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woolwhippet

Wrong Self Diagnosis?

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Last week I swore I as gluten intolerant because after feeling terrible for months I went gluten light and felt great. However, my biggest symptom (loose, bulky, greasy stools alternating with watery ones 2 to 5 times per day) only improved in that the watery ones stopped. BUT I knew I was getting some gluten in trace amouts so I thought that was the cause.

Fast forward to today. I have been eating gluten in larger amouts than ever because I have my doctors apt and bloodwork tomorrow. But instead of feeling much worse, I only felt bad for the first two days, now I feel pretty normal. Stools have not changed but a little more crampy.

I am finding my food diary really hard to interpret. Could gluten still be the cause? Do I still push for the celiac blood panel? OR MAYBE i AM CRAZY!

Thanks for your patience! I swear I am not the hypochondriac type but I am starting to feel that way.

Lenore


~Ill for 5 years with progressive symptoms: anxiety, brain fog, joint pain, "D", and the noisiest stomach you've ever heard, and a lovely itchy rash on my buttocks, scalp, and sometimes thighs. ~ Family history of Celiac disease (Uncle, cousins, grandmother) ~ Blood work showed some antibodies but not enough to be dx celiac ~ Dq7 & Dq4. ~ I can't call myself Celiac but I know gluten is bad for my body.

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Going gluten light really isn't going to tell you anything. You need to be *completely* gluten free for the dietary challenge to be a valid test, and you need to give it some serious time - around a month or so - to come to solid conclusions on it. :/


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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There are several of us, like me, that can eat large quantities of gluten without any immediate symptoms. However, if I get just a crumb then I'm sick. It kind of seems like my system just goes on overload when I've eaten large quantities of gluten and it shuts down. When I did my gluten challenge I didn't get sick for over a month of eating gluten heavily daily. However, now that I'm 100% gluten free again, if I get so much as a trace of gluten I'm sick.

I don't know if this relates to your experience or not, especially since you're not diagnosed Celiac. I just wanted to share my experience with varying amounts of gluten.


~Angie~

Gluten free since May 2004

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I am finding my food diary really hard to interpret. Could gluten still be the cause? Do I still push for the celiac blood panel? OR MAYBE i AM CRAZY!

You have my deepest sympathies with the food diary thing.

I can't make head or tale of mine either. I'm sitting here this very evening plotting the quantities of every food group I've eaten into an excel graph and comparing them to my various symptoms. Can I see patterns? Yes hundreds, and very pretty they are too. Beyond that....

All I can say is it's worth recording so that in future you can reference back to any good/bad spates you have and one day they may make more sense and even be useful once you know a bit more about where you're headed with all your other tests etc.

Having read through this forum, I think its safe to assume that even with a positive coeliac diagnosis, there are likely to be other food intolerances too. I'm hoping that will be where my food diary finally helps to point the way for me.

All the best, and yes, push for every test you can.

Kris

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Guest cassidy

I think it is way to early to draw the conclusion that gluten isn't a problem. If you are going to the doctor's tomorrow and you get the blood test then, you can go gluten-free after that. Just remember that the blood test isn't 100% accurate and many people who can't have gluten do not test positive via blood test or endoscopy.

I went gluten-free the same day I took my blood test. It came back negative but I was feeling so much better that I didn't care what the test said.

The first month of gluten-free for me was up and down. I had good days and bad and I couldn't figure much out with the food diary either. I now know that it takes me 3 weeks after being glutened to feel 100%. I get progressively better but don't feel wonderful. It took me a few months to find the rest of my food intolerances because I had to get the gluten free part of the diet down. Also, I had a stool test and I had an amoeba, bad bacteria and almost no good bacteria. I had to take antibiotics for that before I felt great.

So, who knows why you are doing ok with eating tons of gluten. If you go completely gluten-free for a month and don't feel a bit better and your blood test is negative, then it might seem like you can tolerate gluten. Other than that, try to take things slow and appreciate the good days. You will have more and more of them.

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You have my deepest sympathies with the food diary thing.

I can't make head or tale of mine either. I'm sitting here this very evening plotting the quantities of every food group I've eaten into an excel graph and comparing them to my various symptoms. Can I see patterns? Yes hundreds, and very pretty they are too. Beyond that....

Excel spreadsheets! I love it!

Lenore


~Ill for 5 years with progressive symptoms: anxiety, brain fog, joint pain, "D", and the noisiest stomach you've ever heard, and a lovely itchy rash on my buttocks, scalp, and sometimes thighs. ~ Family history of Celiac disease (Uncle, cousins, grandmother) ~ Blood work showed some antibodies but not enough to be dx celiac ~ Dq7 & Dq4. ~ I can't call myself Celiac but I know gluten is bad for my body.

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Thanks all. As usual, excellent advice. I can't wait to have that needle in my arm tommorow!


~Ill for 5 years with progressive symptoms: anxiety, brain fog, joint pain, "D", and the noisiest stomach you've ever heard, and a lovely itchy rash on my buttocks, scalp, and sometimes thighs. ~ Family history of Celiac disease (Uncle, cousins, grandmother) ~ Blood work showed some antibodies but not enough to be dx celiac ~ Dq7 & Dq4. ~ I can't call myself Celiac but I know gluten is bad for my body.

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I think it is way to early to draw the conclusion that gluten isn't a problem. If you are going to the doctor's tomorrow and you get the blood test then, you can go gluten-free after that. Just remember that the blood test isn't 100% accurate and many people who can't have gluten do not test positive via blood test or endoscopy.

I went gluten-free the same day I took my blood test. It came back negative but I was feeling so much better that I didn't care what the test said.

The first month of gluten-free for me was up and down. I had good days and bad and I couldn't figure much out with the food diary either. I now know that it takes me 3 weeks after being glutened to feel 100%. I get progressively better but don't feel wonderful. It took me a few months to find the rest of my food intolerances because I had to get the gluten free part of the diet down. Also, I had a stool test and I had an amoeba, bad bacteria and almost no good bacteria. I had to take antibiotics for that before I felt great.

So, who knows why you are doing ok with eating tons of gluten. If you go completely gluten-free for a month and don't feel a bit better and your blood test is negative, then it might seem like you can tolerate gluten. Other than that, try to take things slow and appreciate the good days. You will have more and more of them.

Hello there ..hope you dont mind me posting to you...

Youve mentioned bad bacteria following a stool test which has promoted me to ask you:

I followed an antifungal programme for candida before I found out about celiac which I waiting to be tested for via biopsy I am assuming that if I have celiac then this may be why I cant get rid of the candida as I went on the strict diet for 7 months and I still react very badly to sugar and yeast!!!

How did you find out what antibiotics to go on? Did your doctor prescribe them? Was it your doc that did the stools test?

Sorry about all the questions Ive been ill with this for 14 months and I ve lost all confindence in the NHS as they never tested me for this at the begining and I have tried the diet and felt much better apart from not being able to eat sugar yeast..and as you know celiac diet is very restricting and I cant cut out sugar, yeast, go gluten-free, no soy, dairy, nuts...etc..he he what a blimming nightmare..

The worse of it is that Ive just started a new job at the hospital and now they think its celiac Ive been put back on eating it and have been too ill to work...I feel so guilty but if its the hospital telling me to be ill then not alot I can do about it..

Hope your okay and doing well on your diet ..

Take Care

Mand

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Guest cassidy
Hello there ..hope you dont mind me posting to you...

Youve mentioned bad bacteria following a stool test which has promoted me to ask you:

I followed an antifungal programme for candida before I found out about celiac which I waiting to be tested for via biopsy I am assuming that if I have celiac then this may be why I cant get rid of the candida as I went on the strict diet for 7 months and I still react very badly to sugar and yeast!!!

How did you find out what antibiotics to go on? Did your doctor prescribe them? Was it your doc that did the stools test?

Sorry about all the questions Ive been ill with this for 14 months and I ve lost all confindence in the NHS as they never tested me for this at the begining and I have tried the diet and felt much better apart from not being able to eat sugar yeast..and as you know celiac diet is very restricting and I cant cut out sugar, yeast, go gluten-free, no soy, dairy, nuts...etc..he he what a blimming nightmare..

The worse of it is that Ive just started a new job at the hospital and now they think its celiac Ive been put back on eating it and have been too ill to work...I feel so guilty but if its the hospital telling me to be ill then not alot I can do about it..

Hope your okay and doing well on your diet ..

Take Care

Mand

I went to a holistic doctor who is an MD. She did a 3 day stool test and it came back with the bad bacteria, amoeba, almost no good bacteria and candida overgrowth. She gave me antibiotics for the bad bacteria and amoeba. Those were really hard to take. I don't think I have ever felt so bad in all my life. Then, she gave me nystatin for the candida. My mom started taking Threelac for candida around the same time (she has celiac and was using my results to self-diagnose). She did much better on the threelac so I started taking that with the nystatin and within a month my candida seemed to be gone. That was all last summer and I feel great. I tried the candida diet and dropped so much weight that I was very underweight and couldn't do it anymore. I really think it was the threelac that helped. I also went on strong probiotics for a month and now I drink kefir everyday to get the good bacteria back. My insurance paid for most of the stool test (it was $400 but well worth it).

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Hi, I am new here, but have been reading these post for the last 2 days with MUCH enthuasiam. I came across celiac while researching an autoimmune paper for school. As I started reading the symptoms and related info, I was amazed. I had an endoscope for stomach ulcers and I was supposed to be checked for celiac, but the doctor "forgot", so the test was not done. I did not know too much about it, and my stomach ulcers were almost healed, I did not pursue it.

My main issue however, is not digestive for the most part, but mobility. I have had various stages of joint pain for the past 16 years. Sometimes so bad I can not move. The last year is has been horrible. I have been on NSAID for the last 15 years with no sucess, PT, exercising, etc. No help. Now I am on narcotics to relieve the pain and be able to function. I have had a grocery list of diagnosis, yet none were ever really on the mark. I have been told I have everything from arthritis, luxating patella, torn cruciates, fibromyalia, mechanical low back pain, lyme disease, hypothyrodism, chronic bursitis, chronic tendanitis, etc. All the tests were always normal. I have had every arthritis, autoimmune test related to chronic joint pain all come out negative. I am constantly congested, and have been told I have allergies and chronic rhinitis/sinusitis. I have aniexty and depression, who wouldn't. I basically have explained to my doctor that I wake up every morning feeling like I have been run over by a truck. Yesterday I woke up with a headaches, horrific backache, and so stiff and sore, it was just about impossible to move. Even my fingers and hands were stiff and hard to move on the keyboard. My skin is so sensitive, that the slightest touch can be painful. I have been living this way for the last year. The chronic joint pain, mostly hips, knees, and ankles has been for the last 16 years.

And though I do not suffer from constipation or diarrhea, I have severe GERD and heartburn and live on zantac. My doctor just keeps me on stomach drugs, pain meds and says it's fibromylia. I think she gets annoyed, but I am only 36 yr and should be healthy!! Esp since all the lab tests, Xrays, and even stomach endoscope are normal! So what is it. I used to be a vibrant, healthy, active, fun 18 year old. Yes, I am now, 36, but that doesn't mean you are condemned to a life of undx'd pain. If I had a dx, it wouldn't be as bad.

And then there are my kids. connor 6yr boy with speech problems, eating problems, will not eat any fruits or vegs. Has not been able to "poop" without discomfort since he was 16 mo. old. He either has diarrhea,or is constipated. The MD's and specalist just put him on laxative after laxative. No help. He was supposed to be tested for celiac when he was 2 yrs, but I dont remember if he was or wasnt. He constantly leaks stool into his underwear and I feel so bad for him. It is esp bad in the summer and he wants to go swimming or be outside. He gets horrific stomach cramps.

my daughter, alyssa, 4 this summer, has BAD gas, and has for the last 8 months if not longer. She passes extremely LG stools that it hurts to go and she does not want to.

When I read this site, I immediately decided to go 100% gluten free for me and my kids. My husband is on board and is willing to help. I went out and bought and new food and are switiching us over. I dont have any problem being tested but I dont want to put my kids through that. I also went to a holistic dr and nutritionist a couple of weeks ago. I let him do all the stool tests, and he also did a urine test and saliva tests. They are all testing my intestinal tract, my way of processing foods and producing energy. I get the results back this Friday. All I know is I have not have any gluten for 24 hours and for the first time in months are actually pain free. ?????????? I dont think it can be the lack of gluten so quickly, but I am willing to try anything.

Sorry for the length, but I am trying to squish 16 yrs of pain, drs, meds, and exhaustion into a couple of mins.

ANY ideas, anyone else with similiar joint and muscular pain? I am also on a lot of meds both presc. and herbal. I want to stop the codeine and not have to take any pain meds. I would also love a good nights sleep without meds and without waking up stiff and unable to move the next morning.

Thanks for listening!!!!! I look forward to replies!

Take care! Barb

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YIKES!!

Sorry you've had to go through all this.

Yes, it can be the gluten that quickly. The las time I willingly had gluten I spent the next morning throwing up. Once I was done with that, even though I had painful diarrhea and stomach cramps I actually felt better than I had for 2 years.

Welcome to the board!


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Hi, I am new here, but have been reading these post for the last 2 days with MUCH enthuasiam. I came across celiac while researching an autoimmune paper for school. As I started reading the symptoms and related info, I was amazed. I had an endoscope for stomach ulcers and I was supposed to be checked for celiac, but the doctor "forgot", so the test was not done. I did not know too much about it, and my stomach ulcers were almost healed, I did not pursue it.

My main issue however, is not digestive for the most part, but mobility. I have had various stages of joint pain for the past 16 years. Sometimes so bad I can not move. The last year is has been horrible. I have been on NSAID for the last 15 years with no sucess, PT, exercising, etc. No help. Now I am on narcotics to relieve the pain and be able to function. I have had a grocery list of diagnosis, yet none were ever really on the mark. I have been told I have everything from arthritis, luxating patella, torn cruciates, fibromyalia, mechanical low back pain, lyme disease, hypothyrodism, chronic bursitis, chronic tendanitis, etc. All the tests were always normal. I have had every arthritis, autoimmune test related to chronic joint pain all come out negative. I am constantly congested, and have been told I have allergies and chronic rhinitis/sinusitis. I have aniexty and depression, who wouldn't. I basically have explained to my doctor that I wake up every morning feeling like I have been run over by a truck. Yesterday I woke up with a headaches, horrific backache, and so stiff and sore, it was just about impossible to move. Even my fingers and hands were stiff and hard to move on the keyboard. My skin is so sensitive, that the slightest touch can be painful. I have been living this way for the last year. The chronic joint pain, mostly hips, knees, and ankles has been for the last 16 years.

And though I do not suffer from constipation or diarrhea, I have severe GERD and heartburn and live on zantac. My doctor just keeps me on stomach drugs, pain meds and says it's fibromylia. I think she gets annoyed, but I am only 36 yr and should be healthy!! Esp since all the lab tests, Xrays, and even stomach endoscope are normal! So what is it. I used to be a vibrant, healthy, active, fun 18 year old. Yes, I am now, 36, but that doesn't mean you are condemned to a life of undx'd pain. If I had a dx, it wouldn't be as bad.

And then there are my kids. connor 6yr boy with speech problems, eating problems, will not eat any fruits or vegs. Has not been able to "poop" without discomfort since he was 16 mo. old. He either has diarrhea,or is constipated. The MD's and specalist just put him on laxative after laxative. No help. He was supposed to be tested for celiac when he was 2 yrs, but I dont remember if he was or wasnt. He constantly leaks stool into his underwear and I feel so bad for him. It is esp bad in the summer and he wants to go swimming or be outside. He gets horrific stomach cramps.

my daughter, alyssa, 4 this summer, has BAD gas, and has for the last 8 months if not longer. She passes extremely LG stools that it hurts to go and she does not want to.

When I read this site, I immediately decided to go 100% gluten free for me and my kids. My husband is on board and is willing to help. I went out and bought and new food and are switiching us over. I dont have any problem being tested but I dont want to put my kids through that. I also went to a holistic dr and nutritionist a couple of weeks ago. I let him do all the stool tests, and he also did a urine test and saliva tests. They are all testing my intestinal tract, my way of processing foods and producing energy. I get the results back this Friday. All I know is I have not have any gluten for 24 hours and for the first time in months are actually pain free. ?????????? I dont think it can be the lack of gluten so quickly, but I am willing to try anything.

Sorry for the length, but I am trying to squish 16 yrs of pain, drs, meds, and exhaustion into a couple of mins.

ANY ideas, anyone else with similiar joint and muscular pain? I am also on a lot of meds both presc. and herbal. I want to stop the codeine and not have to take any pain meds. I would also love a good nights sleep without meds and without waking up stiff and unable to move the next morning.

Thanks for listening!!!!! I look forward to replies!

Take care! Barb

Actually, it can be gluten that quickly. It took me about two hours of no gluten for my major symptoms to lessen. I used to snack constantly because I wasn't absorbing any nutrients so I was always hungry. I'm sure it was the constant barrage of crackers, sandwiches, pop tarts, etc. that made me so ill.


~Angie~

Gluten free since May 2004

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Actually, it can be gluten that quickly. It took me about two hours of no gluten for my major symptoms to lessen. I used to snack constantly because I wasn't absorbing any nutrients so I was always hungry. I'm sure it was the constant barrage of crackers, sandwiches, pop tarts, etc. that made me so ill.

Thanks for the quick replies!! All I can say as I sadily watch my favorite foods be put aside for gluten free pastas, and crackers, is how MUCH better I feel tonight. I have not even had to down my usual cocktail of tyenlol and codeine every 3 hours. And that is terrific!! I really look forward to see how my kids do. I have to admit, that my daughter is less gassy tonight and that is certainly a blessing. Barb

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Hi, I am new here, but have been reading these post for the last 2 days with MUCH enthuasiam. I came across celiac while researching an autoimmune paper for school. As I started reading the symptoms and related info, I was amazed. I had an endoscope for stomach ulcers and I was supposed to be checked for celiac, but the doctor "forgot", so the test was not done. I did not know too much about it, and my stomach ulcers were almost healed, I did not pursue it.

My main issue however, is not digestive for the most part, but mobility. I have had various stages of joint pain for the past 16 years. Sometimes so bad I can not move. The last year is has been horrible. I have been on NSAID for the last 15 years with no sucess, PT, exercising, etc. No help. Now I am on narcotics to relieve the pain and be able to function. I have had a grocery list of diagnosis, yet none were ever really on the mark. I have been told I have everything from arthritis, luxating patella, torn cruciates, fibromyalia, mechanical low back pain, lyme disease, hypothyrodism, chronic bursitis, chronic tendanitis, etc. All the tests were always normal. I have had every arthritis, autoimmune test related to chronic joint pain all come out negative. I am constantly congested, and have been told I have allergies and chronic rhinitis/sinusitis. I have aniexty and depression, who wouldn't. I basically have explained to my doctor that I wake up every morning feeling like I have been run over by a truck. Yesterday I woke up with a headaches, horrific backache, and so stiff and sore, it was just about impossible to move. Even my fingers and hands were stiff and hard to move on the keyboard. My skin is so sensitive, that the slightest touch can be painful. I have been living this way for the last year. The chronic joint pain, mostly hips, knees, and ankles has been for the last 16 years.

And though I do not suffer from constipation or diarrhea, I have severe GERD and heartburn and live on zantac. My doctor just keeps me on stomach drugs, pain meds and says it's fibromylia. I think she gets annoyed, but I am only 36 yr and should be healthy!! Esp since all the lab tests, Xrays, and even stomach endoscope are normal! So what is it. I used to be a vibrant, healthy, active, fun 18 year old. Yes, I am now, 36, but that doesn't mean you are condemned to a life of undx'd pain. If I had a dx, it wouldn't be as bad.

And then there are my kids. connor 6yr boy with speech problems, eating problems, will not eat any fruits or vegs. Has not been able to "poop" without discomfort since he was 16 mo. old. He either has diarrhea,or is constipated. The MD's and specalist just put him on laxative after laxative. No help. He was supposed to be tested for celiac when he was 2 yrs, but I dont remember if he was or wasnt. He constantly leaks stool into his underwear and I feel so bad for him. It is esp bad in the summer and he wants to go swimming or be outside. He gets horrific stomach cramps.

my daughter, alyssa, 4 this summer, has BAD gas, and has for the last 8 months if not longer. She passes extremely LG stools that it hurts to go and she does not want to.

When I read this site, I immediately decided to go 100% gluten free for me and my kids. My husband is on board and is willing to help. I went out and bought and new food and are switiching us over. I dont have any problem being tested but I dont want to put my kids through that. I also went to a holistic dr and nutritionist a couple of weeks ago. I let him do all the stool tests, and he also did a urine test and saliva tests. They are all testing my intestinal tract, my way of processing foods and producing energy. I get the results back this Friday. All I know is I have not have any gluten for 24 hours and for the first time in months are actually pain free. ?????????? I dont think it can be the lack of gluten so quickly, but I am willing to try anything.

Sorry for the length, but I am trying to squish 16 yrs of pain, drs, meds, and exhaustion into a couple of mins.

ANY ideas, anyone else with similiar joint and muscular pain? I am also on a lot of meds both presc. and herbal. I want to stop the codeine and not have to take any pain meds. I would also love a good nights sleep without meds and without waking up stiff and unable to move the next morning.

Thanks for listening!!!!! I look forward to replies!

Take care! Barb

Hi! I'm so glad you found this site. It improved my life quickly and don't feel bad about the long post. I think many of us start out that way. :). I'm glad you're starting to feel better. Keep it up.

I'm writing back not just for the general support though. After years of being an active kid, my celiac symptoms got really bad and I woke up every day in pain (24 year old at the time) and my joints would creak and pop and snap constantly. Now, after an extremely careful diet, I'm much better. But, when I get gluten in my diet (even a trace amount), my joints start cracking within a day.

One thing that took me much to long to do was to buy all new cutlery and dish-washing supplies and silverware and plates - and keep them completely gluten free. Completely segregating my food (and anything that touched my food) from gluten made a HUGE difference in my lingering symptoms especially my joints. So, if your tests are positive, or even if they aren't and you feel that gluten free is helping you - be aware that there are different degrees of going gluten-free. It might all seem a bit extreme at first, but its good to be aware of.

Best wishes!

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- be aware that there are different degrees of going gluten-free. It might all seem a bit extreme at first, but its good to be aware of.

Best wishes!

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- be aware that there are different degrees of going gluten-free. It might all seem a bit extreme at first, but its good to be aware of.

Best wishes!

HI, thanks for the reply. I am curious on what extremes you have to go through with the gluten-free diet. I plan on being careful and really trying to stick with it because just since Sunday night I feel SO MUCH better and without drugs. I am actually not tired or lethargic and didnt need any caffenine pills or tea or coffee to get going. And that is amazing. I cleaned my barn (5 stalls) and lifted water buckets this morning and didnt bother me a bit. I am simply amazed. However, I can eat things that may not taste great, but get the job done (as far as getting rid of hunger;) ) I am Italian/Irish and my family and me love to eat. I did get gluten free bread crumbs so I can still cook. Part of me thinks that this is good for me, because I lead a hectic, processed, canned life. And it would probably be better for me to cook healthier meals for my 2 kids than pouring them processed stuff out of a can. I can easily make a chicken soup. But the convience factor is going to take a bit to get used to. And yes, I can attest to wakeing up with joints and limbs that were literatly frozen in place. I would feel like I was 80 instead of 35-36.

It is my kids I am concerned for. I plan on doing the stool tests with them, but not blood or enscope. Too invasive. Plus, I dont want to be mis lead with false results. At least a stool test cant lie, whats in your body or not in your body, eventually comes out in stool. Plus it shows parasites, fats, bacteria, loss or overgrowth of other important nutrients we need or dont need. I know my kids will only follow the diet to a degree, and my 5 yr son already is a terrible eater. Will not eat any fruit or veg, so I cant use that to substittue.

My question? Do some people find that cutting the majority of gltuen out of their diets helps, say those that are not too badly affected? Or is it an all or none deal. Defenity things where wheat, or wheat gluten is the prime ingred, we will not eat, but what about the meals where it is found in trace amounts, such as in soy sauce. My favority black beans and rice has a trace of soy and malt. I wonder how bad that would be if I ate it. I suppose I could find out, but as I said to my husband, I really want to give the next 2 weeks a real test. Because if I continue to only go uphill, it has to be the celiac as I have had every other test under the sun done. Includeing a MRI on my head and everything has been negative. I am only 20# give or take overweight, so its not like I am very obese and moving would be hard because of physical condition. I am active and always do something. I'd just really like to enjoy this summer as the last 2-3 years were miserable ones!!

Thanks for listening. I know I babble on..............

If you are truly Celiac, which is very possible even with negative blood and biopsies, even trace amounts of gluten are unacceptable. Just because you don't feel any effects, doesn't mean that it isn't harming your intestines. It's very important, if Celiac, to maintain a 100% gluten free diet. Cheating here and there or allowing trace amounts into your diet knowingly can lead to many other health problems down the road including cancer and osteoperosis. Be kind to your body and go 100% gluten free. It's obvious that it's affecting you negatively when you eat it. It really isn't worth the risk to cheat with a little bit of malt. Find a substitute for the foods you'll miss, even if you have to make it from scratch. You'll be much healthier in the long run.


~Angie~

Gluten free since May 2004

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It is my kids I am concerned for. I plan on doing the stool tests with them, but not blood or enscope. Too invasive. Plus, I dont want to be mis lead with false results. At least a stool test cant lie, whats in your body or not in your body, eventually comes out in stool. Plus it shows parasites, fats, bacteria, loss or overgrowth of other important nutrients we need or dont need. I know my kids will only follow the diet to a degree, and my 5 yr son already is a terrible eater. Will not eat any fruit or veg, so I cant use that to substittue.

I haven't gone gluten free yet but I thought I would throw you some advice for getting your kids to eat better. I have a 5 and a 6 year old. To get them to eat healthy I talk to them about how eating the right foods helps us to stay healthy and strong. They are also taking gymnastics and getting into soccer so we explain to them if they want to be able to do well in gymnastics and soccer they need to eat right. We also will not keep any junk food in the house so if they are hungry they are going to eat something that is healthy. A kid will not let themselves starve. That is what the pediatrician said to us if they are hungry they will eat, you just have to make sure the foods they have to choose from are healthy. Since we consistently talk about how important healthy food choices are with our kids they make healthy choices at other people's houses too. It is amazing and it makes me so happy to know they will be healthy because they are now starting to make these decisions on their own. Which is something I did not have growing up, which I think makes things a lot harder for me. I think it is a lot easier for kids because they have not lived 20+ years eating wrong. My kids do get the occasional treat now and then, but sometimes they prefer to pick a healthy treat over the junk. It is important to offer choices so they feel like they have some control over what they are eating. I hope that helps.

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I haven't gone gluten free yet but I thought I would throw you some advice for getting your kids to eat better. I have a 5 and a 6 year old. To get them to eat healthy I talk to them about how eating the right foods helps us to stay healthy and strong. They are also taking gymnastics and getting into soccer so we explain to them if they want to be able to do well in gymnastics and soccer they need to eat right. We also will not keep any junk food in the house so if they are hungry they are going to eat something that is healthy. A kid will not let themselves starve. That is what the pediatrician said to us if they are hungry they will eat, you just have to make sure the foods they have to choose from are healthy. Since we consistently talk about how important healthy food choices are with our kids they make healthy choices at other people's houses too. It is amazing and it makes me so happy to know they will be healthy because they are now starting to make these decisions on their own. Which is something I did not have growing up, which I think makes things a lot harder for me. I think it is a lot easier for kids because they have not lived 20+ years eating wrong. My kids do get the occasional treat now and then, but sometimes they prefer to pick a healthy treat over the junk. It is important to offer choices so they feel like they have some control over what they are eating. I hope that helps.

My daughter is not too bad as she will eat meats, some veggies and fruits. She is willing to eat a good diet. I dont give my kids lots of candy or sweets, but they do get their chips and cookies. I give in moderatation, but I am sure if I didnt have them available he would eat something else. the problem with my son is he has a sensory disorder, so certain foods make him gag or he thinks he wont like them so he wont eat them. And this makes it difficult to introduce new foods. He eats some main staple things, but to get him to eat rice pasta, no way. We just got him to eat Campbells batman soup. Before that he ate no pasta. I work on him alot, but it turns into a battle and everyone gets frustrated. I have even tried strawberries with chocoate dip or caramel, and sugar with fruits. Nope. He is a real pain..... But at least they are not candy cravers and they rarely eat chocalate or real sugar candy. Our downfall is the lack of forage in the diet (fiber). I agree that offering the choices is key and I do that now. It this or that, take a pick. I dont like being a short order cook. Barb

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There are several of us, like me, that can eat large quantities of gluten without any immediate symptoms. However, if I get just a crumb then I'm sick. It kind of seems like my system just goes on overload when I've eaten large quantities of gluten and it shuts down. When I did my gluten challenge I didn't get sick for over a month of eating gluten heavily daily. However, now that I'm 100% gluten free again, if I get so much as a trace of gluten I'm sick.

I don't know if this relates to your experience or not, especially since you're not diagnosed Celiac. I just wanted to share my experience with varying amounts of gluten.

Guhlia -

I'm just reading through some past posts and had a question for you based on your comments. I have some posts out there about my problems. In short...I used to have awful problems, now they're less severe but still present. For example, while I've only had D once this week, last night i was so bloated I looked 4 months pregnant and gained 4 or 5 pounds in one day! This morning the bloating was almost gone and I had lost 4 pounds overnight. I'm just questioning myself, knowing that sometimes I eat gluten and get sick, sometimes I don't. FYI...I was diagnosed a year ago with "severe" IBS. Just thought you might have some advice since it looks like before you went gluten free you didn't get sick every single time you ate gluten. Is that right? I think that's one reason this disease is so hard to diagnose in some people! : )

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