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


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52 replies to this topic

#16 Dee777

 
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Posted 25 April 2011 - 09:18 AM

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!
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#17 Dee777

 
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Posted 25 April 2011 - 09:20 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.


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!
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#18 IrishHeart

 
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Posted 25 April 2011 - 12:28 PM

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!!
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"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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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


#19 Dee777

 
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Posted 25 April 2011 - 07:09 PM

: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!!!
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#20 IrishHeart

 
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Posted 26 April 2011 - 06:45 AM

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!
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"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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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


#21 IrishHeart

 
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Posted 28 April 2011 - 03:17 PM

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??

http://www.celiac.co...592#entry695592
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"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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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


#22 Dee777

 
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Posted 02 May 2011 - 03:36 PM

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

How are you feeling??

http://www.celiac.co...592#entry695592

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
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#23 IrishHeart

 
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Posted 03 May 2011 - 07:11 AM

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!! ;)
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"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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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


#24 Dee777

 
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Posted 04 May 2011 - 09:03 AM

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
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#25 ravenwoodglass

 
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Posted 04 May 2011 - 09:15 AM

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.
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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)

#26 IrishHeart

 
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Posted 04 May 2011 - 12:35 PM

Yes, I do order them online. Custom Probiotics in CA. (I am not a saleswoman, I swear!) :D A book written by a gastro doctor lists them as ones he recommends to his patients. Then, someone on here said she used them.

I have used other brands during the last 2 years and did not feel they did a darn thing for me. (perhaps avoiding the gluten AND taking them was the key.)

I emailed the owner and I spoke to him on the phone too--about my condition--- and he asked me a few questions and then, told me which ones to use and sent me a bunch of interesting research on celiac. He suffered for years with gastro stuff, candida and h. pylori himself. He's a chemist and developed the probiotics. Just a suggestion.

Hey, you're the 4th person I met in recent weeks on here from a small town in Canada! :)

I agree with Raven...
I would definitely go to the appointment and tell him what's been going on. See what he has to say. I've met more than my share of doctors in the last few years and the "friendliest" and most "awesome" doctor I saw last year (my first impression) was also the most negligent :angry: (long story) .....as my hubby says, we don't have to like them, they just have to solve the damn problem. :lol:

Please continue the probiotics. They take a few months to balance that gut flora. You'd be surprised what gets dispersed before "flushing out". Powder ones --mixed in water--may be more suitable for you.

Good luck, hon. I know you are suffering. Let us know what happens.
  • 1

"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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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


#27 Dee777

 
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Posted 06 May 2011 - 04:55 AM

Yes, I do order them online. Custom Probiotics in CA. (I am not a saleswoman, I swear!) :D A book written by a gastro doctor lists them as ones he recommends to his patients. Then, someone on here said she used them.

I have used other brands during the last 2 years and did not feel they did a darn thing for me. (perhaps avoiding the gluten AND taking them was the key.)

I emailed the owner and I spoke to him on the phone too--about my condition--- and he asked me a few questions and then, told me which ones to use and sent me a bunch of interesting research on celiac. He suffered for years with gastro stuff, candida and h. pylori himself. He's a chemist and developed the probiotics. Just a suggestion.

Hey, you're the 4th person I met in recent weeks on here from a small town in Canada! :)

I agree with Raven...
I would definitely go to the appointment and tell him what's been going on. See what he has to say. I've met more than my share of doctors in the last few years and the "friendliest" and most "awesome" doctor I saw last year (my first impression) was also the most negligent :angry: (long story) .....as my hubby says, we don't have to like them, they just have to solve the damn problem. :lol:

Please continue the probiotics. They take a few months to balance that gut flora. You'd be surprised what gets dispersed before "flushing out". Powder ones --mixed in water--may be more suitable for you.

Good luck, hon. I know you are suffering. Let us know what happens.



Well. Here's the update, and I didn't like it one bit!

I spent a total of 15 minutes with the "specialist" yesterday. He poked and prodded my abdomen for about 1 minute, took my blood pressure and told me I am to stop everything and take the Imodium (which I told him doesn't work for me at all). This includes the probiotics. He insists I am getting CC. How can that be when I am consuming clear fluids only. Sprite from the bottle, purified water from a bottle, no tea, coffee or alcoholic beverages. No soup. I had IV fluid therapy and this made it worse. Ah well. He thinks I am having a bout of CC? Then I am going to my doctor today and demanding a blood test to see what that has to say. Eat, he tells me. Eat anything that has no gluten. Right. I can't even drink a glass of water without sitting in my bathroom and wasting a half hour of my life in there :( And then to make matters worse, the good doctor scheduled me for a gastroscopy. For September 22. The way things are going now and the rate I am losing weight, I will be dead by then.

Wow, I didn't realize I had all that rage built up LOL Sorry, guys! I think it could be a combination of hunger and the fact that I am scheduled by my GP to have an abdominal ultrasound this morning. I am so getting tired of doctors and tests and I am certain this is only the beginning!

Anyway just wanted to update! Going to check out the probiotics company today, thanks for the info!

Dee
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#28 Dee777

 
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Posted 06 May 2011 - 04:56 AM

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.



Thank you, Ravenwoodglass!
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#29 IrishHeart

 
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Posted 06 May 2011 - 05:24 AM

Well. Here's the update, and I didn't like it one bit!

I spent a total of 15 minutes with the "specialist" yesterday. He poked and prodded my abdomen for about 1 minute, took my blood pressure and told me I am to stop everything and take the Imodium (which I told him doesn't work for me at all). This includes the probiotics. He insists I am getting CC. How can that be when I am consuming clear fluids only. Sprite from the bottle, purified water from a bottle, no tea, coffee or alcoholic beverages. No soup. I had IV fluid therapy and this made it worse. Ah well. He thinks I am having a bout of CC? Then I am going to my doctor today and demanding a blood test to see what that has to say. Eat, he tells me. Eat anything that has no gluten. Right. I can't even drink a glass of water without sitting in my bathroom and wasting a half hour of my life in there :( And then to make matters worse, the good doctor scheduled me for a gastroscopy. For September 22. The way things are going now and the rate I am losing weight, I will be dead by then.

Wow, I didn't realize I had all that rage built up LOL Sorry, guys! I think it could be a combination of hunger and the fact that I am scheduled by my GP to have an abdominal ultrasound this morning. I am so getting tired of doctors and tests and I am certain this is only the beginning!

Anyway just wanted to update! Going to check out the probiotics company today, thanks for the info!

Dee


Dee,
Don't be sorry about venting your anger!! WE GET IT!! I had so much pent up rage about doctors not helping me and I let it out finally and I feel a LOT better! :) Vent to me anytime you want to!

I know exactly how you feel. I used to scream and cry (before going gluten-free and stopping the diarrhea and weight loss) that "I'll be dead before they figure this out!!". They didn't figure it out---I did!

Immodium is just more symptom treating. How does that solve your problem??

Stop drinking sprite!! Sugars or HFCS may be causing trouble. (Sorry, but it's true)

Stick to plain, filtered water. If you get ditzy, you are dehydrated again. Drink the water with salt/sugar ratio I describe above.

Try clear gluten-free broth. Brown rice. Boiled chicken.

Why should you stop the probiotics?? They will not hurt you. They are naturally occurring in your human body and constant diarrhea signals an imbalance of the gut flora. (arrgh! some doctor are idiots)

Oh Dee, This is exactly what happened to me. I lost a drastic 90 lbs. and got the same rap you are getting. Take this antacid, take this anti-depressant (HUH?! :blink: ), have an ultrasound, a small bowel follow-through....blah blah blah.

Okay....let's say he's right (just for conversation sake...)

How could you possibly be getting CCed? Do you take any vitamins or supplements? Are your house and your family members gluten-free? Pots, pans, kitchen cutting boards--all checked? Just thinking aloud here...

Maybe the ultrasound will reveal something. :unsure: Let me know! Hang in there and EAT plain food and drink WATER. You have to eat, hon!
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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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.
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#30 ravenwoodglass

 
ravenwoodglass

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Posted 06 May 2011 - 01:07 PM

Okay....let's say he's right (just for conversation sake...)

How could you possibly be getting CCed? Do you take any vitamins or supplements? Are your house and your family members gluten-free? Pots, pans, kitchen cutting boards--all checked? Just thinking aloud here...

Maybe the ultrasound will reveal something. :unsure: Let me know! Hang in there and EAT plain food and drink WATER. You have to eat, hon!


Dee, I am so sorry the appointment didn't go well. I think many of us have had the same disappointment and anger with doctors. I have been diagnosed since 2002 and still don't trust them.
I agree with Irish, you need to eat period. Even if it goes right through you. Plain food, perhaps plain baked or sweet potatoes and plain broiled chicken or fish, very well cooked plain fruit or veggies etc.
I am assuming they have done stool testing to make sure you don't have a lingering food poisoning or C diff, if not call and demand to pick up a stool testing kit.
You also may want to call the specialists office and ask to be put on the cancellation list then call daily to see if someone has cancelled so they can get you in sooner. You could also try having your GP call and stress how ill you are as sometimes they can give the specialist the nudge needed to speed things up. My old GP did that and they had me in for a colonoscopy the next day, too bad they didn't do an endo at the same time as it took 4 more years for me to be diagnosed.
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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)




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