I've recently been diagnosed with LC & am thankful to have found your forum and have learnt more on here than I have via my specialist or any other website, so thank you!
About me: I'm a 40yr old female who is super healthy except for having Hashimotos, Vitiligo, P.A, L.C & Autoimmune Gastritis & chronic hives (only when my TSH is over 0.8). Ever since I was a small child I've had the urgency to go to the toilet and in the past 3 years had bouts of chronic diahorrea for up to six months at a time. I've got a 2 year old & a 9 month old (the first was thanks to IVF, the second a lovely miracle) and was on prednisone & asprin during my pregnancies to avoid miscarriages. I am currently being tested for Coeliac & diabetes too. My blood sugars have been around 9.1 however I was tested through both pregnancies for Gestational diabeties and was aok, so fingers crossed this time round too. It is so interesting to read that a lot of you find that going GF helps. I was gluten free for 3 months before I fell pregnant with my first daughter until I had my second daughter and then reverted back to gluten to enable me to be tested for coeliac and get a conclusive answer. I consumed copious amounts of gluten for 10 weeks prior to the biopsy, and the results came back 'unlikely'. Given the other autoimmune diseases I have been blessed with I asked my specialist if he had ruled it out which he has not & therefore I have just had further blood tests & will get the results next week. On top of being diagnosed with L.C I was also diagnosed with Helibacter Pylori. I was treated with a double dose of A.B's and nexium which was horrific. I had terrible thrush and the diahorrea was even worse with having to get up multiple times during the night. I then started VSL3 & Sulphasalzine (sp?), the later made me housebound. It was hell. I only took one tablet and was almost glued to the toilet. Lots of fun with you have two little ones to chase around .
So anyway... after that long winded post, my question in relation to treatment : I'm now on 1.2g of Melsalazine per day & it is doing nothing! It has been two weeks & I'm still reliant on gastro stop. Have any of you tried this? If so, can I please ask what dosage you were/are on? Also, how long did it take to kick in?
Given the number of autoimmune diseases I have, I will go GF again no matter what the outcome of the Coeliac testing is, however I found that I did still have diahhorea on a GF diet, so will continue to read through your posts & try eleminating other foods that impact you all.
Looking forward to continuing to read through your posts.
Welcome to our internet family. I'm very sorry to hear of all your autoimmune issues. With your LC active, I'm surprised that you're able to take care of two infants — that has to require almost superhuman effort at times.
I could be wrong, but I have a hunch that the main problem why you are unable to gain control of your symptoms may be the medications that you were/are taking. Most antibiotics and all proton pump inhibitors such as Nexium are known to trigger LC/MC for many people. In addition, many of us are sensitive to NSAIDS, and for anyone who is sensitive to NSAIDS, mesalazine is known to trigger a similar reaction (it promotes the production of pro-inflammatory leukotrienes). Therefore, many of us cannot take any of the mesalamine/mesalazine-based drugs, such as Asacol, Lialda, Pentasa, Colazal, Rowasa, etc.
If you want to take a drug to control your symptoms, the most effective, reasonably-safe one is Entocort (budesonide), but it's a corticosteroid (even though it's safer than all the other corticosteroids), so many GI specialists are reluctant to prescribe it for long-term use. Therefore, whenever the treatment comes to an end, your symptoms will return, unless you have made the necessary diet changes when you started taking the drug.
Drugs cannot prevent the inflammation that causes LC — they can only suppress it to prevent clinical symptoms. The only way to prevent the inflammation from being regenerated is to stop eating the foods that cause the inflammation. For most of us those foods are gluten, dairy, and soy, and for many of us, also eggs. It takes time for the diet to heal the gut, but it is safe and effective — that's something that can't be said for the drugs that are often prescribed to treat the disease, because all drugs carry side effect risks.
The problem with the blood tests used to diagnose celiace disease is that they will only detect fully-developed celiac disease. They will not detect the early stages of the disease, nor will they detect non-celiac gluten sensitivity. Most of us here are extremely sensitive to gluten, but we always test negative to the celiac blood tests, because of the poor sensitivity of those tests. Currently, doctors have absolutely no way to officially diagnose non-celiac gluten sensitivity. They are still working in the dark ages when it comes to diagnosing gluten sensitivity.
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.
Thank you so much for the welcome Tex & also the valuable information you have provided. It can be very challenging dealing with little ones, however as I've had this to some degree for most of my life I tend to accept it. Also, I'm on maternity leave so am thankful that I'm not at work having to duck out of meetings every five minutes. :) Thankfully I also have a very patient and loving husband who never complains when i ask to pull over for a toilet stop whenever we are out and about. I'm sure it is the same for all of us that I think I know where every public toilet is wherever we go :)
That is very interesting about the drugs. Strangely, I had no reaction to aspirin in my first pregnancy, but the second I had diarrhea for the first 20 weeks that no dr could figure out why, I was still on aspirin until 36 weeks, and that last 16 weeks had no negative reaction. At the same time that I had diahhrea I was on prednisone and that didn't seem to help with the diarrhea either. I was only on Nexium for 7 days while treating the H.P, but that was enough to trigger a bad reaction. I'm going to see what the specialist recommends as the next step when I see him next Thursday, however had already decided if he recommended anything harder that I would not go down that track. I don't feel comfortable taking any of these drugs when there are alternative solutions such as a diet change that can eliminate the inflammation, so will explore this option further. For me, fruit is one of the worst culprits. Especially apples which is unfortunate as they are my favourites. Given the number of autoimmune diseases I have, I would be more comfortable getting rid of the inflammation as I certainly don't want any more. I did ask my specialist if I could control it by diet and he didn't seem to confident and said it would be up to me to do research and test it out for myself. Given the results of everyone on this forum, I find his response odd, but not surprising.
I have now been on gluten (multiple times per day) for 7 months now, so if the blood tests suggest it could be Coeliac then I would be willing to pay for another biopsy for a conclusive result even though I will go GF anyway.
Thank you again for replying to my post Tex, I really appreciate it.
Yes, most of us quickly learn the location of every public toilet in the area if/when our disease is active. As a general rule, until our intestines heal, we have to minimize fiber in our diet, because it is very abrasive when our intestines are hypersensitive. Some of us can tolerate small to moderate amounts of fruit as long as it is peeled (to eliminate most of the fiber) and well-cooked (to make it easier to digest), but many of us just avoid fruit (except for bananas) until we are in remission, and then we can slowly reintroduce them into our diet again.
Another problem with fruit is the relatively high fructose content, and fruit also contains sugar alcohols, which can cause problems while we are still healing. And the citric acid in citrus fruits is a problem for most of us when our disease is still active.
GI specialists in the U. S. have a similar attitude — most of them are still not willing to recognize that diet changes are the best way to treat the disease, and many of them will even argue that diet has absolutely nothing to do with the disease. That's like arguing that breathing polluted air has nothing to do with asthma, black lung disease, or other lung diseases. They would rather write a prescription for a drug, even though drugs don't work for many of us, and they can't be used for long-term control without a significant risk of side effects.
You are very welcome, and please let us know if the test results turn out to be positive for coeliac disease.
Tex
P. S. Gabes is a wealth of information for dealing with this disease.
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.
Wow, very similar stories. Thank you for the offer of me PM'ing you too. I will surely take you up on that offer. I'm with Mark McCullen @ Greenslopes. Your list of food intolerances are along the same lines as what I think triggers me. Can I ask how you found out that Casein was an issue? I will research that further as well. Have you always had tum issues & it took them that long to diagnose?
Tex,
What you have described regarding fruit is exactly what I have experienced. At the moment I can't tolerate any raw fruit except for bananas. Stewed fruit seems to be okay. I find it hard to get my head around needing to cook vegetables to death due to the lose in nutrients, but I guess at least I will be getting some nutrients as opposed to next to now when it goes through my body practically unprocessed at 100km an hour.
I have been feeling a little down about all of this over the past few weeks but today feel better knowing that I may be able to control it with a strict diet. As painful as that is, sure beats being on drugs if I can prevent going down that path.
trying to summarise my 'gut' story in 200 words or less...
you might need a cuppa!!
digestion issues my whole life, 3 x bowel surgery before age 25 (2 in nsw, 1 at mater private sth bris) IBS issues from then on
1997- saw naturopath and tried various eating plans (high fibre, low fibre, combination etc etc) found that they worked ok but were quite limiting socially etc
1999 started working with vitamin company and made friends with naturopaths, at this stage spent 3 years with focussed vitamin/liquid herbs, eliminated gluten (about 85%) reduced yeast etc. 2003 did liver cleansing diet and gave up coffee and milk. when I started having my latte's again had lots of issues so went lactose free. was aware that if I ate a high dairy type meal, there were increased symptoms...
was also having acupuncture.
for the next 8 years or so, was very aware that if I had too much gluten, dairy, I would have bloating, D and or C, fatigue
so avoid it 85% of the time
late 2007 - I was quite fatigued, sore joints, had kerititus issue with my eye, IBS was quite bad, adrenals were not functioning. nothing showed up in blood/urine/poop tests. The immunologist's explanation for 3 months of chronic symptoms was that I must have had contact with bat urine when working in PNG (I never had contact with bat urine in PNG) had lots of acupuncture and lots of vitamins to help rebuild the body
Mid 2009 started having D issues, nothing showed up in poop tests. by October 2009, had lots of fatigue, pain, D, etc
By late November was having D accidents when at work/ out and about.
by flook I got an atp with a good GI, and thanks to a cancellation got to have a scope etc 12 Dec. I was lucky that I did have a good GI, who does do biopsies for MC on all patients with these symptoms, even if they don't meet the so called criteria that has been published late. 19 Dec 2009 - Dx MC. within 24 hours i found this site, and based on the learnings from the knowledge and support of this wonderful group of people, things like Gluten, dairy etc were the main triggers for majority of people. The fatigue, joint aches and various other symptoms that had been increasing were linked to the ingestion of these ingredients
I went 100% GF, was LF, small amount of yeast, low fibre, avoided nuts, greens, salads etc (not easy during a bris-vegas summer!!!) - focussed on well cooked meat and veges. Felt good for a few weeks and then the symptoms returned, again based on the learnings of the many MC'ers before me, once you remove a main trigger totally and there is some healing, it is very possible for another ingredient to be a major trigger, eliminated yeast, felt great, and then had issues again, I figured that the next most likely suspect was the casein, stopped all casein and felt great for a few months and then evil soy became the trigger and I eliminated that.
in this period post Dx, I could not afford the entorlab testing that many on this forum have done to test their poop for triggers. I did elimination diet, gooey rice and chicken and tested foods. Kept a food /symptom/ lifestyle journal. and had muscle testing done via acupuncture for what causes inflammation etc within 9 months I had a good eating plan that was low inflammation, focussed on helping the gut heal and worked for my full time work/lifestyle / budget. within 3 months post dx I was not taking any meds to slow motility etc.
listening to your body and keeping the journal, you can quickly determine what causes issues.
For me, soy is my worst ingredient trigger, stress (physical, emotional, mental) is another main trigger.
thanks to the 3.5 years of sticking to the eating plan, the lifestyle changes I have made, MC is the least of health stuff these days. I can handle gluten/dairy and not have a reaction. the last time I tested this was Nov 2012 at Freestyle café in Fortitude valley!!
I wont lie and say it was easy - it is hard work, patience, diligence, tenacity. Every ounce of which is totally worth it. As you adjust to your MC management plan day by day it gets easier and part of life.
you stop wanting/craving foods - I remember when I first joined this forum, Gloria and some others talked about a switch, that over time your brain and tastebuds adjust. and it is like a switch where you don't want those items anymore.
here and there I will smell certain ingredients and for about 3 seconds I think mmmm Tomato's and then SWITCH - don't want it.
being well and symptom free means way more!!!!
We are super lucky here in Aus, we have great range of safe products readily available. The woolie macro range, Orgran products. Shops like Wray organic, Mrs Flanneries, Healthy life have good ranges of items for people with multiple intolerances.
anything I cant get from shops in the Tbar, I order online and get delivered to my Po Box.
We also have quite affordable, GMO free/organic product lines. If there is a place to live life with multiple intolerances, Australia is my pick!. based on the discussions on this forum and some travel to Europe I did after Dx.
I hope this answers some of your questions, not sure I can remove the unsettlement of shock, reality of the Dx, that takes a bit of time.
take some deep breaths, and feel encouraged that you are not alone! there are many that have travelled this journey, and as a collective on this website, they are amazing, caring, supportive, knowledgeable, funny. For most, life post Mc is not the same and will never be the same as pre Mc. BUT! that doesn't mean it is worse. If anything my life is enriched and enhanced by so many of the elements that came with the MC Dx
many have attained remission, and good level of wellness with strict diet as the key part of the management plan.
I have met a few PP'ers.
Bifcus16 is in Canberra, I met her when I had to travel to Canberra for work, we had dinner etc.
I have met Ant who is Englishman living in Hong Kong, we had a "gf/df high tea" at hong kong airport as I transited there for a work trip to France
I have met Joe who has travelled to Aus for his work and was at one stage planning to move to Brisbane to work at UQ.
I have regular email/facebook contact with many others. This is not just a forum or a website, it is a family. we share our milestones, and share hugs on the bad days.... the sharing of this knowledge is invaluable
ok - enough gabes babble!!! as I said, feel free to Pm or email me.
take care Kylie
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes, thank you so much for taking the time to share your story. You have been through a lot. I'm so glad to hear that the change in diet has made a difference for you. I totally agree that we have it so good here with the options available to us. Not only are the products available to buy, but so many restaurants have at least GF options available, even our local Thai has GF stir fries etc. The one thing that does concern me about going dairy free is giving up coffee. I can't have soy because it messes with my thyroid and almond milk would be just wrong, so that would have to go. I think I may try Zymil first up just in case it is the lactose. I have read a lot of articles where coffee itself could also be a trigger. That is one thing that I may not adjust well too is missing my one coffee a day.
I've just been out for dinner, but will read through your post again tomorrow. Thanks again!
Kylie
I have not given up coffee, I have been a dedicated merlo coffee fan for almost 15 years!!!
(8 week supply enables same day free delivery to the t-bar!!!)
when I gave up the Zymil, I converted from Latte's to half strength long black coffee.
take it a step at a time, an ingredient at a time.
there will be change, and there will be items that you will give up and there will be some favourites that you get to keep
there are some on here that cant tolerate coffee (it affects the MC) and others that have no troubles at all.
focus on figuring out if it is lactose or casein that is your issue.
you mention Soy and your thyroid - Soy is a big issue for many MC'ers.
thyroid is an issue for many MC'ers
bang for your buck - I would think about removing soy before being concerned about lactose or casein or coffee.
Also - have you had your Vit D levels checked lately - Vit D supplementation helps a lot of people and works very effectively to minimise symptoms and inflammation.
If I was in your shoes, knowing what I know from the past 3 years.... I would get rid of soy and do Vit D supplementation first up.
Friendly warning.... removing soy from your diet is way harder than any other ingredient - it is hidden in sooo many things (aside from the fact that it has about 30 different names!!!) we will chat more about that once you have had the chance to digest what we have discussed so far!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Merlo is our favourite coffee too. I'm not sure if it is the coffee that triggers me, the milk or hot drinks in general. Still haven't figured that one out as have just accepted that after I drink it I will need the bathroom. Especially in the morning. Scary how having these issues for so long they become the norm.
I did have my Vit D tested last week & I think it was 70. The GP mentioned the low side of normal and suggested some time outside plus a supplement which I have just started taking. I didn't know that that can help minimise symptoms and inflammation.
I try to avoid taking any soy knowingly, but understand it is like gluten where it is hidden in so many products. I think I will try Zymil from today and see if that makes any difference since I didn't have any soy knowingly and don't tend to have any processed biscuits, mayonaises etc.
I do have lots of questions, but will spend some time today reading through other posts as I'm sure I will find lots of answers in there to save duplication. Thank you for your support Gabbes.
highly highly recommend the bioceuticals sub lingual VitD3.
Maloufs here in T-bar stocks it and some of the Maloufs in Brisbane - pretty sure the larger terry white stores around Brisbane have it. not on shelf, it is behind the counter
From memory, mrs flanneries at Woollongabba and Chermside have it (they did back in 2010)
few hints... when you reading the posts on the forum.
-Vit D levels are measured differently in the states compared to Aus. I will look up what the conversation rate is for our results so you can compare it to levels mentioned in articles/posts from the USA
- labelling laws- we are blessed to have very stringent labelling laws in Aus regarding foods/supplements etc. They don't have that in the USA.
- some of the medications prescribed in the USA have different naming here in Aus (Wikipedia is a good source to figure it the name it is sold under in Aus)
and further some medications that people use that are MC safe, have different prescribing guidelines in Aus and are not available to us....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
To spare Gabes the time needed to look up the conversion factor for vitamin D units, the conversion factor is 2.496. IOW, 70 nmol/l in Aus is equivalent to 28.045 ng/ml in the U. S. In the U. S., 30 ng/ml is considered to be the low end of the normal range, whereas in Aus, 75 nmol/l is considered to be the lower end of the normal range, so your result is only slightly below what's considered to be the normal range. Your result is probably above average in Aus, so I'm guessing that you must get a decent amount of vitamin D from sunlight (because 2,000 IU is a relatively low supplemental rate for vitamin D - many of us take roughly twice that amount or more).
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 all - I just recently diagnosed with LC in January - they put me on entocort for a month but did not mention diet so ate normally. It did nothing for me in fact made me worse. so now tried mezavant but it has been a month and have been on SCD diet as well this time around. Lots of gas with BM's but at least not Diarrhea. I still go 6 to 7 times in the morning (I have no idea where all the stool comes from). I am thinking the mezavant is working but also taking s.bourlardii. Problem now is racing heart rate, and major little bug bite type bumps all over me that are driving me nuts with itching and scratching and bleeding. Stopped the mezavant and started back on entocort to hopefully helped these nasty bumps. Not sure if bumps are toxins trying to get out from doing charcoal and Epsom salt baths or from the mezavant. Anyone any experience similar?
thx
babs
symptoms started aug 2012
colonscopy/endo jan 2013
diagnose jan 2013 LC
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
. 
