Why Are So Many Of Us Still Not Feeling Well?

[CantEvenEatRice]

Hi Everyone,

I am very happy that I found this board and am grateful to be learning so much information! One thing that I am glad to have discovered is that other people are going through what I am going through--that you do not necessarily feel completely well (much much better, of course, but not completely healed) after being on the gluten free diet for years. Now I am sure that most will agree that the diet does dramatically improve your life. I will never forget how sick I felt prior to finally being diagnosed with Celiac at age 25. I went years and years and from doctor to doctor trying to figure out my bowel issues and mind-boggling fatigue. However, I am curious if there is more to Celiac? I am curious about any research being done to explain other ailments and diseases that Celiacs often have. Now I went undiagnosed for 25 years so I know a lot of my problems (hypothyroid, osteoporosis, chronic fatigue...) are a result of eating gluten for so long. However, I initially felt much better and had much more energy once gluten free. Now I am starting to react to all sorts of foods and have fatigue issues again. I know that I am not being glutened and I have eliminated problem foods, but I am still curious as to why I am having problems 3 years after beginning the diet? I just feel that there has to be more to Celiac. Any thoughts or research links?

Thanks!

-Noelle

[rinne]

I have been wondering too.

I am clear that whether Celiac or gluten intolerant a gluten free diet has greatly improved my life, as has cutting out dairy but it seems to me that in some ways I am getting worse. My digestion has improved but I have back pain that day by day seems to be getting worse.

I have had health problems for nearly twenty years and although each problem seemed isolated from the other problems I am now seeing them as a distinct pattern.

I am wondering if you have health problems that are outside of the range of problems generally encountered by Celiacs?

[Vladimir Gluten]

Hi Everyone,

I am very happy that I found this board and am grateful to be learning so much information! One thing that I am glad to have discovered is that other people are going through what I am going through--that you do not necessarily feel completely well (much much better, of course, but not completely healed) after being on the gluten free diet for years. Now I am sure that most will agree that the diet does dramatically improve your life. I will never forget how sick I felt prior to finally being diagnosed with Celiac at age 25. I went years and years and from doctor to doctor trying to figure out my bowel issues and mind-boggling fatigue. However, I am curious if there is more to Celiac? I am curious about any research being done to explain other ailments and diseases that Celiacs often have. Now I went undiagnosed for 25 years so I know a lot of my problems (hypothyroid, osteoporosis, chronic fatigue...) are a result of eating gluten for so long. However, I initially felt much better and had much more energy once gluten free. Now I am starting to react to all sorts of foods and have fatigue issues again. I know that I am not being glutened and I have eliminated problem foods, but I am still curious as to why I am having problems 3 years after beginning the diet? I just feel that there has to be more to Celiac. Any thoughts or research links?

Thanks!

-Noelle

Perhaps exercise is the answer? You did not mention this.

[eKatherine]

Consider other intolerances. When my symptoms came back I gave up dairy, and they went right away.

[CantEvenEatRice]

Thanks for the replies. I do exercise (pilates and walking) and I am trying to determine if there are more food intolerances I have not figured out yet. I just feel that I should be feeling much better at this point being on the gluten free diet. I used to think also that my health problems were not all related to Celiac, but now I am curious. I live a pretty active life and eat healthy, but I have a lot of fatigue and muscle aches. I am just curious as to how others are feeling, especially those who were not diagnosed until years and years after their symptoms began? I know that a lot of Celiacs endured years of symptoms before getting a diagnosis. Maybe some damage is not reversible, even though I read it is.

Thanks!

[CarlaB]

I'm having this problem, too. I felt good for the first several months. I kept thinking that I was getting glutened, then realized it was always after I had eaten dairy. My tests had shown dairy was a problem, but since I was feeling so good, I saw no reason to give it up, too. I stopped dairy about two months ago, and have yet to feel good. I know I have had a virus in this time, and I have been glutened, but I'm pretty consistantly ill. I'm so fatigued that I don't plan more than one thing per day, and I spend the rest of the day resting.

I am avoiding all major allergens -- corn, nuts, and soy (legumes) in addition to the gluten and dairy. I was working out, cardio and weights. I had to give up cardio about a month ago, and this will be my third week not lifting weights. I just don't have the energy. All my blood work came out fine -- thyroid, iron, lipids, etc.

If I don't feel better by the end of the week, I'm going to look into making an appt. with an MD who is a naturopath. I want a doc who is into health, I'm tired of illness!

[oceangirl]

I'm having this problem, too. I felt good for the first several months. I kept thinking that I was getting glutened, then realized it was always after I had eaten dairy. My tests had shown dairy was a problem, but since I was feeling so good, I saw no reason to give it up, too. I stopped dairy about two months ago, and have yet to feel good. I know I have had a virus in this time, and I have been glutened, but I'm pretty consistantly ill. I'm so fatigued that I don't plan more than one thing per day, and I spend the rest of the day resting.

I am avoiding all major allergens -- corn, nuts, and soy (legumes) in addition to the gluten and dairy. I was working out, cardio and weights. I had to give up cardio about a month ago, and this will be my third week not lifting weights. I just don't have the energy. All my blood work came out fine -- thyroid, iron, lipids, etc.

If I don't feel better by the end of the week, I'm going to look into making an appt. with an MD who is a naturopath. I want a doc who is into health, I'm tired of illness!

I am not that far in- 5 monthsish, but I am currently going downhill as well and feeling pretty depressed about it. I like Carla's idea of seeing a naturopath and along those lines I have made a commitment to myself to see my acupuncturist regularly for a bit to see if maybe we can work some of it out together. I, too, had a bad virus, had two rounds of antibiotics in the last 3 weeks, but other than that feel pretty certain I'm not glutening myself. My kids just made the commitment to go gluten-free in our house- a MAJOR gift from them. They go back and forth regularly between their Dad's house and ours so they can munch up on gluten there. Maybe that will help with cc, I don't know. It feels more frustrating and disappointing because it was so exciting to feel the BIG changes in the beginning. One foot in front of the other again, I suppose... Be well

lisa

[jenvan]

Contamination, other intolerances, other diseases/illnesses, TIME (needing more of it), having been diagnosed after many years of Celiac--having a great deal of damage to heal from, vitamin deficiencies, immune system compromised, diet--as in poor, depression... Just a few ideas to your question...

[mn farm gal]

I am new to the celiac thing myself. Just five weeks. Last week I had my first visit with a naturalpathic doctor. I have always believe in them more than doctor anyway. But this visit was even different than what I have ever experience before. I sat in a chair with a rope or cord around each wrist and each ankel and a head band this then went into her computor. I gave a read out of thing that I was really low in which the list was very long. Some example were Iron, lots of minerals, enzymes. I can't remember them all by name there were several and she suggested that I take a liquid iron, (my iron was low down to a 6 at the family doctor) and a liquid that has 415 minerals, enzymes, fruits, veggies, and more. So now I take these two things each day and see her in a month to see how well i am doing. She had told me she could tell me to take like 6-8 differnt things or more but thinks I would see more improvement with just these two things. I have several symptoms and conditions still to take care of. If indoudt just make 1 appointment if you don't like it or don't think that it is for you don't make anymore appts. Just my suggestion.

[Guest Doll]

Are you on the right Synthroid dosage? Are your thyroid levels in the normal range? Some people also need to add T3 (Cytomel) to their Synthroid to feel their best. Armour is another option. It's a thyroid compound made from pig glands, so it naturally has the full range of T4, T3, T2....etc.

The body naturally converts T4 to T3 though. Some people are a little sluggish at this step and would benefit from Cytomel. Have your doctor test not just your TSH, but your free and total T4 AND T3 levels.

The only drawbacks for Amour are that the dosage is less likely to be standardized, that some people have a harder time utilizing pig thyroid as opposed to synthesized human thyroid hormone, and also make more antibodies against it.

I have to admit that I have never felt quite "right" since developing Hashimoto's. My thyroid levels never seem to stay stable or in a normal range, and fatigue is a huge issue. I am also quite sensitive to being out of range. It feels like death cometh!!!

As people mentioned, food intolerances are another possibility. You see, again the major problem for us Celiacs is the "leaky gut". It's the leaky gut that allows whole gluten proteins in, thus triggering an autoimmune reaction and systemic immune response. That same leaky gut has not be corrected, you just stopped eating one of the offending proteins your body is unnaturally letting in (gluten).

That said, it is very likely you are letting in additional foreign proteins, dietary triggers, etc. All of these can let to other autoimmune diseases and ill health.

The bad news is, all you can do for now is figure out if you can pinpoint any other intolerances. If your intestinal gaps are exceptionally large, for example, as seen in those with multiple autoimmune diseases or intolerances, at some point your body may let in EVERYTHING. It's not that these foods are bad for you or you are really "intolerant" per se, but rather that everyone's body would react violently to whole foreign proteins in the same way. There are many people on this board with multiple intolerances.

As for some of your issues being from Celiac, possibly, but I doubt 25 years worth. Don't worry, most people DO have a full recovery, although it does take much longer as an adult, up to 2 or more years gluten-free. Most people aren't born with it. You need to have the genetic disposition, and then a virus, bacteria, pregnancy, etc. is the initial trigger, and now your body permanently has gaps large enough to allow whole gluten to pass through, thus triggering the autoimmune reaction.

Alba Therapeutics is working on a Zonulin inhibitor, which will close these large "gaps" in our intestines. Not only will it help Celiacs, but it will help those with other autoimmune diseases and prevent them too.

To prove my point about additional foreign proteins being let in, you have (presumably) autoimmune thyroid disease. Your body is still letting in the trigger/s for that, thus your thyroid is constantly under attack. Gluten may play a role in regulating the gaps to some extent, but it is not the whole story. It does not correct the underlying "leaky gut".

Many people tend to still develop additional autoimmune diseases and intolerances years AFTER being gluten-free, so that proves my point. Another example would be in Type 1 diabetes. We do not know the offending secondary trigger/s (presumably a virus is primary). It has recently been shown that islet cells CAN regenerate at least to some extent, IF the autoimmunity is removed. Meaning, the body is constantly trying to repair itself, despite the continued autoimmune attack. Now, if gluten was the offending trigger for the autoimmunity, people with Type 1 would begin to regenerate multiple islet cells once going gluten-free. That is not the case. Now I know there are memory T-cells and such, but there should still be SOME evidence. Going gluten-free does help stabilize blood sugar levels by helping with nutrient absorption, but not cell regeneration. Plus, not everyone with Type 1 (85-90%) lets in gluten and/or reacts to it (are Celiacs) even though they have a leaky gut. As far as we know, you couldn't have prevented your thyroid destruction, at least in most cases.

Make sure you are following the gluten-free diet 100%, no cross-contamination, check any OTC meds you may take, cut out eating out for now. Sometimes as time goes on, we get kind of "lazy" about CC. Well, at least I have in the past, and it's only been 14 months for me. And I get extremely sick from CC!

Go to your doctor for a full physical to rule out any vitamin/mineral deficiencies, other autoimmunities developing, abnormal blood counts, thyroid and adrenal levels, etc.

Try to start an elimination diet (I have never done this but there are many on this board who could help with support) to figure out any additional intolerances.

Take it easy on your body. Try to stay hydrated in this summer heat, work in some moderate exercise if possible, and take a multivitamin. People with autoimmune diseases tend to have systemic inflammation, so taking Omega 3-6-9 EFA's and Folic Acid is a good idea alongside your vitamin. I do it. A diet rich in salmon and olive oil is also great! Try to stick to as natural and unprocessed a diet as possible, beans, brown rice, lentils, fruit, etc. Lastly, if you need rest, allow yourself to take it, and not feel guilty.

You'll have to do some detective work (and your doctor will too), but more than likely there is a solution.

PS. Try to avoid a Dx of "Chronic Fatigue Syndrome". It is very real suffering for people who have it, but it in and of itself is a SYMPTOM and not the reason for WHY the person feels so ill. In many cases, a cause can be pinpointed, although you need a good Dr. who is willing to look for it.

[CantEvenEatRice]

Are you on the right Synthroid dosage? Are your thyroid levels in the normal range? Some people also need to add T3 (Cytomel) to their Synthroid to feel their best. Armour is another option. It's a thyroid compound made from pig glands, so it naturally has the full range of T4, T3, T2....etc.

The body naturally converts T4 to T3 though. Some people are a little sluggish at this step and would benefit from Cytomel. Have your doctor test not just your TSH, but your free and total T4 AND T3 levels.

The only drawbacks for Amour are that the dosage is less likely to be standardized, that some people have a harder time utilizing pig thyroid as opposed to synthesized human thyroid hormone, and also make more antibodies against it.

I have to admit that I have never felt quite "right" since developing Hashimoto's. My thyroid levels never seem to stay stable or in a normal range, and fatigue is a huge issue. I am also quite sensitive to being out of range. It feels like death cometh!!!

As people mentioned, food intolerances are another possibility. You see, again the major problem for us Celiacs is the "leaky gut". It's the leaky gut that allows whole gluten proteins in, thus triggering an autoimmune reaction and systemic immune response. That same leaky gut has not be corrected, you just stopped eating one of the offending proteins your body is unnaturally letting in (gluten).

That said, it is very likely you are letting in additional foreign proteins, dietary triggers, etc. All of these can let to other autoimmune diseases and ill health.

The bad news is, all you can do for now is figure out if you can pinpoint any other intolerances. If your intestinal gaps are exceptionally large, for example, as seen in those with multiple autoimmune diseases or intolerances, at some point your body may let in EVERYTHING. It's not that these foods are bad for you or you are really "intolerant" per se, but rather that everyone's body would react violently to whole foreign proteins in the same way. There are many people on this board with multiple intolerances.

As for some of your issues being from Celiac, possibly, but I doubt 25 years worth. Don't worry, most people DO have a full recovery, although it does take much longer as an adult, up to 2 or more years gluten-free. Most people aren't born with it. You need to have the genetic disposition, and then a virus, bacteria, pregnancy, etc. is the initial trigger, and now your body permanently has gaps large enough to allow whole gluten to pass through, thus triggering the autoimmune reaction.

Alba Therapeutics is working on a Zonulin inhibitor, which will close these large "gaps" in our intestines. Not only will it help Celiacs, but it will help those with other autoimmune diseases and prevent them too.

To prove my point about additional foreign proteins being let in, you have (presumably) autoimmune thyroid disease. Your body is still letting in the trigger/s for that, thus your thyroid is constantly under attack. Gluten may play a role in regulating the gaps to some extent, but it is not the whole story. It does not correct the underlying "leaky gut".

Many people tend to still develop additional autoimmune diseases and intolerances years AFTER being gluten-free, so that proves my point. Another example would be in Type 1 diabetes. We do not know the offending secondary trigger/s (presumably a virus is primary). It has recently been shown that islet cells CAN regenerate at least to some extent, IF the autoimmunity is removed. Meaning, the body is constantly trying to repair itself, despite the continued autoimmune attack. Now, if gluten was the offending trigger for the autoimmunity, people with Type 1 would begin to regenerate multiple islet cells once going gluten-free. That is not the case. Now I know there are memory T-cells and such, but there should still be SOME evidence. Going gluten-free does help stabilize blood sugar levels by helping with nutrient absorption, but not cell regeneration. Plus, not everyone with Type 1 (85-90%) lets in gluten and/or reacts to it (are Celiacs) even though they have a leaky gut. As far as we know, you couldn't have prevented your thyroid destruction, at least in most cases.

Make sure you are following the gluten-free diet 100%, no cross-contamination, check any OTC meds you may take, cut out eating out for now. Sometimes as time goes on, we get kind of "lazy" about CC. Well, at least I have in the past, and it's only been 14 months for me. And I get extremely sick from CC!

Go to your doctor for a full physical to rule out any vitamin/mineral deficiencies, other autoimmunities developing, abnormal blood counts, thyroid and adrenal levels, etc.

Try to start an elimination diet (I have never done this but there are many on this board who could help with support) to figure out any additional intolerances.

Take it easy on your body. Try to stay hydrated in this summer heat, work in some moderate exercise if possible, and take a multivitamin. People with autoimmune diseases tend to have systemic inflammation, so taking Omega 3-6-9 EFA's and Folic Acid is a good idea alongside your vitamin. I do it. A diet rich in salmon and olive oil is also great! Try to stick to as natural and unprocessed a diet as possible, beans, brown rice, lentils, fruit, etc. Lastly, if you need rest, allow yourself to take it, and not feel guilty.

You'll have to do some detective work (and your doctor will too), but more than likely there is a solution.

PS. Try to avoid a Dx of "Chronic Fatigue Syndrome". It is very real suffering for people who have it, but it in and of itself is a SYMPTOM and not the reason for WHY the person feels so ill. In many cases, a cause can be pinpointed, although you need a good Dr. who is willing to look for it.

Thanks Doll for all of the info! I agree that Hashimoto's is a big part of my problem. I was diagnosed with that at age 13 and have always had trouble keeping my numbers stable. I believe the Celiac symptoms started right at the same time, but everyone kept concentrating on the Hypothroidism so the Celiac was missed for years. I have begun to read more about leaky gut and am interested in learning more. Thanks again for all of the info!

[bknutson]

do any of you sometimes feel like this is like the big lymes desiese scare? My husband and I were both diagnosed with it. Because we were sick. And now I have celiac. I still dont feel good. Some times I just think it is a bunch of bull. Do any of you ever ever feel like maybe it is just a bunch of bull. I live in a little town in the bushes and i cant get into the little groups and all the appointments. I cant buy all the special foods. I cant sleep I can eat like I should. I am tired, I dont feel good. And yet sometimes I test it to see and I dont get sick and other times I do. whats up with that? I am dumb and cant keep up with it all anyway cause I have a bad memory so I might as will just be me and let it all go. I am so onery I dont know why my poor husband stays.

Well thanks for listening.

Barb

[Guest Doll]

Thanks Doll for all of the info! I agree that Hashimoto's is a big part of my problem. I was diagnosed with that at age 13 and have always had trouble keeping my numbers stable. I believe the Celiac symptoms started right at the same time, but everyone kept concentrating on the Hypothroidism so the Celiac was missed for years. I have begun to read more about leaky gut and am interested in learning more. Thanks again for all of the info!

No problem! Ah...nothing more fun than Hashimoto's! It's an Endo's and patient's worst nightmare!

Just to note, make sure your doctor also adjusts your meds according to your symptoms and not JUST your blood work. Just because it it in the "normal" range, doesn't mean it's normal for YOU. It's very hard to figure out what YOUR average levels would have been pre-Hashi's.

Keep us posted!

do any of you sometimes feel like this is like the big lymes desiese scare? My husband and I were both diagnosed with it. Because we were sick. And now I have celiac. I still dont feel good. Some times I just think it is a bunch of bull. Do any of you ever ever feel like maybe it is just a bunch of bull. I live in a little town in the bushes and i cant get into the little groups and all the appointments. I cant buy all the special foods. I cant sleep I can eat like I should. I am tired, I dont feel good. And yet sometimes I test it to see and I dont get sick and other times I do. whats up with that? I am dumb and cant keep up with it all anyway cause I have a bad memory so I might as will just be me and let it all go. I am so onery I dont know why my poor husband stays.

Well thanks for listening.

Barb

Hi Barb. You sound like you could use a hug, or at least some support So, I'm sending hugs your way!

So now you have Celiac? And Lyme Disease triggered it?? Hmmm...that's actually something to look into!

Trying to go gluten-free is worth it, because you will feel SO much better. In fact, if you want to be healthy again, you will NEED to. But it will take awhile, and don't forget you are getting over Lyme Disease as well.

You don't need to buy expensive (and often unhealthy) things like gluten-free bread or cookies. Beans, cream of rice cereal, lentils, fish, fruit, rice, veggies, and meats are naturally gluten-free. If you have a garden, you can even grow some of your own food for little money.

You're not dumb, you came to this website to get help, didn't you!? You are sick, tired, and probably have what people describe here as "brain fog". Once you stick 100% to a gluten-free diet, you will improve. But you need to start as soon as possible, and cut all gluten out 100% or you will NOT feel better.

There is a poster here that has a gluten-free starter kit (Nini I think).

Take it one day at a time and post often with your questions so we can help.

[Spice Goddess]

No problem! Ah...nothing more fun than Hashimoto's! It's an Endo's and patient's worst nightmare!

Just to note, make sure your doctor also adjusts your meds according to your symptoms and not JUST your blood work. Just because it it in the "normal" range, doesn't mean it's normal for YOU. It's very hard to figure out what YOUR average levels would have been pre-Hashi's.

Keep us posted!

Hi Barb. You sound like you could use a hug, or at least some support So, I'm sending hugs your way!

So now you have Celiac? And Lyme Disease triggered it?? Hmmm...that's actually something to look into!

Trying to go gluten-free is worth it, because you will feel SO much better. In fact, if you want to be healthy again, you will NEED to. But it will take awhile, and don't forget you are getting over Lyme Disease as well.

You don't need to buy expensive (and often unhealthy) things like gluten-free bread or cookies. Beans, cream of rice cereal, lentils, fish, fruit, rice, veggies, and meats are naturally gluten-free. If you have a garden, you can even grow some of your own food for little money.

You're not dumb, you came to this website to get help, didn't you!? You are sick, tired, and probably have what people describe here as "brain fog". Once you stick 100% to a gluten-free diet, you will improve. But you need to start as soon as possible, and cut all gluten out 100% or you will NOT feel better.

There is a poster here that has a gluten-free starter kit (Nini I think).

Take it one day at a time and post often with your questions so we can help.

Here's something to think about...my husband diagnosed @51 with celiac was losing weight and missing work. The doctor who diagnosed him said he needed to avoid dairy & coffee too among other foods.

I was a menopausal mess and my doctor suggested it was the 2 squares of chocolate and nightly gimlet I should give up. So I did no NO improvement. Then I got turned on to "Eat Right 4 Your Type" WOW! Most of what my husband can't eat is Avoid for type o and so I changed our food to help him get well. Meanwhile I am a type a and was making myself really sick eating for his type. Now preparing for both is hell but our haelth is returning. I strongly recommend you read the book, even better "Live right 4 your type" by Dr. DaDamo. Good luck!

[Guest Doll]

Here's something to think about...my husband diagnosed @51 with celiac was losing weight and missing work. The doctor who diagnosed him said he needed to avoid dairy & coffee too among other foods.

I was a menopausal mess and my doctor suggested it was the 2 squares of chocolate and nightly gimlet I should give up. So I did no NO improvement. Then I got turned on to "Eat Right 4 Your Type" WOW! Most of what my husband can't eat is Avoid for type o and so I changed our food to help him get well. Meanwhile I am a type a and was making myself really sick eating for his type. Now preparing for both is hell but our haelth is returning. I strongly recommend you read the book, even better "Live right 4 your type" by Dr. DaDamo. Good luck!

Thanks. I actually did get one of his books for Christmas from my fiance's parents. I do agree *somewhat* with what he says. For example, I have always known I need to follow a diet high in carbs (gasp!) low to moderate protein, and low to moderate (good) fats. I am a blood Type A, and my "prescribed" diet is one I knew I already function best on. If I eat a lot of meat, I GAIN weight and have no energy. Meat also causes my blood sugars to rise much more than the average person's, and slowly, causing problems with insulin dose matching.

BUT...a lot of his "science" was plain quackery. I also didn't like the fact that he blurred Type 1 diabetes (autoimmune insulin deficiency) with Type 2 (Excess insulin caused by insulin resistance). Same name, two different diseases. Type 1's metabolize carbs just fine if given the proper corresponding insulin amount. I also didn't like that he recommned I cut out foods that I seem to function BEST on, and foods that are very healthy for most people in general.

Not scientific enough for me, but I am an open minded person, though, and if the diet works for you, that is great! At least it will get people to try to include a variety of foods, and it can't hurt.

Maybe I will go back and review the book anyhow....

[daffadilly]

Re "eat right for your blood type", I love that book and it was right on for me, well except for the no gluten that was not mentioned, but hey, I take a little knowledge here & a little there & come up with something that works for me.

To those not feeling good yet, please factor in how sick you were to start off with & how old you are.

I am 60 & it was right at the 2 year mark that I felt Better than Ever.

Then the second thing is to look at what you are eating. You have to add in nutritious foods, items that most of us did not eat on a regular basis pre gluten-free, like kale

some of us do not tolerate any grains or a small amount only. I can only do a few corn tortillas & rice. I just cannot eat grains, they will make me sick everytime. I do know that I have been "allergic" to barley & oats since I was 25 (& a huge list of other foods). But, I have not had allergy testing done lately, so I am not sure if it is an allergy or if all that grain is cross contaminated, or if it has been exposed to mold, or insecticides etc. Look up the specific carbohydrate diet (SCD) it works for a lot of people.

50% of us cannot tolerate ANY dairy, I am one of those. Then the other common offenders are soy, corn & eggs. (for me potatoes)

Exercise if at all possible, it helps build up your immune system

TAKE A B12 everyday. no matter any levels - just take one & in three weeks see if you feel better.

(& if you happen to be at the doctor's office get a B12 shot)

think about buying some organic foods or knowing where your foods are grown etc. There was an article in the paper a while back, I have not checked this, I am just repeating what was in the paper, nor have I googled it - yet, " USDA: Rice Supply contaminated with unapproved variety, But agency chief says grain poses no threat to health or to environment" " ...supplies of long grain rice had become inadvertently contaminated with a genetically engineered variety not approved for human consumption."... The main gist of the article was the government was afraid that this would hurt their rice exports, there was no concern for the American citizen eating it. (most other countries have sticter laws about their food supply than the U.S, & yes I remember when it was the other way around!!!) I also remember when they did the same thing with altered corn.

As a note, I always rinse my rice before cooking, if you have ever seen a warehouse or rice storage silos etc. they have rodents & bugs... Not to mention dust and dirt in every crevice.

I was one of the rare kids that were "born with it" My family still talks about how I screamed from the time I was born until I was about two, they called it colic. My second child, a boy was also born with it & somehow I knew to give him rice cereal. I would sit up with him all night most nights & carry him out in the fresh night air so he could breathe better. It is a wonder I did not kill both of us, baking my own bread & pies & with a fan in the kitchen blowing all that flour everywhere. When I would watch him eat a soda cracker & the big D would be running down his leg before he finished it, I went to the health food store & got him rice crackers. That was a very radical thing to do 36 years ago. My doctor laughed at me & said no way could that have caused him to have D, that he probably just had a virus, right

oops, I drifted, sorrrrry, it is the DQ1's I know you all are going to be feeling better soon.

oh & to the person that is cheating & does not know if it is worth it or not, everytime you eat some gluten & especially you were not healed to start off with, you just start over at square one. It is a decision that we all have to make. If I get hit by a mac truck tomorrow, I know that I did my everything I could to make tonight a wonderful evening for myself, & I would not change a thing.

[Cindy Chabot]

I have been gluten free for just over a year now and still don't feel that great. I have recently read two different books dealing with the digestive system and the damage that can be done to it. The books describe how these problems also affect other organs such as the liver. Breaking the Vicious Cycle by Elaine Gottschall deals with celiac disease. The books describes the specific carbohydrate diet which was once used for celiac disease. The diet is even more restrictive than just gluten-free. I started the diet yesterday. The other book is called Eating Alive by Dr. JOnn Matsen ND. This book details the entire digestive system and how you can heal it.

[rinne]

do any of you sometimes feel like this is like the big lymes desiese scare? My husband and I were both diagnosed with it. Because we were sick. And now I have celiac. I still dont feel good. Some times I just think it is a bunch of bull. Do any of you ever ever feel like maybe it is just a bunch of bull. I live in a little town in the bushes and i cant get into the little groups and all the appointments. I cant buy all the special foods. I cant sleep I can eat like I should. I am tired, I dont feel good. And yet sometimes I test it to see and I dont get sick and other times I do. whats up with that? I am dumb and cant keep up with it all anyway cause I have a bad memory so I might as will just be me and let it all go. I am so ornery I dont know why my poor husband stays.

Well thanks for listening.

Barb

Hi Barb, sorry to hear what a struggle things are right now. I completely related to your "ornery" comment, my sweetie has put up with my bad temper too. I can tell you that gluten free I am a different woman, that my constant irritability and sudden rages have diminished 90%. Actually make that gluten and dairy free because I think dairy has something to do with my moods too.

In my forties when I knew wheat was a problem and I generally avoided it every so often I would have toast or cake or something and if I hadn't eaten any in a while I could eat it once and get away with it but if I ate it two days in a row or if I ate too much I would get very constipated and I would feel so irritable it made me feel insane.

I am looking at Lyme disease these days, I have many other symptoms that are not improving with just a gluten and dairy free diet. Apparently dark thoughts are very common with Lyme, do you know what I mean? Like: What's the use? Nothing makes a difference, why should I care? And so on endlessly. I think it is important to understand that both Celiac and Lyme can make you feel angry, depressed and brain fogged.

It is encouraging to hear from those of you who have seen improvement over time. I am committed to a gluten free diet and hope to see further improvements over time, I have only been gluten free 4 months and dairy free 3 months. However, I have begun to feel that it is dangerous for me to be convinced that the diagnosis of Celiac or gluten intolerance covers all my problems.

[Guest nini]

I'm 3 1/2 years into this and I'm still struggling with Fibromyalgia symptoms... the trigger points are still so tender and the fatigue some days is unbearable. Getting excercise helps but it's hard to get started when you feel so tired and sore. I suspect I have other intolerances too but at this point I'm unwilling to give up dairy and soy! (stubborn Taurus trait I know)... anyway, I am a lot healthier than I've been in a really really long time.