LC, pericarditis, thyroid, infertility-claiming back my life
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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- Posts: 21
- Joined: Tue Sep 16, 2014 2:36 pm
- Location: Atlanta
LC, pericarditis, thyroid, infertility-claiming back my life
I am very grateful to this community that provided me with crucial information when I desperately needed it. I remember reading many stories - relating to them and learning from them. Big THANK YOU to all the contributors and organizers! Now I wanted to share my story (post will be long, sorry) and my work in progress, hoping that it might be also useful for someone. I am also happy to answer any questions!
I am 35 yo with diagnoses: lymphocitic colitis, pericarditis, tireoiditis (Hashimoto), ostheoarthritis, hypothyroidism, infertility (premature ovarian failure). I was diagnosed with LC in May 2012 after 7 month of explosive diarrhea (>6-12 times a day). Until I found this forum, I thought it was a result of a stomach virus I caught on our Thanksgiving trip to Dominican Republic: we both had diarrhea but my boyfriend recovered after a weak of antibiotics and I never did. Now I understand that at most it was just a trigger. I was put on and off budesonide, all my questions to GI about the diet met a wall: "No. No connection." As soon as I was off the steroids, diarrhea would immediately come back.
At the same time we were trying to have a baby and did not succeed. We moved to IVF which failed. While waiting for the results, I started having severe chest pains and went to ER a couple times. First, they thought it was PE, then costochondritis, but 3 weeks later I was diagnosed with pericarditis (yet another glorious "-itis"), which later developed effusion. It was labeled "viral" without specifications. I spent countless hours trying to read and see why within one year I developed two huge inflammations in my body, both possible viral in nature – but probably it was a dead-end direction. I was put on NSAIDS (first high doze of ibuprofen, then diclofenac) for 7 months and steroids (prednisone, short therapy, twice)!!! Which (NSAIDS) as I understand now ruined my colon even further. I was taking Misoprostol, thinking I am protecting my GI, but it was stomach and not colon that was somewhat protected. Sadly, the therapy did not work and 14 weeks ago I had an open heart surgery to remove the inflammed sack (pericardium) around my heart. Surgery went very well and I recovered fast. I am back to all normal activities, including working out.
So back to LC. After discovering this forum, I completely changed my diet. I remember that while trying to conceive I had green smoothies and salads and thought I was doing the right thing! Instead, I had to plan my walks in the park from one restroom to another. So here is what I did:
- First I realized that something triggers my immune system to react with all those "-itis".
- I read here that it might be diet, which made sense to me. We are built out of what we put in ourselves.
- In the beginning of July I was put back on Budesonide. But I did not work as well as before. Usually diarrhea would disappear the next day, this time it remained rather watery and around 5-6 times a day.
- On July 25 I started my diet: gluten-free, dairy free, soy free, fiber reduced. I was tested negative for celiac, allergic to soy. BUT. The diet helped dramatically. I was no longer bloated. My stool very soon became formed and reduced to 1-2 times a day. I felt great! In addition I lost about 8 pounds in 2 weeks and my sugar levels went from 99 to 80 in a month.
- at the end of August I also eliminated Nightshades -- after discovering the ostheoarthritis on my spine and knees.
- I can NOT drink alcohol. Forget the bubble stuff. But even a glass of wine makes my tummy upset. Well, it is known to contribute to "leaky guts". It sure does in my case.
- I avoid NSAIDS at all costs (Tylenol, Lortab, Tramadol, etc. for pain when necessary)
- I also learned to do Reiki on myself and I think it helps my overall well-being. My energy level is noticeably higher.
- I changed GI. This one is somewhat supportive and open minded, at least does not reject the diet connection and has more of an attitude: "If it helps - go for it".
People always keep asking me what there is left after going on all the "-free" diet. Surprisingly a lot. I discovered wonderful gluten free bread "Udi's" at TJ. I can eat bananas and avocados. Buckwheat, rice, and quinoa. I make mushroom/onion gravy on my rice or put honey/jam in it. Publix has certified gluten free oats. I eat diverse meats (in soups or borsch, stews, schnitzels, chicken livers, grilled – at home – chicken, etc. – I discovered, adjusted, and developed many simple and healthy recipes) and make protein smoothies (Whole Foods has plant based protein "Vega") based on Almond Milk. I eat ham and turkey slices, but try to avoid sausages with tons of ingredients. I discovered the joy of grilled/baked in olive oil sweet potatoes, mushrooms, zuccinni, brussel sprouts etc. All veggies (what I tried) I seem to tolerate well as long as they are cooked. Even broccoli which I steam (as well as asparagus and green beans). I sautee spinach and kale, cabbage with carrots. After eliminating Nightshades, I make mashed califlower instead of mashed potatoes, and sometimes buy Sweet Potatoe chips (I found a brand that does not have soy, amazingly many do contain it). I also make omelets with cauliflower, mushrooms, and ham. I eat a lot of apple sauce, and when I can – I bake apples and pears (just cut in halfs and put a bit of honey – delicious!). For protein, based on suggestions here, I started eating peanut butter, which I was a not a big fan earlier – but now love it. It is amazing how our taste buds can be trained!
My main breakthrough discovery was that I could drink juices! It was particularly important for me since we want to go back to baby making plans :) and I wanted to make sure I get enough vitamins. First, juice does not have much insoluble fiber left in it, which is important for us. Secondly, to be safe I would dilute it by taking half water, half juice. I bought a new juicer (sorry old and expensive friend, Vitamix!) and now I everyday make (on rotational basis!) juices with: apples, carrots, beets, pineapple, greens, celery, melon, kiwi, oranges, limes, cucumbers etc. – adding ginger and turmeric, which are supposed to be good anti-inflammatories specifically for GI tract. I have tolerated well all of it. I also tolerated store-bought orange juice (diluted with water). Before I stopped Nightshades I also had good experience with - surprisingly - V8 (not even diluted).
I stopped drinking tea (well, occasionally I drink a cup of green or black), mostly I drink mint tea now. Recently, I discovered Kombucha green tea and my stomach/colon has been fine with it (a couple cups a day).
What did not work well for me was the bone broth. My cholesterol went over the roof. Though possibly not only because of broth but because I was eating a lot of meat and eggs in general – chasing to meet my protein intake. I stopped the broth, and went back to the lighter chicken soup and borsch.
When I crave sweets – I eat homemade jams and peanut butter deserts, I fry bananas in coconut oil coated in sugar and cinnamon crust, and sometimes eat store (Publix)-bought chocolate cookies (“Enjoy life” brand) or delicious raw vegan truffles from Whole Foods (super expensive at $4 for 3 tiny candies, so it is not a frequent treat). I buy coconut milk ice-cream.
I take multivitamins. I also buy local bee pollen - for protein and micro elements. Those vitamin levels that I checked - all were fine.
Overall, my diet did NOT become dull nor I am lacking nutrition. Our meals just changed. It took some learning and adjustment, as well as listening to my body. I am still able to cook many simple and fresh dishes – all without gluten, dairy, insoluble fiber, and soy. Even my boyfriend, who does not have GI problems, does not mind at all the diet and noted many times that he feels much better eating gluten free at home – significantly less bloated.
I slowly tapered off Budesonide in parallel introducing Lialda. Everything was and is going well. I had a small surgery (jaw arthroscopy) yesterday, so I was put on prednisone and antibiotics – so it is not the final report yet. But seeing the difference in how dramatically better I felt, I am convinced now that with the help of the diet, I can control my symptoms (well, maybe with a small help of Lialda) and hope to claim back my life and go back to baby making plans soon, with better luck this time.
Love and Light!
I am 35 yo with diagnoses: lymphocitic colitis, pericarditis, tireoiditis (Hashimoto), ostheoarthritis, hypothyroidism, infertility (premature ovarian failure). I was diagnosed with LC in May 2012 after 7 month of explosive diarrhea (>6-12 times a day). Until I found this forum, I thought it was a result of a stomach virus I caught on our Thanksgiving trip to Dominican Republic: we both had diarrhea but my boyfriend recovered after a weak of antibiotics and I never did. Now I understand that at most it was just a trigger. I was put on and off budesonide, all my questions to GI about the diet met a wall: "No. No connection." As soon as I was off the steroids, diarrhea would immediately come back.
At the same time we were trying to have a baby and did not succeed. We moved to IVF which failed. While waiting for the results, I started having severe chest pains and went to ER a couple times. First, they thought it was PE, then costochondritis, but 3 weeks later I was diagnosed with pericarditis (yet another glorious "-itis"), which later developed effusion. It was labeled "viral" without specifications. I spent countless hours trying to read and see why within one year I developed two huge inflammations in my body, both possible viral in nature – but probably it was a dead-end direction. I was put on NSAIDS (first high doze of ibuprofen, then diclofenac) for 7 months and steroids (prednisone, short therapy, twice)!!! Which (NSAIDS) as I understand now ruined my colon even further. I was taking Misoprostol, thinking I am protecting my GI, but it was stomach and not colon that was somewhat protected. Sadly, the therapy did not work and 14 weeks ago I had an open heart surgery to remove the inflammed sack (pericardium) around my heart. Surgery went very well and I recovered fast. I am back to all normal activities, including working out.
So back to LC. After discovering this forum, I completely changed my diet. I remember that while trying to conceive I had green smoothies and salads and thought I was doing the right thing! Instead, I had to plan my walks in the park from one restroom to another. So here is what I did:
- First I realized that something triggers my immune system to react with all those "-itis".
- I read here that it might be diet, which made sense to me. We are built out of what we put in ourselves.
- In the beginning of July I was put back on Budesonide. But I did not work as well as before. Usually diarrhea would disappear the next day, this time it remained rather watery and around 5-6 times a day.
- On July 25 I started my diet: gluten-free, dairy free, soy free, fiber reduced. I was tested negative for celiac, allergic to soy. BUT. The diet helped dramatically. I was no longer bloated. My stool very soon became formed and reduced to 1-2 times a day. I felt great! In addition I lost about 8 pounds in 2 weeks and my sugar levels went from 99 to 80 in a month.
- at the end of August I also eliminated Nightshades -- after discovering the ostheoarthritis on my spine and knees.
- I can NOT drink alcohol. Forget the bubble stuff. But even a glass of wine makes my tummy upset. Well, it is known to contribute to "leaky guts". It sure does in my case.
- I avoid NSAIDS at all costs (Tylenol, Lortab, Tramadol, etc. for pain when necessary)
- I also learned to do Reiki on myself and I think it helps my overall well-being. My energy level is noticeably higher.
- I changed GI. This one is somewhat supportive and open minded, at least does not reject the diet connection and has more of an attitude: "If it helps - go for it".
People always keep asking me what there is left after going on all the "-free" diet. Surprisingly a lot. I discovered wonderful gluten free bread "Udi's" at TJ. I can eat bananas and avocados. Buckwheat, rice, and quinoa. I make mushroom/onion gravy on my rice or put honey/jam in it. Publix has certified gluten free oats. I eat diverse meats (in soups or borsch, stews, schnitzels, chicken livers, grilled – at home – chicken, etc. – I discovered, adjusted, and developed many simple and healthy recipes) and make protein smoothies (Whole Foods has plant based protein "Vega") based on Almond Milk. I eat ham and turkey slices, but try to avoid sausages with tons of ingredients. I discovered the joy of grilled/baked in olive oil sweet potatoes, mushrooms, zuccinni, brussel sprouts etc. All veggies (what I tried) I seem to tolerate well as long as they are cooked. Even broccoli which I steam (as well as asparagus and green beans). I sautee spinach and kale, cabbage with carrots. After eliminating Nightshades, I make mashed califlower instead of mashed potatoes, and sometimes buy Sweet Potatoe chips (I found a brand that does not have soy, amazingly many do contain it). I also make omelets with cauliflower, mushrooms, and ham. I eat a lot of apple sauce, and when I can – I bake apples and pears (just cut in halfs and put a bit of honey – delicious!). For protein, based on suggestions here, I started eating peanut butter, which I was a not a big fan earlier – but now love it. It is amazing how our taste buds can be trained!
My main breakthrough discovery was that I could drink juices! It was particularly important for me since we want to go back to baby making plans :) and I wanted to make sure I get enough vitamins. First, juice does not have much insoluble fiber left in it, which is important for us. Secondly, to be safe I would dilute it by taking half water, half juice. I bought a new juicer (sorry old and expensive friend, Vitamix!) and now I everyday make (on rotational basis!) juices with: apples, carrots, beets, pineapple, greens, celery, melon, kiwi, oranges, limes, cucumbers etc. – adding ginger and turmeric, which are supposed to be good anti-inflammatories specifically for GI tract. I have tolerated well all of it. I also tolerated store-bought orange juice (diluted with water). Before I stopped Nightshades I also had good experience with - surprisingly - V8 (not even diluted).
I stopped drinking tea (well, occasionally I drink a cup of green or black), mostly I drink mint tea now. Recently, I discovered Kombucha green tea and my stomach/colon has been fine with it (a couple cups a day).
What did not work well for me was the bone broth. My cholesterol went over the roof. Though possibly not only because of broth but because I was eating a lot of meat and eggs in general – chasing to meet my protein intake. I stopped the broth, and went back to the lighter chicken soup and borsch.
When I crave sweets – I eat homemade jams and peanut butter deserts, I fry bananas in coconut oil coated in sugar and cinnamon crust, and sometimes eat store (Publix)-bought chocolate cookies (“Enjoy life” brand) or delicious raw vegan truffles from Whole Foods (super expensive at $4 for 3 tiny candies, so it is not a frequent treat). I buy coconut milk ice-cream.
I take multivitamins. I also buy local bee pollen - for protein and micro elements. Those vitamin levels that I checked - all were fine.
Overall, my diet did NOT become dull nor I am lacking nutrition. Our meals just changed. It took some learning and adjustment, as well as listening to my body. I am still able to cook many simple and fresh dishes – all without gluten, dairy, insoluble fiber, and soy. Even my boyfriend, who does not have GI problems, does not mind at all the diet and noted many times that he feels much better eating gluten free at home – significantly less bloated.
I slowly tapered off Budesonide in parallel introducing Lialda. Everything was and is going well. I had a small surgery (jaw arthroscopy) yesterday, so I was put on prednisone and antibiotics – so it is not the final report yet. But seeing the difference in how dramatically better I felt, I am convinced now that with the help of the diet, I can control my symptoms (well, maybe with a small help of Lialda) and hope to claim back my life and go back to baby making plans soon, with better luck this time.
Love and Light!
Love and Light to all!
- JamesEcuador
- Adélie Penguin
- Posts: 54
- Joined: Tue May 13, 2014 6:59 pm
Welcome! What a wonderful opening post. I've been having a few bad days symptom and diet wise - this kind of take on life and how to deal with the nightmare than can be MC in a positive way has stopped me feeling sorry for myself! Also, some great food options (where I'm really struggling at the moment). I wish you lots of luck with the baby making!
Welcome to the group...that is really a great post and almost identical to my experiences. You are on the right track already just keep up the good work. Hopefully soon you can return to baby making.
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
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
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- Posts: 21
- Joined: Tue Sep 16, 2014 2:36 pm
- Location: Atlanta
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Have you had any mineral / heavy metal testing done??
There is a hair analysis test that can provide good info. The reason I mention it is that excess heavy metals like copper can affect the ovaries.
(I have had PCOS my whole life and now know that excess heavy metal made it worse)
Clearing the heavy metals is not hard, just take the right supplements like zinc, magnesium, Vit C, Molybdenum, Vit E (soy free), active forms of B6 and B12.
Also, have you had your Vit D3 level checked?
There is a hair analysis test that can provide good info. The reason I mention it is that excess heavy metals like copper can affect the ovaries.
(I have had PCOS my whole life and now know that excess heavy metal made it worse)
Clearing the heavy metals is not hard, just take the right supplements like zinc, magnesium, Vit C, Molybdenum, Vit E (soy free), active forms of B6 and B12.
Also, have you had your Vit D3 level checked?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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- Posts: 21
- Joined: Tue Sep 16, 2014 2:36 pm
- Location: Atlanta
Gabes, this is very important and helpful piece of information! I have not done the heavy metal testing and I probably should (I grew up in heavily industrial region). I will certainly research and try to do it asap - thank you so much for advice!
As for Vit D. I did it recently:
Vit D 25-OH Total 35 Range: 30 - 100
Vit D, 25-OH D3 35 Range: Not established
Vit D, 25-OH D2 <4
My primary care just ignored it and said "all is fine". But clearly it is on a lower end. I think I should look into supplements.
Just googled "vit D and fertility" and sure enough - it returns tons of articles. Grrr... why didn't any doctor told me before??
As for Vit D. I did it recently:
Vit D 25-OH Total 35 Range: 30 - 100
Vit D, 25-OH D3 35 Range: Not established
Vit D, 25-OH D2 <4
My primary care just ignored it and said "all is fine". But clearly it is on a lower end. I think I should look into supplements.
Just googled "vit D and fertility" and sure enough - it returns tons of articles. Grrr... why didn't any doctor told me before??
Love and Light to all!
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
It's not totally the doctors fault, the system that pays them does not encourage pro-active approach to nutrition etc.
in Aus, doctors do one semester about nutrition. Once qualified their ongoing education is provided by big pharma, so the outcomes of various studies over the past 5-10 years about the benefits of Vit D3, active forms of B vits etc are buried under the pamphlets for all the medications.
Only wholistic /environmental medicine doctors take a pro-active approach. Generally they are rare and very busy, and their fees reflect this demand. In some cities here in Aus it is a 6 month wait to get an appointment.
If you can afford it, I would recommend finding a good practitioner, ie nutritionist, environment naturopath, do the mineral, heavy metal testing. Don't let them sell you expensive liquid herbs/ supplements. Most of what you need you can purchase at reasonable price from iherb.
Thanks to Tex's years of research, and many recent published articles, there is a lot of information and guidance available here.
If you had contact with heavy industrial, I would start with the following
Keep in mind it will take a couple of months to clear toxins and correct deficiencies...
- Vit D3, 3000-5000iu per day. If you can spend the extra and get lingual, it is worth the outlay, you will absorb it better and it will aid the absorption and function of other supps (ie get your money's worth out of them!! )
- zinc 50mg per day - once you have your tests and know what is going on, if copper is high I would increase this. Iherb has MC safe zinc. Don't have zinc near iron rich meals ie when you have the liver.
- magnesium, take min 800mg of elemental magnesium per day. This can be achieved via the sprays and lotions to avoid D
- Vit C min 1000mg per day, 1500mg would be good.
Start with these, start them one at a time, start with 1/4 dose and work up to full dose over a couple of weeks. Get one settled then start next one.
When you have the testing, then look at the other stuff to clear heavy metals.
The four above will do multiple things, help leaky gut healing, help adrenals, calm any histamine inflammation, help clear some toxins, improve cell health. A good foundation for a couple of months to then clear heavy metals/ toxins.
I have spent the last 6 months doing this. Fixing the magnesium deficiency, fixing the histamine inflammation made clearing the toxins way way easier.... Albeit, there was a rough couple of weeks when I took the full on approach to clearing toxins.
It was SSSSOOOOOO worth it. Fitness and wellness,this is the best I have been in 6-8 years!!!
in Aus, doctors do one semester about nutrition. Once qualified their ongoing education is provided by big pharma, so the outcomes of various studies over the past 5-10 years about the benefits of Vit D3, active forms of B vits etc are buried under the pamphlets for all the medications.
Only wholistic /environmental medicine doctors take a pro-active approach. Generally they are rare and very busy, and their fees reflect this demand. In some cities here in Aus it is a 6 month wait to get an appointment.
If you can afford it, I would recommend finding a good practitioner, ie nutritionist, environment naturopath, do the mineral, heavy metal testing. Don't let them sell you expensive liquid herbs/ supplements. Most of what you need you can purchase at reasonable price from iherb.
Thanks to Tex's years of research, and many recent published articles, there is a lot of information and guidance available here.
If you had contact with heavy industrial, I would start with the following
Keep in mind it will take a couple of months to clear toxins and correct deficiencies...
- Vit D3, 3000-5000iu per day. If you can spend the extra and get lingual, it is worth the outlay, you will absorb it better and it will aid the absorption and function of other supps (ie get your money's worth out of them!! )
- zinc 50mg per day - once you have your tests and know what is going on, if copper is high I would increase this. Iherb has MC safe zinc. Don't have zinc near iron rich meals ie when you have the liver.
- magnesium, take min 800mg of elemental magnesium per day. This can be achieved via the sprays and lotions to avoid D
- Vit C min 1000mg per day, 1500mg would be good.
Start with these, start them one at a time, start with 1/4 dose and work up to full dose over a couple of weeks. Get one settled then start next one.
When you have the testing, then look at the other stuff to clear heavy metals.
The four above will do multiple things, help leaky gut healing, help adrenals, calm any histamine inflammation, help clear some toxins, improve cell health. A good foundation for a couple of months to then clear heavy metals/ toxins.
I have spent the last 6 months doing this. Fixing the magnesium deficiency, fixing the histamine inflammation made clearing the toxins way way easier.... Albeit, there was a rough couple of weeks when I took the full on approach to clearing toxins.
It was SSSSOOOOOO worth it. Fitness and wellness,this is the best I have been in 6-8 years!!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
- Posts: 21
- Joined: Tue Sep 16, 2014 2:36 pm
- Location: Atlanta
@ Summer: I have been around for a couple of month, just as a user :) - mostly reading others stories and experiences - and learning a ton from them. And tried to figure our what I can do to fix MC for a couple of years (just went on a "viral" and "weak immune system" tangent first). So I am a newbie, but the one who hit the wall many times :) ... Thanks so much for the warm welcome!!!
@Gabes: huge thanks for such a useful information! and for taking time to write all this details!
I also realized that my D3 level of 35 was AFTER taking 3000 iu (part of my prenatal) per day. So I clearly need more. I am so glad you brought it to my attention!
I am a strong believer and supporter of detox - just did not know how to do it properly with MC. Thanks to your advice I now have a place to start!
@Gabes: huge thanks for such a useful information! and for taking time to write all this details!
I also realized that my D3 level of 35 was AFTER taking 3000 iu (part of my prenatal) per day. So I clearly need more. I am so glad you brought it to my attention!
I am a strong believer and supporter of detox - just did not know how to do it properly with MC. Thanks to your advice I now have a place to start!
Love and Light to all!
-
- Posts: 21
- Joined: Tue Sep 16, 2014 2:36 pm
- Location: Atlanta
Never mind!!! I am sorry, Gabes! I found it in one of your posts!! Thank you for sharing it with us!!
*****
Gabes, quick question. You mentioned lotion form of magnesium. Can you recommend anything specific? Was there a specific lotion/oil/cream you tried and liked?
Thank you so much!
*****
Gabes, quick question. You mentioned lotion form of magnesium. Can you recommend anything specific? Was there a specific lotion/oil/cream you tried and liked?
Thank you so much!
Love and Light to all!