Hello everybody,
I’m not exactly a newbie on LC but until a few days ago I think I was almost “in the dark” on what this diagnose meant. I thank this forum for shedding some light on, finally.
2 years ago I started to have symptoms of what I thought and was told to be food poisoning or gastroenteritis but I knew something was different: symptoms that wouldn’t go away after a few days, extreme fatigue, horrible nausea to the point it was a sacrifice to eat and losing weight really fast.
I went to several doctors, took several meds, didn’t get better, and for a month I couldn’t sleep and couldn’t get out of bed in the morning, mornings were terrible. I thought I was going crazy, people around me thought I was having a nervous breakdown, I almost started to believe that too.
When I finally decided to go to a GI she immediately knew it was an IBD, she suspected chron, and put me on Messalazina right away (it messed with my stomach though). Only then, but slowly, I started to notice some improvement on my health: nausea gave me a rest and could start to eat. A few days later, after a colonoscopy with biopsy, the diagnose was clear: LC. I also did a test that diagnosed me as (very) lactose intolerant. The GI was vague: Messalazina for crisis, take all dairy out. I love her, she cares, but I’m afraid she probably doesn’t have a lot of patients with this so she lacks experience.
Besides dairy, I also took other products from my diet because D. occasionally showed up: all dark green leafy vegetables, fruits like oranges or plums.
I got better, had some episodes, but nothing like the big one so I didn’t think other symptoms like constant fatigue were relevant for the matter. I also almost ran out of iron reservations in my system (I don’t know if this is the correct term in english) for a while.
About two weeks ago I started to have the worst symptoms again: I started by feeling extremely tired and then the terrible nausea and pain on my gut but no D. I started on Messalazina again. I’m not sure what happened but suspect of an increase of amount of soy in my diet or introducing tomatoes (not a lot of quantity though) or the continuous ingestion of gluten as I never knew we could be sensitive to.
I started to feel better a week after. So last Saturday I went gluten and soy free: bought some bread, cookies and snacks – no gluten, no lactose. To my surprise, on the second night of this diet, I had a terrible case of pain followed by a not less terrible D. A few hours after that, I started to experience short of breath and a sort of numbness in my hands and feet. I couldn’t understand this flare as I was trying my best to get on the right track, and then I realized all the things I bought were made of corn flour. I guess I discovered another food intolerance on a really bad timing, just when I was recovering from a bad crisis.
I’m sorry for this long text but I had to get it all out, this has been quite a battle these 2 years and although my family has been nothing but very supportive, I found in this forum stories like mine that confirm that my symptoms are real, not in my head and that LC is a real deal that won’t go away eventually, like my GI told me. Don’t get me wrong, I’m staying positive even though I’m in the middle of a bad bad crisis.
As you would expect, I have some questions:
Does anyone have crisis without any D with excruciating nausea and fatigue?
Does gluten intolerance appear to all of you only through D. or do your experience other symptoms?
Do some of you ever felt the short of breath and the numbness on hands and feet like I did (when corn was introduced on my diet)? This was new to me.
I also have come to conclude that summer usually brings a bad phase to my LC: more frequently tired and more episodes of crisis. Do any of you feel that too?
I’m sure I’ll have more questions but for now I don’t want to bore you.
Thank you all for being there.
Another newbie with a story and some questions...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Portianna,
Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it, and everyone here understands. Yes, based on your reaction, it is very likely that you are also allergic either to corn, or to something else in the meal that caused breathing difficulties and numbness in your hands and feet.
You don't have to take a medication to treat this disease, because the diet changes will bring remission, after the intestines begin to heal. This can take several months or more, though, because the intestines heal slowly from gluten damage. Taking a medication during that time can help to mask the symptoms, to make life more pleasant, but it will not speed up the healing process.
I'll try to answer your questions.
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. We consider ourselves a family because no one truly understands this disease unless they have it, and everyone here understands. Yes, based on your reaction, it is very likely that you are also allergic either to corn, or to something else in the meal that caused breathing difficulties and numbness in your hands and feet.
You don't have to take a medication to treat this disease, because the diet changes will bring remission, after the intestines begin to heal. This can take several months or more, though, because the intestines heal slowly from gluten damage. Taking a medication during that time can help to mask the symptoms, to make life more pleasant, but it will not speed up the healing process.
I'll try to answer your questions.
Yes, some of us have alternating diarrhea and constipation, some have constipation only, and some have neither, but they have abdominal pain and other symptoms, such as fatigue.Portianna wrote:Does anyone have crisis without any D with excruciating nausea and fatigue?
Although virtually all of us are sensitive to gluten, not everyone has D. Some have constipation, or alternating D and C, or neither. But most of us have aches and pains, or nausea, fatigue, etc.Portianna wrote:Does gluten intolerance appear to all of you only through D. or do your experience other symptoms?
Those are symptoms of a classic allergic reaction, associated with an anaphylactic reaction. The type of food sensitivities associated with MC do not normally cause those symptoms (shortness of breath, numbness, etc.), and reactions to food in the intestines take longer to cause symptoms. Allergic reactions (such as the one that you had) usually occur within 10 to 20 minutes after exposure to the allergen. So no, most of us do not have that type of reaction, because that type of reaction is not actually connected with MC.Portianna wrote:Do some of you ever felt the short of breath and the numbness on hands and feet like I did (when corn was introduced on my diet)? This was new to me.
Many of us have reactions that are affected by seasonal influences, especially pollen season. Some of us have reactions that can be triggered by heat or sunlight, for example. All of these reactions are typically caused by mast cell issues (mast cell activation disorder), and this is somewhat common with MC. You can read more information about it in the short articles at the links below:Portianna wrote:I also have come to conclude that summer usually brings a bad phase to my LC: more frequently tired and more episodes of crisis. Do any of you feel that too?
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.
Welcome Portianna. Tex is a Godsend here on this forum and I hope his advise helps. You may want to buy his book. just click on the picture of it on this page and it will take you to Amazon. Great info.
Another thing you might want to consider is the Enterolab testing ( google them). If you do tests A and C, you will find out what foods you are producing too many antibodies to ( which causes an inflammatory reaction) and take them out of your diet. The top offenders are Gluten, dairy, soy, and eggs.
When it comes to GF products, I stayed away from all processed foods for the first six months of trying to HEAL my gut. It's best to stick to real foods. Although some of us are intolerant to certain meats, most of us can eat lots of different animal proteins. It's what's best for us. Very cooked easy to digest veggies are usually OK ( like squash, sweet potato, green beans). Some people do best with NO grains, many of us are fine with rice. Some of us can eat nuts and nut butters, but others can't. It's a good idea to remove all "irritant" foods for now ….. like beans and legumes, tomato and it's products, fresh fruit, raw veggies, maybe caffeine….etc. These foods can be tested back in one at a time when you feel better.
We are all slightly different, so there is no one size fits all diet, but the more simple you make it, the easier it is to figure out.
Good luck and keep us posted on your progress.
Leah
Another thing you might want to consider is the Enterolab testing ( google them). If you do tests A and C, you will find out what foods you are producing too many antibodies to ( which causes an inflammatory reaction) and take them out of your diet. The top offenders are Gluten, dairy, soy, and eggs.
When it comes to GF products, I stayed away from all processed foods for the first six months of trying to HEAL my gut. It's best to stick to real foods. Although some of us are intolerant to certain meats, most of us can eat lots of different animal proteins. It's what's best for us. Very cooked easy to digest veggies are usually OK ( like squash, sweet potato, green beans). Some people do best with NO grains, many of us are fine with rice. Some of us can eat nuts and nut butters, but others can't. It's a good idea to remove all "irritant" foods for now ….. like beans and legumes, tomato and it's products, fresh fruit, raw veggies, maybe caffeine….etc. These foods can be tested back in one at a time when you feel better.
We are all slightly different, so there is no one size fits all diet, but the more simple you make it, the easier it is to figure out.
Good luck and keep us posted on your progress.
Leah
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
HI Portianna!
Welcome to the forum and we truly are a family here and you are our latest family member. Like Theresa, I can't add to much to what has been said but want to welcome you. Tex's book is the truly the only publication out there that serves as a great learning tool.
Maggie
Welcome to the forum and we truly are a family here and you are our latest family member. Like Theresa, I can't add to much to what has been said but want to welcome you. Tex's book is the truly the only publication out there that serves as a great learning tool.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hi Portianna,
Welcome! You can order Tex's book in the upper right hand corner of this forum in hard copy or digital download. I believe it is just in English at this point but you have a good mastery of English and shouldn't have any problems with it. It is well written and the best resource on microscopic colitis available (other than us of course.)
Brandy
Welcome! You can order Tex's book in the upper right hand corner of this forum in hard copy or digital download. I believe it is just in English at this point but you have a good mastery of English and shouldn't have any problems with it. It is well written and the best resource on microscopic colitis available (other than us of course.)
Brandy
Hi Portianna,
My LC is just like yours-- horrid nausea, no diarrhea but cramping and pencil thin stools at times. Terrible fatigue and I dropped 25 pounds in 12 weeks due to the nausea. I was sickest first thing in the morning, then symptoms gradually let up as the day went on. Mornings are still my roughest time. It took two years to get into remission. I did the Enterolab testing, but even before that I eliminated gluten and dairy. I was also prescribed Entocort and took that for 4 months along with Dexilant, a PPI, and I do think it helped with gastritis. Eventually I was able to stop taking Dexilant and take Zantac instead. While on Entocort. I found I needed to eliminate soy and eventually I had to eliminate eggs. I eat simply- just a meat and vegetable. It's best to keep things simple when trying to figure out your safe foods.
Even as I recovered I was still plagued with nausea. I started getting acupuncture for nausea and in 2 sessions it was gone. I continued the acupuncture for another 6 weeks to work on other health concerns like motion sickness. But I highly recommend acupuncture to help relieve nausea.
I'm sorry that you are dealing with LC but I'm glad you found us. The advice I received here helped me heal and got me back on my feet.
Best wishes,
Carol
My LC is just like yours-- horrid nausea, no diarrhea but cramping and pencil thin stools at times. Terrible fatigue and I dropped 25 pounds in 12 weeks due to the nausea. I was sickest first thing in the morning, then symptoms gradually let up as the day went on. Mornings are still my roughest time. It took two years to get into remission. I did the Enterolab testing, but even before that I eliminated gluten and dairy. I was also prescribed Entocort and took that for 4 months along with Dexilant, a PPI, and I do think it helped with gastritis. Eventually I was able to stop taking Dexilant and take Zantac instead. While on Entocort. I found I needed to eliminate soy and eventually I had to eliminate eggs. I eat simply- just a meat and vegetable. It's best to keep things simple when trying to figure out your safe foods.
Even as I recovered I was still plagued with nausea. I started getting acupuncture for nausea and in 2 sessions it was gone. I continued the acupuncture for another 6 weeks to work on other health concerns like motion sickness. But I highly recommend acupuncture to help relieve nausea.
I'm sorry that you are dealing with LC but I'm glad you found us. The advice I received here helped me heal and got me back on my feet.
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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JamesEcuador
- Adélie Penguin
- Posts: 54
- Joined: Tue May 13, 2014 6:59 pm
Re: Another newbie with a story and some questions...
Hi Portianna
Welcome to the group. I'm pretty new here and your questions are what I wondered at first as well. I don't have D but I do suffer from bad fatigue and nausea. The fatigue comes and goes throughout the day, the nausea is always worse in the morning. Before I went GF, DF and SF my BMs were always very loose and watery but never more than 1 or 2 a day. Now my BMs can go from text book perfection (favourite part of the day) to very thin or stone like. I'd say half of the time I feel like I've not emptied enough and its quite normal to go a day with struggling to go to the bathroom at all. My major symptom at the moment post diet changes is an abdominal pain that is pretty constant and changes in severity throughout the day, especially when I'm tired or stressed.
If you haven't purchased it already, Tex's book is a must read. That and by searching through the forum with keywords will give excellent tips for healing.
Welcome to the group. I'm pretty new here and your questions are what I wondered at first as well. I don't have D but I do suffer from bad fatigue and nausea. The fatigue comes and goes throughout the day, the nausea is always worse in the morning. Before I went GF, DF and SF my BMs were always very loose and watery but never more than 1 or 2 a day. Now my BMs can go from text book perfection (favourite part of the day) to very thin or stone like. I'd say half of the time I feel like I've not emptied enough and its quite normal to go a day with struggling to go to the bathroom at all. My major symptom at the moment post diet changes is an abdominal pain that is pretty constant and changes in severity throughout the day, especially when I'm tired or stressed.
I usually go the other way - very blocked up. I also feel like a zombie with brain fog, ache all over, feel sad and have stomach achePortianna wrote: Does gluten intolerance appear to all of you only through D. or do your experience other symptoms?
If you haven't purchased it already, Tex's book is a must read. That and by searching through the forum with keywords will give excellent tips for healing.
Hello everyone! Thanks for the warm welcomes, advices and sharing your own personal experiences.
I'm starting to feel better very slowly, still light nausea, some fatigue and starting to sleep a little better too.
I'm keeping my meals really simple, meat or fish, rice, potatoes or rice pasta. It's hard to figure out what to snack between meals though since I have to eat at least every 3 hours - i've always gone low on sugar if I don't.
About the episode of short of breath and tiggling on my feet and hands, still don't know what happened. A doctor told me it was anxiety, but i'm not convinced because i recently read Messalazina side effects and these are 2 of them. The truth is i had increased its dosage to the maximum my GI as recomended, so i guess i have to talk to her about it.
Thank you all again.
I'm starting to feel better very slowly, still light nausea, some fatigue and starting to sleep a little better too.
I'm keeping my meals really simple, meat or fish, rice, potatoes or rice pasta. It's hard to figure out what to snack between meals though since I have to eat at least every 3 hours - i've always gone low on sugar if I don't.
About the episode of short of breath and tiggling on my feet and hands, still don't know what happened. A doctor told me it was anxiety, but i'm not convinced because i recently read Messalazina side effects and these are 2 of them. The truth is i had increased its dosage to the maximum my GI as recomended, so i guess i have to talk to her about it.
Thank you all again.
Hi.
Since my last post, my health continues to improve, still some fatigue, very light nausea and cramping at times.
Until today I kept my strict diet - meat or fish, rice, potatoes or rice pasta, cooked fruit, rice cakes and rice milk.
Not sure if this was too soon to introduce new food, but since I was feeling better and need to gain some strenght I thought of taking the risk. So today I introduced eggs - I baked a GF bread with one egg.
I would like to ask those who are intolerant to eggs what kind of symptoms are most common. I've learned from this forum that intolerances are not mainly associated with D. - this is what i thought before.
Can you help me on this one? I'm on my elimination diet, so i'm sure i'll need your opinions along the way.
Thanks.
Since my last post, my health continues to improve, still some fatigue, very light nausea and cramping at times.
Until today I kept my strict diet - meat or fish, rice, potatoes or rice pasta, cooked fruit, rice cakes and rice milk.
Not sure if this was too soon to introduce new food, but since I was feeling better and need to gain some strenght I thought of taking the risk. So today I introduced eggs - I baked a GF bread with one egg.
I would like to ask those who are intolerant to eggs what kind of symptoms are most common. I've learned from this forum that intolerances are not mainly associated with D. - this is what i thought before.
Can you help me on this one? I'm on my elimination diet, so i'm sure i'll need your opinions along the way.
Thanks.
Hi Portianna,
It's good to see that you are feeling so much better that you are ready to try to add foods back into your diet.
I am lucky because I have never had any problems with eggs (I also had the EnteroLab stool test and the result was negative), but it is my understanding that most of the members here who are sensitive to eggs do have D (provided that D is their normal reaction to most food sensitivities). There are many of us who react to most food sensitivities with C (constipation) instead, and in those cases, eggs would probably also cause C.
Sometimes reactions vary for different foods (as you pointed out). Most of my food sensitivities caused me to have watery D, but beef was different. With beef, I developed only a little gas and bloating, stiffness and pain between my shoulder blades, followed by a headache the next day. The symptoms weren't severe, but they happened every time that I ate beef, so I knew that beef was the problem. Now that I have been in remission for years, beef doesn't cause those symptoms.
I'm sure that a few members who are sensitive to eggs will share their reaction experiences.
Tex
It's good to see that you are feeling so much better that you are ready to try to add foods back into your diet.
I am lucky because I have never had any problems with eggs (I also had the EnteroLab stool test and the result was negative), but it is my understanding that most of the members here who are sensitive to eggs do have D (provided that D is their normal reaction to most food sensitivities). There are many of us who react to most food sensitivities with C (constipation) instead, and in those cases, eggs would probably also cause C.
Sometimes reactions vary for different foods (as you pointed out). Most of my food sensitivities caused me to have watery D, but beef was different. With beef, I developed only a little gas and bloating, stiffness and pain between my shoulder blades, followed by a headache the next day. The symptoms weren't severe, but they happened every time that I ate beef, so I knew that beef was the problem. Now that I have been in remission for years, beef doesn't cause those symptoms.
I'm sure that a few members who are sensitive to eggs will share their reaction experiences.
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 Portianna,
Lovely name.
Great to hear you are doing better.
I am a newbie here, newly diagnosed LC after 8 weeks of diarrhea, after eating the healthiest I have ever eaten in my life, kind of ironic. I will be interested to see how I feel once I find out what my intolerances are and how I feel without them. I've been tired, get head pain, it might all be related and I didn't even know!
Summer
Lovely name.
Great to hear you are doing better.
I am a newbie here, newly diagnosed LC after 8 weeks of diarrhea, after eating the healthiest I have ever eaten in my life, kind of ironic. I will be interested to see how I feel once I find out what my intolerances are and how I feel without them. I've been tired, get head pain, it might all be related and I didn't even know!
Summer