Newbie

[jrw226]

Hi everyone. It's taken a while for me to summon up enough courage to post but I think you may be the only place to get support and advice

So, I was diagnosed with LC about 2 months ago post colonoscopy. Main gut symptoms bloating nagging pains and bowel urgency, and bush hopping during running . Not the chronic diarrhoea it seems many people experience. Was also diagnosed low ferritin. Taking iron and almost completely weaned off sertraline now just 25 mg every other day. Am I feeling better? No, much worse. Crushing fatigue, can't run regularly (not because of fitness I just seem to crash as if I have no blood sugar) and struggling with hideous brain fog. Am waiting for gastroscopy 10th may so will try gluten free again after they have ruled out coeliac disease. Also wake up feeling like I've run a marathon... Everything seems to hurt. Joints are complaining and muscles twitch all the time. Can this be related to the LC?

I do take thyroxine and have done since early 20s and have some arthritis/joint issues so may be auto immune links.

Main question is ..... Is the systemic fatigue experienced by others or am I conflating different illnesses?

Would add that the last two years have been the most stressful in my life! Will spare you the details. But I have had longstanding mental health issues.

I'm not a moaning Minnie! I'm still managing to work full time and manage house garden ponies kids and dog! But only just ! Looking forward to taking advice from all you great people!

[jlbattin]

Welcome, jrw,

I'm sorry that you had to find us but this is the best place for you to be (among others who are living what you are).

I didn't really have the chronic D all the time but I had horrible side pains, gas, and bloating. That all disappeared once I got my diet under control. The fatigue will also get better once you get things under control, but it does take awhile, and 9 months down the road, I still experience some fatigue from time to time.

What are you eating? If you haven't gone gluten and dairy free, you might try that, and many of us have to be soy and egg free also. Find you some safe foods and eat those for awhile as you begin to heal. I ate chicken, rice, and a banana for over 6 weeks or so (3 or more times a day). You need lots of safe protein to help you heal.

Are you taking any vitamin D3? MC (and especially in a flare) depletes our D. Also, magnesium spray will help with some of the joint pain. Our magnesium gets depleted also.

Some of the others will come along and answer your other questions, but in the meantime, the best thing you can do is pour yourself a glass of water and sit back and read and read and read everything on here. There's a wealth of information. If you haven't ordered Tex's book (up in the right hand corner, it's a must read. The only book written about MC. Feel free to ask lots of questions. We've all been there.

Again, welcome!

[Erica P-G]

HI jrw,

So sorry you had to find us, but sooo glad you did because it takes people who know a little bit about MC to pass on their experiences with it.

I have been here a year (its been a blessing to have the support from all the wonderful people here) and began this post http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173 in May 2015. It encompasses many of the symptoms and questions you are posing at this time. Albeit we do change over time with our MC.

Some of the medicines you have/are taking I have not, but all the other symptoms are dead on with MC and all it offers

To get a grip on the symptoms of MC first one has to approach their diet first, then when that starts to heal the gut and we start getting on a better feeling about everything the mental and emotional side of things needs attention. Keep stress to a minimum (like saving the world, but even less so ), get plenty of good sleep, and be kind to yourself.

In my post mentioned above it lays out a good regimen for a food plan so I wont repeat it here. You can also read a great guide for food choices from our administrator Tex's very well put together website http://www.microscopiccolitisfoundation ... 120615.pdf

Good Luck, and ask anything!
Erica

[tex]

Hi JRW,

Welcome to our Internet family. You seem to have the same symptoms that I had when I was reacting. Almost every morning I would feel as if I had been hit by a truck during the night, and if it weren't for the fact that I had maybe 3 seconds to get to the bathroom in time to avert a major "accident", it would have taken me a long time to drag my miserable carcass out of bed every morning. MC can be a very cruel disease, as I'm sure you've noticed. I'll try to address your questions.

Everything seems to hurt. Joints are complaining and muscles twitch all the time. Can this be related to the LC?

Yes it can. Those symptoms are typical except for the muscle twitching. That indicates either a serious B-12 deficiency or a serious magnesium deficiency (or both). Both also cause severe fatigue, but MC alone does a good job of diverting all of our energy to fighting the inflammation in our gut, so among the three of them you may be suffering from a triple whammy. Both magnesium and B-12 deficiencies can also cause brain fog, but B-12 is especially implicated because of your other symptoms.

Main question is ..... Is the systemic fatigue experienced by others or am I conflating different illnesses?

Yes, virtually all of us have world-class fatigue when the disease is active, and it typically takes a long time to resolve the fatigue and brain fog.

Would add that the last two years have been the most stressful in my life! Will spare you the details. But I have had longstanding mental health issues.

Yes, stress has the potential to trump almost everything if it is severe enough, on a chronic basis. For most of us, stress alone is enough to trigger a flare/relapse, and in combination with other issues it can be a constant threat to remission. Stress control is very important for MC symptom control.

Again, welcome aboard.

Tex

[jrw226]

Oh my! Can't tell you how much your replies mean, thank you!

Yes! Already ordered Tex's book waiting eagerly for it to arrive from over the pond.

I also have angular stomatitis which my consultant noticed when I went for colonoscopy. Hasn't healed for months despite high dose antioxidants. Usana brand which a friend recommended as being very pure. Also taking their probiotics. Can't do much on diet but have been significantly more fatigued and bloated having gone back onto wheat after a month away. Will go with your dietary advice after my gastroscopy to rule out coeliac.

Will continue to catch up on all the forum 's back catalogue of advice. It's the exhaustion which really gets me down plus my mood is now so volatile as no longer on sertraline. I am really hoping that mood will improve if I can get diet right.

Thank you thank you thank you :->

[tex]

JRW,

Regarding your mood — when I was magnesium deficient I had anxiety attacks and other mood issues that faded away as I slowly rebuilt my magnesium reserves. And research shows that gluten sensitivity is a major cause of depression. Once you are able to change your diet, those symptoms should fade away.

And please remember that despite what your consultant may try to tell you, the celiac screening tests can only confirm celiac disease if it is in a mature stage of development (with flattening of the villi in your small intestine). A negative test result does not rule out gluten sensitivity, nor can they rule out an early stage of celiac disease when the villi are not yet completely destroyed. The medical community has no officially-adopted test that they can use to detect non-celiac gluten sensitivity, and virtually all of us who have MC either have non-celiac gluten sensitivity or celiac disease.

You are very welcome,
Tex

[Gabes-Apg]

Welcome JRW

in line with Tex's reply, research also shows the link of depression and anxiety with Vit D3 deficiency.
the combo of Vit D3 and magnesium supplementation has helped many people here, with various symptoms and issues.

if you have had the chance to read some of the posts and discussions here, there are many that test negative to celiac, but are majorily gluten intolerant.

I posted this article in February,
http://www.perskyfarms.com/phpBB2/viewt ... ght=gluten