New and wondering where to start.

[renee2]

Tex,
I hope you are right. At one point in my life I was bicycling so much I started to lose toe nails. I had to consume more carbs in order to do it, or so I thought. I may have to rethink the carb role in my life. Thanks for the link. I will purchase them. It seems odd to me that the jasmine rice, which is carbs doesn't bother me but the taters sure do. I'm also wondering if the fat in the broth isn't a problem. The lamb broth was quite fatty. The chicken broth didn't pose a problem.

I haven't had any luck finding frozen turkey thus far. I'm going to have to branch out from Kroger to find some of the things I need. I know some people use turnips in place of potato so I'm going to see if that's high in carbs, too.

I don't have to worry about loosing weight right now. I'm one of the unfortunate few who gained weight during the winter so I have a surplus.

On a brighter note, grocery shopping is easier. I skip nearly every isle now. Ha.

[renee2]

I have a concern that probably has nothing to do with LC, but I'm sure one of you can answer this question for me. I've been waking up in the middle of the night feeling as if my organs are glued to the back of my spine. It's a very uncomfortable feeling which is hard to describe, but it feels like something will virtually resist expanding with a breath. After I relieve my bladder it goes away. It's almost as if there isn't enough room in my body for the urine and stool that collects at night. Though it's painful, it's short term, but I'm not sure it's related and don't really want to speak to my doctor about it just yet. I've been tested up one side and down the other and left to figure this stuff out for myself anyway.

[tex]

Tex,
I hope you are right. At one point in my life I was bicycling so much I started to lose toe nails. I had to consume more carbs in order to do it, or so I thought. I may have to rethink the carb role in my life.

Remember that protein and fat are essential components of the human diet, but carbs are not. We can not only survive, but thrive without carbs — protein and fat in the diet are absolutely essential, however.

Yes, early on in our recovery too much fat can be a problem because steatorrhea is definitely a very common problem with MC. Unabsorbed fat is a lubricant that can contribute to promoting D.

I can't say I can exactly relate to the uncomfortable feeling you described, but I recall that when I had the magnesium deficiency symptoms I would wake up during the night feeling very uncomfortable with bladder pain (and a feeling of an overfilled bladder), and I would feel an urgent need to take a deep breath, but I couldn't, as if my diaphragm was too weak to draw a deep breath, or there wasn't room to draw a deep breath. Sometimes it was a bit like having asthma, except that there was no wheezing.

Also, regarding bladder pain, MC apparently commonly causes the same type of inflammation in the bladder as is present in the intestines (lymphocytic infiltration into the mucosal lining). Many of us here have described the clinical symptoms, and they are virtually identical to the symptoms of interstitial cystitis. As the MC resolves, so do the IC symptoms.

Tex

[renee2]

Thanks, Tex. This is such a challenging position to be in. I'm working hard to figure things out but it seems as if I think I know something and then a new symptom arises from a food I thought was working out. Not long ago I stated I had a reaction to lamb and potatoes. I was sure it was the potatoes and backed off of those. I felt safe with chicken and rice, but the other day I was eating some on my lunch break and after the first bite I started with watery eyes and a runny nose. It went away as quick as it came but it was odd to have my nose literally start running when I was fine before. The window in the break room was open and there are some blooming trees right outside and that room is full of mold in the ceiling. I am certain of this because this past winter a section of the ceiling caved in and I could see it. They've since patched it up, but the building is old and dirty. I'm not sure how I'm supposed to figure out what is food, allergy, exposure to virus and bacteria or what is going on.

The chicken thing freaked me out though. I think I'll avoid it for a while. I'm thinking the lamb is just too fatty for me right now. I had potatoes with beef last night and that worked well. I'm pretty sure I'm going to have to whittle my intake down even more before I get some better results, but for now dealing with way smaller portions and limiting myself to meat, rice, coconut oil is challenging enough.

My family is coming over for dinner tonight. They are having Italian. This will be my first challenge to eat my own food while they enjoy theirs.

[tex]

Was the chicken stored in the fridge for a day or so? Chicken is notorious for building up histamine levels whenever it's not frozen.

But you're also correct that everything (pollen, mold, histamine in food, etc.) can work together to cause problems for us. Histamine has a characteristic that can make it difficult to predict the risks — it can accumulate in our body without causing any problems or symptoms, but if/when the level exceeds our personal threshold limit, then we begin to react to it. Some refer to the effect as a bucket filling until it overflows. Apparently the chicken caused the bucket to overflow. Under other circumstances (without the pollen/mold/etc.) it might have been OK.

It takes a while, but we eventually get used to eating our own food while everyone around us is being downright decadent. I eat before attending banquets and similar affairs, and it doesn't bother me a bit to not eat while everyone around me is pigging out. Humans are very adaptable when they need to be. Of course it bothers everyone else that I'm not eating but that beats the heck out of getting sick.

You're very welcome,
Tex

[Gabes-Apg]

Renee
I had a lightbulb moment

I am not trying to scare you or sensationalise things, but based on what you have shared I think it is the non food triggers in your work place that having the most impact on your wellness..

thinking about your work environment with equipment, telementry equipment, etc etc and you mentioned the mold. this article came to mind

http://agoodhealthadvocate.com/health/m ... -with-emf/

An acquainted physician in Switzerland who is a main mold researcher in Europe made a beautiful experiment. He grew mold cultures under a farraday cage. Simply a silver cloth… it looks like a mosquito net made out of silver coated cloth draped over the mold culture.
Then he measured how much mycotoxins how much toxins are these molds producing on a daily basis, very easy to do.
Then he lifted the mosquito net and exposed the mold culture to the ambient electromagnetic radiation in his laboratory that was caused by the lights that were on, the computer in the corner and especially he found out later the ambient cell phone radiation. You know, from the nearby cellphone tower that was broadcasting cell phone radiation.
He found out that the production of biotoxins in this culture went up more than 600 times. Not only that the mold suddenly put out significantly more mycotoxins to protect themselves but also much more virulent, much more viscous, more poisonous mycotoxins

I mention this as something to consider as if you are reacting strongly to this type of biotoxin, you will get swayed results with your food testing.

[renee2]

Tex,
I bought the organic chicken fresh, cooked it straight away, froze individual portions except for the one I took to work that day. That one I mixed with the broth and some rice and refrigerated until lunch time. So, it had been less than twenty-four hours. I suppose I should have frozen it too?

I ate rice before my family arrived and nibbled a tiny bit on the chicken alfredo, but steered clear of the salad, bread, and dessert. It was a way to not feel so sorry for myself for not being able to enjoy the yummy food and I didn't get sick but that's probably from the pepto I strategically took before the meal. I've been on pepto now for three weeks and though it helps some (no more explosions or WD), I still had an accident two nights ago. Thank God I was on my way up the stairs to my own apartment. Though I am mostly concerned with the irritation in my colon I struggle a lot with the way this makes me feel as a woman who has always liked to be tidy in the personal care department. I suppose I should be happy it's only happened a couple of times in the last three weeks, but this doesn't seem like a great improvement to me. I wonder if I should tell my doctor or just finish out the pepto treatment and see where I stand then? I know telling him and trying to explain how the diet I'm trying hasn't had time to kick in with my body yet and I'm still on a trial and error phase of it and learning discipline won't yield a positive response from him. It would be nice to have a doctor I could exchange ideas with but that isn't realistic at this point.

Gabes,
Thank you for the information. I listened to video and can relate to what he claims. Many years ago i was tested for allergies and mold, yeast, and dust were big allergens for me. A few years ago I was living in an apartment that had a lot of mold in it. I cleaned it up and it got better for a while but I think it was in the ventilation system. I developed a cough and just didn't feel well. The situation was further complicated by a stressful relationship that I was destined to leave. Two or three weeks after moving the cough went away. I'm sure it was the mold. My neighbor, in the same building, suffered too.

I have had a lot of autoimmune diseases. I suppose the first one was Fifths disease, and then there's been Lyme disease, shingles, spinal menningitis, and hepc. I don't drink or do drugs, but I have had extremely stressful situations in my life, as I'm sure most of us have. I just don't think my anxiety level helps with healing. Usually, when stress is the culprit, I develop shingles, which I didn't do with the onset of LC, so I'm guessing stress wasn't the cause. Not that the cause matters specifically but I would surely like to understand why I contract so many of these weird diseases. If there's a way to improve my immune system I'd like to know that too.

I took this week off work to allow myself to sleep and eat right and heal. I am not going around people who are sick, not eating any food out, or risking any other contamination that I can see. I'm also trying not to worry about what's going on at work. I got a call this morning from them which I didn't answer. I really feel like stress and the moldy environment there is a problem for me. Also, I find it interesting that when I first started working there more than one employee warned me about drinking the water. They said it gave them D. I thought they were being paranoid, but now I am taking bottled water with me. Sometimes I can't get way so I will eat the ice. They keep the ice in a cooler at the nurses station and once I saw mold on the utensil they use to scoop it with. It's supposed to be bleached down every night but that doesn't happen. I wonder if there's a way to have the water tested?

[renee2]

Would anyone recommend I take an antihistamine at this stage or do I need to be in remission first?

[Gabes-Apg]

yes, take antihistamines - you will know within a few days if they are helping.

there are water testing kits available in Australia. so I assume they would be available in the USA.
I take my own filtered water everywhere, everyday.

glad the info was helpful, and yes, stress is not good in times like this.
When the body is like this, it is time to stop, reflect, ponder various aspects of your life and embrace some changes - not an easy thing to do.

to improve the immune system takes the following;
-the right nutrients, / optimising cell health, healthy gut
- minimising toxins and inflammation (food, environment, anxiety)
- lifestyle changes, relaxation, nurturing ourselves 'guilt free', maybe letting go of perfectionism/over committing ourselves to work/activities, avoid toxic situations (people etc)
- good quality rest and sleep

[renee2]

I can't take benadryl. It makes me hyper. Most medications work the opposite with me. What, in your opinion, would be the safest for me given that I react to low dosages pretty well. Something not that strong to begin with, perhaps?

[renee2]

Has there been any link to hormone replacement and LC? It's possible that my problems are associated with use of the nuvaring. It's also possible that I'm being paranoid about all of this stuff, but I just feel the need to rid my body of all possible irritants. I developed D within an hour of the first time I inserted it, but contributed it to the oh so spicy food I ate that day. Now, I'm not so sure. I researched the possible side effects of nuva ring and indeed D is one of them. I don't need any other poop causing issues. Ha.

[tex]

I suppose I should have frozen it too?

Normally, 24 hours in the fridge shouldn't be a problem. Until we do a significant amount of healing, sometimes we may react for no apparent reason. The digestive system tends to be mighty sensitive when it is severely inflamed.

I know telling him and trying to explain how the diet I'm trying hasn't had time to kick in with my body yet and I'm still on a trial and error phase of it and learning discipline won't yield a positive response from him. It would be nice to have a doctor I could exchange ideas with but that isn't realistic at this point.

You're probably correct. Most doctors believe that intestinal damage from MC can heal in a few weeks or so, but it always takes much, much longer than they realize. Kids tend to heal relatively quickly, and kids with celaic disease for example typically heal in less than a year (IOW, the histology of their small intestine returns to normal within a year, with a clean, gluten-free diet). But adults typically take from 3 to 5 years for the gluten damage to heal (as verified by endoscopy). And as we get older, our intestines may never heal completely, but it will be good enough for all practical purposes (as long as our diet is clean).

Usually, when stress is the culprit, I develop shingles, which I didn't do with the onset of LC, so I'm guessing stress wasn't the cause.

According to my theory, the immune system tends to concentrate on what it perceives as the main threat at any given moment in time, and the experiences of members here supports that theory. My pollen allergies disappeared until I was able to finally get my MC symptoms under control, and then they slowly returned. That implies that as the inflammation associated with MC developed, your immune system concentrated on that and ignored the shingles virus that was in hibernation. My guess is that the rash associated with shingles is a mast cell over-reaction initiated by the immune system. As long as the immune system ignores the virus, there's no reaction. My research shows that stress promotes inappropriate mast cell activity, and that's why shingles respond to stress. But my theory of the etiology of MC requires chronic stress as a prerequisite.

Not that the cause matters specifically but I would surely like to understand why I contract so many of these weird diseases. If there's a way to improve my immune system I'd like to know that too.

All AI diseases (and most other diseases, for that matter) are due to inflammation. And virtually all inflammation originates in the gut, because of food or chemical (meds, etc.) sensitivities. The fuel on which the immune system operates is vitamin D, so vitamin D is the main key to a healthy immune system.

I took this week off work to allow myself to sleep and eat right and heal. I am not going around people who are sick, not eating any food out, or risking any other contamination that I can see. I'm also trying not to worry about what's going on at work.

That's definitely very beneficial for healing.

I wonder if there's a way to have the water tested?

Every state should have a water quality agency available for testing water samples, usually located in the capitol.

Has there been any link to hormone replacement and LC? It's possible that my problems are associated with use of the nuvaring.

That could be a key item. MC is strongly affected by natural (pregnancy/lactation/menses, etc.) hormonal changes and hormone supplements, including HRT and contraceptives. Some members here have found it impossible to reach remission because of these issues even when they tried transdermal administration.

Tex

[renee2]

Tex,
I finished reading your book last night. Thank you so much for writing it. I found myself throughout the pages and had a chuckle at how many of the questions I asked you yesterday were discovered towards the end of the book. It occurred to me that if anyone were destined to get LC, it was me. I have nearly all of the predisposition factors.

I quit smoking last December when my granddaughter was born. It didn't stick but I did quit for a few months.
I have been at my job for a year and a half and the first year was night shift. I barely saw the light of day and I'm sure this didn't help with the vitamin D absorption. My diet went from mostly organic and home cooking to eating fast food in the middle of the night. Sometimes I wonder if my really healthy eating habits didn't exacerbate the situation when I suddenly switched to not only overeating but also introducing a lot of processed foods at once. The choices for delivery late at night are pizza, chinese, and subs. So, your theory of increasing food sensitivities with a steady intake of them would also apply to me. I also went through a stressful ending of a long-term relationship that required a move, new job, and a period of grieving. I lost four significant family members within those two years as well.

Meanwhile, I seek the help of a physician who diagnoses me as depressed and puts me on medication. I was on that medication for months before LC diagnosis and symptoms didn't improve once I stopped it, but who's to say how long I had this before the symptoms became so apparent?

I also saw an ob who put me on HRT so that could be a contributing factor. I removed the nuva ring last night so we'll see if anything improves. Of course now I will still have hormonal fluctuations but I have always experienced looser bowels during PMS time. I'm hoping this will help some, too.

I was able to find a frozen turkey today and am looking forward to something other than beef, which seems to be fine for me. I also bought rice cakes. My stomach seems to be going down some. I was waking up in the middle of the night with it feeling so tight and uncomfortable, but I didn't do that last night. I do have an area just above my belly button that feels as if it's bruised inside. Not sure what that's about.

[tex]

It seems that there are so many aspects of modern life that make us vulnerable for the development of MC. I can remember sometimes having a persistent dull ache in the area of my belly button back when I was recovering. I could never decide if it was the feeling of something being stretched too far, or something else, but it only occurred when I was very bloated. Prior to the bloating symptoms, I always slept on my belly, but I quickly learned to sleep on my back , and even then, as you mentioned, often the pain would awaken me during the night. When all the joint pains and various other pains were going full blast, I would be continually changing positions, trying to find a comfortable position, but no matter what I tried, within a minute or 2 I would be shifting my position again. There was no comfortable position on some nights.

The only good thing about active MC symptoms is looking back on them after we are in remission and thinking how great it is to be past that miserable stage of our life.

It sounds as though you're making progress.

You're most welcome,
Tex

[Gabes-Apg]

Renee,
have you had a chance to read through Erica's Journey.

she too found digestion issues got worse linked to hormone issues
check out page 14 in this thread
http://www.perskyfarms.com/phpBB2/viewt ... &start=195