Not Really Understanding Some Things About This Diet...

[Chrisser]

If going gluten-free is supposed to be so good for us, then how come I feel worse in some ways after going gluten-free? Granted, it's only been a few weeks, and I do feel better in some ways...but I'm so tired. I haven't gotten more than 3-5 hours of sleep a night in the last week and a half (wake up several times during the night needing to eat). I feel like my head is detached from my body. My coordination is off, my reaction time is off, etc. I had to quit my new job after only a week because I'm not well enough. I feel like in some ways I feel worse than I did before going gluten-free. I think right now it's just a matter of getting a decent night's sleep, but I'm just still kind of confused...

[jknnej]

Hi there,

I know what you're feeling...most of us have gone through a similar experience.

You are probably experiencing gluten withdrawls. It can take some time for this to go away. Some people are lucky and just get better right away but for a lot of us that isn't how it happened. Also, it takes time for your gut to heal after going gluten-free so it's understandable that you may not feel well.

Did you go gluten-free all at once? I did and my dr. said I should have gradually quit gluten.

I experienced nausea, light-headedness, "detachedness", anxiety, depression, hearing my own heatbeat, fatigue, stomach aches (different than the gluten kind), and many more symptoms.

the good news is that it will all subside eventually. Everyone's experience is different. I never had depression before going gluten-free (I am 30 and went gluten-free a year and a half ago). Now I take Cymbalta which really helps me. Also I developed reflux and I take Nexium now.

In some ways I think a gluten-free diet is better for us and in some ways I think it is hard because my body does feel deprived of nutrients sometimes. But it will get better for you if you keep a balanced diet and just stick it out. It will pass!

You can always ask us for advice and come here to vent as well! We all do!

Oh, and just in case, make sure no gluten is "sneaking in" via shampoo, make-up, etc. or an ingredient you didn't realize contained gluten. When we go gluten-free our reactions usually get worse the longer you're gluten-free.

It will get better!!

[sparkles]

Sometimes it takes a while before you start to feel better....but I would say that maybe you are still getting glutened. It is really hard to eliminate all gluten from your life at the very beginning because gluten is in so many other products besides just food. I got sick from cooking food in an old cast iron skillet. It had fried many coated foods in it over the years and I got sick from the residue in the skillet. Other things to check for are hair products, cosmetics....your pots and pans, the toaster....do other people use your butter, peanut butter, mayo? There is cross contamination everywhere! Also celiacs often have other intolerances.... all that needs to be checked out. The diet and everything that it entails can be overwelming. Sometimes, it is just easier to give up ABSOLUTELY everything, eating just fresh meat, fresh veggies, and fresh fruit and then start adding foods that you are sure are gluten-free a few at a time. I think it is really easy to get gluttened right at first just because we make assumptions about what should and should not be gluten-free. I still get glutened and I don't cheat...but there is cross contamination everywhere!!!!! Good luck...It is miserable to give up so much and still feel really cruddy!

[Chrisser]

Hi there,

I know what you're feeling...most of us have gone through a similar experience.

You are probably experiencing gluten withdrawls. It can take some time for this to go away. Some people are lucky and just get better right away but for a lot of us that isn't how it happened. Also, it takes time for your gut to heal after going gluten-free so it's understandable that you may not feel well.

Did you go gluten-free all at once? I did and my dr. said I should have gradually quit gluten.

I experienced nausea, light-headedness, "detachedness", anxiety, depression, hearing my own heatbeat, fatigue, stomach aches (different than the gluten kind), and many more symptoms.

the good news is that it will all subside eventually. Everyone's experience is different. I never had depression before going gluten-free (I am 30 and went gluten-free a year and a half ago). Now I take Cymbalta which really helps me. Also I developed reflux and I take Nexium now.

In some ways I think a gluten-free diet is better for us and in some ways I think it is hard because my body does feel deprived of nutrients sometimes. But it will get better for you if you keep a balanced diet and just stick it out. It will pass!

You can always ask us for advice and come here to vent as well! We all do!

Oh, and just in case, make sure no gluten is "sneaking in" via shampoo, make-up, etc. or an ingredient you didn't realize contained gluten. When we go gluten-free our reactions usually get worse the longer you're gluten-free.

It will get better!!

I did go gluten-free cold turkey. When the nurse called me with my blood test results, all she told me was to try the gluten-free diet. She didn't mention anything about the 2-week detox period...the first 5 days or so were the worst. Now my body is just responding to everything so differently. I've mostly been eating meat, rice, potatoes, and vegetables, and I'm already so sick of it. One of my tasks tomorrow is to try to call as many companies as possible regarding my toiletries, etc. This weekend I was doing some online research on the medications I take and discovered that my acne medication that I've taken for like 4 years has wheat starch!! I think the one thing that's killing me right now is the lack of sleep. I want just one night of solid, uninterrupted sleep.

[daffadilly]

You might want to start taking a B12 everyday. I guess I should get my signature together & put that on it, because I think we should all take B12.

[Chrisser]

You might want to start taking a B12 everyday. I guess I should get my signature together & put that on it, because I think we should all take B12.

where can I get it?

[jknnej]

I take a B Complex vitamin by Twin Lab, a good vitamin company. I get them at my local grocery store....depending on where you live....

I am also sick of the same foods and it has led me to eat lots of sugar! I'd love to try new recipes and all that but the fact is, even though I am a good cook, I don't really LIKE to cook! So I guess it's either spend more time in the kitchen and eat try better recipes or stick with the same boring quick stuff! I know it's not a good choice but oh well....that's what life has dealt us!!!

The gluten withdrawls will get better. I wish, though, that I'd known about the detox thing before I went gluten-free, too!!!

[tarnalberry]

I would verify that you're getting enough food, and of the right balance for you (I feel off when I eat too high a percentage of carbs because I have hypoglycemic tendencies), and that you're getting enough sleep and dealing with stress alright. It's not always directly the celiac, but can be things we change in relation to it. (I know, I know, it does get so very complicated!)

[Chrisser]

I would verify that you're getting enough food, and of the right balance for you (I feel off when I eat too high a percentage of carbs because I have hypoglycemic tendencies), and that you're getting enough sleep and dealing with stress alright. It's not always directly the celiac, but can be things we change in relation to it. (I know, I know, it does get so very complicated!)

I'm starting to wonder if I'm eating enough as well. I already feel like I'm eating all the time though. I do need to go to the store though and get more snacky-type things. I've pretty much been eating meat, rice and potatoes with some vegetables thrown in there. My sleep has been very erratic, especially the last week. Up until then I was sleeping through the night and had a definitive start and end to my day, but then all of a sudden I started sleeping like 4 hours a night and waking up several times. It's either been because of a bothered stomach or hungry or hypoglycemic symptoms and needing to eat. I think the lack of sleep is what's making me feel so badly, but I don't know what to do to change that.

There is definitely an element of stress there, as I had started a new job last week but already have to quit because I'm not well enough to work...so now I'm back to living off savings, stressing about finances, etc...all while trying to adjust to this diet and find the energy to make it to the grocery store and cook. I just feel like 'if only I can get some sleep...'

[Guest Doll]

I'm sorry to hear that things are not going so well, but as everyone else has said, it does take a fair bit of time for the body to heal. For some adults, as long as 2 years gluten-free depending on the amount of damage, duration of the disease, and how well your body heals. Cross-contamination also can undermine even the best of gluten-free diets. For this initial period, I would avoid eating out right now and only eat what you have prepared personally as gluten-free.

I personally do not restrict shampoo etc that has gluten as the likelihood of ingesting shampoo/soap is non-existent for me. Some people do need to watch these areas though, particularly those who have a wheat allergy or contact dermatitis from DH.

I am glad that you did get a positive blood test result, as many people will try the gluten-free diet when in fact they have another non-Celiac issue that needs to be addressed in order to feel better. I do think that you should get a full physical, including bloodwork like a CBC (complete blood count), vitamin and mineral levels, as well as TSH and T4/T3 levels (Thyroid) to name a few.

People with true Celiac, which is autoimmune in nature, have "leaky" guts which allow foreign whole proteins such as gluten in, thus triggering the autoimmune attack. For those without Celiac, gluten is not absorbed whole (will be broken down into individual amino acids) and is not toxic in any way. Because of our leaky guts, we have increased odds of letting in other foreign whole proteins and thus triggering other reactions to dietary proteins and/or autoimmune diseases. The disease progression seems to be: Having the genetics for susceptibility to the initial trigger, the intial trigger ( a virus, bacteria, etc.) that causes our guts to become "leaky", and last, our now permanent reaction to gluten.

Scientifically and personally I have never heard of having to "detoxify" from gluten as it is a foreign whole protein mistakenly allowed into the body and not a chemical dependence????

I would start FIRST with a complete physical to make sure nothing else is going on and you do not have any severe deficiencies. Try to space your meals and eat plenty of complex carbs (brown rice, beans, etc.) and lean protein. Make sure you eat every few hours and avoid simple sugars. If you are stressed, take a hot bath and drink some herbal (gluten-free) tea. Try to avoid caffeine for now. Get some light to moderate exercise like walking during the day if you can.

If you do not improve, you may want to be tested for other reactions/intolerances as suggested. Many Celiacs also let in whole Casein proteins, and need to follow a Casein free diet as well.

Do you have any other health issues, past or present? Are you on any medications?

Hope you feel better soon!

[gfp]

Scientifically and personally I have never heard of having to "detoxify" from gluten as it is a foreign whole protein mistakenly allowed into the body and not a chemical dependence????

Gluten is classed as an exorphin, it binds to endorphin receptors however less perfectly than the opoids and casuses damage to the receptor.

On top of this the mechanism which allows the glaidin's to cross the gut blood barrier are usually also present in the brain blood barrier, which is largely to do with increaded zonulin levels.

There is a lot of scientific evidence, what is missing is clinical trails but clinical trials are not science.

[Guest Doll]

Gluten is classed as an exorphin, it binds to endorphin receptors however less perfectly than the opoids and casuses damage to the receptor.

On top of this the mechanism which allows the glaidin's to cross the gut blood barrier are usually also present in the brain blood barrier, which is largely to do with increaded zonulin levels.

There is a lot of scientific evidence, what is missing is clinical trails but clinical trials are not science.

I totally forgot about gluten's affects on the CNS in some people! So that does make perfect sense. And how Schizophrenia and/or Schizophrenia like symptoms are often present in Celiac's after gluten exposure.

Now, since not everyone has "withdrawal" symptoms, I wonder if it's an additional gene that must be present, or if those people have additional receptors.

I for example have insane amounts of zonulin, and large intestinal "gaps" (as demonstrated by 3 autoimmune diseases, extreme sensitivity to gluten, and severe reactivity) and yet I have never had withdrawal symptoms, although I do miss the TASTE of gluten containing food....sigh.....

It's quite ironic that endorphins by nature are intended to be a natural pain killer and relaxer. I just think about how I feel after being glutened and yikes...pain isn't the worst of it!

For those of you who have had withdrawal symptoms, what do gluten cravings feel like? How long until you feel better?

[gfp]

I totally forgot about gluten's affects on the CNS in some people! So that does make perfect sense. And how Schizophrenia and/or Schizophrenia like symptoms are often present in Celiac's after gluten exposure.

Now, since not everyone has "withdrawal" symptoms, I wonder if it's an additional gene that must be present, or if those people have additional receptors.

I for example have insane amounts of zonulin, and large intestinal "gaps" (as demonstrated by 3 autoimmune diseases, extreme sensitivity to gluten, and severe reactivity) and yet I have never had withdrawal symptoms, although I do miss the TASTE of gluten containing food....sigh.....

It's quite ironic that endorphins by nature are intended to be a natural pain killer and relaxer. I just think about how I feel after being glutened and yikes...pain isn't the worst of it!

For those of you who have had withdrawal symptoms, what do gluten cravings feel like? How long until you feel better?

Ah, just joined, you don't ask much do you? (just waxing a little poetic at the moment)

Describe the inexplicable ... now there is a challenge. You ask the hardest questions, I would love to be able to explain it to my GP and GI....

Seriously, good questions .... but I think you might also have given some answers.

I just think about how I feel after being glutened and yikes...pain isn't the worst of it!

Im starting to think that perhaps this is withdrawal and that 'brain fog' and associated stuff is actually exorphin controlled.

One thing I have noticed on my own tests is I can eat gluten and be ill.... but if I constantly top up the gluten the worst comes when I finally snap.

If you compare this with giving up smoking (another thread right now) obviously the health of the average smoker isn't great... but so long as they keep topping up the toxin the withdrawal phase comes every few hours or minutes depending on the level of addiction.

The body is not very good at seperating these signals... hence why people eat to offset it because the body really only has the "put something in me i need something" feeling.

Depression is quite easily explained by damaged endorphin receptors.... but so long as the gluten is attached it at least partly functions.

There are also the "wipe the breadcrumbs off brigade" who also don't suffer withdrawal either?

and then turning the whole thing around, its a bit like smoking again.... the damage is something that happens over years... the 60 a day smoker has no idea what it is to wake up feeling "normal" in the morning because to them "normal" means with nicotine. I think its distinctly possible that actually the tolerance level is very low.... and that our idea of normaility is distorted. Very small amounts may keep the system ticking over ....

Most people don't even associate these symptoms as symptoms until they regain a normality on a strict diet for several weeks or even months....

Addressing another question.... a lot of toxins are stored and/or expelled through skin. Not only DH but many of us get annoying "boils" .kinda like acne.. i get them after glutening as do a few people here....

I also know people who have had seizures after fasting... who's seizures are gluten controlled.

I think again its possible this is release of these hidden away toxins through fasting.

Sorry I can't be definitive, if I knew the answer I would be rich !!!!

[Guest Doll]

Ah, just joined, you don't ask much do you? (just waxing a little poetic at the moment)

Describe the inexplicable ... now there is a challenge. You ask the hardest questions, I would love to be able to explain it to my GP and GI....

Seriously, good questions .... but I think you might also have given some answers.

Im starting to think that perhaps this is withdrawal and that 'brain fog' and associated stuff is actually exorphin controlled.

One thing I have noticed on my own tests is I can eat gluten and be ill.... but if I constantly top up the gluten the worst comes when I finally snap.

If you compare this with giving up smoking (another thread right now) obviously the health of the average smoker isn't great... but so long as they keep topping up the toxin the withdrawal phase comes every few hours or minutes depending on the level of addiction.

The body is not very good at seperating these signals... hence why people eat to offset it because the body really only has the "put something in me i need something" feeling.

Depression is quite easily explained by damaged endorphin receptors.... but so long as the gluten is attached it at least partly functions.

There are also the "wipe the breadcrumbs off brigade" who also don't suffer withdrawal either?

and then turning the whole thing around, its a bit like smoking again.... the damage is something that happens over years... the 60 a day smoker has no idea what it is to wake up feeling "normal" in the morning because to them "normal" means with nicotine. I think its distinctly possible that actually the tolerance level is very low.... and that our idea of normaility is distorted. Very small amounts may keep the system ticking over ....

Most people don't even associate these symptoms as symptoms until they regain a normality on a strict diet for several weeks or even months....

Addressing another question.... a lot of toxins are stored and/or expelled through skin. Not only DH but many of us get annoying "boils" .kinda like acne.. i get them after glutening as do a few people here....

I also know people who have had seizures after fasting... who's seizures are gluten controlled.

I think again its possible this is release of these hidden away toxins through fasting.

Sorry I can't be definitive, if I knew the answer I would be rich !!!!

I guess I should have mentioned that I get D and projectile vomiting immediately along with the pain, but no brain fog as of yet. My blood sugar also drops almost instantly as if I'm in shock, and my insulin to carb ratio changes from 1:15 to 1:45 for a day or so. This can't be just because I'm not absorbing my food since it happens instantly, so I have yet to figure out the mechanism aside from my body going into "shock".

I really don't think I've ever had withdrawal, so I really am curious. The first day I cut out gluten I felt better. Still weak and tired, but "better".

I had depression with full gluten ingestion just prior to dx, and it actually went away gluten-free, which logically makes sense, but of course this is my personal experience alone.

Don't forget that it takes up to a few days for the full autoimmune response to occur in some Celiacs after gluten exposure, so it would be very hard to determine withdrawal verses prolonged symptoms in those people right away.

I actually have heard of Celiacs getting "boils" after gluten exposure. We don't know though if it's from a directed immune response to the skin/manifestation in those with specific genetics after gluten exposure, or due to the fact that the body is trying to expel a toxic whole protein. I have also heard of Celiacs having seizures with Gluten exposure.

People have to remember that fasting doesn't have any benefit aside from giving you low blood sugar (which can trigger seizures and abnormal brain waves in some)! The liver was designed to rid the body of toxins, a job which it does every second of every day. It is still clearing out waste products due to normal metabolic processes whether you eat or not. It does not need a "break". Only your liver can rid your body of toxins, and at a set rate. In fact, when you fast, your body produces ketones, an incomplete by-product of fat breakdown, which are actually toxic and acidic themselves. Please do not let anyone with a hx of seizures fast!

Hey, I wouldn't ask so many questions if I didn't think people on this board weren't smart enough to answer them

Sorry, I forgot to point out that you meant fasting in terms of completely eliminating gluten, but this can be done by eating foods in their natural state taking care to avoid cross-contamination. I just feel that fasting is unnecessary and even harmful for some. This is one thing I find too "quackery" for me and without scientific basis.

[gfp]

I guess I should have mentioned that I get D and projectile vomiting immediately along with the pain

This sounds like something outside fo the normal IgA,IgG responses (as you obviously realise from your answer below)

, but no brain fog as of yet.

Give it time, its like on of those magic eye pictures once you learn to spot it its actually quite obvious... its often also obvious to a close friend or partner ... however given your early projectile vomiting you are obviously already aware.

Don't think its a bad thing... many of us detest brain fog .... and yet lived with it for years without realising it.

Realising it for the first time is quite an epiphany... concentration problems and mood swings we hadn't realised we had become controllable and we hate loosing that control again, hence the strong hatred of brain-fog but at the same time its rather refreshing to suddenly feel so much better than what you thought was normal.

My blood sugar also drops almost instantly as if I'm in shock, and my insulin to carb ratio changes from 1:15 to 1:45 for a day or so. This can't be just because I'm not absorbing my food since it happens instantly, so I have yet to figure out the mechanism aside from my body going into "shock".

No this is obviously not a direct antibody response.... but it might be an initial immune system response that in you is atypical. Rather like the raising of body temp as the body prepares for the antibodies?

I really don't think I've ever had withdrawal, so I really am curious. The first day I cut out gluten I felt better. Still weak and tired, but "better".

I had depression with full gluten ingestion just prior to dx, and it actually went away gluten-free, which logically makes sense, but of course this is my personal experience alone.

On the former your use of superlatives is perhaps telling? Is this rhetroic? anyway.... "better" ... I think a couple of things influence this not least of which is your level of general illness prior to going gluten-free and the "degree of gluten-free"

bringing me to

Don't forget that it takes up to a few days for the full autoimmune response to occur in some Celiacs after gluten exposure, so it would be very hard to determine withdrawal verses prolonged symptoms in those people right away.

Yes and equally it takes even longer for them to subside afterwards... its obviously a little more complex.

I think most people who try a gluten-free diet do not get it right at first. Hidden gluten and CC are hard enough to seasoned gluten-free'ers not to mention the stubborn people like myself who convinced myself I was ...

I actually have heard of Celiacs getting "boils" after gluten exposure. We don't know though if it's from a directed immune response to the skin/manifestation in those with specific genetics after gluten exposure, or due to the fact that the body is trying to expel a toxic whole protein.

The we sounds possessive your prior context being 1st person.

(I read between lines all the time, you don't know me so don't be freaked out, its not the spanish inquisition!)

Anyway, our three main weapons are surprise... (damn drifting again....I got glutened, it happens)

Sorry back with you.... analysis of the contents would solve the latter... I guess this costs money so it seems unlikely to ever happen... so we are left in the same doubt as why does it cause seizures?

I have also heard of Celiacs having seizures with Gluten exposure.

People have to remember that fasting doesn't have any benefit aside from giving you low blood sugar (which can trigger seizures and abnormal brain waves in some)! The liver was designed to rid the body of toxins, a job which it does every second of every day. It is still clearing out waste products due to normal metabolic processes whether you eat or not. It does not need a "break". Only your liver can rid your body of toxins, and at a set rate. In fact, when you fast, your body produces ketones, an incomplete by-product of fat breakdown, which are actually toxic and acidic themselves. Please do not let anyone with a hx of seizures fast!

Couldn't agree more however it is very easy to be put into a position of fasting instead of eating a suspect food.

When your response is a full or even partial seizure (not me) I can understand why people are scared to take a risk.

Hey, I wouldn't ask so many questions if I didn't think people on this board weren't smart enough to answer them

Yes you just unfortunatly posted very early by board time which is largely American ...in the geographic sense of the word..not to exclude Canadians and latin Americans ... so you might have to wait a while before the majority of people are answering, meanwhile you will have to make do with a not so smart person ... but don't give up hope!

Sorry, I forgot to point out that you meant fasting in terms of completely eliminating gluten, but this can be done by eating foods in their natural state taking care to avoid cross-contamination. I just feel that fasting is unnecessary and even harmful for some. This is one thing I find too "quackery" for me and without scientific basis.

Mostly yes.... but in practice one finds oneself in siutations in life.

It's ridiculously easy to make sure you don't die in an automobile accident if you restrict your life to never leaving the house The problem is I (we) get all kinds of assurances from airline food to working lunches that just fail to transpire.

[BRUMI1968]

I don't want to notch this fascinating post back, but I thought we should mention that sublingual B12 is the best. You chew it slightly and let it dissolve in your mouth. If your gut is leaky and damaged, you might not get much benefit from swallowing your B12. You can get them at any healthfood store or food Co-op. I use Enzymatic Therapy, and they are about 9 bucks for 30 of them.

Another option is to get shots from your healthcare provider. You should notice right away if you feel better. If you do, you've got B12 issues. If you don't, probably not. I got four shots and they never did much; other people feel instantly better (well, within hours). Make sure you ask for one that has folate in it, otherwise, you can't absorb it as well. They may well also have a B complex shot, which would be better still. They aren't that expensive, but it is cheaper to do them yourselve. So if it turns out they help you a lot, you should ask about giving them to yourself. You can even buy the stuff online.

I definitely felt worse after quitting gluten. I had quit wheat two years earlier and was feeling really good. I've been eating ultra healthy for years, so I don't think I had as much to change or as much built up crap food damage to get rid of. But I immediately got back my bloat and constipation that I'd finally gotten rid of quitting wheat, and I became phenomenally tired. It took a good month to get my digestion straightened out, and I quit other things to help it along. Most folks can't do dairy for a while, and soy, corn, and nightshades are other big ones to watch for. I ended up quitting all grains and beans as well, and I think it helped me quite a bit - but we're all different.

Anyway, try the Vit B12 thing, and make sure you're not eating any of the big nasties: dairy, soy, corn, nightshades. Then just be patient. Your body hasn't been absorbing stuff the way it should, and now it will. Pretty soon you'll feel like a million bucks.

[Guest Doll]

You eat airline food?! Gasp! That could kill you even if it IS gluten-free! Hehe...CC is a big issue with me too, but I am working on trying to avoid it. I know it's possible, but I agree the effort required is extraordinary. I personally am holding out for Alba's AT-1001.

I am extremely sensitive, so that in itself has never allowed me to cheat even once, but I am finding it hard to avoid CC simply because I was able to eat anything I wanted for the past 23 years of my life with no problems whatsoever pre-Celiac. I have gotten glutened off of Amy's products and Kinniknnik products, which must be through CC during production as legally they must be gluten-free. I'm just not ready to give up the occasional pre-made pizza yet! Although I wish it would taste better if I am going to have to get sick afterwards

I try to eat as natural (Beans, brown rice, veggies, etc.) as possible, which is healthier anyway. I can't stand most gluten-free products. I do miss cereal the most. Vector, puffed wheat, Granola Crunch, the occasional Lucky Charms....yum!

Anyway, the problem for many Celiacs is that we're so sensitive, and it IS hard to avoid CC without being fanatic about what you put in your mouth. It is the never ending battle, but at least we have a treatment (although not a very easy to effectively implement one).

As for the brain fog issue, I agree that I could very well have it. However, I would never be able to tell, as my other health issues are more prominent and I feel like crap from them already. For example, you know how some people complain about their blood sugars (proper term BG) fluctuating slightly (dropping before lunch, after a large meal etc.)? Try having SEVERE and LARGE swings on a daily basis! Or fluctuating thyroid hormone levels? Believe me, Celiac is just icing on the cake, although I do get severe fatigue when glutened. I always attributed that to the fact that my immune system is busy attacking my body, similar to the fatigue found in MS, or the fact that my BG's tend to be more volatile when glutened.

[CarlaB]

so you might have to wait a while before the majority of people are answering, meanwhile you will have to make do with a not so smart person ... but don't give up hope!

This made me laugh out loud. Don't believe him for a minute ... if I'm glutened, I can hardly read his posts, way too big of words for a glutened mind ...

I get severe brain fog when glutened. I didn't realize I even had brain fog until it was gone, so you can have it and not know it. Now it bothers me much more than when I didn't even know it wasn't "normal." I'm suffering from it in a very bad way today, feel drunk almost.

My question on withdrawal is for how long? I've been off gluten for 8 months, off casein for almost two months, and have felt really bad for the past three months or so, which is why I went off casein (tests showed I was intolerant to it). But I'm still feeling bad. So bad that today I haven't even gotten out of bed! I also avoid soy, and most corn.

All my blood work came out normal -- thyroid, anemia, lipids, cbc, etc. How long does this last? If I didn't have three people (2 children and one husband) who are physically larger than I am, I would be at Starbucks eating a cookie and a drinking a latte!! And no, I haven't ever cheated on my diet, I'm just getting to the point that I'm thinking, why bother, I felt better when I was sick.

[Nancym]

It could be something other than a food intolerance, Carla. I know most autoimmune diseases seem to have an element of fatigue to them. :\

[CarlaB]

It could be something other than a food intolerance, Carla. I know most autoimmune diseases seem to have an element of fatigue to them. :\

What do you mean other than a food intolerance?

[lindalee]

If going gluten-free is supposed to be so good for us, then how come I feel worse in some ways after going gluten-free? Granted, it's only been a few weeks, and I do feel better in some ways...but I'm so tired. I haven't gotten more than 3-5 hours of sleep a night in the last week and a half (wake up several times during the night needing to eat). I feel like my head is detached from my body. My coordination is off, my reaction time is off, etc. I had to quit my new job after only a week because I'm not well enough. I feel like in some ways I feel worse than I did before going gluten-free. I think right now it's just a matter of getting a decent night's sleep, but I'm just still kind of confused...

I know what you mean about the sleep. I have been staying up way too late doing research on this forum and it is hard to think straight sometimes without it. I think I am going to take a hot epson salt bath tonight and take either some melatonin or valarian and try to catch up. The body heals when we sleep so we need it. Hope you get some rest and sleep tonight