The Healing Process

[Lisa]

Question for all the "old schoolers".........

I have been gluten-free for six weeks, as best as I am able. I still have many symptoms (i.e., D after lunch, fatigue, as my husband tells me, irratibility, some acid with D with mucus -- totally gross to talk about, but, guess we all have been there/done that. (BTW- hubby said I was grumpy BEFORE celiac. - go figure) ....next one will be a younger man with older money!!!

Generally, overall, I feel that this is a slow progression toward healing although the listed symptoms still continue, slowly better, but continuing.

My assumption is that until the small intest are healed the symptoms will continue with less and less with the gluten-free diet. Is this correct?

I can only assume, that new to the diet and experienced cook with spieces and marinades, I will have slip-ups.

I guess my true question is: If I remain on a TOTALLY gluten-free diet, I will experience symptoms of celiac disease until the small intest. heals -- decreasing graduately without gluten and the healing process will continue.

Thanks for your thoughts and feed-back

Lisa B.

[nettiebeads]

It does take a long time to heal. There are many variables as to length of time to heal. How much total damage was done to your villi? What is phsiological makeup? Do you normally heal slowly or fast? Remember, when you slip-up, you are redamaging your villi so it's a step backwards (or three). But 6 weeks into the gluten-free diet and you feel improvements so you are on the right track. Patience, dear, patience. If you read some other posts, many people didn't feel near normal until a year after going gluten-free. I still slip up occasionally and each reaction seems a little different. Sometimes just the D and not much else. Other times no D, but painful gas. Still other times very little physical symptoms, but the anger, depression and fatigue. It's a fun little disease (or disorder as some prefer to call it) isn't it?

[LLCoolJD]

I'm not what you'd call an "old schooler", but I have the understanding that, once on a totally gluten-free diet, after 2-3 weeks things pick up and Celiac symptoms fade away. It can take up to more than a year for villi in your intestine to recover, though. Side effects like a decreased tolerance for lactose can present themselves, due to the damaged villi. Take me, for example. No gluten in 5-6 weeks (I had a bad bout with it in August), and my Celiac symptoms are gone. I'm still not 100%. I seem to have poor tolerance for fat/grease and lactose. Hopefully that will fade in time as my body heals.

[SueC]

Hi Lisa,

I feel your frustration. I have been gluten-free for almost 6 months and am still not healed. I have good days and not so good days. I was so convinced something else was wrong that I saw LOTS of specialists and so far everything looks good... except my villi . My symptoms are all neurlogical and my neurologist is still saying give it time. Everyone is different but 6 weeks is not a long time. Be patient and stay gluten-free and don't worry if it takes a little time to feel better. It will happen

[Lisa]

Sue:

Thanks for your reply. I too have good days and bad ones.

What I don't understand is the difference between traveling through the healing process and eating something that day that may not be gluten-free.

I know that healing takes a while and the symptoms may continue until the healing progresses. I know that I have to do what I have to do in the car after the breakfast bathroom break. After that I am good to do errands. After lunch, even though a gluten-free lunch at home, will keep me in the house until about 4:00.

After 6 weeks, I don't know if I have gotten "hidden gluten" or the healing process is still in the works.

Today, after reading that they are gluten-free, I tried McD's fries and a side salad with Nuemans Ranch - gluten-free Ranch. Didn't do well by me.

I haven't been here long enough to know whether, I am still healing, or the salad is too much ruffage, fries too greasy........ I guess time will tell.

When most people are "glutened", I would like to know, how long do they know it...an hour, 12 hours, or 24 hours....... This I don't know yet.

I am certain that it varies from person to person - and sensitivity as well -- but curious?

Lisa B.

PS: I am learning.....today at the grocery store, I felt myself a little off ballance and I had a dry mouth, lathargic..... (B-12 shot had not kicked in on Friday maybe)

[chronic]

I have been bluten free for 2 1/2 years and just now have more good daays than real bad. I too discovered many allergies bia the SAGE test. Reaction to these allergies actually mock gluten reactions. Hang in there and you will learn more and more about yourself and the food you eat. Chronic

[KaitiUSA]

When most people are "glutened", I would like to know, how long do they know it...an hour, 12 hours, or 24 hours.......  This I don't know yet. 

I am certain that it varies from person to person - and sensitivity as well -- but curious?

I feel it pretty much right away. Some people have delayed reactions which can then make it tough to know what it was you ate that could have had gluten in it.

You are still fairly new to the diet and it does take time just to find all that hidden gluten and eliminate it. Any improvement by that short of time should be a very good sign. I had up and down days for quite a while.

If you go for a pretty long time and aren't feeling better then it could be maybe another culprit besides gluten.

[Lisa]

Thanks Kaitie for kicking in..... time will tell.

[hez]

I have been gluten-free for six months. I am just now starting to feel better. I have been glutened a few times which has sent my recovery back. It took me awhile to figure out lipstick, lotion (got glutened from) and shampoo. I still have more bad days than good.

The times I have been glutened I have felt it within a few hours. It seems to take me 3 weeks to recover. Not quick!

My gi also told me that bm may never be "normal" (once a day). The gi said it might be several times a day for me, but not the d.

Healing seems to be a very slow process. I am with you! I am ready to feel better all the time!

[laurelfla]

hi, guys!

i hope everyone gets all better soon! luckily i am having more good days than bad, but i do still have those times where i'm not sure if i ate something bad or am just in the healing process still, so this thread has helped me out!

one thing i am doing is keeping a food journal. i've tried off and on since diagnosis but today i'm starting it for real and keeping to it! i know i have some issues with lactose, but i'm not sure if there's something else going on. so i have these diet sheets my dietitian gave me, and they are actually available online, if anyone wants to check them out. there's a space where i write in how i feel, too, so hopefully after several days of this i can look back and find some sort of pattern.

hope it helps someone!

here's the link:

Open Original Shared Link

then you click on Food Journal.

Laurel.

[PreOptMegs]

Again, I will consider myself a broken record and I apologize to the people who have heard me say this over and over, but.... the specific carbohydrate diet EXPONENTIALLY reduced the time of recovery. I feel amazing and I have only been on the diet for 5 months.

[4getgluten]

I am certainly not an "old schooler". I've been gluten free for seven months now, and I didn't "turn the corner" until about a month ago - six months on the diet. Now I have many more good days than not so good days.

Keep reading the ingredients on everything. It took me a long time to figure out which lotions, shampoos, soaps... I could use. This site helped me a lot - Thanks to everyone sharing all this great info. I've probably done a search on this site for every product I use.

Normally when I feel I've been glutened (usually after eatting out), it takes me about 2 days to get over the upset stomach, and about a week to get over the fatigue. I've also found that a balanced diet helps. I try not to eat too much of any one thing. For example: I limit my diary to 2-3 servings a day, and if I have rice at lunch, then I'll have a potato with dinner.

Hang in there. Everyone's different, but it seems that it does take several months before most people start to feel really good.

[Lisa]

Thanks for all your response. I am not sure that it makes me feel any better. It is a little bit, ok, alot depressing.

I am fortunate not to have to work. I do the basics around the house...wash clothes, cook, clean and do some limited yard work and that is about it. I do a little bit at a time, sit down and then do some more. I know that my husband (retired and at home) really doesn't quite know what to do with me. He doesn't say anything. But I just feel like I am lazy.

I had the first B-12 shot a couple weeks ago and saw dramatic improvement in my energy level, next week not nearly that.

I have been eating well and cooking tastey meals gluten-free that we all eat. I am just plain tired of being tired and a little down about that. The diet is easy for me (and shampoos, soap, meds, blah, blah) it is the darn (not my choice of words )fatigue.

After reading all your posts, I guess time will do the healing and there isn't much more that I can do about it.

Thank you all for your imput...I'll keep plugging away.

[Lisa]

Hey you guys:

I need some help getting over the personal pitty- party I am having with my self.

I am going to the Dr. Friday and in great need for energy boosters. Any one have suggestions for that. I am still not taking in nuitrients the "normal" way.

What can I talk to my Dr. about that.

(Please read my previous posts on this forum and it will give you a little background)

Welcome imput. Thanks for your time.

Lisa B.

[LLCoolJD]

Feeling depressed isn't unusual when your body isn't absorbing nutrients as well as it should. You've just got to remind yourself that things will probably improve in time, as you adjust to the condition. You should probably get your doctor to refer you to a nutritionist.

Anemia is a fairly common effect of Celiac disease, if I'm not mistaken, and is a possible cause of, or contributor to, your fatigue. I'm not a nutritionist, however, and can't provide you with all that you need to know. Certainly, a daily multivitamin would be a good, relatively cheap start if you aren't already on one.

Good luck with your appointment, and hang in there.

[Merika]

I am going to the Dr. Friday and in great need for energy boosters.  Any one have suggestions for that.  I am still  not taking in nuitrients the "normal" way.

<{POST_SNAPBACK}>

Hi Lisa,

You are right - you are not taking in nutrients the normal way. And you won't until your gut has healed, which is typically 6-12 months. Personally, I think that if you are over 20 and had noticeable symptoms for more than a year, it is unrealistic to expect to just "bounce back" within a few weeks or months.

Being here on the boards is a great place to be because you will hear so many different stories on the road to wellness. There seem to be more than a few patterns people follow. In time, you will find yours.

My only advice to you is to take it one day at a time. Enjoy what you have, and expect it will only get better.

Merika

[judy05]

Hi Lisa,

You are right - you are not taking in nutrients the normal way. And you won't until your gut has healed, which is typically 6-12 months. Personally, I think that if you are over 20 and had noticeable symptoms for more than a year, it is unrealistic to expect to just "bounce back" within a few weeks or months.

Being here on the boards is a great place to be because you will hear so many different stories on the road to wellness. There seem to be more than a few patterns people follow. In time, you will find yours.

My only advice to you is to take it one day at a time. Enjoy what you have, and expect it will only get better.

Merika

<{POST_SNAPBACK}>

My answer to the fatigue is exercise. I know you feel tired but if you start out just 5 min a day on the treadmill or stationary bike it will increase your energy level. I am up to 40-60 min a day. Somedays I really have to force myself to do just 10 or 20. If I get past the first 10 min then I feel I can do more. It makes you feel like you are accomplishing something and you will feel a difference!

[elisabet]

hi, guys!

i hope everyone gets all better soon! luckily i am having more good days than bad, but i do still have those times where i'm not sure if i ate something bad or am just in the healing process still, so this thread has helped me out! 

one thing i am doing is keeping a food journal. i've tried off and on since diagnosis but today i'm starting it for real and keeping to it! i know i have some issues with lactose, but i'm not sure if there's something else going on. so i have these diet sheets my dietitian gave me, and they are actually available online, if anyone wants to check them out. there's a space where i write in how i feel, too, so hopefully after several days of this i can look back and find some sort of pattern.

hope it helps someone!

here's the link:

Open Original Shared Link

then you click on Food Journal.

Laurel.

<{POST_SNAPBACK}>

Thanks ,It is a helpful link,I am going to keep a food journal for my son,and the diet sheet is a wonderful ida.

[jenvan]

I have been gluten-free for 6-7 mos and have had some improvements--but little to none as far as my fatigue and muscle pain. I have connected to a nurse practioner who is working to set up a celiac center/clinic in Indy. She was diagnosed 10 years ago... She told me 2 years is really a reasonable time table for many--that around that point you begin to feel normal and 'forget' you have it... Hopefully that will be true for all of us one day!