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Gastroparesis?


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#16 2inoklahoma

 
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Posted 01 January 2009 - 07:30 AM

Gastroparesis-Well I noticed an old blog from Julie. A lot of time has passed since her post. I hope she found some answers. I just wanted to say that I was first diagnosed with Celiac and attended several meetings. I noticed that some had the classic symptoms and some didn't. When I started having trouble with casein (found in milk products) and most meat and wheat gluten I realized that there may be more that I didn't know. Come to find out I have Mast Cell Mediated Eosinophilic Gastroparesis. I had a lot of other symptoms other than the "Celiac" symptoms. If this is the case then it may not be celiac it may be gastroparesis. I am now enteral fed with a tube in my stomach wall and get special liquid food. It is a small pain to deal with but I am still working a regular schedule. Before that I thought I would have to quit work. If anyone wants to know the symptoms I had email me at 2inoklahoma@cox.net

I did not realize things like my headaches, fibromyalgia, narcolepsy, sleep apnea etc was from gastroparesis and cause by ALL FOOD.

The doctor takes a patient off of all food, does enteral feeding for a while then slowly starts adding it back.

Ignoring this will cause malabsorption of vitamins and minerals and can cause osteoporosis and problems with the heart to just name a few. <_<

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#17 2inoklahoma

 
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Posted 01 January 2009 - 07:50 AM

Most if not all of these symptoms go away with enteral feeding ran diluted Ĺ strength and slow if using FAA (Free amino acid formula) or full strength Vivonex TEN (total enteral nutrition)

Memory impairment
Anxiety
Nervousness
Shaking
Facial and throat swelling with throat itching, sometimes near obstruction (obstruction with dental procedures) frequent choking, difficulty swallowing
Tonsil tags, adenoids that grow back
Elongated swollen uvula
Raccoon eyes
Lost sense of smell
Head sores
Hair loss
Flaking scalp
Dry skin, intense itching
Itchy eyes
Runny nose
Stuffy nose, sometimes blocked sinuses and nose
Fluid in ears/congestion and pain
Ringing in ears
Ear discharge
Sores in mouth and throat
Cold sores and peeling inside mouth
Cracked lips
Peeling lips
Swollen bleeding gums, and swollen tongue
Dental Caries
Sore throat
Throat swelling
Wheezing, coughing
Sputum
Chest pain, mitral valve prolapse with tricuspid valve regurge
Shortness of breath
Heart rate 180 with arrhythmias
Fainting
Dizziness
Fatigue
Exhaustion
Low blood pressure,
Tension, muscle aches and nodules
Migraine Headaches
Fever, difficulty regulating temperature, heat intolerance, hot flashes, intense sweating
Flushing head to toe, veins pop out with attacks, flu type feeling/symptoms, red palms
Nausea
Vomiting
IBS with decreased to no bowel sounds with food ingestion
General intense weakness
Heart burn, reflux
Burning stomach
Abdominal pain
Raynodís Syndrome
Swollen Lymph glands
Back pain
Spine bone spurs
Bulging discs, loss of disc volume
Cysts, hand, wrist, 8 in breasts
Torn Cartilage
Fibromyalgia, nodules
Body Swelling, face, hands, feet, kidneys, bladder, legs, throat etc
Restless legs, cramps, pain, bone pain
Fluid retention/weight gain
Edema
Swelling Aching joints, stiffness, torn meniscus and cartilage
Arthritis
Sore feet to the point I canít walk
Balance problems, vertigo, tripping, stumbling
Dehydration, thirst, decreased nutrient absorption
Bloating, fullness
Bruising easily
Heat intolerance
Ridges in nails
Nails donít grow
Frequent infections-pneumonia, bronchitis, ears, bladder, yeast or fungus on eyebrow, vaginitis, yeast infections
Kidney pain, Urine retention, spasms, and increased frequency of urination, urgency
Bumps on skin-itchy pimple like and raised red round eraser size itchy dots
Enteral Fed
Bleeding stomach
Swelling around Mic-key button
Rash around Mic-key
Itching-inside and out
Anemia
Narcolepsy
Sleep apnea :huh:
It sounds crazy but with enteral food it all goes away after a short while.

email me at 2inoklahoma@cox.net if you want
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#18 AliB

 
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Posted 01 January 2009 - 10:24 AM

What is in the enteral food?

I ask that because so many do not recover on a gluten-free diet, even though they are intolerant of it. The problem is often far more complex than that and I firmly believe that gut dysbiosis caused by stress and trauma, or certain drugs including antibiotics that decimate the good gut flora and leave us vulnerable to infestation by pathogenic microbes/parasites, is far more likely to be the cause of the gluten and other food intolerances.

Many of us cannot process or digest carbs properly for whatever reason - and I suspect microbial again as some of the little beggars can actually switch off enzymes and, in the case of Helicobacter, dilute stomach acid and that will contribute to the cycle of damage. The lack of or diluted stomach acid prevents the esophageal sphincter closing properly, which contributes to GERD and also means that the correct enzymes are not triggered to released properly when the food enters the duodenum.

The more damaged the gut gets, the harder it is for it to digest the food. The more undigested food, particularly carbs, the more prolific the microbes get and the more damage - a spiralling cycle. The more damage and inflammation, the higher the gut perforation and the higher incidence of allergic or intolerance reactions as particles get through the gut wall into the bloodstream where they should not be.

The resulting constantly high-alert immune system will trigger defense reactions anywhere in the body - many of the microbes release known toxins in response to the food and they often mimic proteins in the body that the immune system will attack in its attempt to destroy the pathogens.

Quite a few of us on the forum, frustrated by our thwarted recovery on just gluten-free have started following the Specific Carbohydrate Diet (SCD) which removes the foods that feed the microbes and encourages gut 'reflorestation' with probiotic yogurt etc. It is similar to the Paleolithic Diet and concentrates just on basic foods, meat, fish, poultry, fruit, veg, nuts, honey and the yogurt, and removes anything processed, all grains and starches and sugar and most dairy products. We are all gradually healing.

You may well be experiencing a remission of your symptoms because the enteral feeding is providing you with nutrients and substances that are not contributing to the damage and are allowing the gut to gradually heal. Do you still drink, or is all your food directed via your tube?

If mast cells are involved then your body is obviously trying to protect itself. Did you ever try an elimination diet before you were diagnosed?
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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

#19 2inoklahoma

 
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Posted 01 January 2009 - 01:27 PM

Enteral feeding is a medical food that is as simplified as possible. My Vivonex TEN is a powder similar to baby formula but without the whey lactose etc. It is ran over a period of 8-12 hours day or night. I choose day because I got up all night having to pee. My friend ran hers and night.

I do drink coffee now and some soda and tea. I rarely drink the soda. I have the capability to eat but usually don't. I did the elimination thing one thing at a time until there was absolutely nothing left and I was still sick, only drinking gluten free, lactose free slim fast trying to get my vitamins and eating peaches. I was still sick so I told the doctor that I was ready for the enteral food.

I had a colonoscopy and it didn't come up with any microbes just inflammation and blunting. I was healing fairly quick at first and felt like a million bucks then I started reintroducing food again slowly and wham! I was sick again. I also love food and have a house full of always eating people that makes it really hard.

I can not eat meat, any type of yogurt, honey, or nuts. I can have some "P" fruits. It just so happens that most of the lower allergy fruits start with "P". I can have peaches pealed, plums pealed, pears pealed. I can not have anything during high seasonal allergy times because I am already struggling at that point. The doctor wants me to try lamb and turkey and rice. NOTHING ON IT. Which makes it yucky and not worth eating. Taste is everything to me.

I have had a ruptured appendix and sepsis but I can see symptoms of this disease early on in my life that just got worse and worse as I aged. I am now 40. I had reached the point that I was vitamin deficient and getting very sick. I have osteopenia. I noticed that when I had an infection which I got frequently that one round of oral antibiotics was never enough due to malabsorption so I often would get an injection of antibiotic. I don't usually get an infection of any kind and I work as a Respiratory Therapist around some really sick people.
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#20 2inoklahoma

 
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Posted 28 March 2009 - 05:05 PM

What is in the enteral food?

I ask that because so many do not recover on a gluten-free diet, even though they are intolerant of it. The problem is often far more complex than that and I firmly believe that gut dysbiosis caused by stress and trauma, or certain drugs including antibiotics that decimate the good gut flora and leave us vulnerable to infestation by pathogenic microbes/parasites, is far more likely to be the cause of the gluten and other food intolerances.

Many of us cannot process or digest carbs properly for whatever reason - and I suspect microbial again as some of the little beggars can actually switch off enzymes and, in the case of Helicobacter, dilute stomach acid and that will contribute to the cycle of damage. The lack of or diluted stomach acid prevents the esophageal sphincter closing properly, which contributes to GERD and also means that the correct enzymes are not triggered to released properly when the food enters the duodenum.

The more damaged the gut gets, the harder it is for it to digest the food. The more undigested food, particularly carbs, the more prolific the microbes get and the more damage - a spiralling cycle. The more damage and inflammation, the higher the gut perforation and the higher incidence of allergic or intolerance reactions as particles get through the gut wall into the bloodstream where they should not be.

The resulting constantly high-alert immune system will trigger defense reactions anywhere in the body - many of the microbes release known toxins in response to the food and they often mimic proteins in the body that the immune system will attack in its attempt to destroy the pathogens.

Quite a few of us on the forum, frustrated by our thwarted recovery on just gluten-free have started following the Specific Carbohydrate Diet (SCD) which removes the foods that feed the microbes and encourages gut 'reflorestation' with probiotic yogurt etc. It is similar to the Paleolithic Diet and concentrates just on basic foods, meat, fish, poultry, fruit, veg, nuts, honey and the yogurt, and removes anything processed, all grains and starches and sugar and most dairy products. We are all gradually healing.


You may well be experiencing a remission of your symptoms because the enteral feeding is providing you with nutrients and substances that are not contributing to the damage and are allowing the gut to gradually heal. Do you still drink, or is all your food directed via your tube?

If mast cells are involved then your body is obviously trying to protect itself. Did you ever try an elimination diet before you were diagnosed?

I first did a gluten free diet and was still sick. Then noticed a reaction to rice. Then meat next was dairy. I was down to peaches and gluten free lactose free slim fast. I was getting sicker and sicker. Still having reactions I went back to the doctor and asked for the enteral tube. I have been doing without any other food and only drinks allowed by the doctor. He has started reintroducing the least allergic foods. Rice, peaches peeled, plums peeled, pineapple (I can't eat them yet) blueberries. Next was lamb and turkey. Rice milk. Coffee and soda no cream or milk. Now I can eat potatoes plain. So far that is it. Email me at 2inoklahoma@cox.net if you have more questions or at least let me know there is a new post and I will respond.
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#21 graphicsman1

 
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Posted 01 January 2010 - 10:03 PM

I was reading your posting on celiac.com. I was diagnosed with celiac in 2003 and did "ok" on the gluten-free diet and my chronic diarehha dissappeared...then in 2006 I was told I had mild colitis and cleared up the diareahha this time with the SCD diet. I am a true celiac. I can have 2 crumbs of gluten and I am puking in 1 hour.
In 2007, I began having sternum pain and at times like a stuck belch...the pain dissappeared from summer of '07 to spring of '08 then it was unbearable and I was then given a Gastric Emptying Study and told I had gastroparesis.
I do not have diabetes and I am unsure of the cause of my gastroparesis. I have begun wondering if I have some type of Eosinophilic disorder. I have read where there is a strong theory that some people with Eosinophilic problems also have "leaky gut syndrome".
I live in rural Mississippi, and need to see if I can get further diagnosis. I had a thriving career prior to gastroparesis. I want to see a specialist to get further clarity on my digestive problems.
I also have lots of reactions to medication.
My eyes look like a racoon and they have for years. I truly believe I have many, many allergy problems.
What kind of doctor should I see, an allergist or a better gastroenterologist? In some way I think my celiac disease has damaged my Vagus nerve causing my gastroparesis...I have also pondered if my allergies have damaged my digestive system in some way. There just seems to be a high number of people with both celiac and gastroparesis.
I look forward to hearing from you!

Kenny
Celiac, Gastroparesis, Microscopic Colitis

Most if not all of these symptoms go away with enteral feeding ran diluted Ĺ strength and slow if using FAA (Free amino acid formula) or full strength Vivonex TEN (total enteral nutrition)

Memory impairment
Anxiety
Nervousness
Shaking
Facial and throat swelling with throat itching, sometimes near obstruction (obstruction with dental procedures) frequent choking, difficulty swallowing
Tonsil tags, adenoids that grow back
Elongated swollen uvula
Raccoon eyes
Lost sense of smell
Head sores
Hair loss
Flaking scalp
Dry skin, intense itching
Itchy eyes
Runny nose
Stuffy nose, sometimes blocked sinuses and nose
Fluid in ears/congestion and pain
Ringing in ears
Ear discharge
Sores in mouth and throat
Cold sores and peeling inside mouth
Cracked lips
Peeling lips
Swollen bleeding gums, and swollen tongue
Dental Caries
Sore throat
Throat swelling
Wheezing, coughing
Sputum
Chest pain, mitral valve prolapse with tricuspid valve regurge
Shortness of breath
Heart rate 180 with arrhythmias
Fainting
Dizziness
Fatigue
Exhaustion
Low blood pressure,
Tension, muscle aches and nodules
Migraine Headaches
Fever, difficulty regulating temperature, heat intolerance, hot flashes, intense sweating
Flushing head to toe, veins pop out with attacks, flu type feeling/symptoms, red palms
Nausea
Vomiting
IBS with decreased to no bowel sounds with food ingestion
General intense weakness
Heart burn, reflux
Burning stomach
Abdominal pain
Raynodís Syndrome
Swollen Lymph glands
Back pain
Spine bone spurs
Bulging discs, loss of disc volume
Cysts, hand, wrist, 8 in breasts
Torn Cartilage
Fibromyalgia, nodules
Body Swelling, face, hands, feet, kidneys, bladder, legs, throat etc
Restless legs, cramps, pain, bone pain
Fluid retention/weight gain
Edema
Swelling Aching joints, stiffness, torn meniscus and cartilage
Arthritis
Sore feet to the point I canít walk
Balance problems, vertigo, tripping, stumbling
Dehydration, thirst, decreased nutrient absorption
Bloating, fullness
Bruising easily
Heat intolerance
Ridges in nails
Nails donít grow
Frequent infections-pneumonia, bronchitis, ears, bladder, yeast or fungus on eyebrow, vaginitis, yeast infections
Kidney pain, Urine retention, spasms, and increased frequency of urination, urgency
Bumps on skin-itchy pimple like and raised red round eraser size itchy dots
Enteral Fed
Bleeding stomach
Swelling around Mic-key button
Rash around Mic-key
Itching-inside and out
Anemia
Narcolepsy
Sleep apnea :huh:
It sounds crazy but with enteral food it all goes away after a short while.

email me at 2inoklahoma@cox.net if you want


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#22 graphicsman1

 
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Posted 01 January 2010 - 10:06 PM

I was reading your posting on celiac.com. I was diagnosed with celiac in 2003 and did "ok" on the gluten-free diet and my chronic diarehha dissappeared...then in 2006 I was told I had mild colitis and cleared up the diareahha this time with the SCD diet. I am a true celiac. I can have 2 crumbs of gluten and I am puking in 1 hour.
In 2007, I began having sternum pain and at times like a stuck belch...the pain dissappeared from summer of '07 to spring of '08 then it was unbearable and I was then given a Gastric Emptying Study and told I had gastroparesis.
I do not have diabetes and I am unsure of the cause of my gastroparesis. I have begun wondering if I have some type of Eosinophilic disorder. I have read where there is a strong theory that some people with Eosinophilic problems also have "leaky gut syndrome".
I live in rural Mississippi, and need to see if I can get further diagnosis. I had a thriving career prior to gastroparesis. I want to see a specialist to get further clarity on my digestive problems.
I also have lots of reactions to medication.
My eyes look like a racoon and they have for years. I truly believe I have many, many allergy problems.
What kind of doctor should I see, an allergist or a better gastroenterologist? In some way I think my celiac disease has damaged my Vagus nerve causing my gastroparesis...I have also pondered if my allergies have damaged my digestive system in some way. There just seems to be a high number of people with both celiac and gastroparesis.
I look forward to hearing from you! Please feel free to email me at graphicsman1@hotmail.com

Kenny
Celiac, Gastroparesis, Microscopic Colitis


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#23 RollingAlong

 
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Posted 16 January 2010 - 09:40 AM

The Bernstein Diabetes forum also has discussion on Gastroparesis. He believes the nerve damage can be reversed with time and recommends supplements to assist with this.

http://tinyurl.com/ylrdyrc
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