Newbie with questions

darby182 · Post by **darby182** » Wed Oct 30, 2019 3:56 pm

Hi, all. I was just diagnosed Monday (LC). I’ve been dealing with a fairly mild form for a couple of years but it’s getting worse. I read here that fatigue and joint pain are part of it and they have really bothered me. My doc knows almost nothing except the medication part. I’ve switched to dairy free gluten free diet but my husband is stressed out by this even though I do most of the cooking. I am getting pretty frustrated at the lack of support I am getting from my loved ones. I don’t appear to suffer that much, but I hurt every day and I am just so tired. Any advice would be really appreciated.

Post by **tex** » Wed Oct 30, 2019 6:58 pm

Hi,

Welcome to the group. You've hit the nail on the head with your description of this disease. We don't look sick, so everyone (including our doctors) tends to feel that we're just pretending to be sick. This can be a very lonely disease, especially when our family doesn't support us. The disease usually wrecks our social life, to boot, because most social gatherings are centered on food, and most of that food is off limits to us. To make it worse, having to explain over and over again why we can't eat this or that to well-meaning friends or relatives is enough to convince most of us to become a hermit until we can get this under control.

I hope you can find a way to convince your family to cut you a little slack, because recovering from this disease takes a while, and healing requires a lot of our energy. Maybe it will help to point out to them that having this disease is like having the worst case of the flu that they can imagine, except that there's no end to it — it just goes on and on until we find a way to control it.

Again, welcome aboard, and please feel free to ask anything.

Tex

darby182 · Post by **darby182** » Thu Oct 31, 2019 5:26 am

Thanks, Tex. I really appreciate your encouraging words. I read some success stories which were inspiring. I also read about vitamin D deficiencies. That describes a lot of my non WD issues. I am so glad I found this family!

Post by **tex** » Thu Oct 31, 2019 8:51 am

A vitamin D deficiency really cripples our immune system. It limits our ability to heal, lowers our resistance to colds and flu, and probably most other viruses, and makes us vulnerable to all sorts of problems. Most of us take 3,000–5,000 IU of vitamin D daily, more at northern latitudes, and more if we know we're deficient.

Tex

kariswalstad · Post by **kariswalstad** » Thu Oct 31, 2019 10:08 am

Boy, do I understand about the fatigue and pain! Those are my biggest complaints and the things that made me realize that even if I accepted and tried to live "normally" with D, it wasn't enough. I've now been GF, DF, and SF for a while and things are getting better, but it's slow. I am taking a mindfulness meditation class through the local clinic and it's covered by insurance! This forum, and finally finding people who have the same experience and share their success and tips, has helped tremendously. The other thing I do when people are asking me about it and saying I don't look sick, is to say "I know, and that's made it very difficult" and to use words like "indescribable fatigue" and "constant, 24/7 pain". The more I've opened up to those around me, the more I find people who also have health issues they're trying to deny, and many of them don't look sick either! Hang in there, and celebrate the hours that you do have some relief. I used to say "it's a good day" but now it's more like "I feel good this morning" and try to roll with it if I'm drained and hurting tonight. I believe I will come to appreciate what this experience has taught me about life, and I know I'm on the right track thanks to the potty people.

jessica329 · Post by **jessica329** » Fri Nov 01, 2019 8:39 am

I cook everyone the same main meal (for example, a whole turkey or rotisserie chicken) and then do separate sides for myself (like a sweet potato).

Many diseases and disorders are "invisible ". My grandfather never lost his hair during his cancer treatments; a person would not have known how sick he was just by looking at him. But it doesn't mean he wasn't suffering.

Anyways, I've looked to books and this this forum for support. You are not alone!

T · Post by T » Sat Nov 02, 2019 5:44 am

Welcome
Sorry about your diagnosis of LC but you found the right group you will get A lot of good advice from this group of fine people.
I was diagnosed with CC in 2014 I did regret it back then but now I have A new life (not perfect but very doable) and enjoy the way it is now and people do not understand (or believe you) why or how we eat the way we do most people here has gone through the same frustration so don't exhaust yourself trying to get them to believe you they either will or wont what you believe is what matters in fact my DW was cooking for me but I got frustrated with eating the same plain food over and over so I have been cooking my food for A few years still learning new dishes and enjoying it .
Oct 21 I went through A lot of surgery on my right shoulder my arm will be in A sling for over 6 weeks so I cooked A lot of food ahead but ran out and started cooking last week left handed my DW cooked for me yesterday and some things never change so I will be cooking all my food now and it is challenging but doable.
Good luck on your journey to A new life

Terry