Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

I Might Be An Idiot, But I Am Desperate...


Dee777

Recommended Posts

Dee777 Rookie

I have had D since the 3rd of April. It doesn't matter what I eat, it doesn't matter what I drink. My diet for the past 3 days has consisted of G2 Gatorade, water, tea, rice crackers, jars of baby food bananas. If I take Imodium it helps control it but I get horrible cramps and bloating. I called the doctor and asked for Lomotil on the 14th and they called in a prescription for me for 3 days worth and that was it. I went tot he doctor for this about 2 weeks ago and I was told it would pass... I am not sure what to do. I mean, aside from seeing the doctor again. Is there something I'm missing? Is there anyone else out there who gets it this bad? I feel like a freak. I mean, I can't even drink and eat a few crackers without having to be 10 feet from the bathroom. I am scared and stressed and my husband has no idea what to do with me anymore... I want my life back! If there is ANYONE out there who has gone through this, and can tell me how they managed the big D, please, please let me know. I am so desperate. Thank you in advance, sorry for being a whiner :)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 52
  • Created
  • Last Reply
Chiana Apprentice

It costs a little more, but try picking up some pedialyte, or make this: Open Original Shared Link

Gatorade really isn't for long-term diarrhea, and can sometimes contribute to the problem. Have you tried a lot of yogurt/probiotics, and what color is your stool? (Oh, what a terrible question. :D)

Link to comment
Share on other sites
Marilyn R Community Regular

Dee, I know how awful you are feeling.

This is the regimine that has worked for my mother and I many times.

For 24 hours, have nothing but liquids, like safe chicken broth, herbal tea (no caffeine), pedialite, water.

The next day, have a banana, plain mashed potatoes made without dairy products. You can also have white rice, a peeled and sliced apple or applesauce. If you're up for it, try a little plain meat, like poached skinless chicken breast.

This is a modified BRAT diet (banans, apples, rice, toast) that pediatricians have recommended for years.

There is probably soy in the rice crackers. Could soy be the problem? (It is for me!) I'd steer away from anything you don't prepare yourself (except the pedialyte), but that could just be me. And it's really hard to cook anything because you're so weak!

Blueberries are good ... they have a natural anti-D effect. Good luck, wishing you all the best!

Link to comment
Share on other sites
etta694 Explorer

(Just an aside.. I had some blueberry tea the other day.. made me sick and - checked the label. Yup, soy in it. :huh: Double check your labels..)

Link to comment
Share on other sites
ravenwoodglass Mentor

Did your doctor do any stool tests? If not go back and demand them. I had salmonella once for almost 3 weeks with my doctor telling me that it was just my IBS acting up (I hadn't been diagnosed celiac yet at that point). I knew this was different from the daily D I had already had for years. Even immodium wouldn't stop it for more than an hour or so and I lost 20 lbs in those 3 weeks. I finally got her to test and sure enough I had it. A short course of antibiotics cleared it up pretty quickly.

Link to comment
Share on other sites
love2travel Mentor

When I get D (it is rare) I consume more fibre and that ALWAYS works. Women are to have 25 g of fibre per day; men 30 g. Apparently we only get about 10 g per day on average! Some days I struggle to get enough fibre in my diet.

Link to comment
Share on other sites
IrishHeart Veteran

Don't be sorry--you are not a whiner, and you certainly aren't an idiot, hon!! ((HUGS))

I have been in your shoes with this non-stop D, cramps, bloating, and pain in the past, even ending up in the ER with dehydration. Even after going gluten-free, I still had D off and on, mostly because I had trouble digesting fats. I used digestive enzymes and they helped enormously! No more D for me--since about month 3 of absolutely no gluten, no dairy, no soy.

Here's what I have learned:

Gatorade actually creates diarrhea...stop using that ASAP.

Stop the tea too. Tea is a major gut irritant.

If you are dehydrated, mix a TaBLeSpoon of sugar and a TeaSPoon of salt into 16 oz. of water...it will do the same thing as pedialyte. I promise! It will balance your electrolytes quickly.

I did that when I was really ditzy from dehydration and it worked well. (my hubby-- the chemist-- thought of that for me :)

Were you glutened???

I am just wondering...what provoked this episode? What were you eating before this happened? Was anyone around you ill?Are you running a fever?

I hate to ask so many questions, but I am just trying to help you sort out what started it.

D is caused by a virus, a parasite, sugar or fat malasborption , food poisoning, small bowel bacterial overgrowth, among other things.

Are you newly gluten-free? your gut may just be so irritated and raw still.

Can you eat plain rice crackers (gluten-free crackers have soy and sometimes, soy is very difficult for celiacs to digest) and maybe a real banana??

(I would skip the baby food) Peel an apple and eat small bites.

I would follow the advice MarilynR suggests--small amounts of plain, boiled chicken breasts, plain rice....and you should level off.

Immodium does put a good quick HALT on diarrhea BUT it is not wise to use it for days on end.

If you have something in your gut that is causing you pain and illness (a flu bug, gluten, some other poison like Ravenwood suggests) then, you actually DO want to let it out.

The spasms that produce the big D occur because the tract is working extra hard to rid the body of whatever it does not want in there.

If there is insufficient fiber and not enough good gut flora, there's going to be watery stools.

I would suggest taking probiotics (none with dairy, though!!!) if you don't already. They provide the good bacteria you need to get your gut flora balanced out.

When I was really ill with D and lost a dramatic amount of weight(before I was DXed) I had digestive stool testing done and I had NO GOOD bacteria in my gut---that is NOT a good thing. :unsure: I read that Celiacs usually have an imbalance of good/bad gut bacteria.

Three weeks is a long time to have chronic D. I know, I had it for weeks at a time for nearly 2 years. Felt like a weak rag doll all the time.Not fun!

Please...go to your doctor if this does not stop in the next day or so, just to be sure you're not dealing with something other than the gut irritation from the celiac.

I hope this helps and I hope you feel better soon!!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

You might try taking L-Glutamine, which heals the gut. It ended years of D for me.

Link to comment
Share on other sites
dilettantesteph Collaborator

I have been where you are. I had uncontrollable D for years. My idiot doc told me it was IBS and didn't even give me a blood test for celiac. After I finally found out I had celiac and went gluten free, things got a bit better but I still had problems from time to time.

What worked for me was to get off processed foods. I think that cc was getting me. Instead of baby food bananas, eat actual bananas. Instead of rice crackers, eat rice. Lundbergs seems to be the least cc. Get off the Gatoraid and tea. When the D stops you can try adding things back in one per week and you will know what items you can tolerate and which you don't. Keep a food diary. Good luck.

There are few things worse than letting loose in your pants.

Link to comment
Share on other sites
Dee777 Rookie

It costs a little more, but try picking up some pedialyte, or make this: Open Original Shared Link

Gatorade really isn't for long-term diarrhea, and can sometimes contribute to the problem. Have you tried a lot of yogurt/probiotics, and what color is your stool? (Oh, what a terrible question. :D)

Sorry to all for my neglect in replying sooner, I was a little under the weather and lazing around in the bathroom :)

I did pick up the Pedialyte, and I have been drinking it faithfully. I have noticed a marked difference in my hydration, thank you for the tip! As for the color... it ranges anywhere from a lovely light tan to a medium brown. Quite similar to my hair color as a teenager LOL

Link to comment
Share on other sites
Dee777 Rookie

Dee, I know how awful you are feeling.

This is the regimine that has worked for my mother and I many times.

For 24 hours, have nothing but liquids, like safe chicken broth, herbal tea (no caffeine), pedialite, water.

The next day, have a banana, plain mashed potatoes made without dairy products. You can also have white rice, a peeled and sliced apple or applesauce. If you're up for it, try a little plain meat, like poached skinless chicken breast.

This is a modified BRAT diet (banans, apples, rice, toast) that pediatricians have recommended for years.

There is probably soy in the rice crackers. Could soy be the problem? (It is for me!) I'd steer away from anything you don't prepare yourself (except the pedialyte), but that could just be me. And it's really hard to cook anything because you're so weak!

Blueberries are good ... they have a natural anti-D effect. Good luck, wishing you all the best!

Thank you for your help! I have thus far been afraid to really eat anything solid, but tomorrow I am going to start. Heck the weight loss won't hurt me anyway. When I was diagnosed I had wanted to lose 45 pounds, now all I really need to lose is 20. I know, I know, bad bad way to lose just trying to inject some humor here. Actually I don't have any reason to have to leave the hosue tomorrow and so I will give your suggestion a try... will start with the real peeled banana, and a little white rice and see where that gets me! I am also going to eliminate soy etc. and gradually add them back in after a while one thing at a time to see what the heck is triggering it. Thanks again, you were most helpful to me!

Link to comment
Share on other sites
Dee777 Rookie

(Just an aside.. I had some blueberry tea the other day.. made me sick and - checked the label. Yup, soy in it. :huh: Double check your labels..)

Ah, labels labels... I have read them until I am cross-eyed!!! Dang things. I have gotten to where if I can't pronounce it, I don't eat it, plain and simple. Thank you for the reminder though, silly things us celiacs can't eat!!! I appreciate your help!

Link to comment
Share on other sites
Dee777 Rookie

Did your doctor do any stool tests? If not go back and demand them. I had salmonella once for almost 3 weeks with my doctor telling me that it was just my IBS acting up (I hadn't been diagnosed celiac yet at that point). I knew this was different from the daily D I had already had for years. Even immodium wouldn't stop it for more than an hour or so and I lost 20 lbs in those 3 weeks. I finally got her to test and sure enough I had it. A short course of antibiotics cleared it up pretty quickly.

I am going to the doctor this afternoon, and I will request the stool tests. My doctor is very sympathetic to my cause and generally if I ask for something like a test in particular he has no problem giving it a try. Imodium helps most of the time but I find if I take the plain Imodium I get all sorts of cramping and gas and bloating and writhe around like a fat worm until it wears off. So I tried the Imodium that covers gas and bloating as well and it is better. Will let you know how the tests come out, thanks for the information, it was very helpful!

Link to comment
Share on other sites
Dee777 Rookie

When I get D (it is rare) I consume more fibre and that ALWAYS works. Women are to have 25 g of fibre per day; men 30 g. Apparently we only get about 10 g per day on average! Some days I struggle to get enough fibre in my diet.

I agree that we don't get enough fibre in our diets! I will certainly keep that in mind for when I can eat again LOL Thank you for the reminder and for your advice it's appreciated!

Link to comment
Share on other sites
Dee777 Rookie

Don't be sorry--you are not a whiner, and you certainly aren't an idiot, hon!! ((HUGS))

I have been in your shoes with this non-stop D, cramps, bloating, and pain in the past, even ending up in the ER with dehydration. Even after going gluten-free, I still had D off and on, mostly because I had trouble digesting fats. I used digestive enzymes and they helped enormously! No more D for me--since about month 3 of absolutely no gluten, no dairy, no soy.

Here's what I have learned:

Gatorade actually creates diarrhea...stop using that ASAP.

Stop the tea too. Tea is a major gut irritant.

If you are dehydrated, mix a TaBLeSpoon of sugar and a TeaSPoon of salt into 16 oz. of water...it will do the same thing as pedialyte. I promise! It will balance your electrolytes quickly.

I did that when I was really ditzy from dehydration and it worked well. (my hubby-- the chemist-- thought of that for me :)

Were you glutened???

I am just wondering...what provoked this episode? What were you eating before this happened? Was anyone around you ill?Are you running a fever?

I hate to ask so many questions, but I am just trying to help you sort out what started it.

D is caused by a virus, a parasite, sugar or fat malasborption , food poisoning, small bowel bacterial overgrowth, among other things.

Are you newly gluten-free? your gut may just be so irritated and raw still.

Can you eat plain rice crackers (gluten-free crackers have soy and sometimes, soy is very difficult for celiacs to digest) and maybe a real banana??

(I would skip the baby food) Peel an apple and eat small bites.

I would follow the advice MarilynR suggests--small amounts of plain, boiled chicken breasts, plain rice....and you should level off.

Immodium does put a good quick HALT on diarrhea BUT it is not wise to use it for days on end.

If you have something in your gut that is causing you pain and illness (a flu bug, gluten, some other poison like Ravenwood suggests) then, you actually DO want to let it out.

The spasms that produce the big D occur because the tract is working extra hard to rid the body of whatever it does not want in there.

If there is insufficient fiber and not enough good gut flora, there's going to be watery stools.

I would suggest taking probiotics (none with dairy, though!!!) if you don't already. They provide the good bacteria you need to get your gut flora balanced out.

When I was really ill with D and lost a dramatic amount of weight(before I was DXed) I had digestive stool testing done and I had NO GOOD bacteria in my gut---that is NOT a good thing. :unsure: I read that Celiacs usually have an imbalance of good/bad gut bacteria.

Three weeks is a long time to have chronic D. I know, I had it for weeks at a time for nearly 2 years. Felt like a weak rag doll all the time.Not fun!

Please...go to your doctor if this does not stop in the next day or so, just to be sure you're not dealing with something other than the gut irritation from the celiac.

I hope this helps and I hope you feel better soon!!

Holy COW... you are one wealth of information, aren't you??? :) Thank you thank you for it all, I have started a probiotic recommended to me by my pharmacist and it seems to have slowed things down, have been feeling better although things have not stopped yet. I started them Saturday night so haven't been on them long at all. I can't remember what I ate prior to getting ill, and I am eliminating ALL dairy for a while will slowly re-introduce it at a later time. Thank you SO much for your help!

Link to comment
Share on other sites
Dee777 Rookie

You might try taking L-Glutamine, which heals the gut. It ended years of D for me.

Thank you so much for the tip, I am going to go check into that today with the pharmacist who has been so patient with my questions! Your help is much appreciated!

Link to comment
Share on other sites
Dee777 Rookie

I have been where you are. I had uncontrollable D for years. My idiot doc told me it was IBS and didn't even give me a blood test for celiac. After I finally found out I had celiac and went gluten free, things got a bit better but I still had problems from time to time.

What worked for me was to get off processed foods. I think that cc was getting me. Instead of baby food bananas, eat actual bananas. Instead of rice crackers, eat rice. Lundbergs seems to be the least cc. Get off the Gatoraid and tea. When the D stops you can try adding things back in one per week and you will know what items you can tolerate and which you don't. Keep a food diary. Good luck.

There are few things worse than letting loose in your pants.

I haven't had the baby food since Saturday, I laid off the crackers and will try the plain rice tomorrow as per my earlier post... You made me laugh with your letting loose in the pants comment, seriously I needed that laugh thank you SO much for the advice and the humor!!! Oh and I switched from Gatorade to Pedialyte and no more tea for me for a while!

Link to comment
Share on other sites
IrishHeart Veteran

Holy COW... you are one wealth of information, aren't you??? :) Thank you thank you for it all, I have started a probiotic recommended to me by my pharmacist and it seems to have slowed things down, have been feeling better although things have not stopped yet. I started them Saturday night so haven't been on them long at all. I can't remember what I ate prior to getting ill, and I am eliminating ALL dairy for a while will slowly re-introduce it at a later time. Thank you SO much for your help!

:rolleyes: (chuckling) yeah, what a topic for me to be so well-versed in, eh??...poo and how to stop it...geesh.... :blink:

I became a non-stop researching machine the last 4 years as I became so ill because NO ONE in the medical community was any real help...I only pass on what worked for me. (and reading and trying to comprehend it while my brain was impaired was pretty tricky indeed)

I truly hope you start to feel better soon. The probiotics are pretty miraculous. Give them a chance to repopulate your gut and you'll notice a difference.

You need some fiber --so ditch the dairy and eat that rice and peeled apples. Hang in there, hon!I never thought I'd get to where I am now either...but...here I am.

No D anymore...ta da!! B)

let us know how you're doing!!

Link to comment
Share on other sites
Dee777 Rookie

:rolleyes: (chuckling) yeah, what a topic for me to be so well-versed in, eh??...poo and how to stop it...geesh.... :blink:

I became a non-stop researching machine the last 4 years as I became so ill because NO ONE in the medical community was any real help...I only pass on what worked for me. (and reading and trying to comprehend it while my brain was impaired was pretty tricky indeed)

I truly hope you start to feel better soon. The probiotics are pretty miraculous. Give them a chance to repopulate your gut and you'll notice a difference.

You need some fiber --so ditch the dairy and eat that rice and peeled apples. Hang in there, hon!I never thought I'd get to where I am now either...but...here I am.

No D anymore...ta da!! B)

let us know how you're doing!!

Well, everyone should be an expert at something... your area of expertise lays in poop, and i have learned I have a new talent- I can break the speed of sound making tracks for the nearest bathroom!

I had a great day today. Ate a peeled apple, and that was wonderful! For supper I had a half cup of plain boiled white rice and a little less than half a small plain baked chicken breast, and have broken that sound barrier many many times since :(

Ah well. Should have known better maybe I pushed it? I didn't need to take Imodium at all today, had to take three of them within 15 minutes. I do have a question though, if anyone knows. Can I still take the probiotics within a short time of the Imodium? Do I have to wait a certain amount of time between both? I am asking because I forgot to take a probiotic with my supper. Ah this learning curve is so steep!

Thanks! And good for you having no D anymore!!! I am dreaming of that day and will throw the biggest party this town has ever seen when it finally arrives LOL I'll put a big banner in my front window "Come celebrate with me, I no longer suffer from the big D!!!

Link to comment
Share on other sites
IrishHeart Veteran

I hear ya...I know where every public bathroom is within a 150 miles radius of my house. :unsure:

For the first time in 20 years, I am NOT carrying Immodium caplets or antacids. No back-ups in the glove compartment either. :D

Miracles occur with healing the intestines. Whenever I think I am not making progress, I recall just how bad it was (I hardly left the house some days because I was doubled over in pain and my husband picked me up off the bathroom floor many times. He held cold cloths on my forehead and on the back of my neck because I was passing out from the pain). (shudder) that was ugly...

But, now, I am so much better and I want you to feel encouraged because I NEVER thought that nightmare would end. But it did!!

This WILL happen for you, too!

How long have you been gluten-free?

I think you may be overdoing the Immodium, in my humble opinion.

I also think you need more solid food in a day than 1 apple, a bit of rice and chicken. I know you are not hungry (been there) and I know you associate eating with having the D...but the truth is, you need some bulk-forming FIBER. And that comes from FOOD. Eat more rice--spaced throughout the day. NO dairy, okay??

Are you still feeling dehydrated? If so, please consider drinking the salt/sugar/water drink I explained above so your electrolytes balance out.

Again, if this does not clear up soon, you may need to see your doctor.

I take the probiotics (mine are powder--mixed into water)on an empty stomach every morning and one dose before bed.

Okay, that's all I got....I hope you're feeling better today, Dee!

Link to comment
Share on other sites
IrishHeart Veteran

I have had D since the 3rd of April. It doesn't matter what I eat, it doesn't matter what I drink. My diet for the past 3 days has consisted of G2 Gatorade, water, tea, rice crackers, jars of baby food bananas. If I take Imodium it helps control it but I get horrible cramps and bloating. I called the doctor and asked for Lomotil on the 14th and they called in a prescription for me for 3 days worth and that was it. I went tot he doctor for this about 2 weeks ago and I was told it would pass... I am not sure what to do. I mean, aside from seeing the doctor again. Is there something I'm missing? Is there anyone else out there who gets it this bad? I feel like a freak. I mean, I can't even drink and eat a few crackers without having to be 10 feet from the bathroom. I am scared and stressed and my husband has no idea what to do with me anymore... I want my life back! If there is ANYONE out there who has gone through this, and can tell me how they managed the big D, please, please let me know. I am so desperate. Thank you in advance, sorry for being a whiner :)

DEE! Read this post from today...! maybe it applies to you?

How are you feeling??

Link to comment
Share on other sites
Dee777 Rookie

DEE! Read this post from today...! maybe it applies to you?

How are you feeling??

Ah, Irish Heart, you dear! I must apologize for not responding sooner, btu truth be told I have been gorked out of my head on Lomotil (it really makes me sleepy!) for days and I did come one, follow your link above and read it, then back to sleep I went. I went to see my doctor on Thursday last week, but he was away and had another in his place for the day. She admitted me to the hospital for fluid therapy as my electrolytes were whacked out of balance. After that I came home and went back to sleep lol.

Today I had to go back to my doctor this morning and I shared with him the information you passed on to me, and he immediately asked me if I would like to try the medication Cholestyramine. He said it would not hurt me, and that one of the most common side effects is constipation :) I told him if that happened I would invite him over for a barbecue! He is trying to get me in to see a gastroenterologist but they are horridly difficult to get into here where we live but he said he would see what he could do. In the meantime I am scheduled for an abdominal ultrasound this Thursday morning (I have been having discomfort in the gallbladder area) and have a prescription filled for lots more Lomotil in the meantime.

But, a funny thing happened today. I didn't eat or drink anything when I got up this morning because I had a 30 minute drive to see the doc and there are no restroom facilities between there and here. So upon arriving home at about 1 pm today I was absolutely dehydrated and famished and in a "what the heck" kind of mood (rather grumpy) so decided to make myself 2 pieces of rice toast. And I followed that with three slices of black forest ham. And a big old glass of water. I figured I was going to be sick anyway... and I wasn't. No meds, today either... This lasted for 4 hours and the D hit again afterwards but that was the longest time in between the dreaded D I have had in over a month. Maybe things are looking up? Anyway, I took some more Lomotil, just in case :) Don't want to have a miserable night to spoil my good mood.

So I will see how things go, my pharmacist didn't have the Cholestyramine in and had to order it so it won't be in until tomorrow. I will see how I am feeling when I pick it up and go from there. For now I am just trying to decide if I should try it or wait for a specialist to do tests first. Thank you so much for the link, for thinking of me and taking the time to send it, so very very kind of you and I DO thank you from the bottom of my heart!

Dee <3

Link to comment
Share on other sites
IrishHeart Veteran

Ah, Irish Heart, you dear! I must apologize for not responding sooner, btu truth be told I have been gorked out of my head on Lomotil (it really makes me sleepy!) for days and I did come one, follow your link above and read it, then back to sleep I went. I went to see my doctor on Thursday last week, but he was away and had another in his place for the day. She admitted me to the hospital for fluid therapy as my electrolytes were whacked out of balance. After that I came home and went back to sleep lol.

Today I had to go back to my doctor this morning and I shared with him the information you passed on to me, and he immediately asked me if I would like to try the medication Cholestyramine. He said it would not hurt me, and that one of the most common side effects is constipation :) I told him if that happened I would invite him over for a barbecue! He is trying to get me in to see a gastroenterologist but they are horridly difficult to get into here where we live but he said he would see what he could do. In the meantime I am scheduled for an abdominal ultrasound this Thursday morning (I have been having discomfort in the gallbladder area) and have a prescription filled for lots more Lomotil in the meantime.

But, a funny thing happened today. I didn't eat or drink anything when I got up this morning because I had a 30 minute drive to see the doc and there are no restroom facilities between there and here. So upon arriving home at about 1 pm today I was absolutely dehydrated and famished and in a "what the heck" kind of mood (rather grumpy) so decided to make myself 2 pieces of rice toast. And I followed that with three slices of black forest ham. And a big old glass of water. I figured I was going to be sick anyway... and I wasn't. No meds, today either... This lasted for 4 hours and the D hit again afterwards but that was the longest time in between the dreaded D I have had in over a month. Maybe things are looking up? Anyway, I took some more Lomotil, just in case :) Don't want to have a miserable night to spoil my good mood.

So I will see how things go, my pharmacist didn't have the Cholestyramine in and had to order it so it won't be in until tomorrow. I will see how I am feeling when I pick it up and go from there. For now I am just trying to decide if I should try it or wait for a specialist to do tests first. Thank you so much for the link, for thinking of me and taking the time to send it, so very very kind of you and I DO thank you from the bottom of my heart!

Dee <3

You're so welcome, hon and I hope it resolves the D for you.

I knew your electrolytes must have been off, that's why I recommended the water,salt,sugar drink. I commiserate as I went through that awful D and abdominal pain for a very long time. Had the abdominal scans, stool samples, scopes, everything. They could never "see" anything except the tests revealed an absence of good bacteria in the gut.

The bottom line? Time and Probtiotics. Trust me. Your gut flora is all out of whack. No doctor will tell you to supplement with these, but celiacs have unbalanced gut flora for sure.

Please get some and try it. I get mine from Custom probiotics. (If they edit the name out, PM me and I'll tell you where)

TOTALLY Stopped the D, the C and now, I have normal BMs for the first time since....um :unsure: ,...well, EVER in my whole life. :) :)

Geesh, did you ever think you would be discussing poop with other people on the internet?? :lol: :lol:

me neither, but there it is... ;)

Please, keep me posted. I want to hear you are feeling better!! ;)

Link to comment
Share on other sites
Dee777 Rookie

You're so welcome, hon and I hope it resolves the D for you.

I knew your electrolytes must have been off, that's why I recommended the water,salt,sugar drink. I commiserate as I went through that awful D and abdominal pain for a very long time. Had the abdominal scans, stool samples, scopes, everything. They could never "see" anything except the tests revealed an absence of good bacteria in the gut.

The bottom line? Time and Probtiotics. Trust me. Your gut flora is all out of whack. No doctor will tell you to supplement with these, but celiacs have unbalanced gut flora for sure.

Please get some and try it. I get mine from Custom probiotics. (If they edit the name out, PM me and I'll tell you where)

TOTALLY Stopped the D, the C and now, I have normal BMs for the first time since....um :unsure: ,...well, EVER in my whole life. :) :)

Geesh, did you ever think you would be discussing poop with other people on the internet?? :lol: :lol:

me neither, but there it is... ;)

Please, keep me posted. I want to hear you are feeling better!! ;)

Now that you mention it, no. I never imagined I would ever be discussing my poop condition with anyone, least of all on the internet :)

I received a call today from the office of a gastroenterologist. It appears my GP called and begged for me to have an appointment with him and lo and behold I have one for tomorrow morning at 10. I have been taking the probiotics but I am not sure if they are inside me long enough to work. Every time I have a little drink of something even water, whoosh. Down the drain. Do you order your probiotics online? I live in a small community (pop. ~5,000) in Canada, there aren't a whole lot of places here to get them so my options are limited! The ones I currently have are bought at my local drugstore.

I am a little leery about seeing the gastroenterologist. I looked him up online and have read that his bedside manner is atrocious. I guess I can go see what he has to say, I don't HAVE to do anything he suggests if I don't feel right about it, right? I am just so tired of doctors and tests and D! Not that anyone else in here isn't either! I am certain I would be insane by now if I didn't have this forum and you wonderful people!

Thank you, Irish!

Dee

Link to comment
Share on other sites
ravenwoodglass Mentor

I am a little leery about seeing the gastroenterologist. I looked him up online and have read that his bedside manner is atrocious. I guess I can go see what he has to say, I don't HAVE to do anything he suggests if I don't feel right about it, right? I am just so tired of doctors and tests and D! Dee

Glad your doctor was able to get you in. Sometimes the doctors with the worst bedside manners are the best at figuring out what is going on. Hopefully that will be the case for you. I do hope you are feeling alot better soon.

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,500
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
×
×
  • Create New...