newby
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newby
I'm so glad I found this forum. I have had GI issues for as long as I could remember. Had a colonoscopy 7 years which showed masocytic enterocolitis which my GI doctor had never heard of before. He called a fellow doctor who suggested I take Zyrtec but he was unsure why. Now 7 years later, I am very ill. I can barely eat anything without staying close to a private potty. A month ago had a horrible flare, could not eat for 3 days b/c of the D and pain. I then cut dairy out (which I knew probably was causing the issues) and then cut the gluten out b/c of everything I had read on line. I also have two autoimmune disorders. Hoshimotos and sjorgen's. This site has helped me alot in that I now know what to do. I made an appointment to go see my GI so I can share what I found and hope that he will back me up on the plan to give all of these recommendations, pepto, zyrtec, get back on questran again and stay dairy, gluten free. it would be nice if he could send me for allergy testing. I am still not close to 60% better but hoping to be better soon.
cmiller
Hi,
Welcome to our Internet family. I'm impressed that your GI doc and your pathologist were able to diagnose ME 7 years ago, but not surprised that most doctors wouldn't know how to treat it.
If you haven't read them yet, the short articles at the following links should be helpful for getting you started on your recovery plan:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I'm impressed that your GI doc and your pathologist were able to diagnose ME 7 years ago, but not surprised that most doctors wouldn't know how to treat it.
If you haven't read them yet, the short articles at the following links should be helpful for getting you started on your recovery plan:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Again, welcome aboard, and please feel free to ask anything.
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.
We are very glad you found us. You might want to learn about Low Dose Naltrexone (LDN) which may help the help the autoimmune diseases that you have.
http://www.ldnresearchtrust.org/ Something has happened with their You Tube informational and testimonial videos but they are trying to put them on Vimeo now.
http://www.biznews.com/health/2014/02/v ... -syndrome/
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Welcome! So glad you found us. You are off to a good start with eliminating gluten and dairy, but you've probably read on some of our posts that many of us react to more than just gluten and dairy. it seems the longer we are sick, the more food intolerances we have. Since you are only 60%, you might want to also eliminate soy. it sneaks into many processed foods. Eggs are the other food that rounds out the "top four" ( although I can eat eggs)
My reactions are also more due to mast cell/histamines. I have found that taking an Allegra in the am and a Benadryl in the pm helps a lot. When I know I will be eating a high histamine food, I will also take an h-2 antihistamine ( like pepcid), but don't make a habit of it. Google "high histamine foods" to get a list of foods that may be adding to your problems.
Another habit that can hinder healing is eating foods with fiber. Citrus, acid ( like tomato), and caffeine can also pose problems. RAW fruits and veggies should be avoided for now, as should beans and legumes. Down the road, when you are in remission, you can test these "irritants" back in. I have been able to add many foods back into my diet since my Dx three years ago. So, there is good news. Now is the time to eat very simply. Meat and fish ( proteins) help heal the gut. Most of us can eat white rice and cooked easy to digest veggies like carrots, squash and green beans. Maybe some GF chex cereal with almond milk. Drink water and herbal tea. Use only olive oil and coconut oil. We are all a bit different with what we can and can not eat. Some of us can't eat nightshades, but I am OK with them ( but I didn't test them until after 6 months of healing),
It's a journey that takes patience and perseverance. Many times it will seem like two steps forward, one step back.
I hope you find your way back to good health. We are here to help. Ask anything
Good luck and keep us posted
Leah
My reactions are also more due to mast cell/histamines. I have found that taking an Allegra in the am and a Benadryl in the pm helps a lot. When I know I will be eating a high histamine food, I will also take an h-2 antihistamine ( like pepcid), but don't make a habit of it. Google "high histamine foods" to get a list of foods that may be adding to your problems.
Another habit that can hinder healing is eating foods with fiber. Citrus, acid ( like tomato), and caffeine can also pose problems. RAW fruits and veggies should be avoided for now, as should beans and legumes. Down the road, when you are in remission, you can test these "irritants" back in. I have been able to add many foods back into my diet since my Dx three years ago. So, there is good news. Now is the time to eat very simply. Meat and fish ( proteins) help heal the gut. Most of us can eat white rice and cooked easy to digest veggies like carrots, squash and green beans. Maybe some GF chex cereal with almond milk. Drink water and herbal tea. Use only olive oil and coconut oil. We are all a bit different with what we can and can not eat. Some of us can't eat nightshades, but I am OK with them ( but I didn't test them until after 6 months of healing),
It's a journey that takes patience and perseverance. Many times it will seem like two steps forward, one step back.
I hope you find your way back to good health. We are here to help. Ask anything
Good luck and keep us posted
Leah
Just Joined
Believe it or not I am a healthcare professional who works with a Gastroenterologist. Until I screamed and fought with my GI that what I had was not IBS, and he sent me to another doc, I was not diagnosed correctly with MC. I read Wayne's Book (a while back) and he covered most of what I already knew about MC but I still had trouble getting an official diagnosis. The first GI would not even do a colonic biopsy until I insisted. Then he only did "one" in the sigmoid colon which was negative "to shut me up." So I sympathize with all those who had trouble getting properly diagnosed! I was initially prescribed Entocort but decided I did not want to take "meds" long term so I am now managing my MC with diet and supplements. I found this forum several months back but only joined yesterday. I hope to learn more and maybe help others by joining.
Hi Ann,
Welcome to our Internet family. Trust me, most of us can easily believe how difficult it was to convince your GI docs to do their job. IMO their main problem is their invalid assumption that they understand MC. The best training they could receive would be for them to experience the syndrome for themselves for a month or 3, so that they could afford to take the time to learn a few things about it.
Again, welcome aboard. It's always a pleasure to exchange ideas and information with medical professionals who have an open mind and a burning desire to learn the truth.
Tex
Welcome to our Internet family. Trust me, most of us can easily believe how difficult it was to convince your GI docs to do their job. IMO their main problem is their invalid assumption that they understand MC. The best training they could receive would be for them to experience the syndrome for themselves for a month or 3, so that they could afford to take the time to learn a few things about it.
Again, welcome aboard. It's always a pleasure to exchange ideas and information with medical professionals who have an open mind and a burning desire to learn the truth.
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.
Welcome CMiller!
You've been through the wringer like so many here. You are definitely in the right place, these people are Angels. Great to hear you are doing better but I am sure you will learn a lot and get ever more better with the help of folks here.
I am a newbie, with little knowledge, but it growing thanks to this site. I educated the Nurse Practitioner at my GI office yesterday.
My LC was diagnosed after 2 months of D, I am grateful for that. Waiting to get testing done to see what else besides gluten I need to eliminate so I don't end up worse.
Summer
You've been through the wringer like so many here. You are definitely in the right place, these people are Angels. Great to hear you are doing better but I am sure you will learn a lot and get ever more better with the help of folks here.
I am a newbie, with little knowledge, but it growing thanks to this site. I educated the Nurse Practitioner at my GI office yesterday.
My LC was diagnosed after 2 months of D, I am grateful for that. Waiting to get testing done to see what else besides gluten I need to eliminate so I don't end up worse.
Summer
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twirlitgirl
- Adélie Penguin
- Posts: 181
- Joined: Thu Aug 21, 2014 5:46 am
- Location: Canada
Welcome Ann,
I am a newbie too and have gotten such great advice , there is always someone in this community out there that knows just what to say to make the
day a little brighter dealing with this disease. stay upbeat and know that you aren't alone anymore. help is found here to lead you on your journey to remission. knowledge is power in your hands.
cheers
Lora
I am a newbie too and have gotten such great advice , there is always someone in this community out there that knows just what to say to make the
day a little brighter dealing with this disease. stay upbeat and know that you aren't alone anymore. help is found here to lead you on your journey to remission. knowledge is power in your hands.
cheers
Lora
diagnosed with LC by biopsy
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
in May 2013 , supplements B complex, Vit C ,Vit D3 Zinc, with a multivitamin, and magnesium to round out the pack.
Hi All:
Thanks for the warm welcome!
My specialty is nutrition and I have an advanced degree (Doctorate) in that area. However, I have been into alternative medicine for many years. My own autoimmune issues forced me to leave a career in laboratory medicine and take a look at alternative medicine. I then decided to study nutrition.
Like so many of you, I have experienced the inability of allopathic MD's to understand the important role diet plays in so many autoimmune conditions and how each patient needs to seek out his/her own intolerances. Although, there are a lot of commonalities, like gluten.
I am so glad, Tex, that you mentioned that if these doc's just had this disease, (for at least 6 months IMO, LOL) they would not be so quick to blow patients off and minimize how disruptive it can be to one's life.
Thanks for being here!
Ann
Thanks for the warm welcome!
My specialty is nutrition and I have an advanced degree (Doctorate) in that area. However, I have been into alternative medicine for many years. My own autoimmune issues forced me to leave a career in laboratory medicine and take a look at alternative medicine. I then decided to study nutrition.
Like so many of you, I have experienced the inability of allopathic MD's to understand the important role diet plays in so many autoimmune conditions and how each patient needs to seek out his/her own intolerances. Although, there are a lot of commonalities, like gluten.
I am so glad, Tex, that you mentioned that if these doc's just had this disease, (for at least 6 months IMO, LOL) they would not be so quick to blow patients off and minimize how disruptive it can be to one's life.
Thanks for being here!
Ann