Go to Home Page
Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery
  Username:    Password:      Remember me       
MICROSCOPIC COLITIS SUPPORT Forum Index

You can get your life back
MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

MICROSCOPIC COLITIS SUPPORT Forum IndexVisit the Microscopic Colitis Foundation Website
 

The only comprehensive book ever written about Microscopic Colitis
Can be ordered at any bookstore or library
 FAQFAQ  RulesRules   SearchSearch   MemberlistMemberlist   UsergroupsUsergroups  ChatChat   RegisterRegister 
 ProfileProfile   Log in to check your private messagesLog in to check your private messages   Log inLog in 
 World Time Clock--Time ZonesPotty People T-ShirtsPrivacy Policy
Google
SearchSearch The Archives of This Discussion Board
1 Year gluten-free then...Booom!

 
Post new topic   Reply to topic       MICROSCOPIC COLITIS SUPPORT Forum Index -> Information on Diet
 View previous topic :: View next topic  
Author Message
nick

United Kingdom

Joined: 27 May 2013

Posts: 23
User's local time:
2017 Nov 20 - 1:15 PM




PostPosted: Sun Jun 01, 2014 1:26 pm    Post subject: 1 Year gluten-free then...Booom! Reply with quote

I thought I had it sorted...I wasn't as bad as most of you...although I have a diagnosis of microscopic lymphocytic colitis confirmed by biopsy and I have been suffering from it for a few years.

The gluten free diet was chipping away at my symptoms and I though that it would be only a matter of time until I was symptom-free as long as I kept gluten-free. Then...out of the blue I am back to square one. Nothing in my diet seemed to be to blame.

I thought that after a few days things would improve...they didn't. I tried to book an appointment with my doctor...I am in the Uk...I was told I would have to wait 10 days...I said "forget it!." I bought THE BOOK from Amazon...it arrived in 2 days...I read it...in 2 days...I have been on an elimination diet of rice, chicken, fish and banana for a week but things are still BAD. I have almost started to look forward to giving up the gluten-free diet (because it isn't working and it can be REALLY inconvenient) and making some bread and cakes (I won't really!)

Who can I believe...how long before the elimination diet takes effect? Is it worth it?

One thing that I would like to share with you...as I was eating my steamed rice and fish whilst my wife was eating something really tasty next to me...I said to her, when she offered me her sympathy for my meagre meal..."for most people in developing countries, this meal would be unheard of luxury" and she replied..."yes...and at least you know you can have it again tomorrow." I will hold onto that thought every time that I feel sorry for myself!

Does anyone have any ideas how long I should keep this elimination diet going...I don't fear malnutrition...as I have said...many people survive on far less for their entire lifetime...it is just getting boring and I don't want to keep it going if I am getting nowhere.

I am sorry if I have used this forum incorrectly...I don't really understand how they work...but I could do with a little advice and support.

Many thanks...Nick
_________________
nick
Back to top
nerdhume
Rockhopper Penguin
Rockhopper Penguin


Joined: 26 Feb 2014

Posts: 676
User's local time:
2017 Nov 20 - 7:15 AM


Food Intolerances : Working it out

PostPosted: Sun Jun 01, 2014 2:01 pm    Post subject: Reply with quote

Nick,
Sorry to hear you are going through a rough patch.
I am fairly new to this, but I do know many things can cause a flare. Have you been under added stress? I even had a 2 day flare from a minor disagreement with my DH. Also when we think we know what we are eating, need to look more closely for changed ingredients, etc.
_________________
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Back to top
nick

United Kingdom

Joined: 27 May 2013

Posts: 23
User's local time:
2017 Nov 20 - 1:15 PM




PostPosted: Sun Jun 01, 2014 2:34 pm    Post subject: Stress can be insidious Reply with quote

Hi...thanks...yes, stress can creep up on you...it isn't always the result of a flaming row. But, as for ingredients, I am a creature of habit...I pretty much stick to the same thing at the same time every day. I keep trying to persuade my wife of the merit of this approach as she is type1 diabetic and it would help with understanding her blood sugar variations.

Having read THE BOOK, it looks like another food sensitivity kicking in.

OR...and here is where I have big doubts...is it, as my specialist doctor told me, a matter of symptoms coming-and-going randomley. I was so glad to get out of that doctor's office without a diagnosis of bowel cancer that the advice "just go away and live with your symptoms" seemed like all my Christmases in one go. Christmas! thinking about it, there's a stress trigger if ever there was one!

I think I need to nail down he elimination diet to find out what is going on...if, indeed, diet has any part to play in my symptoms.

All the best to you...Nick
_________________
nick
Back to top
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30710
User's local time:
2017 Nov 20 - 7:15 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Sun Jun 01, 2014 3:36 pm    Post subject: Reply with quote

Hi Nick,

I'm sorry to hear that you're having symptoms again and unable to get them under control.

The elimination diet can take a long time to bring improvement for someone who is starting from the beginning, because the level of gluten antibodies takes a long time to decay. But as long as you have been carefully avoiding all sources of gluten, at all times (for a year or more), you should respond relatively quickly to a diet that eliminates the other food sensitivities. Assuming that you have been gluten-free for a year or more, if you haven't seen any improvement after a week or so of following an elimination diet, then it may be time to consider the possibility that you might have mast cell issues. Mast cell activation issues (as discussed in chapter 14 in the book) can lead to a histamine buildup in the body, and this can cause the same type of GI problems that are typically associated with active MC.

Some of the members here are sensitive to chicken. But more than that, chicken, fish, and ripe bananas are often high-histamine foods that can prevent us from achieving remission when we are in a flare. I say "often" because they do not always have a high histamine content. When very fresh, they are OK, but after a day or 2 in the refrigerator, they become high-histamine foods (IOW, histamine increases rapidly at room temperatures or above, but it even increases in certain foods at normal refrigerator temperatures). Freezing will severely retard histamine development, and deep-freeze temperatures will stop it completely. Bananas have a negligible amount of histamine before they ripen, and even when they become ripe, the histamine level is only moderate, but with each passing day, the riper they get, the higher the histamine level climbs.

You might try turkey instead of chicken (because virtually all of us can tolerate turkey without any problems), and be sure that any fish is absolutely fresh. Instead of putting leftovers in the refrigerator, freeze them, and only thaw them (quickly) just before you are ready to rewarm them for a meal.

If I were in that situation, I would try taking an antihistamine in the morning, and another before bedtime. A non-drowsy antihistamine such as Allegra or Claritin Redi-Tabs can be used in the morning, and many members here take Benedryl at bedtime (because it also helps them sleep). The reason for selecting Claritin Redi-Tabs over the regular Claritin version is because the regular Claritin tablets contain lactose. Many members here find that after taking antihistamines, they are much better in only a day or 2.

You're very welcome, and I hope that some of this helps you to get back on track with your recovery.

Tex
_________________
cowboy

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.
Back to top
nick

United Kingdom

Joined: 27 May 2013

Posts: 23
User's local time:
2017 Nov 20 - 1:15 PM




PostPosted: Mon Jun 02, 2014 3:14 am    Post subject: Reply with quote

Hi Tex...thank you so much for your amazingly thorough and thoughtful reply...I can't tell you how much I appreciate it!

I confess to having skipped through chapter 14 without paying too much attention...reasoning that "surely I can't be a difficult case"...and I had never heard of "mast cells"...it all seemed a bit over my head. But having re-read it (and looked up mast cells in wikipedia) I am interested.

If the histamine issue is related to pollen then I have a history of reaction to this. My reaction has varied over the years without ever having been the classic "hay-fever." It has often been a skin rash in association with exposure to sunlight, lasting for just a couple of months in the spring, but this year it has taken the form of coughing up (sorry about this!) thick phlegm in the morning. This has never happened to me before. I live in a rural area and the air is thick with pollen at the moment. I have always avoided antihistamines as I don't like to take drugs if I can cope with symptoms reasonably well.

Interestingly, the phlegm issue seems to have subsided since I started the elimination diet...it is so hard to tell cause-and-effect from co-incidence.

Thank you for your advice...I will try each piece of it in turn until I can find out what is going on...and if I succeed I will surely share the results of my experience with the forum.

Best wishes...Nick
_________________
nick
Back to top
coryhub
Gentoo Penguin
Gentoo Penguin


Joined: 12 Jul 2011

Posts: 434
User's local time:
2017 Nov 20 - 7:15 AM


Food Intolerances : Soft cheese, gluten, roughage: anything with a fibre, seed, skin, raw etc.
Location: Central Texas

PostPosted: Mon Jun 02, 2014 2:59 pm    Post subject: Reply with quote

Hi Nick,
Sorry to hear about your flare up. I have a diagnosis of lymphotic colitis too. When I flare up, which is usually every 3-6 months because I have a hard time resisting temptation, I eat a strict healing diet of homemade chicken soup. You could make it with turkey instead. First day, I have mostly broth. Next day I allow small pieces of meat and carrots to enter my bowl. I am able to eat mashed potatoes too. By day three, I'm eating the soup as prepared and can even pour it over white rice. That's my go-to, flare-up recipe in a nut-shell. What works for me may not work for you but I'm sure you will get a handle on this and I hope your gut feels better. If an elimination diet does not work you may need a prescription from your doctor. You were doing real well to have made it through a year with no mishaps.
Best,
Cory
_________________
CoryGut
Age 64
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Back to top
nick

United Kingdom

Joined: 27 May 2013

Posts: 23
User's local time:
2017 Nov 20 - 1:15 PM




PostPosted: Tue Jun 03, 2014 6:56 am    Post subject: Many thanks Reply with quote

Hi Cory....many thanks for that...chicken soup has something of a reputation for curing practically all ills...I have plenty of chicken stock in my freezer...I will try it.

My present dilemma is not because this is my first flare-up since going gluten-free...I have had plenty but they usually last no longer than 3 weeks and sometimes just a few days. But this time it has gone on for 5 weeks and I can't see an end in sight. My household is totally gluten-free...nothing is allowed to cross the threshold if it contains a trace of gluten. So I can be pretty sure that gluten is not the culprit. My diet has become so restricted now that I have started to think that diet has no part to play. Another week of this and I think I will bake a cake and face the consequences of eating it all at once!

I hope you are doing well...best wishes...Nick
_________________
nick
Back to top
lisaw
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 26 Nov 2012

Posts: 166
User's local time:
2017 Nov 20 - 7:15 AM


Food Intolerances : Gluten, Eggs, Soy
Location: Chicago

PostPosted: Tue Jun 03, 2014 2:04 pm    Post subject: Reply with quote

Hi Nick:

I have been GF almost 2 years since diagnosis, and like you, took a turn for the worse about 6 weeks ago. It was no longer manageable, so I cut out dairy, soy and eggs, and am eating mostly protein, cooked veggies, and some carbs. The D was not getting better, in fact it was worse. Like you, I hadn't paid much attention to the discussion of histamine issues before, but since my flare I was eating avocadoes and bananas every day (ate about 1 avocado a week before, had gone to 1/2-1 every day for the fat/calories), trying to maintain weight, and I was only getting worse. I gave those up as they are higher histamine, and started on antihistamines and had some improvement-slept through the night for a few nights, but then started waking up again with D. I decided to go on Entocort, as I was exhausted, not doing my job very well, and concerned about losing additional weight. I've only been on it a few days, but have slept through the night the last few days. I'm hopeful for continued improvement, in the morning D. There are many extremely helpful people on this board, and I am thankful that they share their stories.

Lisa
Back to top
nick

United Kingdom

Joined: 27 May 2013

Posts: 23
User's local time:
2017 Nov 20 - 1:15 PM




PostPosted: Wed Jun 04, 2014 2:50 am    Post subject: Reply with quote

Thanks Lisa...very interesting reading.

I guess I had thought that I could control this thing without resorting to drugs. My doctor told me that diet would have little or no effect on the symptoms, which would come and go, for no good reason, whatever I ate. If the symptoms were to become severe then they could be controlled with steroids.

I didn't want to take steroids...I thought I could live with the symptoms and tried the gluten-free, non-dairy diet. It seemed to have an effect but now that the symptoms are back...despite an incredibly restricted diet...it seems clear to me that food is not the issue and that the doctor was right after all.

Many people on this forum appear to be taking steroids...why is this? I thought that the whole idea of controlling the problem with diet was to avoid drugs and get to the root of the issue.

Good luck to you all...really...I appreciate all the time and trouble you have gone to to analyse and share your experiences...but I don't believe that I have any food intolerances...just a case of microscopic lymphocytic colitis which will come and, hopefully, go.

Best wishes...Nick
_________________
nick
Back to top
lisaw
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 26 Nov 2012

Posts: 166
User's local time:
2017 Nov 20 - 7:15 AM


Food Intolerances : Gluten, Eggs, Soy
Location: Chicago

PostPosted: Wed Jun 04, 2014 7:13 am    Post subject: Reply with quote

Nick:

Everyone has to do what is best for them. It is frustrating to be following an elimination diet and not seeing results. I believe that diet is critical, however for me, I felt that I needed to go on Entocort to help me get there. Some do, and some do it without. I am eliminating many foods to help me heal, and have recently adopted a lower histamine diet, as I believe I may have that issue as well, as I was definitely doing worse when I was eating a lot of higher histamine foods. It is a long process to heal, and it's difficult to be patient and hopeful when you are not seeing results. Read some of the success stories, there are many. All the best.

Lisa
Back to top
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30710
User's local time:
2017 Nov 20 - 7:15 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Jun 04, 2014 9:57 am    Post subject: Reply with quote

Hi Nick,

I'm sorry to see that you are feeling so discouraged. All of us can understand that, and we have all felt frustrated and extremely discouraged at various times during our recovery, because this tends to be a very frustrating and discouraging disease to control, especially the first time that we attempt to control it by diet. It gets much easier once we taste success, and begin to appreciate the rewards of our efforts. No one ever said that controlling this disease is easy — in fact, it's very difficult to control, and requires all the dedication, perseverance, and patience that most of us can muster. If it were easy, doctors could do it. But they are unable to control it (except for short-term or powerful drug treatments), because they don't have the patience to learn how to control the symptoms by diet alone — each of us requires our own specialized diet, based on our food and/or drug sensitivities, and our lifestyle.

But it's doable, and it's definitely worth the effort. I was so sick before I discovered the diet connection that I didn't expect to live much longer (this was 14 or 15 years ago). I couldn't work or do much of anything else, because of the severe and debilitating symptoms (diarrhea, nausea, arthritis, migraines, brain fog, etc.). I couldn't sleep at night, and I spent many days in a hazy fog of fatigue, sort of like a zombie. Whenever I went to the clinic, I had problems such as severe potassium deficiency and anemia (because of the watery D). My GI doc was no help.

The diet changes literally saved my life. Once I figured out the connection, I dropped gluten from my diet and then spent a year and a half experimenting and trying to figure out all of my other food sensitivities while carefully maintaining and studying a food/reaction diary. After it dawned on me that I was going to have to avoid every one of the foods that seemed to be causing problems, I exorcized them from my diet, and within a couple of weeks I was in remission. For a year and a half, I ate a bland, very restricted diet, and after that I was able to begin adding a few foods back into my diet.

At one time (before the diet changes) my arthritis was so bad (from the leaky gut) that I had to use 2 canes, just to get around. I don't even remember where I stashed them after my gut healed, but I have not needed them since. I have never taken a corticosteroid.

You asked a very good question:

Nick wrote:
Many people on this forum appear to be taking steroids...why is this? I thought that the whole idea of controlling the problem with diet was to avoid drugs and get to the root of the issue.


And that question deserves a good answer. So here is my 2 cents worth:

It takes a long time for the gut to heal, and for much of that time the symptoms of MC can be severe for many of us, even when they become less frequent. So in order to continue to do our work, and remain socially active, many of us choose to use a corticosteroid to mask the symptoms while the diet is healing our gut. Note that corticosteroids do not aid healing. They only mask symptoms. In fact, they retard healing. But given enough time, the diet will heal the gut (despite the hindrance of a corticosteroid), and then we can slowly wean off the corticosteroid, and the diet changes will maintain remission.

Without the diet changes, most people relapse when they discontinue the corticosteroid. Those who wean off the corticosteroids too quickly also tend to relapse, because discontinuing a corticosteroid causes a rebound effect on mast cell numbers, and the rapidly-increased mast cell population promotes inflammation. By weaning off the corticosteroid very, very slowly, this effect can be minimized and remission maintained.

That is why and how many of us use corticosteroids during our recovery. They most definitely are not necessary for recovery, but they can be used to make life much less miserable during the recovery period. Your symptoms might be tolerable (if you should choose to continue to live with them), but for many/most of us, controlling our symptoms is not optional — our symptoms are so severe that controlling them is absolutely necessary if we are to function in society on any respectable level.

Simply put, the diet allows us to get our life back. No, it's not easy, but it works if we do our part to track down all of our food sensitivities. If we overlook a single food (or drug) sensitivity, or allow even tiny trace amounts of gluten to slip into our diet, then the diet will not bring or maintain remission. We have to do our part. It's never easy, but it's so worth it, to get our life back.

At least, that's the way that I see it. I wish you the best of luck, whatever you decide to do.

Tex

P. S. Here's a link to some of the success stories that Lisa mentioned, in case you feel that we are deluded or daft by attempting to control MC by diet changes (with or without medications).

http://www.perskyfarms.com/phpBB2/viewforum.php?f=71
_________________
cowboy

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.
Back to top
nick

United Kingdom

Joined: 27 May 2013

Posts: 23
User's local time:
2017 Nov 20 - 1:15 PM




PostPosted: Wed Jun 04, 2014 12:37 pm    Post subject: Reply with quote

Hi Tex...I must seem like such a quitter after all you have been through. The last thing I would want is for you to feel insulted by my rejection of your methods...I don't think you are deluded or daft!

I am just having a breather whilst I weigh up which direction to take next...drugs? Paleo? psychotherapy? I have always been the strong guy in my family...my wife and both of my kids are type1 insulin dependent diabetic...they cannot move without their insulin and a ready supply of sugar, but I have always been able to sling a rucksack on my back and walk out of the door without a thought for what is in my next meal...whether I am visiting a remote jungle or an unfamiliar city. I hate not being able to do that anymore...that is the life I want back. I know I can't have it any more than my wife and kids can have theirs back.

Keep up the good work...thanks for the time you have taken replying to me...you are very kind.

All the best...Nick
_________________
nick
Back to top
Display posts from previous:   
Post new topic      Reply to topic    MICROSCOPIC COLITIS SUPPORT Forum Index -> Information on Diet All times are GMT - 6 Hours
Page 1 of 1

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum

Remove cookies set by this forum

Search online dictionaries
(Powered by OneLook® Dictionary Search)
Enter word or phrase:
Enter a word to search for dictionary web sites that include that word.
Enter a pattern consisting of letters and wildcards to search for words.
Valid wildcards are * (matches multiple letters) and ? (matches one letter).
Locations of visitors to this page


Powered by phpBB © 2001, 2005 phpBB Group
IP Country Flag 2.9.6b © 2005, 2008 - 3Di (aka 3D)

Copyright © 2005–2017 perskyfarms.com, All Rights Reserved

Copyright Notice: The material on this site is copyrighted by perskyfarms.com, and it is protected from unauthorized copying and dissemination by United States copyright law, trademark law, international conventions, and other intellectual property laws. This copyright protection also extends to any and all images, found on any and all pages of this site.

Please contact us at this address for permission, if you wish to use any material on this website for any commercial or public purpose.

We have made a good faith effort not to violate any copyright. If we have unknowingly done so, please contact the site administrator, at this address, and the issue will be promptly corrected.

Disclaimer: The information contained within this site is intended solely for general educational purposes, and is not intended, nor implied, to be a substitute for professional medical advice relative to your specific medical condition or question. Anyone who chooses to use any information found here, does so at his or her own risk. Always seek the advice of your physician or other health care provider for any questions you may have regarding your medical condition. Only your physician can provide specific diagnoses and therapies. By using this site you agree to the following terms and conditions:

Certain members of this discussion board are practicing medical professionals. They are not here to offer medial advice, they are here because they have been diagnosed with microsopic colitis, and they are interested in sharing their own personal experiences concerning the disease, and learning from others in all walks of life, who also have to deal with these issues. If you have any questions or concerns regarding your health, you should consult with your own doctor, or medial professional.

If you think you may have a medical emergency, call your doctor, or 911, immediately. The members of this board, regardless of whether or not they are medical professionals, cannot respond to issues requiring urgent medical attention. Please note that no legal action can be taken by any user of this site, as a result of any information found here, and that none of the parties involved, neither individually, nor collectively, nor the owner of this site, can be held responsible for any information offered in the course of discussions, regardless of circumstances, whether those discussions are in a public or private form, and regardless of whether of not any of the parties involved are professionals. Remember that this discussion board is not intended to be a replacement for a consultation with your doctor or other medical professonal, it is intended as a sharing of knowledge and information from the research and personal experience of the members of this discussion board.

This site does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned anywhere on this site. Reliance on any information provided here is solely at your own risk.

Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery