back in. Sometimes, I can't add it back in. But after a month or so off something, I usually don't care anymore.

Corn is something I have been off for about a month now, after a bad reaction, and generally suspecting it as a problem for me anyway (I love it too much, like I need to eat it every day, etc, the more I eat, the more I want to eat it...) Anyway, last night, we had tacos, and while I usually just have a taco salad, I decided to eat the organic corn taco shells we had left (figured I'd just use them up instead of tossing them, and organic corn causes me fewer problems than regular corn) and while eating them I thought, hmmm, why would I ever crave this? It's so boring! So I think I'm ok with walking away from corn now.

A lot of food sensitivities are often temporary. But gluten is not a food sensitivity, it is an autoimmune reaction which is a whole other ball of wax. Once your body is trained to react that way to gluten, it will never forget. It's like when you get a flu shot - you get a weakened version of the flu virus injected and your body reacts by building an immune reaction to it. So then in the future, if you are exposed to the same virus, like someone else around you is sick with it, your body is already trained in what to do with that virus - it has the antibodies built up inside, ready to go. Gluten is the same as the virus in your body - your body sees it and says, oh, where are those antibodies - and the antibodies attack your body, instead of the gluten. It never forgets how to do this, even though it is an inappropriate reaction.

Anyway, hope that helps... it takes time to absorb all this info, and your food! Take it one day at a time and soon you won't even think about it as something special you have to do - it just *is* you.

Stephanie

[Rachel--24]

A lot of food sensitivities are often temporary. But gluten is not a food sensitivity, it is an autoimmune reaction which is a whole other ball of wax. Once your body is trained to react that way to gluten, it will never forget. It's like when you get a flu shot - you get a weakened version of the flu virus injected and your body reacts by building an immune reaction to it. So then in the future, if you are exposed to the same virus, like someone else around you is sick with it, your body is already trained in what to do with that virus - it has the antibodies built up inside, ready to go. Gluten is the same as the virus in your body - your body sees it and says, oh, where are those antibodies - and the antibodies attack your body, instead of the gluten. It never forgets how to do this, even though it is an inappropriate reaction.

<{POST_SNAPBACK}>

Stepanie...that was quite a good explanation

Maybe I should print it and show it to anyone who thinks I can eat gluten again.

Luckily so far I dont seem to be reacting badly to any one food I'm eating. I'm just wondering if eating too many different things or processed foods can slow down healing.

Yeah...corn CAN be a little boring...I was thinking the same thing yesterday eating corn tortillas. They don't taste anything like flour tortillas thats for sure. How would a burrito taste with a corn tortilla???

[skbird]

It's funny about corn - when I eat it, I think, boring! But the more I eat it, I crave it, I dream about it, I create entire meals with it (polenta with corn nibs thrown in is delicious!!!) and I just get out of control. It's weird. That's a red flag for me.

I'm glad that description works for you. I think I read that somewhere else so I can't take credit for it but it really makes sense of things, doesn't it? Other food intolerances that aren't autoimmune don't create the same reaction, so therefore can be added in at some point, successfully or not. But forget about gluten!

Stephanie

[Jnkmnky]

Rachel, someone here posted that if you put a bit of butter on each side of a corn tortilla and warm it up on each side, it will have a better consistency and ....it's true. Totally changes the corn tortilla.

[skbird]

Also, Food For Life has brown rice tortillas. I haven't seen or tried them yet and have read mixed reviews, but if you can find them, that's another option. I've been on the lookout because I am avoiding corn...

Stephanie

[Rachel--24]

Thnx Stephanie & Jnkmnky,

The more options...the better. I like to have lots of choices...especially after eating pretty much the same thing EVERY day for 3 1/2 months. I'm in heaven right now....how many people say THAT when they first go gluten-free??

[tarnalberry]

The Food for Life rice tortillas are interesting - unless you do something to keep them moist while heating in the microwave, they'll actually be a little bit crispy, but I kinda like that too. It's not the same as a flour tortilla, but I like the taste.

[Nevadan]

After a lot of research re gluten sensitivity/intollerance vs celiac, I'm convinced that sens/intoll is also a genetic disease - and genes don't change. So it's pretty much for life unless someone finds something we can take that helps with digesting gluten - Stanford U is working on this now.

I find that I feel so much better w/o gluten that being gluten-free is not much of an issue. I just hate the accidents, but I'm still learning.

Hang in there.

George

[Rachel--24]

After a lot of research re gluten sensitivity/intollerance vs celiac, I'm convinced that sens/intoll is also a genetic disease - and genes don't change.  So it's pretty much for life unless someone finds something we can take that helps with digesting gluten - Stanford U is working on this now.

<{POST_SNAPBACK}>

Well George, I tried to find out info on sensitivity/intolerance vs. Celiac but didn't really get any answers. All I know is that right now this is feeling like a disease to me

I've been eating lots of foods the past few days. I feel good because I'm not getting those gluten reactions but my fluid retention is getting so much worse. It seems like my legs and stomach have gotten so much bigger...well they have because I've gained 9 lbs. in 4 days

Is this because of the malabsorption? I'm worried cuz I don't see anyone else having problems with fluid retention. Is this normal?

[Rachel--24]

You may have to take your diet way down to the basics because of damage.  No milk products for awhile, easy to digest foods and such.  Think baby - you are practically starting over, but it will get better.

<{POST_SNAPBACK}>

Maybe I need to be taking this advice. Does anyone know anything about why I have fluid retention? My legs and feet are really hurting right now

[nettiebeads]

Maybe I need to be taking this advice. Does anyone know anything about why I have fluid retention? My legs and feet are really hurting right now 

<{POST_SNAPBACK}>

Take a midol. Seriously, it has something to stop the fluid retention. Do you have a dr you can talk to about this? I don't know all of your diet. Salt is a biggie - processed foods ALWAYS have sodium. Just a little sodium and I'm three pounds heavier.

[skbird]

Carbohydrates can cause fluid retention, too, and bloating. For example, when I don't eat starch on the plane, I don't swell up in my legs, but I do otherwise.

Can you eat eggs? Try going on an egg, cooked veggies and cooked fruit diet for a few days, say away from grains of any kind, and see if that helps. Also, chicken and fish should be ok. Whenever things start going crazy in me I go back to basics of eggs, lean meats (no four-footed animals) and cooked veggies and fruits. It seems to help reset things, and is easier on your body. I can't go without protien so definitely need that part.

I'm sorry you are having such a rough time! It will get better. You are doing so much to learn, that is really important. Keep at it, you are doing a great job, even if it gets really frustrating.

Stephanie

[kallie]

Hi Rachel,

I just went gluten-free a few days ago (still waiting for the results from enterolab). I have a terrible time with water retention when I ingest any gluten or dairy and some other things which I have yet to figure out. I've been reading up on it and apparently any type of immune reaction can cause fluid retention. Basically the body is trying to "wash out" the invaders by filling up our cells with fluids. For me it's mostly in my face but it used to be more in my hands and feet. Some things that have helped me are taurine (an amino acid that is supposed to balance fluids), pineapple juice, and 100% cranberry juice, both of which are supposed to reduce inflamation and fluid retention. Fluid retention is a symptom of many autoimmune diseases including lupus, arthritis, diabetes, etc. I think whenever there is any type of inflammation, fluid retention can result. So you are not alone!

-K

[kallie]

also, I have read that if you don't drink enough water your body will cling onto what's there, causing more, not less fluid retention. So drink lots of water! Also I think midol is not the best thing, I was reading it's too harsh of a diuretic and will flush all of the minerals out of your body along with the fluids. We sure don't need that!

[nettiebeads]

also, I have read that if you don't drink enough water your body will cling onto what's there, causing more, not less fluid retention. So drink lots of water! Also I think midol is not the best thing, I was reading it's too harsh of a diuretic and will flush all of the minerals out of your body along with the fluids. We sure don't need that!

<{POST_SNAPBACK}>

I know midol can be a little extreme, but if one is seriously uncomfortable to the point of not being able to sleep and in pain, you gotta do something now. But everyone is right on the carbs, juices, and good old water. I found that drinking ice water through a straw is easier - I get more down that way.

[Rachel--24]

I'm sorry you are having such a rough time! It will get better. You are doing so much to learn, that is really important. Keep at it, you are doing a great job, even if it gets really frustrating.

<{POST_SNAPBACK}>

Thanks for the words of encouragement Stephanie

Kallie! Hi...I was wondering where you went. When did you send your test ? Mine came back sooner then I expected...less than 2 weeks actually. I gave up on taking meds of any kind a long time ago...I never liked taking pills to begin with. The fluid retention has been there since I first got sick so I do believe it is an autoimmune thing. Its there no matter what I eat or even if I eat nothing at all...it leaks into my tissues. Its mostly in my face...or at least thats where I really feel it. Yesterday it was bothering my legs but I feel better today. Hoping the gluten-free diet will resolve this problem. I also tried cranberry juice and diuretics in the past...nothing worked. I looked it up and fluid retention is a symptom of malabsorption so maybe thats why...I guess I just gotta wait it out. I brought my Enterolab results to my doctor today. Everyone was sooo nice to me...it was the first time in 3 years they weren't treating me like some hypochondriach. They were also VERY apologetic for all I've gone through. They accept my results as a diagnosis and are going to send me to someone knowledgeable about gluten intolerance/celiac disease. My doctor said I'm his once in a lifetime patient and he doesnt want to mess things up??? HELLO...I went for almost 3 years undiagnosed...I'd say he already messed up. Also I'm not in THAT small of a town...yet they are treating me like the first person ever to have this??? Oh well....at least they're trying...thats a first They also sent me to a dietician but she said they are a little behind in the times cuz they don't have the info that they should but she was nice anyway. I'm already way ahead of her.

[kallie]

Hi Rachel!

I'm so glad that your doctor is finally starting to be understanding! And hopefully they will send you to someone who is knowledgeable about gluten intolerance. I now exactly how you feel. My fluid retention and bloating and GI symptoms have been going on since I was 17 and now I'm 29! To be honest I just accepted that that's the way I was until the past few years when I was exhasuted all the time and my hair was falling out in gobs. I still have doctors that don't believe that my hair is falling out! I even had my mother verify that I had twice as much hair when I was a teenager. I think if they don't have a quick fix, then they just tend to downplay your symptoms to make themselves feel better. So I'm really thankful for enterolab. I'm hoping the same thing will happen to me when I bring my test results in. I was on vacation for awhile so I sent in my test on monday. So I've been gluten-free since sunday. I already feel SO much better. My fluid retention is starting to go away and my stuffy nose is much better. I really hope that my hair stops falling out soon. I've lost like half of it since this all started. It's so good to know that there is someone out there with the same symptoms as me! Keep me updated!

Kallie

[thomas3000]

Dear Kallie and others,

I would encourage all of you that are gluten free to get tested for infections. Parasites cause hair loss and if you have any lingering symptoms you need to be tested. If you're gluten intolerance you will have infection(s) I don't know what the posting rules are, but I have been working with a great lab who checks for these infections. I found 1 infection(h.pylori) already. If you're gluten intolerant, it's quite possible you're reacting to even a little gluten because of these infections. I've talked to people who cleared these infections and eat gluten again(minimally). If you do react take alka-seltzer gold(two tabs), symptoms will go away promptly. If I could post the name of the Lab I will do so..Let me know if I can.. Thanx. Thomas

[Rachel--24]

Thomas,

I had all of these tests done. My HMO tested for parasites more than once. I also paid for tests at Great Smokies (I don't know if a better lab exsists for this kind of testing). Anyways, every test came back negative for candida, parasites etc. Even though I have bad malabsorption from the gluten intolerance I apparantly have no bacterial overgrowth of any kind. Phew!!!