New and wondering where to start.

[renee2]

Tex,
I do believe I'm making progress. I actually feel hopeful today, which hasn't been happening often in my life lately. That stretching feeling behind your belly button was something I experienced when I was pregnant, too. I now remember asking my ob about it and she told me that there is a sort of sheath behind the belly button that stretches as the belly expands. My stomach is certainly expanded right now. There isn't any doubt that if I were a younger woman, and wore a maternity top, people would think I was pregnant. It isn't a horrible pain, but like you pointed out with all of the little pains adding up at night it is difficult to get comfortable. My stomach seems to get bloated worse at night. I'm doing a little better by not eating so late, but I've been off work so it's easier to time things to make digestion better before I go to bed. I'm not sure how I will handle this problem when I return to work. I don't get home until after seven and usually don't have time to eat at work after four. This is a problem I feel I must solve. I could take something to work to have for dinner if I didn't have to sit down to eat it. Maybe a protein drink or some sort of healthy liquid choice that would fill me up and then not eat dinner when I get home? I'm not drinking milk and don't know of a drink that I could have that doesn't require it being mixed with milk. I suppose I could use almond milk? If I don't do something I'll end up starving by my shift's end and it will be hard to not stop for fast food. Once last week I stopped at Captain D's and got their grilled fish, rice, and steamed broccoli. It didn't make me sick, but I fear I'll get some bad fish.

Gabes,
Thank you for the thread recommendation. I removed the nuva ring two days ago and have only used the potty once today. I also took an antihistamine yesterday and today, so I'm not sure which one caused the improvement, but I'm surely grateful for it and your advice. The active ingredient in the antihistamine I took is loratadine. I've noticed some people take H1 blockers and some take H2. I get that H1 is mostly used to treat respiratory issues and H2 is more helpful for GI symptoms, right? So, if the loratadine is for respiratory why do some take it? Given I frequently have heartburn would a H2 be better for me or is this another trial and error situation?

I also followed the links to the articles about vitamin D and it's relationship to depression found in that thread. I believe I'm doing better since I stopped taking an antidepressant, but the literature seems to be conflicting when it comes to antidepressants. Some articles seem to imply that antidepressants are useful in treating LC and some suggests that it makes it worse.

I was also taking a ton of vitamin and herbal supplements when the D started. I stopped those immediately and I think those may have added to the work my body needed to do to process what was probably unnecessary additives. The only one I continued to take was melatonin, which really helps me relax before bedtime. I did some reading on it and none of the literature I found suggests that it could cause digestion problems. Do you have any thoughts or know of anyone else who uses melatonin? It's the only thing I have left that I could remove from my system that could benefit my gut situation and I am considering doing just that. I started taking it because I was working nights and was having difficulty sleeping during the day and I was sweating so much that sleeping was something I dreaded. I'm now on day shift so it's a bit easier to sleep, but the sweating and itching is still a problem. In fact, the itching has worsened the last couple of days. I'm not sure what that's about. I'm wondering if it could be the epsom salt baths I've been taking at night. I bought the kind with lavender in it. I suppose that could be a problem.

Thanks again for all of your help. On a really positive note, I made what I am calling paleo pie for dinner last night. It's basically ground beef with mashed potatoes and a bit of coconut oil and salt and it was yummy. Ha.

[Gabes-Apg]

for sensitive people added oils/scents can cause skin irritation, trying some plain epsom salts will confirm that

glad the paleo pie was yummy! and that with the various small changes etc you are seeing progress! woo hoo!

re H1 and H2 etc
histamine inflammation can affect different systems in the body. H1 reactions involve nose, mouth, lungs, eyes etc excess mucus
H2 reactions are more gut related, inflamming the esophagus and the gut

this diagram explains which reactions are H1 or H2
(it is missing some info at the bottom - I am trying to find original source so I can provide complete diagram, but that may not be until later tonight after work)

[Gabes-Apg]

Renee
here is the original discussion with the full diagram (from 2012)

til then we were aware that histamine and mast cell were kinda linked to MC, but as time went on (and more articles became available) we understand the linkage way more now.

the main part of sharing this discussion is how histamine affects different parts/systems in the body
http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell

[tex]

Renee,

IMO the main reason why not everyone can safely take an H2 blocker is because the main purpose of histamine in the stomach is to activate the parietal cells so that they will begin to produce additional gastric acid in anticipation of a meal. Suppressing stomach acid can lead to poor digestion, causing heartburn, indigestion and compromised digestion as food travels the rest of the way through the digestive tract. Obviously this can make MC symptoms worse, or even trigger a flare in some individuals.

In the upper digestive tract (mouth and esophagus) and in the respiratory system, the main purpose of histamine is to activate immune system agents that are proinflammatory, designed to track down antigens or other foreign items entering the body that the immune system perceives as a threat to health. IOW there's typically no downside to suppressing or preventing histamine activation of H1 receptors, but there can definitely be a downside to suppressing or preventing histamine activation of H2 receptors.

Tex

[renee2]

Thanks so much for the information on histamine. I've read all of the material and have an elementary idea of how and why it works, or doesn't.

I'm feeling really distraught today. I had that day a couple of days ago when I felt so good that I nearly convinced myself I was well. I felt great all day long, but that night I woke up in an incredible amount of pain and had D as bad as it was in the beginning of this journey. I also nearly choked on fluid that rose to my mouth. My throat felt swollen after that episode. The reason I feel so distraught is because I cheated on my diet and thought I was going to be fine. Mom had mad biscuits and gravy and though I only had a tiny bit, and it didn't effect me until some twelve hours later, it was brutal. I also had a diet coke that day, which is something I haven't had in a while either, so maybe it was that or the combination? The rest of the day I stuck to foods that haven't caused problems in the past. The other thing is I took an Ultram for cramps, which I've heard was safe but maybe because I hadn't taken one in a few months it made me sick, too. My Mom also lives on a farm in the country with dogs, cats, and roosters so the environment may have played a part. I feel like I'm going to have to live in a bubble and was really down on myself yesterday.

Aside from the GI issues from that day, I woke up yesterday feeling like I had been run over be a truck. I had a headache, runny nose, and just felt like I had a hangover. I ate right yesterday and the GI stuff is better but I'm still stuffed up and have a headache. I bought some reditabs and they helped last night so I'll try them again this morning.

It's back to work for me tomorrow. The good news is I spent a lot of time preparing foods that I can take to work this week. This seems like a grueling process to me. I've been on pepto for three weeks now and I clearly see that without it and without being very careful with food and exposure I am no better than I was when I started it. I guess I'll have to work harder on accepting that.

I'm reluctant to tell the GI doc about the fluid I feel rising in my throat at night because he'd probably order an endoscopy and I feel as though I could do a better job with minimizing portions and diet. I may have to go to just broth at night.

[brandy]

Hi Renee,

Mom had mad biscuits and gravy and though I only had a tiny bit, and it didn't effect me until some twelve hours later, it was brutal. I also had a diet coke that day,

We need to avoid 100% of gluten. Get your Mom a box of gluten free biscuit mix. Gravy can be made with the alternative flours. It is every bit as good as gravy made with gluten (wheat). When I make gluten free biscuits I find using almond milk and extra virgin coconut oil as the fat works well.

Ditch the diet coke. Safe replacements are unsweet iced tea, sparkling waters (San Pellegrino, Perrier).

[tex]

Aside from the GI issues from that day, I woke up yesterday feeling like I had been run over be a truck. I had a headache, runny nose, and just felt like I had a hangover.

That's a classic MC morning — it's typical of how we feel when we are in the early recovery stages (especially after an episode of exposure to gluten). We've all felt that way many times, but it will pass as you get your diet under control and begin to heal.

Ultram shouldn't be a problem unless you happen to be sensitive to an inactive ingredient in it. It was probably just a casualty of the biscuit and gravy fiasco.

Acid reflux is a common problem when MC is active. You can minimize the risks by avoiding eating any heavy meals for several hours before bedtime, and especially avoid common triggers for reflux such as alcohol, coffee, tea, pepermint, chocolate, citrus (including tomatoes), onions, garlic, and carbonated drinks. Never lie on your right side because that places much of the stomach above the level of the lower esophageal sphincter (LES). If bloating, spasms, or whatever happen to cause the LES to relax for a split second or more, stomach contents will backflow into the esophagus and the pressure from gas can cause it to flow surprisingly far (if you are lying on your right side).

Higher doses of vitamin D (10,000 IU per day, for example) can reduce the reflux risk. For more information on this, please see the thread at the following link:

To Anyone Who Has Acid Reflux, Indigestion, Or GERD

The shortness of breath that I mentioned in a subsequent post in that thread was due to a chronic magnesium deficiency that I finally resolved last year.

Tex

[renee2]

Thanks so much for your continued support. I'm guessing that people who have never experienced this have any idea just how difficult it can be. I used to pride myself on being a tough girl, but no.

So, I'm starting to be able to make some connections which is nice, but the more I know the more I know I don't know. Is it correct to think that the immediate reactions I have, which I rarely have now because I diet restrictions, are from mast cell issues and the delayed reactions are more of a gluten problem? Is it also true that the other problem I seem to have is with food that's just too rough on my sensitive digestion system for now, but may improve as I heal? In other words, is it possible that some things I'm reacting to now are not really harmful for me but just too violent for my system, which would be things like spices, lettuce, and most raw fruit and vegetables.

I bought some rice chex and almond milk and had no problems, though I was stingy with portion size and careful to chew it very well. I've become obsessed with thorough chewing. Ha.

[brandy]

Hi Renee,

Good for you for getting the connections!

Is

it also true that the other problem I seem to have is with food that's just too rough on my sensitive digestion system for now, but may improve as I heal? In other words, is it possible that some things I'm reacting to now are not really harmful for me but just too violent for my system, which would be things like spices, lettuce, and most raw fruit and vegetables.

Yes. In remission I can eat a little salad and raw fruit.

[tex]

Renee,

As Higgins remarked in My Fair Lady, "By George, she's got it."

I agree with Brandy — you are right on target with everything you mentioned. And yes, taking extra time to chew food thoroughly when our system is so sensitive is surely beneficial for digestion. You are well on your way.

Tex

[renee2]

It seems as if I'm beginning to see a silver lining from all of this LC stuff. For the longest time, perhaps my entire life, I have felt the need to nap during the day. You could say that I've been obsessed with the number of hours I needed to sleep. Mom says I've been doing that since childhood. Anyway, I would wake up fine and happy and then after eating it would all go downhill. If given the opportunity I would sleep it off and start the process over again. I am no longer noticing an increase in lethargy after eating if I eat properly. Also I am noticing a real increase in mental sharpness. It's an odd feeling for me. It feels like the difference between a crisp autumn day and a steamy summer day. Whatever it is I'll take it. I sure hope it lasts. It seems strange to be experiencing this after stopping medications that were supposed to help with things like mood. I'm no longer on antidepressants or HRT and I feel better mentally and emotionally.

I've been very strict with my diet, food preparation, and portion sizes. I've learned that the best way for me to cook meat is to buy a roast (I don't want to fool with buying, storing, cooking steak every night and beef is my best friend right now), and slice it frozen, flash fry it in coconut oil, adding only salt, and place the frozen chunk back in the freezer. It always tastes fresh and only takes a few minutes to fry if sliced thin. As long as I eat that with just potatoes (I do best with the red, or new, potatoes), or rice or boiled carrots, I'm good to go. I tried cauliflower, but it just isn't too appealing to me boiled to death. I am going to try turnip today because rice and potatoes are making me think I will gain weight. I also have a popcorn love relationship and can't have that just now, so I'm taking rice cakes, breaking them apart, and topping them with heated coconut oil and salt (I could use bacon bits because bacon doesn't bother me either). Yummy.

I am only having one or two bowel movements a day and they are somewhat formed. I can also pass gas and burp without fear, mostly. Ha. I fear this will decline as I can only take the pepto for two more weeks. I'm very afraid to stop taking it.

My legs are improving in some ways. At first I couldn't use them to propel myself upward so stooping to pick something off the ground became impossible. I had to be sure there was something to grasp onto so I could use my arms to bear most of the weight. I get my pepto at Wallgreens and they keep it on the bottom shelf. I nearly cried the first time when I couldn't get back up, but now I can. I still have problems with them feeling like they weigh a ton when I'm climbing stairs. I live on the third floor and this has never been a problem for me, but now I have to hold the rail just in case they suddenly get too heavy. I also had charlie horses again last night. Those had improved but now I fear stretching before I'm fully awake again and my sleep is disturbed because of it. I'm still taking the magnesium and have increased the vitamin d and I use the spray. I have a feeling that my magnesium problem was a pretty severe one and may take some time to improve.

My other issue is I feel extreme guilt for not wanting to exert the necessary energy to spend time with my family right now. I've explained what's going on with me to my children and they are very supportive but I still feel guilty. It just seems like all I can do right now is center myself around caring for me. It feels like a full time job. When I'm not working I just don't want to do much. The smallest of tasks causes anxiety for me and I'm trying to keep that down to a minimum. I know it's counter productive to take time to rest and then waste it feeling anxious but it is what it is.

Wish me luck as I go off this pepto. It seems crazy to me to go from 9 pills a day to nothing and not expect WD to return. I wonder why GI didn't recommend I taper it down?

[tex]

Renee,

You are making great progress! Yes, fatigue is a primary symptom of MC and if yours is already declining, you are way ahead of the normal trend. Mental clarity (brain fog) is another symptom of MC that typically is slow to resolve. It almost always takes most of us a year or more to get rid of our fatigue and brain fog. That has to mean that you are healing at a much faster rate than most of us.

I had the same problem before I significantly increased my magnesium supplement. I didn't dare stretch my legs before getting out of bed because it would trigger severe cramps every time. It took a few months of higher doses of magnesium before I was able to get past that limitation. It appears that absorbing magnesium is easier said than done, for many of us — a lot of it is apparently wasted because we don't absorb it very well at all.

Please don't feel guilty about taking care of your own needs above those of your family. No one else can take care of your health as well as you can, and you are doing your family a favor by taking care of your needs so that you recover as quickly as possible. Trying to do more than you can handle will only slow down your recovery. Getting your health back as quickly as possible is in the best interest of everyone in the family, whether they realize it or not.

You can taper the Pepto-Bismol treatment if you want. That shouldn't hurt anything. It shouldn't be necessary though, because if you have been strict with your diet, you should be able to maintain your progress without the bismuth subsalicylate at this point in your recovery.

The reason why certain medications have to be tapered (especially corticosteroids) is because they cause a dependency in your body after a while that must be resolved by tapering the dose. Corticosteroids, for example, replace much or all of the cortisol produced by the adrenals, so that over time, the adrenals will eventually lose some or most of their ability to produce cortisol in response the the needs of the body. Tapering the dose of those drugs allows the adrenals to slowly "learn" to function normally again.

Pepto-Bismol treatment doesn't have to be tapered because for most people at least, bismuth subsalicylate doesn't adversely affect any normal body functions (other than turning the tongue and poop black).

You're doing just fine, and there's no reason why that shouldn't continue. Best of luck to you on the rest of your recovery journey, and thanks for the update.

Tex

[Gabes-Apg]

Renee
that is great progress! well done!

re the cauliflower etc, it can take a few tastings to get used a new ingredient
I also cook my vegetables in home made bone broth and this gives them extra flavour

as those mental focus, increase energy, and less 'niggly symptoms' occur, it is the motivation to stick to this bland eating plan.
wellness and minimal symptoms is worth the changes and effort you are doing.... hang in there

the medications would have been depleting the magnesium, so stopping the meds and increasing the magnesium will help your body alot...

happy healing!

[Gabes-Apg]

I feel extreme guilt for not wanting to exert the necessary energy to spend time with my family right now

this is part of the mental and emotional side of life with MC (or any chronic illness)
we have to work through things like, our body cant do all the things our mind wants us to do (or used to do)
we have to listen to our body and put our needs first - guilt free, shame free
we have to adjust the expectations we have on ourselves, learn to say no (and say no guilt free)
and accept that healing takes time, its about progress not perfection..

this is where audio books / podcasts /ted talks etc are really helpful. I play them while I am doing cook ups, chores/housework, colouring in etc
bene brown - gifts of imperfection
anything by Eckhart Tolle or Pema Chodron
biographies or people that had to adjust to living with chronic illness /disability

podcast wise, i like dave asprey bullet proof radio - he had chronic fatigue and serious mental issues from mold illness, he has got his wellness back and discusses a whole range of topics from diet, mental health, wholistic therapies, etc
another good one is not just paleo - evan brand. another person who has recovered from chronic illness and again like dave asprey interviews people from a wide range of science and wholistic backgrounds

[renee2]

Tex,
How much magnesium did you take before you noticed an improvement in your legs? I'm taking 400mg, using the spray, and soaking in Epsom salts. I didn't have muscle spasms last night or this morning, which is great, but about six hours into my shift my legs were feeling really heavy. I've been in health care for thirty years and this isn't the same kind of feeling you get when your muscles are sore from running around on concrete floors all day. I take comfort knowing that it will eventually get better, but I can feel myself walking differently and I know that can't be good for my back. I sort of start to shuffle, or drag, my legs if that makes any sense. Picking them up to make a full step is hard and then I have to come home and go up three flights of stairs, which is really hard.

I ate lunch in the break room again today and got a runny nose. This time I was eating turkey that I cooked and froze right away so I'm pretty sure it was the room. There's no place else to eat, so not sure what I can do about that. I am taking redi tabs, but maybe it wears off before lunch time. I really don't want the exposure anyway, but it's my job.

Thanks so much for the Bullet Proof radio suggestion. I listened to some of it last night and will check out the rest as time permits.

I woke up way to early this morning. I didn't feel bad but I think I'm so used to needing a lot of sleep that I am going to bed too early. I just woke up at three am and wasn't tired anymore, which made for a long day. Soon I will try not taking melatonin to sleep. I don't seem to have night sweats like I used to. I have them still but I want to see if they are bad enough to keep me awake like before. Also, my blood pressure is normal again. That could be from the medicine but I think it's a combination of feeling a bit better.

I ate green beans and turnips today without difficulty so far. I'll be pleased if I can add those two back into my diet.

Thanks again for all of your support. I'd truly be lost without your guidance.