Celiac Disease Support Group
Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...
I am also new to the board, but have been with D.S. for many years with other medical issues.
I have had the blood work done for Celiac, she didn't tell me any #'s but said, she was happy to report results of labs they ordered (During & after colonoscopy) were with-in normal limits, other than "equivocal," antibody tests for Celiac Disease.
I am to make the appt for the EGD, upper GI endoscopy. Of course she was out of town, her nurse not there, so I have no answered questions.
The colonoscopy found, as it did last time, ulcer in colon confirming, "Solitary Rectal Ulcer Syndrome." ( Large circumferential rectosigmiod ulcer)
Last time she told me it was a "Laceration," biopsy results were non malignant both times. She also confirmed for second time, Diverticulosis in the sigmoid colon.
This stomach thing began years ago with my Gal Bladder. Stones were there but missed because there was no use of the contrast dye with C.A.T scans. There was also a soft ball, or grapefruit sized growth hiding behind the gal bladder which was removed from my intestine at the same time.
After surgery was severe pain because I was/am a Chronic Pain patient with spine disease and injuries, and they didn't medicate the post surgical pain enough until almost the end of the 2nd day after surgery. ( this was hell)
The stomach acids continued to be severe enough to medicate with prescription strength antacids for a year after removal of gal bladder. Yet, I was able to eat food again without the bloating, and chronic discomfort digesting and passing through foods.
Then seemingly over night, the acid disappeared. No need for medications or even a tums.
I have been on extended release pain medications for 9 years now for the spine issues. After the surgery about 9 months to a years time I began to stop digesting certain things like skins of tomato, beans, nuts, etc. I kept reporting these things to all the different doctors I have had to see, and the list is significantly long!
Not until I was almost in complete detox of my pain medications did my pain management doc finally hear me.
I don't have ability to digest the capsules with extended release little beads, they pass right through as tiny beads and all I digest is the outer gelatin capsule. So I was put back on tablets and have been careful to explain to each doc this new problem. @ years and finally they decide to hear my words and the 2nd colonoscopy was ordered, but for the bleeding ulcer, not for the fact that I am starving and cannot eat!!! nor for the fact that I get almost no pain relief from the extended release pain meds. I will ;-) any way!!!
(Reminds me of the song by Led Zepplin, 'Communication Break-down!)
The gal bladder surgery was approx 2-3 yrs ago. I had about 1 yr of good eating and not a lot of problems except for periods with diverticulosis, and the ulcer leaking blood and mucus. I assume the diverticulosis is cause of infectious looking puss. There have been times where I have passed tissue looking subdtance, as if the inside of skin were scraped and small pieces, which I assume is ulcer too?
I have more questions than answers. My daughter says, " Welcome to Medical care In America."
All these different medical issues at once in last decade between turning 40 and 50 years old have worn me out. Disability has helped with not being able to work for a living and all the medical finances. However, my life seems to have been just taken away from me.
One thing after another. Chronic pain, which has never been medicated enough to have much activity. Spine disease and injuries, so if I do have activity of any physical kind, I pay for in more pain. And now malabsorption of medications, food nutrients, with many types of foods slowly being taken off the okay to eat list..... Feels as if I am wasting away with no good options to slow the diseases, discomfort, or any of the added complications down.
It becomes a frightening thing much of the time just to wake up and attempt to have a day in the life of me! ;-)
So, I will now, again, attempt to learn from you who have been experiencing this longer than I have.
I have not an idea what I would have done the past 5 years without Daily Strength, and the awesome people who gravitate toward the boards here. All of us dealing with serious life issues, yet we come here suffering and give love, vital information, and most importantly, support of the human connection.
I look forward to sharing what I find out from my doctor, and what I figure out on my own. I look forward to any advice and all support anyone has with this disease.
Of course I have not had the biopsy done yet so I am not certain of the diagnosis, yet most experiences are pointing in this direction.
I am so hungry, and so afraid to eat!
I lost another 10-15 lbs. in past 3 months.
Okay, long enough post and introduction. I will begin to read your stories and posts, and gathered experience. Appreciation & thanks in advance. Wishing all to be well.
In Love Light Truth & Service,
"Stubborn" TerrieAnn
ralop
(ralop is just Polar backward, someone else had my favorite bear's name when I 1st began using the web, e-mail, etc.)
t
I have had the blood work done for Celiac, she didn't tell me any #'s but said, she was happy to report results of labs they ordered (During & after colonoscopy) were with-in normal limits, other than "equivocal," antibody tests for Celiac Disease.
I am to make the appt for the EGD, upper GI endoscopy. Of course she was out of town, her nurse not there, so I have no answered questions.
The colonoscopy found, as it did last time, ulcer in colon confirming, "Solitary Rectal Ulcer Syndrome." ( Large circumferential rectosigmiod ulcer)
Last time she told me it was a "Laceration," biopsy results were non malignant both times. She also confirmed for second time, Diverticulosis in the sigmoid colon.
This stomach thing began years ago with my Gal Bladder. Stones were there but missed because there was no use of the contrast dye with C.A.T scans. There was also a soft ball, or grapefruit sized growth hiding behind the gal bladder which was removed from my intestine at the same time.
After surgery was severe pain because I was/am a Chronic Pain patient with spine disease and injuries, and they didn't medicate the post surgical pain enough until almost the end of the 2nd day after surgery. ( this was hell)
The stomach acids continued to be severe enough to medicate with prescription strength antacids for a year after removal of gal bladder. Yet, I was able to eat food again without the bloating, and chronic discomfort digesting and passing through foods.
Then seemingly over night, the acid disappeared. No need for medications or even a tums.
I have been on extended release pain medications for 9 years now for the spine issues. After the surgery about 9 months to a years time I began to stop digesting certain things like skins of tomato, beans, nuts, etc. I kept reporting these things to all the different doctors I have had to see, and the list is significantly long!
Not until I was almost in complete detox of my pain medications did my pain management doc finally hear me.
I don't have ability to digest the capsules with extended release little beads, they pass right through as tiny beads and all I digest is the outer gelatin capsule. So I was put back on tablets and have been careful to explain to each doc this new problem. @ years and finally they decide to hear my words and the 2nd colonoscopy was ordered, but for the bleeding ulcer, not for the fact that I am starving and cannot eat!!! nor for the fact that I get almost no pain relief from the extended release pain meds. I will ;-) any way!!!
(Reminds me of the song by Led Zepplin, 'Communication Break-down!)
The gal bladder surgery was approx 2-3 yrs ago. I had about 1 yr of good eating and not a lot of problems except for periods with diverticulosis, and the ulcer leaking blood and mucus. I assume the diverticulosis is cause of infectious looking puss. There have been times where I have passed tissue looking subdtance, as if the inside of skin were scraped and small pieces, which I assume is ulcer too?
I have more questions than answers. My daughter says, " Welcome to Medical care In America."
All these different medical issues at once in last decade between turning 40 and 50 years old have worn me out. Disability has helped with not being able to work for a living and all the medical finances. However, my life seems to have been just taken away from me.
One thing after another. Chronic pain, which has never been medicated enough to have much activity. Spine disease and injuries, so if I do have activity of any physical kind, I pay for in more pain. And now malabsorption of medications, food nutrients, with many types of foods slowly being taken off the okay to eat list..... Feels as if I am wasting away with no good options to slow the diseases, discomfort, or any of the added complications down.
It becomes a frightening thing much of the time just to wake up and attempt to have a day in the life of me! ;-)
So, I will now, again, attempt to learn from you who have been experiencing this longer than I have.
I have not an idea what I would have done the past 5 years without Daily Strength, and the awesome people who gravitate toward the boards here. All of us dealing with serious life issues, yet we come here suffering and give love, vital information, and most importantly, support of the human connection.
I look forward to sharing what I find out from my doctor, and what I figure out on my own. I look forward to any advice and all support anyone has with this disease.
Of course I have not had the biopsy done yet so I am not certain of the diagnosis, yet most experiences are pointing in this direction.
I am so hungry, and so afraid to eat!
I lost another 10-15 lbs. in past 3 months.
Okay, long enough post and introduction. I will begin to read your stories and posts, and gathered experience. Appreciation & thanks in advance. Wishing all to be well.
In Love Light Truth & Service,
"Stubborn" TerrieAnn
ralop
(ralop is just Polar backward, someone else had my favorite bear's name when I 1st began using the web, e-mail, etc.)
t
'
The problem is that celiac is genetic. If you have the gene, gluten can cause damage. If you are sick, it can't hurt to stop gluten and see what happens.
If you feel better, great. If not, you have maybe eliminated something from the possibilities.