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debmidge

Another Condition Related To Celiac

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Ok, hubby went to proctologist for hemorroids only to find that he doesn't have them, he has a prolapsed rectal lining due to years of misdiagosed celiac.

So he needs reconstruction done in sections, it's outpatient in his office but it'll take 3-4 procedures over the next 3-4 months.

So chalk another condition up to celiac.

Reason for connection: the celiac makes a lot "traffic" in the bowel area.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

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

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

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

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

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

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

Developed neuropathy in 2005

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

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I am sorry. It sound very painful. Hope, this will give him some relief after the proceedures are over. :(


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Me too.

and I also want others to be aware of that this can happen (prolapse). I never heard of it before.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

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

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

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

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

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

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

Developed neuropathy in 2005

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

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This is so enlightening! I have something similiar, well supposedly. After reading your post i'm wondering if I have something more like what you're describing.

The dr I had at the time called it: Proctalgia Fugax

It's a horrible pain in the rectum...the pain can last from a few minutes to up to 2 hours (for me anyway). I usually wake in the night with it and it's AWFUL AWFUL pain. Dr said no cure i'd have to take some pain reliever (motrin) and he suggested walking. According to him walking off the pain is helpful. HA! :angry:

Thanks for posting this...good info to have for when I see a new dr who maybe can shed some REAL light! In the meantime, I just continue to deal with it...


~Turtle~

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Turtle, I have that pain, too. It comes on unexpectedly and lasts from a few minutes to several hours.

Deb, We have a family friend who had the prolapse. She had a one-time surgery for it (quite possibly her case was different, she's not a Celiac). She has been fine, though since.

I'll keep your husband in my thoughts--he's been through so much already.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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always grateful for your thoughts and prayers.

they could do it in hospital, but Dr. said that would be painful all at once. Ok to do mini procedures every 3-4 weeks.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

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

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

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

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

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

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

Developed neuropathy in 2005

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

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Patti: Did your doctor ever give you a dx??

He said it was most likely a muscle spasm.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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He said it was most likely a muscle spasm.

i HAVE THIS TOO PATTI

MUSCLE SPASM MY A** :lol:B)

FEELS MORE LIKE A CRAMP TO ME.

OUTCH :ph34r: IT HURTS DOESN'T IT.

GOOD LUCK DEB TO HUBBY

J


Judy in Southern CA

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Guest marshlakemom
i HAVE THIS TOO PATTI

MUSCLE SPASM MY A** :lol:B)

FEELS MORE LIKE A CRAMP TO ME.

OUTCH :ph34r: IT HURTS DOESN'T IT.

GOOD LUCK DEB TO HUBBY

J

Hi All

I'm so interested that this posting came up, as I have had pains in my rectom for years and years, and yes it comes on a lot during the night. I describe it as someone trying to shove a broomstick up my rectom, the pain is something awful. And yes it can last from anywhere from 5 min - 2 hours. Motrin does help. It starts very subtly, just a bit of a twinge in the rectom, and within a few minutes it is full blown.

I also wanted to mention that when this pain is full blown I have an extreme urge to have a bowl movement, the urge to push down, like in childbirth. It's like when I push down I get temporary relief.

Does this sound familiar to anyone.

Can anybody out there who has this problem tell me more about your experience, as I have an appointment with my doctor on Monday, and would like to discuss this with her.

Thanks

Deb

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Hi All

I'm so interested that this posting came up, as I have had pains in my rectom for years and years, and yes it comes on a lot during the night. I describe it as someone trying to shove a broomstick up my rectom, the pain is something awful. And yes it can last from anywhere from 5 min - 2 hours. Motrin does help. It starts very subtly, just a bit of a twinge in the rectom, and within a few minutes it is full blown.

I also wanted to mention that when this pain is full blown I have an extreme urge to have a bowl movement, the urge to push down, like in childbirth. It's like when I push down I get temporary relief.

Does this sound familiar to anyone.

Can anybody out there who has this problem tell me more about your experience, as I have an appointment with my doctor on Monday, and would like to discuss this with her.

Thanks

Deb

YES, YES, YES!! Everything you described is EXACTLY what I have....and I too have had this going on for a few years. One doctor that I saw diagnosed it as: Proctalgia Fugax

Isn't that a pretty word? No cure, just take motrin, walk and ride out the pain. Easier said than done right?

I have not been to a doctor yet since i've moved, but I plan to bring this up when I get an appt set up. PLEASE keep in touch if you learn anything about this. I'll be happy to do the same.

Good luck!


~Turtle~

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Hi All

I'm so interested that this posting came up, as I have had pains in my rectom for years and years, and yes it comes on a lot during the night. I describe it as someone trying to shove a broomstick up my rectom, the pain is something awful. And yes it can last from anywhere from 5 min - 2 hours. Motrin does help. It starts very subtly, just a bit of a twinge in the rectom, and within a few minutes it is full blown.

I also wanted to mention that when this pain is full blown I have an extreme urge to have a bowl movement, the urge to push down, like in childbirth. It's like when I push down I get temporary relief.

Does this sound familiar to anyone.

Can anybody out there who has this problem tell me more about your experience, as I have an appointment with my doctor on Monday, and would like to discuss this with her.

Thanks

Deb

I don't really have anything to add to your description. I also get the "twinge" and then it gets progressively worse. I've never taken anthing for it--just wait it out. I also have no idea what causes it to come on--it's completely random. Pushing down, for me, does make it feel better for the moment, but then makes it worse. I try to relax the muscles a much as possible.

It will be interesting to hear what your doctor has to say.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Guest marshlakemom
I don't really have anything to add to your description. I also get the "twinge" and then it gets progressively worse. I've never taken anthing for it--just wait it out. I also have no idea what causes it to come on--it's completely random. Pushing down, for me, does make it feel better for the moment, but then makes it worse. I try to relax the muscles a much as possible.

It will be interesting to hear what your doctor has to say.

Ok Gals, I will try to talk to my doctor again about this. I have brought the issue up many times in the past with her, and she just shrugs her shoulders......Not sure there is anything we can do about it, but I would really like to know why persons with Celiac are prone to this pain.

http://Lame Advertisement/p/articles/mi_m322...v52/ai_17857184

I think, from reading this and other articles on the net, that this is just another "side" symptom/result of Celiac Disease, which causes us to have irritable bowel problem.

Any suggestions?

Deb

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Ok Gals, I will try to talk to my doctor again about this. I have brought the issue up many times in the past with her, and she just shrugs her shoulders......Not sure there is anything we can do about it, but I would really like to know why persons with Celiac are prone to this pain.

Any suggestions?

Deb

I don't know--I had a colonoscopy last year that was normal except for internal hemmorhoids. I am prone to D--never C, so I was surprised. That's the only thing I can think of in my case.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Guest marshlakemom
I don't know--I had a colonoscopy last year that was normal except for internal hemmorhoids. I am prone to D--never C, so I was surprised. That's the only thing I can think of in my case.

Hi

I think when we have a long history of either diarreah or constipation, it can only lead to irritable bowel problems. It is a strain on the bowels either way. Consequently, I think because of my long term bout with diarreah over the years (settled now unless I ingest gluten), my bowels are "screwed" up. (Can I say that ???..could have used a much stronger word, but I think you get the drift) Therefore the on-going problem of these awful annoying and painful episodes.

Just my humble opinion.

Deb

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Hi

I think when we have a long history of either diarreah or constipation, it can only lead to irritable bowel problems. It is a strain on the bowels either way. Consequently, I think because of my long term bout with diarreah over the years (settled now unless I ingest gluten), my bowels are "screwed" up. (Can I say that ???..could have used a much stronger word, but I think you get the drift) Therefore the on-going problem of these awful annoying and painful episodes.

Just my humble opinion.

Deb

That does make sense. After years of problems, it's no wonder that the muscles spasm.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Ok, hubby went to proctologist for hemorroids only to find that he doesn't have them, he has a prolapsed rectal lining due to years of misdiagosed celiac.

So he needs reconstruction done in sections, it's outpatient in his office but it'll take 3-4 procedures over the next 3-4 months.

So chalk another condition up to celiac.

Reason for connection: the celiac makes a lot "traffic" in the bowel area.

Deb, just wanted to say how unfair your hubby has to go through this- he's been through so much.

You really are using your ''illness of the month'' membership to the full :(

Hope the procedures give him some relief :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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gee. can't wait for next month's installment...


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

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

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

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

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

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

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

Developed neuropathy in 2005

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

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Deb, before your next issue "illness of the month" arrives, I think I would cancel the subscription.

I also have had the couple minutes to two hours of intense rectal pain. My GI told me what it was, but I don't remember. I don't think there is anything we can do for that type of pain. It does not seem to be what Deb's husband is expieriencing. What I do when the pain is not gone in a couple of minutes is I sit on a heating pad and that helps a lot.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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To those who have an idea of what they think they have...please consult with a Protologist before whatever it is you have gets worse. Since we cannot check this area, like we can look down our throats in a mirror, we cannot determine what is wrong.

I've had sphincter problems myself and went too long without seeing a proctologist and needed surgery in hospital. There's a condition known as "rectal fissure" which is connected to constipation which bleed and cause pain. Most people just assume that they have hemmorids and ignore it (like I did). With my problem, I needed my spincter muscle "nicked" so it would work better. So I can't say it any better, please consult with a proctologist about mysterious aliments like this.

I want to cancel that "illness of the month" subscription, but they keep changing their address.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

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

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

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

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

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

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

Developed neuropathy in 2005

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

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Guest marshlakemom
To those who have an idea of what they think they have...please consult with a Protologist before whatever it is you have gets worse. Since we cannot check this area, like we can look down our throats in a mirror, we cannot determine what is wrong.

I've had sphincter problems myself and went too long without seeing a proctologist and needed surgery in hospital. There's a condition known as "rectal fissure" which is connected to constipation which bleed and cause pain. Most people just assume that they have hemmorids and ignore it (like I did). With my problem, I needed my spincter muscle "nicked" so it would work better. So I can't say it any better, please consult with a proctologist about mysterious aliments like this.

I want to cancel that "illness of the month" subscription, but they keep changing their address.

Excellent advise ! We can't play around with our "differential", we need it too bad. LOL But it sounds to me like all this rectum pain is indeed connected to the celiac disease. But like you said, please consult with your doctor before leaving it too long, could be something more serious.

Take care, have a good day. Snow here today.....darn. Oh well, time for the winter boots and mitts I guess.

Deb

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Deb, I have an appointment with a new GI toward the end of next month. My GP wants me to have a colonoscopie because I am having constipation problems since last Dec. If I tell this GI doctor about the rectal pain, will he be able to see what is causing it when he does the colonoscopie? Please don't tell me that I will have to see another doctor.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Oh my. Hello. This is my first post here. I have no diagnosis yet, but have seen an integrative M.D. and a nutritionist and the nutritionist is convinced without any testing that both me and my 7 year old son have wheat/celiac intolerance/allergy. I am having to start with an intestinal permeability test for leaky gut. I can't even begin to list the number of things I have wrong with me (too depressing at the moment) Mainly, though I have neurologic problems with the main symptom being palpitations and rapid heartbeat (DX with POTS four years ago) and my son has asthma and allergies and fatigue/hyperactivity/focus issues.

I HAVE this same rectal pain and have had it for many years. I cannot even believe that this may all be coming from wheat. I actually feel I could cry that I may have an answer to a lot of my problems. I don't want to get my hopes up.

Is this all worse or happen more often around the time of your period?

What a thread to introduce myself on, but hi to everyone and look forward to getting to know all of you. I need all the support I can get right now. :blink:


Elaine 40

Diagnoses

Possible leaky gut

Wheat/gluten intolerance

Milk intolerance

Sugar intolerance

POTS (postural orthostatic tachycardia syndrome)

dysautonomia

rectal spasm/proctalgia fugax?

Polycystic ovarian syndrome

endometriosis

adenomysosis

multiple chemical sensitivity

infertility

two second trimester miscarriages

Family history

Mother with B12 deficiency, neurologic symptoms, tachycardia and early-onset dementia (has a terrible doctor who told her all these things are from anxiety)

Sister with multiple sclerosis and polycystic ovarian syndrome

Son with asthma, allergies, hyperactivity

Niece in remission from leukemia/asthma

Niece with polycystic ovarian syndrome

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I am having to start with an intestinal permeability test for leaky gut.

Welcome Elaine

Who cares what thread you come to join on..we're just glad your here.

Can you tell me what test your dr is doing to prove Leaky gut.

i'm needing to be tested for that also

Good luck

were glad you joined.

judy in philly


Judy in Southern CA

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