Healing Time After Glutening

[Corkdarrr]

So I was reading somewhere on here the other day that it can take something like 3-6 weeks after a glutening for your body to heal. (Please correct me if I'm wrong because I really can't remember. gfp, I have a feeling it was in one of your posts, too...) This includes even just a small amount ingested from CC.

I have been gluten-free for about 2 1/2 months now and I read all sorts of stories about people who don't feel any noticable effects of being gluten-free until 1+ years. I know aside from the first week and a few days here and there, I still feel pretty much like crap.

And I also know I keep making all sorts of weird little newbie mistakes, most of which I'm probably not even aware of.

Could it be that although I've been practicing gluten-free eating for 2 1/2 months now, my body has never truly been gluten-free due to my mistakes and the lag time of a glutening?

I mean, maybe it takes us SO long to feel better because of the combination of us having to figure out all the places gluten hides, and our body having to recover from each of those instances.

Does that make any sense? I haven't been sleeping much this week and that was something I thought of as I laid staring at the clock last nite. Just a thought.

-Courtney

[rinne]

Hi, I am still trying to figure things out too and have only been gluten free for five months.

I know in the first couple of months I was accidentally glutened a couple of times and that took time for me to recover from. It took me a month to figure out dairy wasn't agreeing with me either and I cut it out too and then I realized that vitamin supplements were hard on me also and stopped taking them but looking back now I realize that there probably was some cross contamination going on too.

All my way of saying, I think your theory has merit.

[spunky]

My thinking is going along those same lines right now. I really wonder if that's why it's so hard, because if it takes this long for any gluten to get out of your body, then even if you visibly stop intending to ingest gluten, besides the long wait for it to get out of your body, the unintended glutenings here and there, and the healing process, which takes time, well, it's no wonder it's such an ordeal getting to the point where you see improvement!

Keep going! I'm just having some real good stuff happen now in the final weeks of my 8th month! I'm not really normal yet, I don't think, too gurgly and gassy, but the biggest problems seem to be just about gone, or at least tolerable at this point.

I feel better now than I have in years, but it sure has seemed like a long wait for this much improvement. And I have been really careful!

[marciab]

It apparently makes a HUGE difference for me. I got some gluten the day before yesterday and I have one small, but ominous blistery looking bump on my abdomen, a couple of itchy bumps on my scalp and last nite I was jerking and had horrible insomnia. I was doing great up until then.

I noticed back in September 2005, when I first went gluten free, that I no longer felt hyper after getting all of the gluten out of my diet. ACTUALLY, I felt healthy ... BUT, made the mistake of adding a meal replacement with oat bran into my diet for calories.

Apparently, I can not handle even the smallest amount of gluten.

This is going to be a real pain since I have company coming in on Wednesday. She is going to feel like she is living in a gluten free prison. I am going to be sooooo cautious.

Just wanted to add real quickly, that these were Guitless Gourmet baked blue corn tortilla chips and I have a problem with corn too. I ws just testing my limits.

Marcia

[Guest Kathy Ann]

You know, I'm a newbie and in spite of all my nutritional training I find this whole thing to be quite complicated. I have been gluten free (as far as I know) for 6 months. I don't feel well yet. But like some of you, I'm not sure that I haven't missed some gluten somewhere or am getting contaminated by my family's eating habits or even that I may have one more food allergy that I haven't discovered yet which is making me still feel bad.

I think it is a real failing of the medical community that many people in our situation don't have anyone trained to really guide them through this. Finding my answers on a message board is comforting and fun, but if this is turning out to be the epidemic that I think it is, there needs to be more "trained celiac guides" to help all of us through this dark maze more efficiently. Nobody should have to wonder after 6 months if they are on the right track. Most days I feel like Don Quixoti, flailing away at an invisible enemy.

[jerseyangel]

I think it is a real failing of the medical community that many people in our situation don't have anyone trained to really guide them through this. Finding my answers on a message board is comforting and fun, but if this is turning out to be the epidemic that I think it is, there needs to be more "trained celiac guides" to help all of us through this dark maze more efficiently. Nobody should have to wonder after 6 months if they are on the right track. Most days I feel like Don Quixoti, flailing away at an invisible enemy.

I so agree with this!

[Corkdarrr]

You know, I'm a newbie and in spite of all my nutritional training I find this whole thing to be quite complicated. I have been gluten free (as far as I know) for 6 months. I don't feel well yet. I still have a weird diarrhea and general malaise. But like all of you, I'm not sure that I haven't missed some gluten somewhere or am getting contaminated by my family's eating habits or even that I may have one more food allergy that I haven't discovered yet which is making me still feel bad.

I think it is a real failing of the medical community that many people in our situation don't have anyone trained to really guide them through this. Finding my answers on a message board is comforting and fun, but if this is turning out to be the epidemic that I think it is, there needs to be more "trained celiac guides" to help all of us through this dark maze more efficiently. Nobody should have to wonder after 6 months if they are on the right track. Most days I feel like Don Quixoti, flailing away at an invisible enemy.

Kathy Ann, I could not have said this any better. It's very difficult to stick to something when you see minimal improvements.

If you were on a weight loss diet, would you stick with it even though you'd only lost two pounds after six months? No! That'd be silly.

I've seen my reactions to accidental glutenings, and that's the proof to me. But I'm at a loss as to what steps I need to take next. It's very difficult to be proactive in your health when there are minimal guidelines and huge lag times in the symptoms.

-Courtney

[marciab]

We are the lucky ones. I have a relative that is still clueless and having "D" everyday. Her GI has her taking imodium like it was normal.

BTW, if you have not gotten the other common allergens out of your diet, now is a good time.

This diet is easy if you stick to whole foods. Fruits and veggies do not have labels.

[spunky]

I'm wondering if people do need a LOT more guidance on this. As I said before (I think I said it, anyway), I tried this once during the year 2001 and finally gave up, seeing no improvement.

Discovering this message board was what gave the the information I needed to stick with it longer, and to know better how to avoid gluten while I'm de-glutening.

It's such a tricky ordeal. I'm also wondering if during the roller coaster experience I've gotten on getting better, I either may have gotten in some accidental gluten, or reacted badly to other things, or else that was just the natural course of improvement. I see here so many people seem to react to other things, and I wonder if it's sometimes only temporary during the healing phase, or if it really was accidental gluten they weren't aware of and thought it was something else, or if their gut is just so reactive that there's a whole bunch of stuff they just can't eat anymore.

The medical world seems totally out of touch. People need better answers. It's wonderful that this board exists so that people can piece together their own puzzles, but it would seem to me there should be health care professionals who could make understanding this process a whole lot easier for people.

[Nancym]

I think relying on substitutes and convience foods just makes it that much harder. When I get back to eating foods without ingredient lists as long as my arm, I get much healthier. Seriously, I try make as much as I can from scratch. The other thing that helps is having a journal to find other sensitivities.

I had terrible diarrhea from eating raw sunflower seeds. It took me a long time to figure that one out.

[Guest Kathy Ann]

[eKatherine]

I think it is a real failing of the medical community that many people in our situation don't have anyone trained to really guide them through this. Finding my answers on a message board is comforting and fun, but if this is turning out to be the epidemic that I think it is, there needs to be more "trained celiac guides" to help all of us through this dark maze more efficiently. Nobody should have to wonder after 6 months if they are on the right track. Most days I feel like Don Quixoti, flailing away at an invisible enemy.

Wouldn't that be cool if it happened in our lifetime?

But seriously, as long as doctors continue to think that celiac is an incredibly rare disease that nobody really gets, and even if they did, the diet is horrendously expensive and optional anyway, well, why would any of that happen?

[TriticusToxicum]

I think relying on substitutes and convience foods just makes it that much harder. When I get back to eating foods without ingredient lists as long as my arm, I get much healthier. Seriously, I try make as much as I can from scratch.

I'll second that!

[Guest Kathy Ann]

I agree too. Although I'm new, from what I've seen so far the celiac community is having just as much trouble making wise food choices, from the purely nutritional standpoint, as the rest of the population. Maybe even more. Being diagnosed as a celiac or gluten intolerant person, especially if you have some other major allergies thrown in as well, really cuts down your food possibilities. It's easy to get bored and sad and just eat a bunch of commercial comfort food every day. But you have the same choice as everyone else whether to eat a lot of packaged, chemical laden, heavily sugared, convenient stuff or include more good meats and fresh vine ripened fruits & vegetables that you creatively prepare yourself.

[oceangirl]

I agree too. Although I'm new, from what I've seen so far the celiac community is having just as much trouble making wise food choices, from the purely nutritional standpoint, as the rest of the population. Maybe even more. Being diagnosed as a celiac or gluten intolerant person, especially if you have some other major allergies thrown in as well, really cuts down your food possibilities. It's easy to get bored and sad and just eat a bunch of commercial comfort food every day. But you have the same choice as everyone else whether to eat a lot of packaged, chemical laden, heavily sugared, convenient stuff or include more good meats and fresh vine ripened fruits & vegetables that you creatively prepare yourself. "Fat celiacs" may seem like a misnomer, but I am one! The last thing I honestly need at this point is a ton of starch or even alternative grains in any great number.

Kathy Ann

I know I could sure use a trained "celiac guide"! It absolutely feels that we're on our own in the conventional medical community. I'm not even sure if I can get my regular doc to run the celiac panel again when I see her in a couple of weeks, because she'll probably think without a conclusive biopsy, that I have no problem with gluten. But here at 6 months, I'm still reacting with regularity (seems like to anything and everything, and I make %99 of my own food from scratch) and I want to see if my tTg is still up. We'll see..

I had the same question about other intolerances- do they eventually get better? Sure seems like things that never bothered me do now. And, while I'd love to, I have yet to try any gluten replacements-flours, breads, cookies... because I'm too nervous about trying new things. I eat pretty close to a Paleo diet except for rice milk and rice krispies. Yesterday I don't know if I may have been glutened by my dental hygienist (the polisher paste?) It is a formidable foe, gluten...

good luck to you,

lisa

[eKatherine]

Kathy Ann

I know I could sure use a trained "celiac guide"! It absolutely feels that we're on our own in the conventional medical community. I'm not even sure if I can get my regular doc to run the celiac panel again when I see her in a couple of weeks, because she'll probably think without a conclusive biopsy, that I have no problem with gluten. But here at 6 months, I'm still reacting with regularity (seems like to anything and everything, and I make %99 of my own food from scratch) and I want to see if my tTg is still up. We'll see..

I had the same question about other intolerances- do they eventually get better? Sure seems like things that never bothered me do now. And, while I'd love to, I have yet to try any gluten replacements-flours, breads, cookies... because I'm too nervous about trying new things. I eat pretty close to a Paleo diet except for rice milk and rice krispies. Yesterday I don't know if I may have been glutened by my dental hygienist (the polisher paste?) It is a formidable foe, gluten...

good luck to you,

lisa

You eat Rice Krispies? They have gluten in them. Erewhon makes a crisp brown rice cereal that should be safe.

[oceangirl]

You eat Rice Krispies? They have gluten in them. Erewhon makes a crisp brown rice cereal that should be safe.

No, Katherine, I eat the Erewhon ones. Sorry, that's what I meant, but thank you!

lisa

[kosherkid]

Kathy Ann

I know I could sure use a trained "celiac guide"! It absolutely feels that we're on our own in the conventional medical community. I'm not even sure if I can get my regular doc to run the celiac panel again when I see her in a couple of weeks, because she'll probably think without a conclusive biopsy, that I have no problem with gluten. But here at 6 months, I'm still reacting with regularity (seems like to anything and everything, and I make %99 of my own food from scratch) and I want to see if my tTg is still up. We'll see..

I had the same question about other intolerances- do they eventually get better? Sure seems like things that never bothered me do now. And, while I'd love to, I have yet to try any gluten replacements-flours, breads, cookies... because I'm too nervous about trying new things. I eat pretty close to a Paleo diet except for rice milk and rice krispies. Yesterday I don't know if I may have been glutened by my dental hygienist (the polisher paste?) It is a formidable foe, gluten...

good luck to you,

lisa

I also am extremely frustrated by the seeming lack of any progress. I started my gluten-free diet this past February and am very good at not eating things that are a problem. Just to be sure I also now either just eat fresh foods or foods I make myself, and I still don't seem to improving much. I just had a second biopsy, and it is a little better than the first one 6.5 months ago, which was something at least.

I feel like I can't eat anything, and I am already fairly thin, and don't really have any weight to loose.

David

[Stacie H.]

I’m glad I found this thread…I was about to start a similar one!

My husband is the one who we suspect is gluten intolerant. We have been gluten-free for 4 months now, and while there has been improvement, it’s very slow. He has not been tested, and probably will not because he does not want to go back to eating gluten.

Before gluten-free he had constant gastrointestinal issues, including severe cramping and diarrhea. There were many time in which he’d leave for work, get to the end of our street and have to turn around and make a mad dash back to the house. Also, severe, severe headaches. He described it as a burning ring around the top of his head. He also complained of feeling bloated after every single meal, no matter how little he ate.

Now, 4 months later, his headaches are all but gone. Some days he’ll have a very slight headache, but they go away more quickly now. The diarrhea is gone, though he still has cramps almost every day. However, he says the cramping is less severe and goes away very quickly.

Last night was the first time he complained of feeling bloated. I asked him if he was still feeling bloated after every meal, and he said, “No, just once in awhile.”

The one thing with him is that his weight has stayed the same. He hasn’t lost or gained weight since his initial weight loss when he was first diagnosed with thyroid cancer 2 years ago (exactly the same time that the gluten intolerance kicked in).

We are totally gluten-free at the house now, except that I'll treat myself to cheese and crackers on occasion. But I'm careful and we haven't had any glutening episodes in several months!!

I’m hoping that this is a sign of things to come, and I try not to get too impatient…we are taking baby steps. Last week was the first time he had restaurant food in over 2 years! We didn’t eat at the restaurant, but I picked up some Pei Wei on the way home, and ordered his meal off of the gluten-free menu. It was a good experience in that he didn’t have a reaction, but he wasn’t too thrilled about the meal itself. Our anniversary is in late October, and my favorite restaurant is Carrabbas. They seem to have a gluten-free menu with more variety, so I’d like to see if we can go out to eat.

[sparky]

Hi Y

Kathy Ann, I could not have said this any better. It's very difficult to stick to something when you see minimal improvements.

If you were on a weight loss diet, would you stick with it even though you'd only lost two pounds after six months? No! That'd be silly.

I've seen my reactions to accidental glutenings, and that's the proof to me. But I'm at a loss as to what steps I need to take next. It's very difficult to be proactive in your health when there are minimal guidelines and huge lag times in the symptoms.

-Courtney

RECOVERY TIME: I just wanted to help everybody out here. I've been gluten free for 9 months. It took me about 6 months to get more significant/more noticeable results. Still, I have to watch my diet. I can't eat fatty food. Everybody, please go check out MayoClinic.com and search for celiac disease. I also work at Mayo Clinic Hospital for a little while. My understanding is that the villi can take anywhere from 6 months-2 yrs to heal or grow. Then 2yrs to 5yrs for close to 100% recovery. The reason for the such the large range of time have to due with age/severity. These villi, in the small intestine, are responsible from absortion and production of enyzmes to break fats/proteins in food. So, as you can see, they are very important. People experiencing Dermatitis Hepataformis (DH), can expect to wait up to 2 yrs to clear up. Me, I've had skin problems, diahrrea, lupus like symptoms, and etc. I've also lived 15 yrs. not knowing what the heck what going on. I'm 30 yrs old now. From age 26-29 my symptoms got really bad. All the CELIACS out there who are just diagnosed. HAVE HOPE. It will get better. There is a 95% chance you will recover in time. I think the other 5% who don't are either still eating gluten or the villi are dead. These are good odds. If you are younger (new born-50). Odds of recovery are almost 100% One final note for complications of recovery. Ya, you probably heard that we celiacs become lactose intolerant. This is due to the tips of the villi, where lactate (enzyme that breaks down lactose in dairy) is produced, being damaged. My final piece of advise for those who aren't recovering. Make sure you are not cross reacting with SOY or MILK. Guess what? These two have very similar protein structures that may make the immune system react and destroy your villi. That's right, gluten isn't the only substance that can trigger a villi attack.

[plantime]

Courtney, your theory is right on the money. Every little glutening starts the damage cycle over again, so the time to full recovery starts over again. The longer you are able to go between accidental glutenings, the more healing you will do, so even the accidental damage won't be as much of a setback. It's kind of like taking three steps forward, and two steps backward each time. How long to full recovery also depends on your age and how much villi atrophy you had to begin with, so it is different for each person. If you think you are still getting gluten somewhere, post what you are suspicious of, and we will help you as best we can.

[Corkdarrr]

Courtney, your theory is right on the money. Every little glutening starts the damage cycle over again, so the time to full recovery starts over again. The longer you are able to go between accidental glutenings, the more healing you will do, so even the accidental damage won't be as much of a setback. It's kind of like taking three steps forward, and two steps backward each time. How long to full recovery also depends on your age and how much villi atrophy you had to begin with, so it is different for each person. If you think you are still getting gluten somewhere, post what you are suspicious of, and we will help you as best we can.

I have a sneaking suspicion that it is another food intolerance. And I'm not very happy about it. As the most common would be dairy. And I am desperately in love with dairy. I will be getting my Enterolab results in the next few weeks, and they did the dairy test for free. I didn't test for soy or yeast because I felt like it was too much money. Now I wish I had, just to be sure.

I have no idea what's going on with my body - ever since my idiotic glutening by Doritos two weeks ago, I've still felt like crap. This is the longest it's ever taken - usually after three days of an "oopsie" I feel fairly back to normal.

I'm bloated and full almost all the time. VERY thirsty for the most part. For the first week though I couldn't eat anything without feeling like I was going to puke or get the belly-rumblings of D. (Never did get the D, though. Just really, really thought I was going to. I did vomit quite a few times.) And I am beyond exhausted. My eyes get that burning-like-tired feeling starting earlier every day. But I am having the worst time sleeping. Even when I take Ambien.

My only solace is that I should be starting a 3 week cleansing diet sometime in the next month. I have regular email contact with the most amazing holistic doctor from where I grew up, and she's been doing her best to guide me without actually seeing me. She sounds very hopeful about the cleansing diet and giving my intestines time to heal.

Anyways. I seem to have hijacked my own thread!

Thanks!

-Courtney

[Nancym]

The fact is we have antibodies for gluten in our intestines for years after going gluten-free. That's why Dr. Fine's testing doesn't require you to eat gluten. It does decrease though over time.

Here's an abstract that you might find interesting: Open Original Shared Link

[Guest adamssa]

Hi Courtney,

I do definitely agree that the lag time from gluten can be a killer. BUT, I think there are lots of other things you should check out that you may need to do to help you heal that go beyond avoiding gluten. (Because our bodies are so damaged from it). I think learning about accupuncture and alternative therapies is a major one. I also would really recommend checking out books on herbs and supplements, and reading about vitamin and mineral deficiencies. Celiac disease often causes them, and they can really aggravate all your other symptoms. and there are herbs and enzymes to help digestion, do some research and maybe you can find one right for you. Additonally, make sure you don't have a candida problem to kill off. I think that making sure you address all the problems years of eating gluten have caused will definitely shorten the healing time from accidental glutenings. I think saying that a single glutening will screw you up for months is a little over the top. This summer, I thought I was glutening myself over and over, I kept getting brain fogged. Well, it turns out I had a major vitamin B deficiency. So I may have been glutening myself accidently a few times, but a lot of it had to do with the vitamins. I really believe that while improvement does take time, we need to be proactive, rather then just tell ourselves we need to endure and give it more time. Especially since we (you and I) are prettty young. Your signature says you are 24, and I am 20. I know it's hard to keep evaluating and reevaluating, but I also don't think we should be to quick to resign ourselves.

Best of luck,

Sara

[suzannabanana]

Can you post a little more information on candida?