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Berger

I Do Not Know What To Do

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(My darn Return button and quotation button do not work on my keyboard, so please bear with me.) I was a vegetarian for almost 20 years. I thought that the reason my stomach was getting so upset was that I was getting animal proteins or something of the sort in my food. But it was bad. I would go to restaurants, sandwich shops, any place I would go eat and by the time I finished eating, about 20 minutes to an hour later I am in the bathroom getting rid of everything. I could see pieces of undigested food in my stool. I went to see my doctor a couple times and he said it was no big deal. How having diarrhea after every meal is not a big deal is beyond my comprehension, but I am not a doctor, so I took his word for it. Well, finally they finally saw something in a test and they say it is borderline on whether it is a gluten intolerance or not. So he said gluten products might bother you a little, but it is no big deal, it will not kill you. Well, I quit eating products with gluten in them and went back to eating meat (tough decision) and I started to feel better. The diarrhea stopped happening after every meal, I was feeling better all around. But we went out one night for Dim Sum and I ate a couple things that I am pretty sure were not gluten-free. This was on a Sunday. I still felt alright, a little off, but who knows why. Well, starting on Tuesday I started having diarrhea real bad. Wednesday I woke up throwing up and having diarrhea. It continued throughout the week. It was to the point I was not eating and just drinking sports drinks to stay hydrated, yet I was expelling them in pure liquid out my butt. (Sorry to be gross or crude in my language.) It was coming out the same color as the Gatorade I had drank within the past half hour. I know because I switched flavors to be sure. I went to see a doctor, he said it was no big deal. I have not peed in 4 days now since all fluids are coming straight out of my ass. Thursday and Friday I probably had to use the restroom 15-20 times each day because of this. I went to see the doctor Friday and got the same BS runaround. He said it could be IBS. I went to a baseball game on Friday and stayed 6 innings, used the bathroom 4 times, plus once before I left and as soon as I got home. (It is a 15 minute walk to the ballpark). I have tried Immodium AD and it has been no help at all. I went to the ER for the lack of peeing (afraid my kidneys are not working) but the doctor said he could not do anything except treat the dehydration with fluids. Did not eat too much Friday and was alright yesterday until I ate dinner last night. Since then I have had constant diarrhea. OK, here is my question. Could this be from a gluten-intolerance and not having gluten for awhile then eating it again. (I just found out right now my question mark button does not work, either.) Or are these symptoms of something else. I have done some research on IBS and studies have said it should not effect your sleep. I do not sleep anymore. I pooped the bed twice this week from the diarrhea (pretty proud of that. Makes my wife real happy, too... :(:ph34r: ) and wake up pretty much every hour to use the bathroom. I do not know what to do or so I am asking for some guidance here. Thanks, and have a great day.

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Wow, I'm sorry that you're having such troubles.

My first question is how long had you been off gluten before this happened? Some people do have D when first going gluten-free until the body purges itself of gluten. So it might not be from contaminated food. Also, if your eating meat again is recent, I'd say stop eating that and see how you feel. It may be that your body is rejecting it after being off it so long.

In short there are many variables here, so if you can give some time frames it will help us to help you.

I hope you get the answers you need soon! It sounds mighty rough, but you've come to the right place.

Welcome to the board!


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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(My darn Return button and quotation button do not work on my keyboard, so please bear with me.) I was a vegetarian for almost 20 years. I thought that the reason my stomach was getting so upset was that I was getting animal proteins or something of the sort in my food. But it was bad. I would go to restaurants, sandwich shops, any place I would go eat and by the time I finished eating, about 20 minutes to an hour later I am in the bathroom getting rid of everything. I could see pieces of undigested food in my stool. I went to see my doctor a couple times and he said it was no big deal. How having diarrhea after every meal is not a big deal is beyond my comprehension, but I am not a doctor, so I took his word for it. Well, finally they finally saw something in a test and they say it is borderline on whether it is a gluten intolerance or not. So he said gluten products might bother you a little, but it is no big deal, it will not kill you. Well, I quit eating products with gluten in them and went back to eating meat (tough decision) and I started to feel better. The diarrhea stopped happening after every meal, I was feeling better all around. But we went out one night for Dim Sum and I ate a couple things that I am pretty sure were not gluten-free. This was on a Sunday. I still felt alright, a little off, but who knows why. Well, starting on Tuesday I started having diarrhea real bad. Wednesday I woke up throwing up and having diarrhea. It continued throughout the week. It was to the point I was not eating and just drinking sports drinks to stay hydrated, yet I was expelling them in pure liquid out my butt. (Sorry to be gross or crude in my language.) It was coming out the same color as the Gatorade I had drank within the past half hour. I know because I switched flavors to be sure. I went to see a doctor, he said it was no big deal. I have not peed in 4 days now since all fluids are coming straight out of my ass. Thursday and Friday I probably had to use the restroom 15-20 times each day because of this. I went to see the doctor Friday and got the same BS runaround. He said it could be IBS. I went to a baseball game on Friday and stayed 6 innings, used the bathroom 4 times, plus once before I left and as soon as I got home. (It is a 15 minute walk to the ballpark). I have tried Immodium AD and it has been no help at all. I went to the ER for the lack of peeing (afraid my kidneys are not working) but the doctor said he could not do anything except treat the dehydration with fluids. Did not eat too much Friday and was alright yesterday until I ate dinner last night. Since then I have had constant diarrhea. OK, here is my question. Could this be from a gluten-intolerance and not having gluten for awhile then eating it again. (I just found out right now my question mark button does not work, either.) Or are these symptoms of something else. I have done some research on IBS and studies have said it should not effect your sleep. I do not sleep anymore. I pooped the bed twice this week from the diarrhea (pretty proud of that. Makes my wife real happy, too... :(:ph34r: ) and wake up pretty much every hour to use the bathroom. I do not know what to do or so I am asking for some guidance here. Thanks, and have a great day.

Hope you start feeling better. Your post reminded me of when I first heard that a glutenfree diet is similar to the "caveman diet" - meat. My husband lives on animal products as he cannot digest fruits and vegetables (gets the same thing you do: pieces of it in his stool and maldigestion all day and night). he misses fruits and vegetables. He won't even eat rice because it constipates him too much. it's a delicate science for him. he's been gluten free for 4.5 years now.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Hope you start feeling better. Your post reminded me of when I first heard that a glutenfree diet is similar to the "caveman diet" - meat. My husband lives on animal products as he cannot digest fruits and vegetables (gets the same thing you do: pieces of it in his stool and maldigestion all day and night). he misses fruits and vegetables. He won't even eat rice because it constipates him too much. it's a delicate science for him. he's been gluten free for 4.5 years now.

It's interesting how different we all can be. I don't know what I'd do if I couldn't eat veggies. Meat makes me feel awful, so I stopped eating it, and I don't miss it either. I guess the lesson here is to listen to what our bodies tell us, and that can be tricky.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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The fact that you're not peeing concerns me...it means that you are not absorbing any of the liquids that you are drinking and are probably severely dehydrated. You need to go to a doctor (who isn't insane), possibly even the ER, ASAP.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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Wow, I'm sorry that you're having such troubles.

My first question is how long had you been off gluten before this happened? Some people do have D when first going gluten-free until the body purges itself of gluten. So it might not be from contaminated food. Also, if your eating meat again is recent, I'd say stop eating that and see how you feel. It may be that your body is rejecting it after being off it so long.

In short there are many variables here, so if you can give some time frames it will help us to help you.

I hope you get the answers you need soon! It sounds mighty rough, but you've come to the right place.

Welcome to the board!

It probably had been about a month or so. But being a strict vegetarian, it was easier to make the switch to no gluten, I think. But then my meal options were so limited I had to go back to meat. When I started to eat meat again, I had no adverse reactions. But I certainly knew if I messed up and ate some gluten products. I ate a Jordan almond on a gluten-free cupcake my wife made me for my son(s) birthday (my apostrophe key does not work) thinking I would be totally safe and got the D. Could not figure out why. Looked at the ingredients, wheat in the shell of the almond. I do not know what made me try the flour stuff at Dim Sum, but I think I might be paying for it now (or else I have the flu, but it is along time to have D with the flu.)

The fact that you're not peeing concerns me...You need to go to a doctor (who isn't insane), possibly even the ER, ASAP.
It concerns me, too. I am going to wait and get some lab results tomorrow instead of going to the ER today. The liquid is going straight through me, except coming out the wrong place.

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I guess my only additional thought is that you may be one of those super-sensitive individuals. Many, if not all of us, seem to have an increased sensitivity to gluten after going gluten-free. Symptoms are therefore worse than they were before gluten-free.

Still, it doesn't seem like such continued purging is good. I always like to think that the body knows best, so maybe there's still some gluten in the system. Or perhaps the immune system hasn't caught on that there's no longer a threat. But how to remedy this I do not know. I heard sugar reduces immune function for a few hours, so I wonder...


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Kind of interesting little tidbit. When I went to the doctor on Friday, he said I did not look like someone who had celiac disease or a gluten intolerance because, I kid you not, (this is a direct quote) Most people with celiac or gluten intolerance are rail thin and have little sores quite often. Is that true or is he just a quack.

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It sounds like you just did a gluten challenge, with the dim sum most likely. Reactions can be as severe as yours but usually would not continue so long without reglutenings. Has anyone done a stool sample on you? If not demand one Monday morning. You need to be checked in case you have some sort offood poisoning like salmonella. In which case you will need an antibiotic. Also when you went to the ER did you tell them that you are seeing undigested food in your stool? This could be a sign that the glutening or something else has wacked your pancreas and it is not producing digestive enzymes at the level you need. The fact that you have not urinated in 4 days is very concerning. Are you sure you are not perhaps urinating when the D hits? If you are in a lot of pain you might not notice. Not urinating for 4 days means your body is not cleansing your fluids the way it should, you need to get immediate medical attention for that. It could be very serious if not resolved. Go back to the ER for another rehydration and furthur attention if the first one has not allowed you to pee yet.

What are you drinking or taking for the D? Do make certain that everything that goes into or on you right now is gluten-free. Check all your meds, OTC and script and supplements. Keep us posted on how you are doing and I hope you feel better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Kind of interesting little tidbit. When I went to the doctor on Friday, he said I did not look like someone who had celiac disease or a gluten intolerance because, I kid you not, (this is a direct quote) Most people with celiac or gluten intolerance are rail thin and have little sores quite often. Is that true or is he just a quack.

Your doctor has a lot to learn about celiac. You have found a great place for links to research and such to educate after your immediate health concerns are dealt with.

By the way welcome to the board, you have found one of the best resources there is for support and education.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Kind of interesting little tidbit. When I went to the doctor on Friday, he said I did not look like someone who had celiac disease or a gluten intolerance because, I kid you not, (this is a direct quote) Most people with celiac or gluten intolerance are rail thin and have little sores quite often. Is that true or is he just a quack.

*quack*

Just another ignorant Dr.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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There has been no reglutening since I can not eat anything. I had some hot and sour soup yesterday made from scratch and there was no gluten in it. Thinking maybe the spice made the empty stomach upset. I have been living on Immodium AD and Gatorade for pretty much since Friday. I have to take a stool sample in tomorrow. Labs were closed over the weekend. I did pee once today (first time in awhile) and that was after drinking 4 32 oz. containers of Gatorade in less than an hour time. Peed maybe about a cup and it was stinky yellow. Since my doctors are not giving me any real answers or solutions, should I request to see a gastrologist or a dietician or what (question mark. Darn broken keyboard...) I do not know if it is the gluten that has messed my stomach up and is messing with other things or what, but I am really concerned with everything and not getting the best info from my doctors. One thing I have been thinking about is when they did the blood tests and said it was borderline, the 1st doctor said nothing about a biopsy. The 2nd one mentioned it, but he did not want to, wanted to try some other things first. Like waiting... I get my blood work back tomorrow, hopefully. We will see what that says, I guess. By the way, thank you all for your ideas and help.

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There has been no reglutening since I can not eat anything. I had some hot and sour soup yesterday made from scratch and there was no gluten in it. Thinking maybe the spice made the empty stomach upset. I have been living on Immodium AD and Gatorade for pretty much since Friday. I have to take a stool sample in tomorrow. Labs were closed over the weekend. I did pee once today (first time in awhile) and that was after drinking 4 32 oz. containers of Gatorade in less than an hour time. Peed maybe about a cup and it was stinky yellow. Since my doctors are not giving me any real answers or solutions, should I request to see a gastrologist or a dietician or what (question mark. Darn broken keyboard...) I do not know if it is the gluten that has messed my stomach up and is messing with other things or what, but I am really concerned with everything and not getting the best info from my doctors. One thing I have been thinking about is when they did the blood tests and said it was borderline, the 1st doctor said nothing about a biopsy. The 2nd one mentioned it, but he did not want to, wanted to try some other things first. Like waiting... I get my blood work back tomorrow, hopefully. We will see what that says, I guess. By the way, thank you all for your ideas and help.

Sorry you're having a rough time.

RiceGuy and Ravenwood have good suggestions. I would suggest eating soothing, non-spicy easy to digest foods with few ingredients. If the hot&sour soup had soy sauce in it, that might be a problem: most soy sauces sold in the US have gluten/wheat in them.

Try applesauce, jello, Progresso Chicken/Wild Rice soup (it's gluten-free), Bananas. Poached Pears. Baked Sweet Potato. Try mashed potatoes without butter. Baked potatoes. Plain white rice. I'd go easy on the meat and easy on raw veggies for a while.

Good luck and let us know how you're doing.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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most soy sauces sold in the US have gluten/wheat in them.

That I found out the hard way awhile back. Kikoman is everywhere, and it is no good. The brand I bought is gluten free, want to say La Choy. Being a veg for years is a plus because it taught me to read labels. Just have to learn the hidden products of the gluten world. (New paragraph....) I was going through my blood work and trying to decipher. I ran across Gliading Igg and IGa test. I remember seeing something about that with celiac disease. Can anyone give me an idea what these numbers mean in reference to celiac disease, if anything. What other tests and results should I look for. GLIADIN IGG, EIA <3 <11- u/mL GLIADIN IGA, EIA 24 <11- u/mL

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While I can't help with your blood test results, one other thing came to mind: Have you been using the same cookware and utensils as before gluten-free? Only smooth surfaces like stainless steel can be properly cleaned. If you have any of those non-stick pans, I don't suggest using them, as even the smallest scratches can harbor gluten (it's incredibly sticky). Also, do check detergents, soaps, skin/hair care products, toothpaste, etc. Throw out your old sponges too. If ever you want to use a toaster or toaster oven for gluten-free food, buy a new one. If you have a wooden cutting board, throw it out. Same goes for wooden utensils.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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(My darn Return button and quotation button do not work on my keyboard, so please bear with me.) I was a vegetarian for almost 20 years. I thought that the reason my stomach was getting so upset was that I was getting animal proteins or something of the sort in my food. But it was bad. I would go to restaurants, sandwich shops, any place I would go eat and by the time I finished eating, about 20 minutes to an hour later I am in the bathroom getting rid of everything. I could see pieces of undigested food in my stool. I went to see my doctor a couple times and he said it was no big deal. How having diarrhea after every meal is not a big deal is beyond my comprehension, but I am not a doctor, so I took his word for it. Well, finally they finally saw something in a test and they say it is borderline on whether it is a gluten intolerance or not. So he said gluten products might bother you a little, but it is no big deal, it will not kill you. Well, I quit eating products with gluten in them and went back to eating meat (tough decision) and I started to feel better. The diarrhea stopped happening after every meal, I was feeling better all around. But we went out one night for Dim Sum and I ate a couple things that I am pretty sure were not gluten-free. This was on a Sunday. I still felt alright, a little off, but who knows why. Well, starting on Tuesday I started having diarrhea real bad. Wednesday I woke up throwing up and having diarrhea. It continued throughout the week. It was to the point I was not eating and just drinking sports drinks to stay hydrated, yet I was expelling them in pure liquid out my butt. (Sorry to be gross or crude in my language.) It was coming out the same color as the Gatorade I had drank within the past half hour. I know because I switched flavors to be sure. I went to see a doctor, he said it was no big deal. I have not peed in 4 days now since all fluids are coming straight out of my ass. Thursday and Friday I probably had to use the restroom 15-20 times each day because of this. I went to see the doctor Friday and got the same BS runaround. He said it could be IBS. I went to a baseball game on Friday and stayed 6 innings, used the bathroom 4 times, plus once before I left and as soon as I got home. (It is a 15 minute walk to the ballpark). I have tried Immodium AD and it has been no help at all. I went to the ER for the lack of peeing (afraid my kidneys are not working) but the doctor said he could not do anything except treat the dehydration with fluids. Did not eat too much Friday and was alright yesterday until I ate dinner last night. Since then I have had constant diarrhea. OK, here is my question. Could this be from a gluten-intolerance and not having gluten for awhile then eating it again. (I just found out right now my question mark button does not work, either.) Or are these symptoms of something else. I have done some research on IBS and studies have said it should not effect your sleep. I do not sleep anymore. I pooped the bed twice this week from the diarrhea (pretty proud of that. Makes my wife real happy, too... :(:ph34r: ) and wake up pretty much every hour to use the bathroom. I do not know what to do or so I am asking for some guidance here. Thanks, and have a great day.

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