What To Expect With Healing?

[Kimmy1119]

I was diagnosed with Celiac this week. I have begun the gluten free diet. I am seeing on some posts that healing can be painful. Is this normal with Celiac Disease or is everyone affected differently when following gluten free regiments? Just wanting to know what to expect over the next few months.

Thank you!

[ravenwoodglass]

Everyone is different. We do often have some ups and downs for a bit. If you eat as much whole unprocessed food as you can it can help with keeping down CC risk. Do delete dairy at first and then add it back in after you have been feeling good for a while. Be careful about cross contamination, if you have to eat at a restaurant eat at one with a gluten free menu. Get a new dedicated toaster, get your own condiments, butter, nut butters etc and change out any scratched nonstick pans, wooden utensils and cutting boards as well as your strainer.

Sometimes we will go through withdrawl so if your a little moodier than usual at first know that it will pass.

Hopefully you will heal quickly but if you do have some occasional issues know that is normal. Oh and do make sure to check any meds you take and supplements with the maker to be sure they are safe.

[T.H.]

I believe some folks can go into gluten withdrawal, but aside from that, I haven't heard that it's painful, usually. However, you may be very hungry no matter how much you eat, for a few weeks - I had that. It sucks, definitely. But it goes away, and not everyone gets that.

You will likely be tired for a few weeks. Your body is recovering and trying to heal damage that has likely been developing for years, so it needs rest and fluids and some time, just like recovering from an illness, you know?

There will likely be some emotional issues, but not from healing, just from what is lost now. A lot of us get a little sad when we realize how much of our lives involved food that we can no longer participate in the same way. can't go to many restaurants, have to bring our own food, so potlucks are a completely different experience, as are parties and family get-togethers.

But that passes, too. And it's just different, and we feel better, so not all bad, really.

And then there's the good stuff. Not everyone has this, but for me, this is what WENT AWAY when I went gluten free (and dropped a couple allergens at the same time):

headaches

carpal tunnel

plantar fasciitis

joint and muscle aches

periodic unexplained fevers

brain fog and memory issues

temper control problems

anxiety control problems

insomnia

balance issues

vertigo issues

ear aches

weight (I couldn't lose weight for a long time before going gluten free)

depression

Let me just say - the MENTAL changes were the most amazing. It was like this dark curtain had been over me for years and I never noticed, and all of a sudden it's gone. I can think clearly, I can feel things more deeply, and cope better, and...I feel like somebody gave me back the person I always wished I'd turned out to be, in a way.

Now, I'm more sensitive to gluten than many, and I also seem to be oat sensitive, so many of the gluten free foods are no good for me. Before we figured this out, I was living on less than 10 foods, for months. And I was STILL happier and less stressed than when I was living normally but still eating gluten.

That, better than anything else, made me realize just how much of an effect it had on me. I hope that you can realize the same rediscovery of joy and awesome as you go gluten free, too. :-D

[joej1]

T.H. thats really inspiring. How sick were you before you cut out gluten and how long did it take you for your symptoms to resolve?

-Joe

[Kimmy1119]

I believe some folks can go into gluten withdrawal, but aside from that, I haven't heard that it's painful, usually. However, you may be very hungry no matter how much you eat, for a few weeks - I had that. It sucks, definitely. But it goes away, and not everyone gets that.

You will likely be tired for a few weeks. Your body is recovering and trying to heal damage that has likely been developing for years, so it needs rest and fluids and some time, just like recovering from an illness, you know?

There will likely be some emotional issues, but not from healing, just from what is lost now. A lot of us get a little sad when we realize how much of our lives involved food that we can no longer participate in the same way. can't go to many restaurants, have to bring our own food, so potlucks are a completely different experience, as are parties and family get-togethers.

But that passes, too. And it's just different, and we feel better, so not all bad, really.

And then there's the good stuff. Not everyone has this, but for me, this is what WENT AWAY when I went gluten free (and dropped a couple allergens at the same time):

headaches

carpal tunnel

plantar fasciitis

joint and muscle aches

periodic unexplained fevers

brain fog and memory issues

temper control problems

anxiety control problems

insomnia

balance issues

vertigo issues

ear aches

weight (I couldn't lose weight for a long time before going gluten free)

depression

Let me just say - the MENTAL changes were the most amazing. It was like this dark curtain had been over me for years and I never noticed, and all of a sudden it's gone. I can think clearly, I can feel things more deeply, and cope better, and...I feel like somebody gave me back the person I always wished I'd turned out to be, in a way.

Now, I'm more sensitive to gluten than many, and I also seem to be oat sensitive, so many of the gluten free foods are no good for me. Before we figured this out, I was living on less than 10 foods, for months. And I was STILL happier and less stressed than when I was living normally but still eating gluten.

That, better than anything else, made me realize just how much of an effect it had on me. I hope that you can realize the same rediscovery of joy and awesome as you go gluten free, too. :-D

Wow! The pros definitely outweigh the cons! Thanks so much for your advice and motivation! I am really looking forward to feeling better and getting my life back. Your "before" symptoms sound a lot like what I have been going through. Healing is a process and this type of outcome is something I can work for! Thanks again!

[Kimmy1119]

Everyone is different. We do often have some ups and downs for a bit. If you eat as much whole unprocessed food as you can it can help with keeping down CC risk. Do delete dairy at first and then add it back in after you have been feeling good for a while. Be careful about cross contamination, if you have to eat at a restaurant eat at one with a gluten free menu. Get a new dedicated toaster, get your own condiments, butter, nut butters etc and change out any scratched nonstick pans, wooden utensils and cutting boards as well as your strainer.

Sometimes we will go through withdrawl so if your a little moodier than usual at first know that it will pass.

Hopefully you will heal quickly but if you do have some occasional issues know that is normal. Oh and do make sure to check any meds you take and supplements with the maker to be sure they are safe.

Thanks so much! I told my husband just last night that for the last week we have had zero processed foods! I know that this is going to be a struggle just trying to juggle, but in the end I think my entire family is going to benefit from it! Thanks so much for all of the advice! You gave some food for thought that I never would have even considered!

[vawksel]

I'm 12 days into gluten-free free diet, and I stopped biting my finger nails for the first time since 5 years old. I'm 32 now.

It's a physical representation of changed behavior from the anxiety I was suffering from the gluten and subsequent neurological effect on my brain. Outside, you see new nails growing. Inside, I'm becoming more mindful, confident, aware, and gaining energy, and less anxiety, fear, and emotional swings.

I can feel this is going to be a long healing process, but I've already had life-changing benefits, in just 12 days. I'm happy about that.

[thegreatkatsby]

I'm glad someone brought this topic up again. I'm desperately in need to feedback and advice.

I was diagnosed on January 25th of this year, and have tried to remain gluten-free since then. With the exception of one major screw-up (I didn't realize tums had gluten in them and was taking them for several days about two weeks ago before I realized they were making me so sick again), I have been pretty vigilant about avoiding gluten. The first two weeks of gluten-free-ness were euphoric: it was the first time in my life I didn't have daily headaches. Eventually my neurological symptoms (brain fog, anxiety, depression, mood swings, light sensitivity, smell sensitivity, numbness in limbs, etc etc etc) and joint/muscle/bone pain started lifting, and for the most part, with the exception of the tums episode, they have been a lot better.

However, my gastro symptoms are still bad, if not worse than before I went gluten-free (it's hard to know if the pain was always there but masked by the greater pain/disorientation of the neuro symptoms, or if it started developing after going gluten-free--I always blamed stomach pain and diarrhea on my migraines and neurological symptoms, or stress). Furthermore, my fatigue is unbearable, especially in the mornings when I find it next to impossible to wake up and get moving. Every morning I wake up so disoriented, feeling uncomfortably bloated and like I have been kicked in the stomach/ribs. Sometimes I fall back asleep while I'm hitting the snooze button... sometimes I sleep through the alarms (two of them!). The stomach pain normally recedes by the afternoon (sometimes to be replaced with a small headache), but the pain and discomfort in the mornings is nearly unbearable. It's causing problems at work, where I am 1-2 hours late every day. Thankfully my supervisor has tried to be understanding, but it's clear that her understanding is wearing thin.

The most noticeable symptoms that returned quickly when I was taking the tums were the neurological ones (headache, light sensitivity, hyper-smell, brain fog, irritability, mood swings, etc) and the body/bone/joint aches and pain. Perhaps the fatigue/morning symptoms worsened during that time as well, but they've been consistently bad for months, so it's hard to evaluate how the glutening might have affected them. The neuro symptoms have greatly receded again (it's been two weeks since the tums), but the morning/stomach issue is still bad every day.

It's been about four and a half months since I was diagnosed... Although I'm eternally grateful that the neurological symptoms have been significantly reduced, I'm kind of disappointed that I'm not getting better as quickly as I had hoped. I thought my energy and well-being would be much more intact by now, but it seems like the fatigue will never end. The gastro symptoms make me wonder if I have another food problem, or if my tract may have something else wrong with it--although I haven't noticed any significant changes depending on the food I eat (i.e. no specific reaction to dairy or soy that I am aware of... I've been avoiding corn to some extent and I know eggs, by themselves, cause some kind of gallbladder pain so I've been avoiding them too).

Has anyone else had a similar experience?

Just for reference, my AGA was 321 for IgG (need 30 for a positive), 73 for my IgA (need 30 for a positive), and >100 for my tTG (need 10 for a positive). I'm 28 years old, and eat "ok", although with my busy schedule I do have to rely on processed foods more than I should. I've had migraines and neurological symptoms since I was an early teen, with the apex of all of my symptoms reaching a breaking point at the end of last year (leading to diagnosis FINALLY--yay!). I'm also an overweight celiac, versus a wasting-away celiac. My blood tests for glucose last year showed me a little high, but within the normal range. I also tested extremely low for vitamin D in January, which I have since been working on supplementing. I have problems with insomnia, made worse since going gluten-free, but was recently given medication to help with that (though it doesn't help the morning problems).

After the blood test, my primary care doctor and neurologist both said that a biopsy was not needed given the significance of my results. I'm wondering if I should go back to one of them (neither seems to be particularly well informed about celiac, although they know what it is and it was the neurologist who initially suggested I get tested for it), ask to see a gastroenterologist, or whether I should consider asking if I can go to see a celiac specialist in Boston? Any thoughts? About symptoms? Similar experiences? Revelations? Commiseration? I'm tough as nails and having a hard time being a sickly creature.

[KatV1985]

I too am early into my recovery stage...I am also wondering what to expect (was actually going to start a thread but saw this one).

My question is did you find your D went away right away? or how long before it went away? I have been 2 weeks gluten-free and I occasionally still have some D. I will have regular BM's for the morning and then by noon I have had some D. I am not sure if I have accidentally been glutened without knowing, or I am still in the healing process.

[Anomale]

I too am early into my recovery stage...I am also wondering what to expect (was actually going to start a thread but saw this one).

My question is did you find your D went away right away? or how long before it went away? I have been 2 weeks gluten-free and I occasionally still have some D. I will have regular BM's for the morning and then by noon I have had some D. I am not sure if I have accidentally been glutened without knowing, or I am still in the healing process.

Hi! Sorry my response is brief and short but I was also recently dx'ed with celiac disease and I ahve been gluten free for 5 days. I am feeling worse than ever but some people feel that. I do know that you must have a PREbiotics and PRObiotics to heal the intestines so that you can absorb the nutrients frm your foods. This can take a long time and is based on the severity of damage (GI doc can tell) and the quality of the pre an probiotics. Hope that helps.

[AnnaChristine18]

I'm glad someone brought this topic up again. I'm desperately in need to feedback and advice.

I was diagnosed on January 25th of this year, and have tried to remain gluten-free since then. With the exception of one major screw-up (I didn't realize tums had gluten in them and was taking them for several days about two weeks ago before I realized they were making me so sick again), I have been pretty vigilant about avoiding gluten. The first two weeks of gluten-free-ness were euphoric: it was the first time in my life I didn't have daily headaches. Eventually my neurological symptoms (brain fog, anxiety, depression, mood swings, light sensitivity, smell sensitivity, numbness in limbs, etc etc etc) and joint/muscle/bone pain started lifting, and for the most part, with the exception of the tums episode, they have been a lot better.

However, my gastro symptoms are still bad, if not worse than before I went gluten-free (it's hard to know if the pain was always there but masked by the greater pain/disorientation of the neuro symptoms, or if it started developing after going gluten-free--I always blamed stomach pain and diarrhea on my migraines and neurological symptoms, or stress). Furthermore, my fatigue is unbearable, especially in the mornings when I find it next to impossible to wake up and get moving. Every morning I wake up so disoriented, feeling uncomfortably bloated and like I have been kicked in the stomach/ribs. Sometimes I fall back asleep while I'm hitting the snooze button... sometimes I sleep through the alarms (two of them!). The stomach pain normally recedes by the afternoon (sometimes to be replaced with a small headache), but the pain and discomfort in the mornings is nearly unbearable. It's causing problems at work, where I am 1-2 hours late every day. Thankfully my supervisor has tried to be understanding, but it's clear that her understanding is wearing thin.

The most noticeable symptoms that returned quickly when I was taking the tums were the neurological ones (headache, light sensitivity, hyper-smell, brain fog, irritability, mood swings, etc) and the body/bone/joint aches and pain. Perhaps the fatigue/morning symptoms worsened during that time as well, but they've been consistently bad for months, so it's hard to evaluate how the glutening might have affected them. The neuro symptoms have greatly receded again (it's been two weeks since the tums), but the morning/stomach issue is still bad every day.

It's been about four and a half months since I was diagnosed... Although I'm eternally grateful that the neurological symptoms have been significantly reduced, I'm kind of disappointed that I'm not getting better as quickly as I had hoped. I thought my energy and well-being would be much more intact by now, but it seems like the fatigue will never end. The gastro symptoms make me wonder if I have another food problem, or if my tract may have something else wrong with it--although I haven't noticed any significant changes depending on the food I eat (i.e. no specific reaction to dairy or soy that I am aware of... I've been avoiding corn to some extent and I know eggs, by themselves, cause some kind of gallbladder pain so I've been avoiding them too).

Has anyone else had a similar experience?

Just for reference, my AGA was 321 for IgG (need 30 for a positive), 73 for my IgA (need 30 for a positive), and >100 for my tTG (need 10 for a positive). I'm 28 years old, and eat "ok", although with my busy schedule I do have to rely on processed foods more than I should. I've had migraines and neurological symptoms since I was an early teen, with the apex of all of my symptoms reaching a breaking point at the end of last year (leading to diagnosis FINALLY--yay!). I'm also an overweight celiac, versus a wasting-away celiac. My blood tests for glucose last year showed me a little high, but within the normal range. I also tested extremely low for vitamin D in January, which I have since been working on supplementing. I have problems with insomnia, made worse since going gluten-free, but was recently given medication to help with that (though it doesn't help the morning problems).

After the blood test, my primary care doctor and neurologist both said that a biopsy was not needed given the significance of my results. I'm wondering if I should go back to one of them (neither seems to be particularly well informed about celiac, although they know what it is and it was the neurologist who initially suggested I get tested for it), ask to see a gastroenterologist, or whether I should consider asking if I can go to see a celiac specialist in Boston? Any thoughts? About symptoms? Similar experiences? Revelations? Commiseration? I'm tough as nails and having a hard time being a sickly creature.

I know this was like 3 years ago lol but I stumbled on this while obsessively googling answers as to why I'm not feeling better yet and I was wondering if you could help me out?

I've been gluten free and dairy free and grain free and sugar free (paleo) for 4 months after finding out I have Celiac. I'm 18 and I don't even wanna get out of bed in the morning. I had to be taken out of school it's so painful. The gas and bloating give me such sharp pains all throughout the day and I'm doing verything right so I don't know why I'm not getting better. Like you said, I feel like I"m only getting slowly worse...

Did you find releif? How long did it take?

[1desperateladysaved]

When you are following the diet I believe that one is getting better, even if they do not feel like they are.  Picture going up a foggy mountain.  You can't see how far you have come up, but nevertheless you keep taking steps.  You can hit little bumps, twists and turns, but at the end of the day, you are higher.  I have noticed that natural remedies (such as diet) sometimes make one feel worse before they feel better.  Therefore, when I start something new, I consider new symptoms could be a good sign that the body is working on clean out.

 

Dee

[Michelle1]

I believe some folks can go into gluten withdrawal, but aside from that, I haven't heard that it's painful, usually. However, you may be very hungry no matter how much you eat, for a few weeks - I had that. It sucks, definitely. But it goes away, and not everyone gets that.

You will likely be tired for a few weeks. Your body is recovering and trying to heal damage that has likely been developing for years, so it needs rest and fluids and some time, just like recovering from an illness, you know?

There will likely be some emotional issues, but not from healing, just from what is lost now. A lot of us get a little sad when we realize how much of our lives involved food that we can no longer participate in the same way. can't go to many restaurants, have to bring our own food, so potlucks are a completely different experience, as are parties and family get-togethers.

But that passes, too. And it's just different, and we feel better, so not all bad, really.

And then there's the good stuff. Not everyone has this, but for me, this is what WENT AWAY when I went gluten free (and dropped a couple allergens at the same time):

headaches

carpal tunnel

plantar fasciitis

joint and muscle aches

periodic unexplained fevers

brain fog and memory issues

temper control problems

anxiety control problems

insomnia

balance issues

vertigo issues

ear aches

weight (I couldn't lose weight for a long time before going gluten free)

depression

Let me just say - the MENTAL changes were the most amazing. It was like this dark curtain had been over me for years and I never noticed, and all of a sudden it's gone. I can think clearly, I can feel things more deeply, and cope better, and...I feel like somebody gave me back the person I always wished I'd turned out to be, in a way.

Now, I'm more sensitive to gluten than many, and I also seem to be oat sensitive, so many of the gluten free foods are no good for me. Before we figured this out, I was living on less than 10 foods, for months. And I was STILL happier and less stressed than when I was living normally but still eating gluten.

That, better than anything else, made me realize just how much of an effect it had on me. I hope that you can realize the same rediscovery of joy and awesome as you go gluten free, too. :-D

I'm just curious how your weight loss has been...I'm now 7 days gluten free and have had sooooo much trouble losing weight my whole life i'm hoping this helps too (Gastro called me today and said biopsy was also positive) I'm very obese and hoping this will help a little....