I have multiple health issues. Autoimmune diseases, Hypothyroid, Fibromyalgia, Scleroderma, Acne Rosacea, DDD, DJD, IBS @ Age 10 with Chronic Constipation/Diarrhea severe cramping, Now 50 with Chronic Diarrhea, DX-ed with tubular adenoma colon polyps, gastritis, bile reflux, acid reflux, High Inflammation, and DX'ed with Collagenous Colitis after last biopsies.
My question (for now) is: My gastro said it was unusual to have IBS at age 10. But I do have it and have had it since then. Chronic Constipation/Diarrhea with multiple ER visits that showed high inflammation and high white counts but it was not Appendicitis. Released always with diagnosis of IBS/gastroenteritis. This was a weekly issue for the past 40 years. 4 colonoscopes and 2 EGD's in the last 20 years. Always had colon polyps but were benign except for this time it was a tubular adenoma. Have had Gerd for over 10 years and just recently started having more diarrhea than constipation issues. They just now found the gastritis, bile reflux, and Collagenous Colitis today when biopsies came in.
Have any of you had the same issues? I can't find anyone with IBS since an early age and then at 50 getting MC also. It always says IBS with diarrhea prominent and MC but nothing about IBS constipation and diarrhea prominent and MC. I have had constipation all my life and hemorrhoids to prove it! Could I have always had Collagenous Colitis? It could only have been if you can have the symptom of constipation also for me. Because this didn't start without the constipation until the last month or two. What's up?
Thanks for any info!!!!
Cindy
NEWBIE! IBS-Const/Diarrhea @age 10 & CC @50
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Empressofq
- Posts: 4
- Joined: Tue Jul 26, 2011 1:51 am
NEWBIE! IBS-Const/Diarrhea @age 10 & CC @50
Autoimmune,Hypothyroid,Fibro,Scleroderma,Rosacea, DDD, DJD, IBS @Age10 with Chronic Const./Diarrhea, DX-ed with tubular adenoma colon polyps, gastritis, bile reflux, acid reflux, DX'ed with Collagenous Colitis after last biopsies.
Hi CIndy,
Welcome! You've come to the right place for some answers.
To answer your question, YES children get MC and IBS. We've had some memberes on this forum at a very young age (<5 yrs old). Childhood IBS is almost always related to undiganosed food sensitivities (gluten, dairy, corn etc). My son always has constipation despite eating lots of fiber and then began developing watery D, and it would alternate. Turns out he is gluten sensitive, dairy sensitve and very intolerant to corn - we figure this out at age 9. I'm not surprised by your doctor's comments - they really don't understand food sensitivity and how it affects MC and IBS, not to mention some of the other things you are experiencing like fibromyalgia, hypothyroid, and GERD.
Given your long list of symptoms I think you need to be addressing diet issues asap. You could do some testing like Enterolab and MRT to help the process go more quickly. Has your doctor done a celiac test? The vast majority of us here are sensitive to gluten and dairy, but other common problems are soy, egg, corn. SOme others, like me, have multiple sensitivities.
Again wlcome aboard. Feel free to ask any questions.
Mary Beth
Welcome! You've come to the right place for some answers.
To answer your question, YES children get MC and IBS. We've had some memberes on this forum at a very young age (<5 yrs old). Childhood IBS is almost always related to undiganosed food sensitivities (gluten, dairy, corn etc). My son always has constipation despite eating lots of fiber and then began developing watery D, and it would alternate. Turns out he is gluten sensitive, dairy sensitve and very intolerant to corn - we figure this out at age 9. I'm not surprised by your doctor's comments - they really don't understand food sensitivity and how it affects MC and IBS, not to mention some of the other things you are experiencing like fibromyalgia, hypothyroid, and GERD.
Given your long list of symptoms I think you need to be addressing diet issues asap. You could do some testing like Enterolab and MRT to help the process go more quickly. Has your doctor done a celiac test? The vast majority of us here are sensitive to gluten and dairy, but other common problems are soy, egg, corn. SOme others, like me, have multiple sensitivities.
Again wlcome aboard. Feel free to ask any questions.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Welcome, Cindy - You could have been describing me with your post. It was just a few days ago that I was reminiscing about being in and out of the hospital with severe pain, diarrhea and low weight at 8 years old. I was diagnosed with IBS in my 20's. I have hypothyroid, fibromyalgia, type 1 diabetes and have had what I thought was acne all my life. I was diagnosed with CC at age 47. So, I believe our stories, like many of us here, are pretty darn close.
I did the Enterolab tests and found that I have extremely high antibodies to gluten and also wam intolerant of eggs, dairy and soy. I also found out that I have one of the main genes for celiac and also a gene for gluten intolerance. Since going removing all of those things from my diet, the watery D has stopped, my aches and pains are diminishing and I am feeling overall, so much better. My GI told me he didn't think CC was food related at all. I think the proof is in the pudding, so to speak. I am also taking Entocort, which is a cortisone that is broken down in your intestines and mostly stays there, so you don't get the systemic problems that regular steroids, like predinose can cause. It works very well for me. It helps kee the watery D at bay. I don't recall you mentioning that you had watery D.. My colonocopy was done because of having it 10-15 times a day.
Sorry, I don't want to overwhelm you, but I just wanted to let you know that you are not alone. Your story, like so many of ours, is very common on this website. You have come to the right place for information. There is always at least one, but usually serveral people, who will have answers to any questions you might have.
Hugs,
I did the Enterolab tests and found that I have extremely high antibodies to gluten and also wam intolerant of eggs, dairy and soy. I also found out that I have one of the main genes for celiac and also a gene for gluten intolerance. Since going removing all of those things from my diet, the watery D has stopped, my aches and pains are diminishing and I am feeling overall, so much better. My GI told me he didn't think CC was food related at all. I think the proof is in the pudding, so to speak. I am also taking Entocort, which is a cortisone that is broken down in your intestines and mostly stays there, so you don't get the systemic problems that regular steroids, like predinose can cause. It works very well for me. It helps kee the watery D at bay. I don't recall you mentioning that you had watery D.. My colonocopy was done because of having it 10-15 times a day.
Sorry, I don't want to overwhelm you, but I just wanted to let you know that you are not alone. Your story, like so many of ours, is very common on this website. You have come to the right place for information. There is always at least one, but usually serveral people, who will have answers to any questions you might have.
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
Hi Cindy,
Welcome to our internet family. You've already received a lot of excellent advice, so about all I can add is that I totally agree with what Mary Beth and Denise have said, and to add that I had constipation all of my life, until my MC symptoms began, and after that, I had alternating D and C, until I eliminated gluten, dairy, soy, and a bunch of other things from my diet. Changing my diet not only eliminated the digestive problems, but it also eliminated the increasingly serious arthritis symptoms that I was having, along with migraines, chronic fatigue, aches and pains of all descriptions, and various other symptoms.
Incidentally, FYI, Mary Beth is not only a licensed dietitian, but she is probably the only diet and nutrition expert in this entire country, who truly understands microscopic colitis, mast cell disorders, and other issues that are associated with this family of diseases. She was forced to become an expert, because she has all those issues herself, and her doctors were unable to help her. We have found that no one truly understands this disease, unless they have it. Because the medical community is so far behind in their training and understanding of this disease, (especially concerning effective treatments), most of us have found it necessary to become our own advocate, and we have found it necessary to develop our own personal treatment program, in order to control all our symptoms, and get our life back.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. You've already received a lot of excellent advice, so about all I can add is that I totally agree with what Mary Beth and Denise have said, and to add that I had constipation all of my life, until my MC symptoms began, and after that, I had alternating D and C, until I eliminated gluten, dairy, soy, and a bunch of other things from my diet. Changing my diet not only eliminated the digestive problems, but it also eliminated the increasingly serious arthritis symptoms that I was having, along with migraines, chronic fatigue, aches and pains of all descriptions, and various other symptoms.
Incidentally, FYI, Mary Beth is not only a licensed dietitian, but she is probably the only diet and nutrition expert in this entire country, who truly understands microscopic colitis, mast cell disorders, and other issues that are associated with this family of diseases. She was forced to become an expert, because she has all those issues herself, and her doctors were unable to help her. We have found that no one truly understands this disease, unless they have it. Because the medical community is so far behind in their training and understanding of this disease, (especially concerning effective treatments), most of us have found it necessary to become our own advocate, and we have found it necessary to develop our own personal treatment program, in order to control all our symptoms, and get our life back.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Cindy
Welcome, Cindy - I hope you find your answers here. I have to agree with what others have already said. And I hope you have the same positive experience many of us have had here, with improvement or resolution of many symptoms in addition to digestive woes when you figure out your food intolerances and eliminate them.
For virtually every one of us, that means gluten is the #1 baddie, followed closely by dairy... and for quite a lot of us, soy and other legumes. Some people have many additional food irritants, while others have only a few.
Virtually every one of those conditions you list has been associated with gluten intolerance and/or celiac disease. I'll just pile on and agree that your doctor is wrong - but not alone in that error. I hope you begin finding your answers and your healing now that you've found this forum. Stumbling here was a lifesaver for me. I meant that figuratively when I first got here, but upon reflection, I think it's literally true.
Wishing you health and healing,
Sara
For virtually every one of us, that means gluten is the #1 baddie, followed closely by dairy... and for quite a lot of us, soy and other legumes. Some people have many additional food irritants, while others have only a few.
Virtually every one of those conditions you list has been associated with gluten intolerance and/or celiac disease. I'll just pile on and agree that your doctor is wrong - but not alone in that error. I hope you begin finding your answers and your healing now that you've found this forum. Stumbling here was a lifesaver for me. I meant that figuratively when I first got here, but upon reflection, I think it's literally true.
Wishing you health and healing,
Sara
Welcome, Cindy!
As another newbie, I can tell you that most of what I know about my CC diagnosis (and how to deal with it and have some semblance of a normal life) comes from the wonderful folks on this forum. Read the posts, use the search, and ask lots of questions. They know more than the docs do!
As another newbie, I can tell you that most of what I know about my CC diagnosis (and how to deal with it and have some semblance of a normal life) comes from the wonderful folks on this forum. Read the posts, use the search, and ask lots of questions. They know more than the docs do!
Pat C.
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
"Don't sweat the small stuff.
P.S. (It's all small stuff!)"
What you've been dx with is pretty normal for someone with food issues, and I agree with everything that the others have posted here.
In looking back at my medical history, I had constant "appendicitis" as a kid as well as endometriosis, which I had a hysterectomy for when I was 26 and that was followed by constant intestinal obstructions which eventually ended with my having a complete obstruction that had to be surgically removed and consisted of a leather shoelace like loop of scar tissue that had kinked off one loop of my intestine. I had asked the surgeon to check out my appendix while he was in there. He said my appendix had been surrounded by scar tissue that had basically killed it, it was completely atrophied. I now believe that I never had endometriosis, I just had scar tissue from intestines that were damaged by gluten.
I will be GF for 2 years as of next week and nearly all of my health issues have disappeared. I recommend the Enterolab tests. My grandson, myself, and now my daughter have been tested and all of us have the 501 gene that I so nicely passed on to them. Each of us have a different second gluten sensitive gene. My daughter was also dx with acid reflux and after years of taking meds for that, she found out that what she actually had was too much alkaline and she now uses apple cider vinegar when she is symptomatic.
I wonder if you have also had odd "infections" in your medical history. I ask this because I'm pretty convinced that I had MAP, which is pretty common for those with gluten sensitivity. In one year, the year before my dx with MC - both types - I had 7 UTI's. Finally did a massive dose of Cipro because I was convinced I had MRSA. Turns out that this is what would also kill MAP and later testing showed that I have no markers for having had MRSA. Haven't had even one UTI since then. MAP is clearly connected to gluten sensitivity and there's been lots of discussion on that here.
I wish you luck, you are in the right place for answers. You can get well by diet changes alone.
In looking back at my medical history, I had constant "appendicitis" as a kid as well as endometriosis, which I had a hysterectomy for when I was 26 and that was followed by constant intestinal obstructions which eventually ended with my having a complete obstruction that had to be surgically removed and consisted of a leather shoelace like loop of scar tissue that had kinked off one loop of my intestine. I had asked the surgeon to check out my appendix while he was in there. He said my appendix had been surrounded by scar tissue that had basically killed it, it was completely atrophied. I now believe that I never had endometriosis, I just had scar tissue from intestines that were damaged by gluten.
I will be GF for 2 years as of next week and nearly all of my health issues have disappeared. I recommend the Enterolab tests. My grandson, myself, and now my daughter have been tested and all of us have the 501 gene that I so nicely passed on to them. Each of us have a different second gluten sensitive gene. My daughter was also dx with acid reflux and after years of taking meds for that, she found out that what she actually had was too much alkaline and she now uses apple cider vinegar when she is symptomatic.
I wonder if you have also had odd "infections" in your medical history. I ask this because I'm pretty convinced that I had MAP, which is pretty common for those with gluten sensitivity. In one year, the year before my dx with MC - both types - I had 7 UTI's. Finally did a massive dose of Cipro because I was convinced I had MRSA. Turns out that this is what would also kill MAP and later testing showed that I have no markers for having had MRSA. Haven't had even one UTI since then. MAP is clearly connected to gluten sensitivity and there's been lots of discussion on that here.
I wish you luck, you are in the right place for answers. You can get well by diet changes alone.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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TooManyHats
- Rockhopper Penguin
- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
MAP stands for Mycobacterium avian subspecies paratuberculosis.
Some old threads:
http://www.perskyfarms.com/phpBB2/viewt ... obacterium
http://www.perskyfarms.com/phpBB2/viewt ... obacterium
http://www.perskyfarms.com/phpBB2/viewt ... obacterium
Tex
Some old threads:
http://www.perskyfarms.com/phpBB2/viewt ... obacterium
http://www.perskyfarms.com/phpBB2/viewt ... obacterium
http://www.perskyfarms.com/phpBB2/viewt ... obacterium
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
Thanks for posting the links. The third one still remains my favorite discussion we've had on here since I found you guys. Got all warm and fuzzy re-reading it. There is so much good information there and it made me remember just how wonderful you all are and how much you helped me when I was at my worst healthwise.
I found this blog today, doesn't appear that whoever the author is has remained active, but there are some great links in there: http://www.paratuberculosis.net/ and also on Wikipedia.
Thanks for posting the links. The third one still remains my favorite discussion we've had on here since I found you guys. Got all warm and fuzzy re-reading it. There is so much good information there and it made me remember just how wonderful you all are and how much you helped me when I was at my worst healthwise.
I found this blog today, doesn't appear that whoever the author is has remained active, but there are some great links in there: http://www.paratuberculosis.net/ and also on Wikipedia.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Connie,
Thanks for the link. That's a keeper. I'll have to reread it when I have more time to think about it.
Tex
Thanks for the link. That's a keeper. I'll have to reread it when I have more time to think about it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Empressofq
- Posts: 4
- Joined: Tue Jul 26, 2011 1:51 am
THANKS!
Thanks everyone for all the great info. Since I am just now reading this after 11 posts I won't be able to address each individually but will try to answer some of the questions. I know I don't have celiac. Been tested twice. Just had this EGD and full colonoscopy where they took samples up and down my whole body for biopsy testing for different things. No celiac, No H-Pylori, no cancer (although my colon polyp was precancerous and this was different than the other 4 times I had had colon polyps), bile gastritis(so bile reflux-gallbladder removed with 15 stones 3 years ago), fundic stomach polyps, diverticulosis, scarring from acid in esophagus from years of GERD, severe hemorrhoids, and yes I have watery D. 10-15 times a day with (nausea and vomiting-Dr. said from bile gastritis). This has only been going on for about 2 months but the Severe IBS(both const. and diarrhea) has been since age 10. No Chrohn's. Had hysterectomy @ age 2 for PID. Heart ablation @ age 46 for SVT. Carpal tunnel surgeries, hypothyroid with multiple nodules, both knees were repaired as well as they could be but I need new ones(I already had severe OA with no patella cartilage left), Neck and back surgeries for DDD, DJD, Spinal Chord Stimulator implanted under spinal bone, T&A @ age 12, TMJ, Migraines since age 12, Have had several ovarian cysts, kidney stones, gout, benign adenoma tumor removal on breast, over 30 breast fibroid cysts. I have seen 15 Drs. from Rheum., Gastro, Urologists, Cardiologists, Ortho, Derm. and on and on. Every test possible.
I have multiple chemical sensitivities since my first knee surgery in 2005 (almost all of this has only been since 01/05/05 after I fell and hurt my knees). Fibro, Lupus, Scleroderma, hypothyroid, depression, anxiety, CC, bile reflux...all after fall and these multiple surgeries, stress and trauma.
I have never had a food allergy that I know of. I now know for sure I don't have celiac. BUT since this all started I have started to notice I am becoming allergic to more and more meds. So I guess I could also be becoming allergic to foods as well. Lettuce and some veggies and milk greasy or fried and spicy foods seem to bother me occasionally.
Many of you mentioned a test (can't remember name or see it now while writing) for allergies. I am assuming it is for soy, dairy, gluten and some more. Is that right? I will def. mention this to my PCP. I know soy is in A LOT of stuff as filler.
I will have to reread each reply again to get down info but really want to thank you all for your help. With all of these issues in the last 6 years I have been on multiple messageboards and this is a fine one! I will start searching on here for more answers and hoping to get to know each of you better. Maybe I can help someone also. :)
Oh I almost forgot to add: for me the last 40 yrs. with IBS, the trigger has almost always been stress or an argument or getting upset about something, worrying etc. Inevitably the next day I will have an "attack"! I would say 98% of the time. I can almost time it!
Thanks Again,
Cindy
I have multiple chemical sensitivities since my first knee surgery in 2005 (almost all of this has only been since 01/05/05 after I fell and hurt my knees). Fibro, Lupus, Scleroderma, hypothyroid, depression, anxiety, CC, bile reflux...all after fall and these multiple surgeries, stress and trauma.
I have never had a food allergy that I know of. I now know for sure I don't have celiac. BUT since this all started I have started to notice I am becoming allergic to more and more meds. So I guess I could also be becoming allergic to foods as well. Lettuce and some veggies and milk greasy or fried and spicy foods seem to bother me occasionally.
Many of you mentioned a test (can't remember name or see it now while writing) for allergies. I am assuming it is for soy, dairy, gluten and some more. Is that right? I will def. mention this to my PCP. I know soy is in A LOT of stuff as filler.
I will have to reread each reply again to get down info but really want to thank you all for your help. With all of these issues in the last 6 years I have been on multiple messageboards and this is a fine one! I will start searching on here for more answers and hoping to get to know each of you better. Maybe I can help someone also. :)
Oh I almost forgot to add: for me the last 40 yrs. with IBS, the trigger has almost always been stress or an argument or getting upset about something, worrying etc. Inevitably the next day I will have an "attack"! I would say 98% of the time. I can almost time it!
Thanks Again,
Cindy
Autoimmune,Hypothyroid,Fibro,Scleroderma,Rosacea, DDD, DJD, IBS @Age10 with Chronic Const./Diarrhea, DX-ed with tubular adenoma colon polyps, gastritis, bile reflux, acid reflux, DX'ed with Collagenous Colitis after last biopsies.