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


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#1 Dee777

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Posted 23 April 2011 - 05:11 AM

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 :)
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#2 Chiana

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Posted 23 April 2011 - 05:52 AM

It costs a little more, but try picking up some pedialyte, or make this: http://rehydrate.org...prepare-ors.htm
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)
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#3 Marilyn R

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Posted 23 April 2011 - 08:01 AM

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!
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 etta694

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Posted 23 April 2011 - 08:27 AM

(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..)
  • 0
Anemia and IBS through my life
2005 Joint pain, exhaustion, general feeling of not being well 2006 Beginning of testing for everything but Celiac 2008 Bloating, more muscle stiffness, feeling sicker, more exhausted-testing 'normal' 2010 March insides begin to shut down, cough that won't go away 2010 June Colonoscopy, Endoscopy, biopsy - all show no problems
Self diagnosed gluten intolerant - went gluten free. Within 3 days feeling better.
After 5 days - insides began to move
Now - feel better than I have felt for 15 years (except when I gluten myself.. which I'm good at)

#5 ravenwoodglass

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Posted 23 April 2011 - 09:40 AM

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.
  • 2
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#6 love2travel

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Posted 23 April 2011 - 10:34 AM

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.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#7 IrishHeart

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Posted 23 April 2011 - 10:50 AM

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!!
  • 4

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

 

"Have a super shiny day!". A.S. 2014



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 rosetapper23

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Posted 23 April 2011 - 10:53 AM

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

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Posted 24 April 2011 - 06:42 AM

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.
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#10 Dee777

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Posted 25 April 2011 - 09:04 AM

It costs a little more, but try picking up some pedialyte, or make this: http://rehydrate.org...prepare-ors.htm
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
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#11 Dee777

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Posted 25 April 2011 - 09:08 AM

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!


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#12 Dee777

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Posted 25 April 2011 - 09:10 AM

(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!
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#13 Dee777

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Posted 25 April 2011 - 09:13 AM

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!
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#14 Dee777

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Posted 25 April 2011 - 09:14 AM

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!
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#15 Dee777

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Posted 25 April 2011 - 09:17 AM

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!
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