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Hunger Finally Going Away?


CGally81

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CGally81 Enthusiast

Okay, I went gluten-free on August 6, and shortly afterwards, the withdrawal symptoms, intense hunger in particular, set in.

For nearly a week I had to eat like every 1-2 hours, then it got down to every 2 hours, including 2 evening snacks and something big before or during bedtime (or else I wouldn't be able to sleep), and eventually got down to 1 evening snack plus big late night snack, to slightly less than that.

Anyway, weekends tend to be my worst times, due to the fact that I get up around noon during the weekends. On Friday, I tried to prepare for that, by eating a large meal late at night so I could sleep well, and I ended up waking up at 11:30am the next day!

Well, yesterday (Saturday), the following happened:

I ate a large lunch at noon.

I had a massive BM maybe an hour after.

I started to get very hungry (dizzy, kinda shaky, you know) around 2pm, and so I made a large snack.

I didn't feel like I really had to eat again that badly, so I made dinner and had it by 6:30pm.

I had another very large BM maybe an hour after.

I ate a big snack at 8:30pm or so.

I didn't feel the strong desire to eat again, and I didn't! I even went to bed at 3am and woke up today at 11:30am!

I mean, 4 meals in a day. And a weekend no less, which is usually my worst day for hunger! (Just 3 weekends ago, I had to eat big like every hour. And I made the mistake of going for a long 70-minute bike ride going real fast without drafting, which of course only made my body crave more calories I bet)

So what happened? I feel like I may be almost out of the woods as far as this constant hunger thing is going. Did the bathroom breaks have anything to do with it? Has anyone else experienced this - having their collossal hunger problem suddenly drop down in a day?

This seems almost too good to be true, and I'll of course continue eating as necessary, and pack large snacks for work. But wow, is this a big change from, say, last Saturday!


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JNBunnie1 Community Regular

Well, either you've started absorbing more nutrients and your digestive system is thus working better, or you've changed something about the food you're eating and so getting more of what you need. Either way, good for you! Glad you're getting some relief, I know what it's like to be that hungry all the time. I kinda broke my hungry? It sounds wierd, but I think I was hungry for so long that now sometimes I won't feel hungry for way too long and then my body shuts down, shaky and weak. I can't really depend on my hungry signals anymore, I just eat at set times now.

CGally81 Enthusiast
Well, either you've started absorbing more nutrients and your digestive system is thus working better, or you've changed something about the food you're eating and so getting more of what you need. Either way, good for you! Glad you're getting some relief, I know what it's like to be that hungry all the time. I kinda broke my hungry? It sounds wierd, but I think I was hungry for so long that now sometimes I won't feel hungry for way too long and then my body shuts down, shaky and weak. I can't really depend on my hungry signals anymore, I just eat at set times now.

Actually, I didn't change my food at all, as far as I can tell.

How long has it been that your body won't send out hungry signals? I think there's more than one kind of hungry signal, so it might have been sending out a different kind.

Like, today I ate at 12:30pm, and also "bathroomed" an hour later in a big way - twice in a row. I'm starting to feel hungry now in the sense that I'm feeling it in my head, like... I don't know how to describe, but it's one type of hunger.

In fact, for the first few weeks, I'd feel a craving for food and rush to get it. Then after a while, I still felt hungry, or like my body needed the food (losing ability to concentrate, etc.), but not the same "craving" sensation. A different type of "you're hungry, go eat" type of message instead. Weakness and shakiness, if I don't address the problem soon enough, would still show up. It's just that instead of "inability to stay focused, craving feeling, weakness and shakiness" it's "inability to stay focused, weakness and shakiness".

And that's actually what it's been like for a long time for me anyway. That is, if I don't eat enough, I wouldn't always get cravings, but I'd get other signals saying I needed food.

Gfresh404 Enthusiast
Well, either you've started absorbing more nutrients and your digestive system is thus working better, or you've changed something about the food you're eating and so getting more of what you need. Either way, good for you! Glad you're getting some relief, I know what it's like to be that hungry all the time. I kinda broke my hungry? It sounds wierd, but I think I was hungry for so long that now sometimes I won't feel hungry for way too long and then my body shuts down, shaky and weak. I can't really depend on my hungry signals anymore, I just eat at set times now.

I feel the same way! I think for the most part my extreme hunger has gone away. But if I try to rely on my hunger signals I'll go way too long without eating. I have to just try and eat at regular intervals too.

CGally81 Enthusiast

I may have spoken too soon. Today is being a typical Sunday, even if yesterday felt like a breakthrough. Still, hopefully this is a sign of things to come later? After all, it's better than it was a month ago, and especially when I first started!

EDIT at 5:17pm: Maybe not. I still didn't have to eat as much as on all the other Sundays I'd been having nearly the past 2 months. I went for a 30-minute bike ride and didn't feel super hungry or anything when I got back, nor have I eaten since then. Maybe I don't need as much as food as before after all, and maybe I had reached a breakthrough.

I'm thinking this may be a "halfway point". Counting calories, I easily ate over 3000 of them yesterday, yet still only had to eat 4 big meals (lunch, large afternoon snack, dinner, not-as-large evening snack). So maybe in 2 months I'll be totally back to normal?

JNBunnie1 Community Regular
Actually, I didn't change my food at all, as far as I can tell.

How long has it been that your body won't send out hungry signals? I think there's more than one kind of hungry signal, so it might have been sending out a different kind.

Like, today I ate at 12:30pm, and also "bathroomed" an hour later in a big way - twice in a row. I'm starting to feel hungry now in the sense that I'm feeling it in my head, like... I don't know how to describe, but it's one type of hunger.

In fact, for the first few weeks, I'd feel a craving for food and rush to get it. Then after a while, I still felt hungry, or like my body needed the food (losing ability to concentrate, etc.), but not the same "craving" sensation. A different type of "you're hungry, go eat" type of message instead. Weakness and shakiness, if I don't address the problem soon enough, would still show up. It's just that instead of "inability to stay focused, craving feeling, weakness and shakiness" it's "inability to stay focused, weakness and shakiness".

And that's actually what it's been like for a long time for me anyway. That is, if I don't eat enough, I wouldn't always get cravings, but I'd get other signals saying I needed food.

By hungry, I mean my stomach getting the growly-burny feeling of 'feed me'. I don't mean a craving, or anything else. My stomach has been failing to signal that it's empty, and then my body gets pissed at lack of fuel and I'll be shaky and weak, but still no hungry feeling in my stomach. It used to be 24-7, so it's kinda wierd. That's why I put myself on a schedule. It's not like I NEVER get hungry, it just doesn't 'work' sometimes.

CGally81 Enthusiast
By hungry, I mean my stomach getting the growly-burny feeling of 'feed me'. I don't mean a craving, or anything else. My stomach has been failing to signal that it's empty, and then my body gets pissed at lack of fuel and I'll be shaky and weak, but still no hungry feeling in my stomach. It used to be 24-7, so it's kinda wierd. That's why I put myself on a schedule. It's not like I NEVER get hungry, it just doesn't 'work' sometimes.

To be honest, I don't consider a growling stomach to be the best indicator of hunger. There's other signals the body gives off that mean that you're hungry. I'd always felt hunger more "in the body" or "in the head".

Come to think of it, young children often complain that they're hungry because, well, they feel hungry, not because their stomach is making noise.

In fact, I get hungry more often than I hear my stomach growl. A growling stomach is really the sound of your stomach acid doing something or other in there, and is more related to things like what you ate, how it's digesting, and if there's too much empty space of some sort.

Well, I just ate for the 4th time (9 PM snack - started to get a bit weak/dizzy beforehand) today. Considering that the last few weekends have had me eating every 1-2 hours, this is an improvement. Let's see what the coming week is like, as weekdays tend to have their own hunger schedule. I can't wait to truly get back to normal, and just eat on schedule (breakfast, lunch, dinner, plus one snack perhaps) rather than because I strongly have to.

EDIT (Monday): Some "breakthrough". I had to eat again on Sunday late night, around 2 AM as I couldn't sleep. It's Monday now, and my body is acting just the same as, say, last Monday. I can't wait for this hunger to really drop, but Saturday was apparently just a pleasantly unexpected anomaly.


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JNBunnie1 Community Regular
To be honest, I don't consider a growling stomach to be the best indicator of hunger. There's other signals the body gives off that mean that you're hungry. I'd always felt hunger more "in the body" or "in the head".

Come to think of it, young children often complain that they're hungry because, well, they feel hungry, not because their stomach is making noise.

In fact, I get hungry more often than I hear my stomach growl. A growling stomach is really the sound of your stomach acid doing something or other in there, and is more related to things like what you ate, how it's digesting, and if there's too much empty space of some sort.

Well, I just ate for the 4th time (9 PM snack - started to get a bit weak/dizzy beforehand) today. Considering that the last few weekends have had me eating every 1-2 hours, this is an improvement. Let's see what the coming week is like, as weekdays tend to have their own hunger schedule. I can't wait to truly get back to normal, and just eat on schedule (breakfast, lunch, dinner, plus one snack perhaps) rather than because I strongly have to.

EDIT (Monday): Some "breakthrough". I had to eat again on Sunday late night, around 2 AM as I couldn't sleep. It's Monday now, and my body is acting just the same as, say, last Monday. I can't wait for this hunger to really drop, but Saturday was apparently just a pleasantly unexpected anomaly.

I didn't mean the noise of growling, I meant I used to get a mean, angry growly 'feeling' in my stomach, a truly empty feeling that meant 'feed me', sort of a cramping of the stomach, almost like heartburn. I rarely get that now, I didn't eat enough yesterday so I've been getting it today.

So how long have you been gluten free again? I ask because it can take some time for this particular symptom to pass, it took me almost a year after going gluten free, and had been happening for a few years before that.

CGally81 Enthusiast
I didn't mean the noise of growling, I meant I used to get a mean, angry growly 'feeling' in my stomach, a truly empty feeling that meant 'feed me', sort of a cramping of the stomach, almost like heartburn. I rarely get that now, I didn't eat enough yesterday so I've been getting it today.

So how long have you been gluten free again? I ask because it can take some time for this particular symptom to pass, it took me almost a year after going gluten free, and had been happening for a few years before that.

I've had the growly "feeling". It's definitely apparently silent (it seems as if the "noise" it makes is more the feeling of it than anything else, if that makse sense), and I've gotten it when not feeling hungry in other ways. I used to get it all the time for months, but don't get it as much now.

Anyway, I've had gluten-related issues since around March, at least when it comes to the overt symptoms (in my case, brain fog, and eventually, stomach acting up with certain movements every minute or two, even when lying in bed). But last year, I developed a reaction to fructose, in which eating any fruit other than bananas (which contain a mix of different sugar types instead of just fructose) would cause me to get intensely hungry. That may have been Celiac causing that - in fact, a test just a few weeks ago seems to indicate that the fructose problem may be gone, or at least going.

So I've had overt symptoms since March this year, but may have had "silent" symptoms, such as the "fruit makes me intensely hungry", for over a year. So I'd conservatively say I had gluten intolerance symptoms for at least a year.

When did I go gluten free? August 6. I remember that day as when I discovered the problem, and decided I was going to do something about it. Technically, it was actually the next day that I ate totally gluten free and felt great (before the withdrawal and hunger set in a few days later, and with it, a day of having a fever).

If age plays any role, I'm 28. I realize that the longer one has had symptoms, the longer the withdrawal and hunger will be. I've read people saying it took months, a year, or even 2 years for their hunger to go away. Some even mentioned eating 8 large meals a day for a year, which almost describes what it was like for me when the hunger first started. (I was eating every hour or two, loading up on anything gluten-free I could find, while frequently having difficulty concentrating due to hunger throughout most of the day. Good thing I was on vacation, because there's no way I could go like that at work!)

So it's been nearly two months. Only two accidentally glutenings, and both occurred in August - one was the frosting on otherwise gluten-free cupcakes, and the other was the crackers that fish was cooked in (in late August). Fortunately fish itself contains L-glutamine, and therefore the symptoms that time were very minor (mostly gastro, and were gone within an hour!), but still, it may have done internal damage anyway.

JNBunnie1 Community Regular
I've had the growly "feeling". It's definitely apparently silent (it seems as if the "noise" it makes is more the feeling of it than anything else, if that makse sense), and I've gotten it when not feeling hungry in other ways. I used to get it all the time for months, but don't get it as much now.

Anyway, I've had gluten-related issues since around March, at least when it comes to the overt symptoms (in my case, brain fog, and eventually, stomach acting up with certain movements every minute or two, even when lying in bed). But last year, I developed a reaction to fructose, in which eating any fruit other than bananas (which contain a mix of different sugar types instead of just fructose) would cause me to get intensely hungry. That may have been Celiac causing that - in fact, a test just a few weeks ago seems to indicate that the fructose problem may be gone, or at least going.

So I've had overt symptoms since March this year, but may have had "silent" symptoms, such as the "fruit makes me intensely hungry", for over a year. So I'd conservatively say I had gluten intolerance symptoms for at least a year.

When did I go gluten free? August 6. I remember that day as when I discovered the problem, and decided I was going to do something about it. Technically, it was actually the next day that I ate totally gluten free and felt great (before the withdrawal and hunger set in a few days later, and with it, a day of having a fever).

If age plays any role, I'm 28. I realize that the longer one has had symptoms, the longer the withdrawal and hunger will be. I've read people saying it took months, a year, or even 2 years for their hunger to go away. Some even mentioned eating 8 large meals a day for a year, which almost describes what it was like for me when the hunger first started. (I was eating every hour or two, loading up on anything gluten-free I could find, while frequently having difficulty concentrating due to hunger throughout most of the day. Good thing I was on vacation, because there's no way I could go like that at work!)

So it's been nearly two months. Only two accidentally glutenings, and both occurred in August - one was the frosting on otherwise gluten-free cupcakes, and the other was the crackers that fish was cooked in (in late August). Fortunately fish itself contains L-glutamine, and therefore the symptoms that time were very minor (mostly gastro, and were gone within an hour!), but still, it may have done internal damage anyway.

Hmmmm... I actually dealt with the 'horrible hungry' for quite some time before my other Celiac symptoms became apparent, I was only 'sick' for six months. I'm 5'7'' and was down to 105lbs at my sickest. After going wheat free (didn't know about gluten then) I immediately added on 15 lbs, and then when I figured out gluten a year or so later I added another 15 within 3 months, I actually have stretch marks! But the hungry stuck around a lot longer than the skinny, I'd say 9-12 months after total gluten free. Hopefully your system wasn't quite as far gone, I hope it clears up sooner for you, sounds like you're already on the path.

Wolicki Enthusiast

Yeah, isn't the hunger crazy? I have been gluten-free for 3 months. In the first 6 weeks or so, I was constantly hungry, and never left the house without a snack. I mean, crazy hungry. I felt like I needed to eat 20 minutes after every meal. Thankfully, it has subsisded. Now I eat 3 times a day, plus a small snack in the morning and right before bed, otherwise i can't sleep.

In the beginning, I would wake up 2-3 times each night starving! I thought I was losing it and imagining the hunger.

CGally81 Enthusiast

Okay, the hunger is now getting worse again. I thought Saturday was a breakthrough, but it was just an anomaly, or maybe it was "better before getting worse again". Because I ate today like I normally do during a weekday, and was getting lethargic and hungry only an hour and a half after dinner. Some "improvement"!

Okay, who else has gone through this? Does the hunger sometimes get better, then worse again, then better after that? Are there downs following the next big "up"? I seriously want something to look forward to, but my own body is disagreeing with me a lot.

Anyone who has been through the hunger phase, or is going through it, let me know if things really do get better, then worse, then better again. If this is normal, and I should just put up with it.

boysmom Explorer
Because I ate today like I normally do during a weekday, and was getting lethargic and hungry only an hour and a half after dinner. Some "improvement"!

You mentioned earlier in the thread that you aren't having typical hunger pangs in the stomach but you read other signs that your body is hungry again. If what you're talking about is the above lethargy, some brain fog, maybe even drowsiness an hour or so after eating, I've been doing that for several weeks now, but I had a different explanation for it. In my case anyway, I suspect it's just that my body is using more energy to digest my food at present, so if I can I try to rest or even nap for a short time after eating. It seems to help me get back to normal energy if I can even rest for 15-30 minutes.

You said it was waking you in the night, so maybe it's not the same thing, but I thought I'd throw it out for your consideration.

BTW, if it helps any, I've been gluten-free since the beginning of June and the tiredness doesn't hit every meal any more, but still does occasionally, especially after breakfast.

CGally81 Enthusiast
You mentioned earlier in the thread that you aren't having typical hunger pangs in the stomach but you read other signs that your body is hungry again. If what you're talking about is the above lethargy, some brain fog, maybe even drowsiness an hour or so after eating, I've been doing that for several weeks now, but I had a different explanation for it. In my case anyway, I suspect it's just that my body is using more energy to digest my food at present, so if I can I try to rest or even nap for a short time after eating. It seems to help me get back to normal energy if I can even rest for 15-30 minutes.

You said it was waking you in the night, so maybe it's not the same thing, but I thought I'd throw it out for your consideration.

BTW, if it helps any, I've been gluten-free since the beginning of June and the tiredness doesn't hit every meal any more, but still does occasionally, especially after breakfast.

You're right that I get the lethargy, some concentration problems, and drowsiness. I don't wake up at night, but I find it harder to sleep if I'm hungry and don't eat something big before going to bed.

You've been gluten-free since June, but how long have you had symptoms? I had overt symptoms 5 months, but possible "covert" symptoms longer than that, like maybe a year (fructose problem) or so.

boysmom Explorer
You've been gluten-free since June, but how long have you had symptoms? I had overt symptoms 5 months, but possible "covert" symptoms longer than that, like maybe a year (fructose problem) or so.

I'm not sure what to call overt and what to call covert, so here's a synopsis of my life. lol

I'm 47, and when I began researching celiac disease ... well, the more I read the farther back I could see possible signs. Mostly I think it fired up when I left home for college, but I had iron deficiency even in childhood and my baby book shows that I saw a doctor for a rash and vomiting a week after my mother introduced mixed cereal (I'm an oldest child, so I am blessed to have a mostly completed baby book ;) ). I've had joint and muscle pain most of my adult life, could not lose weight even on a diet, persistent water retention,ulcer my first year of college, hypothyroid diagnosed at 29. In the last 10 years I've had a recurring rash that I now suspect may have been DH, a lot of abdominal bloating, to the point that a tiny meal left me feeling like I'd eaten Thanksgiving dinner and my stomach muscles would HURT, thinning hair, and increasing exhaustion, inability to think clearly, and memory loss, fuzzy vision in spite of new glasses and annual eye exams.

What finally helped me pin down what was going on was when, this last April, I ended up in the ER because I thought I was having a heart attack, but was diagnosed with esophageal spasms. I guess April is when all the niggling 'little' (but not so little) symptoms culminated in an overt symptom that finally sent me searching for my own answer and brought it all into the open.

CGally81 Enthusiast
I'm not sure what to call overt and what to call covert, so here's a synopsis of my life. lol

I'm 47, and when I began researching celiac disease ... well, the more I read the farther back I could see possible signs. Mostly I think it fired up when I left home for college, but I had iron deficiency even in childhood and my baby book shows that I saw a doctor for a rash and vomiting a week after my mother introduced mixed cereal (I'm an oldest child, so I am blessed to have a mostly completed baby book ;) ). I've had joint and muscle pain most of my adult life, could not lose weight even on a diet, persistent water retention,ulcer my first year of college, hypothyroid diagnosed at 29. In the last 10 years I've had a recurring rash that I now suspect may have been DH, a lot of abdominal bloating, to the point that a tiny meal left me feeling like I'd eaten Thanksgiving dinner and my stomach muscles would HURT, thinning hair, and increasing exhaustion, inability to think clearly, and memory loss, fuzzy vision in spite of new glasses and annual eye exams.

What finally helped me pin down what was going on was when, this last April, I ended up in the ER because I thought I was having a heart attack, but was diagnosed with esophageal spasms. I guess April is when all the niggling 'little' (but not so little) symptoms culminated in an overt symptom that finally sent me searching for my own answer and brought it all into the open.

I had a fever (of the hot, not cold, kind) a few days before discovering the problem, but I'd known for months that something was wrong. I assumed it had to do with fat/protein/carbohydrate balance, but instead it was the specific food ingredient of gluten. Good thing I only had a handful of gluten foods in my daily diet (whole-wheat bread and granola bars, which are both supposedly healthy, but were messing me up). There was also the occasional pretzel, but that was it as far as common foods went, so at least going gluten-free meant removing very few foods from my diet. And not eating anything "special" (cake, cookies) on special occasions.

So you'd been gaining weight, so therefore I imagine you wouldn't have the hunger problem quite like someone losing weight would. Some people on here said they'd been gaining weight and were hungry all the time, but suddenly lost their appetite and felt satisifed more easily when they went gluten-free. For many others, including me, it's been the opposite. I'd been losing weight even when I ate more to deal with the hunger caused by having consumed gluten (that was one of the symptoms I suffered), and kept losing, down to 153 pounds. I'm hungry all the time, sometimes hearing or feeling my stomach make noises/"growls", and gaining weight (mostly muscle, but still a size 30, although a bit tighter).

It's possible that I may have had "silent" symptoms for a while. Again, the fructose problem (apples made me intensely hungry, a problem that began to occur only a few months after I'd added them to my diet, and got worse over time until I discovered the problem), milk causing headaches, but before that, I recall something from a few years ago. I had grand jury duty, and every day we had it (one day a week for 17 weeks), we had donuts. I'd eat one, and feel very sleepy and not really able to concentrate. Not the severe brain fog of later, but still, one donut was powerful stuff even back then. It's possible then that this was actually a symptom of Celiac even back then, but not as powerful, so therefore not as traceable as being related to Celiac. Therefore, I should extend my conservative estimate for how long I'd been suffering from this to 2 years.

boysmom Explorer

It is entirely possible that bodies that respond to gluten by losing weight would also respond differently in healing process than those that respond by conserving weight. I wanted to add, though, that from high school until the bloating started about 10 years ago I had a 'stock up' period every fall where I was ravenously hungry and had cravings I didn't usually deal with. I often gained 10 lbs going into winter, but would drop it again in the spring. Knowing what I know now, I suspect it may have been my body's way of coping either with the switch to winter foods or with 'knowing' that with winter coming on I was going to be eating more pasta, casseroles, breads, etc. where in the spring and summer we ate more meat and veggie meals. Either that or I'm part bear and was preparing for hibernation ;)

JNBunnie1 Community Regular
I had a fever (of the hot, not cold, kind) a few days before discovering the problem, but I'd known for months that something was wrong. I assumed it had to do with fat/protein/carbohydrate balance, but instead it was the specific food ingredient of gluten. Good thing I only had a handful of gluten foods in my daily diet (whole-wheat bread and granola bars, which are both supposedly healthy, but were messing me up). There was also the occasional pretzel, but that was it as far as common foods went, so at least going gluten-free meant removing very few foods from my diet. And not eating anything "special" (cake, cookies) on special occasions.

So you'd been gaining weight, so therefore I imagine you wouldn't have the hunger problem quite like someone losing weight would. Some people on here said they'd been gaining weight and were hungry all the time, but suddenly lost their appetite and felt satisifed more easily when they went gluten-free. For many others, including me, it's been the opposite. I'd been losing weight even when I ate more to deal with the hunger caused by having consumed gluten (that was one of the symptoms I suffered), and kept losing, down to 153 pounds. I'm hungry all the time, sometimes hearing or feeling my stomach make noises/"growls", and gaining weight (mostly muscle, but still a size 30, although a bit tighter).

It's possible that I may have had "silent" symptoms for a while. Again, the fructose problem (apples made me intensely hungry, a problem that began to occur only a few months after I'd added them to my diet, and got worse over time until I discovered the problem), milk causing headaches, but before that, I recall something from a few years ago. I had grand jury duty, and every day we had it (one day a week for 17 weeks), we had donuts. I'd eat one, and feel very sleepy and not really able to concentrate. Not the severe brain fog of later, but still, one donut was powerful stuff even back then. It's possible then that this was actually a symptom of Celiac even back then, but not as powerful, so therefore not as traceable as being related to Celiac. Therefore, I should extend my conservative estimate for how long I'd been suffering from this to 2 years.

It's easy to fall into the mindset of wanting your symptoms to match someone else's, or to match a list in a book. I don't think any two people have had the same recovery process. I only had outright symptoms for six months, but it took over a year for the hunger to go away. Don't worry, pretty much anything that happens is going to be perfectly normal, for you.

CGally81 Enthusiast
It's easy to fall into the mindset of wanting your symptoms to match someone else's, or to match a list in a book. I don't think any two people have had the same recovery process. I only had outright symptoms for six months, but it took over a year for the hunger to go away. Don't worry, pretty much anything that happens is going to be perfectly normal, for you.

Yeah, that's true. If your symptoms and/or recovery process match someone else's, then you know what to expect.

I am probably going through another phase now. I get tired sometimes right after eating. Yesterday, my hunger dropped enough that I ate less, and didn't have to eat any really big snack after dinner. I stayed up until 2am, and got up around noon today. I can't say I expect this 3-day weekend to be similar to yesterday or last Saturday, but I'm hoping for improvements.

I am trying to get a lot of fiber now. I think there is a relationship between using the bathroom and hunger.

Now, you say you had outright symptoms for 6 months? I had them for 5. But do you think you had "subtle" symptoms before that? Do you remember having any other food intolerances, such as milk, or fruit, or anything? I developed a fructose problem last year, before I got the obvious celiac symptoms, but I know it's been in my system for at least a year or more.

All diseases tend to be like that, in that once you've developed the obvious symptoms and are clearly feeling the effects of the disease, you've already had it for a while and it's done damage. So I think you and I both probably had it for a while, how long I'm not certain, before the distinctive symptoms showed up that signaled that something was wrong.

Also, I'm 28. I was able to eat gluten my whole life and not suffer problems that I knew of. I used to have graham crackers as part of my lunch at work. (This was a time when I was trying to lose weight) How about you? Do you think you may have had subtle problems possibly for years and not known about it? When the symptoms started to come, did they come on real strong?

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      I'd like to second supplementation.  Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness.  We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and B12, that's a good start.  I am not sure where you are posting from but in the UK normal lab results for B12 are quite a bit lower than in other countries, so you might find if you are borderline you will get some improvement by continuing to supplement that.   I found taking magnesium also incredibly helpful against facial twitches. I don't know about you, but all these symptoms increased my anxiety levels as I was worried about them.  That only served to make the symptoms worse.  So it might be worth looking into addressing any underlying anxiety issues.   I still notice that if I'm nervous, or worried, my blood sugar levels are down, some of the symptoms comes back temporarily.  It's like there is still a bit of a weakness there.
    • knitty kitty
      Hello, @Itsabit, Your journey sounds very similar to mine.   I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change. I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless. https://pubmed.ncbi.nlm.nih.gov/35506963/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/ I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/ https://pubmed.ncbi.nlm.nih.gov/1977254/ Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.   https://pubmed.ncbi.nlm.nih.gov/8445075/ https://cgp.iiarjournals.org/content/10/4/169 https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/ https://pubmed.ncbi.nlm.nih.gov/1977254/ You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed. Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.   I hope you can find some benefit from my experiences.  Keep us posted on your progress.   P.S.  When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away.  The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain. For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products.  Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly.  Tallow soap and olive oil soap is beneficial as well.
    • knitty kitty
      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis you mentioned in another post. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • knitty kitty
      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • Itsabit
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