Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Do Not Know What To Do


Berger

Recommended Posts

Berger Newbie

(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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

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!

debmidge Rising Star
(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.

RiceGuy Collaborator
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.

HAK1031 Enthusiast

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.

mommida Enthusiast

Not producing urine is very serious.

YOU NEED MEDICAL ASSISTANCE.

Berger Newbie
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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

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...

Berger Newbie

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.

ravenwoodglass Mentor

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.

ravenwoodglass Mentor
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.

tom Contributor
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.

Berger Newbie

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.

cyberprof Enthusiast
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

Berger Newbie
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

RiceGuy Collaborator

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.

HelpKid101 Newbie
(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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Jen72
    Newest Member
    Jen72
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.