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Emotional Issues...

Philippa

By Philippa
in Coping with Celiac Disease

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Philippa Rookie
Philippa
Posted

I was diagnosed with celiac last March and some days still feel like such a struggle. Overall things are much better--the first 4 months were the hardest. I also have severe endometriosis which I just had my second surgery for 3 weeks ago. The recovery from my surgery has been difficult and I just find myself getting depressed and finding the thought of dealing with all the various health issues overwhelming. Does anyone have some good tips on how to not let health issues get you down?

Part of my problem, I think, is that my husband is really my only support system. I have one friend who is sometimes sympathetic and sometimes not--I never really know what I am going to get with her. Some of my friends do know about my health issues, but I don't think they really get it. I try not to complain too much but as a result I feel like I'm just dealing with everything alone.

I have three young kids, a husband who travels a lot, and a part-time job. I have been struggling with extremely low iron for quite a while and it's really hard to have as much energy to devote to my family as I would like. I feel guilty about the effect all of this is having on my kids. I'm sure some of you can relate so how do you all deal with this problem?

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realmaverick Apprentice
realmaverick
Posted

Honestly, our enjoyment from life is largely governed by our perspective. It helps shapes who we are, how we feel and how we view the world.

I think it's very easy for us to get caught up in our own little world, our problems and let them take over our lives.

Sometimes something dramatic happens, and suddenly our day to day problems are put to one side. Our worlds are turned upside down and we realise just how terrible life can really get. Or we get a glimpse in to the window of somebody elses life, which is far more horrific than ours and that helps us put our own things in to perspective. Or maybe we lose somebody essential to our lives and we wish we could turn back the clocks.

I always try to be as aware as possible, what I have. Because I know if I lost the important parts, I'd be destroyed. Whereas now, as much as this is driving me crazy, I realise it could be much worse and the most important things I still have. So I will not let this or any other health issues take over my life. We just have to deal with and adapt.

I also try to stick to the philosophy that everything happens for a reason, even the bad stuff. To teach us everything we need and to put us right where we need to be.

I was thinking earlier, about my dad having heart disease. Celiacs could be a blessing in disguise for me. As I know I'll have a much healthier diet for the rest of my life and probably live longer and healthier.

Not sure if that load of waffle offers any help but it's how I try to keep myself away from focusing on what is wrong and focus on the wonderful things in my life.

Paul

K8ling Enthusiast
K8ling
Posted

I was diagnosed with celiac last March and some days still feel like such a struggle. Overall things are much better--the first 4 months were the hardest. I also have severe endometriosis which I just had my second surgery for 3 weeks ago. The recovery from my surgery has been difficult and I just find myself getting depressed and finding the thought of dealing with all the various health issues overwhelming. Does anyone have some good tips on how to not let health issues get you down?

Part of my problem, I think, is that my husband is really my only support system. I have one friend who is sometimes sympathetic and sometimes not--I never really know what I am going to get with her. Some of my friends do know about my health issues, but I don't think they really get it. I try not to complain too much but as a result I feel like I'm just dealing with everything alone.

I have three young kids, a husband who travels a lot, and a part-time job. I have been struggling with extremely low iron for quite a while and it's really hard to have as much energy to devote to my family as I would like. I feel guilty about the effect all of this is having on my kids. I'm sure some of you can relate so how do you all deal with this problem?

I am a celiac and I don't have many close friends here (they've all PCS'd). I also have severe asthma, and endometriosis. The thing is, I live my life ASIDE from the health issues. I am also an active duty military wife. My husband deploys for months on end. I have to deal with my life as is, there is no coming home early. Basically, I put my big girl panties on and deal with it LOL. Really, for me, I think it was not having any other choice. i MUST keep moving. I MUST keep carrying on. I MUST adapt and help myself and take care of my son. I am also a full time grad student, and I think that helps me handle it. I have routines that I stick to. Above all, I remember that I am a strong, (relatively) healthy woman and I WILL make it through.

I hate to not be all sunshines and rainbows, but necessity is the mother of invention. This deployment, along with the celiac and endometriosis I had a hospitalized toddler and a miscarriage. I made it through, which makes me feel like I can handle pretty much anything on my own.

T.H. Community Regular
T.H.
Posted

So sorry it's been difficult lately!

I'm a mother of 2, husband is gone frequently (now gone for much longer periods),and things kind of went crazy, down the toilet yuck when I was diagnosed, too. Very hard at first. So...what helped me? I'm sure this wouldn't help everyone, but if anything resonates, hopefully it might provide some relief?

Oh, but first, a quick question? Have you tested your kids yet for celiac disease? If not, I would highly recommend it. They have a much higher chance of having it, to the point that even if they test negative now, it's recommended that they be tested periodically throughout their lives, since they have a parent with the disease. Especially before and after puberty, and before and after a pregnancy, as those are times that can both trigger the disease, and also cause problems if the disease IS triggered at that point.

Now, on to coping assistance...

1. Depression can - but obviously doesn't have to be - a symptom of celiac disease too. What type of diet are you eating right now? If you are having a lot of processed gluten-free foods, you might still be getting too much gluten, which could be contributing to the emotional difficulty of coping with the gluten-free diet (since gluten-free is just a legal term that indicates a really low level of gluten, you can still get too much gluten if you eat enough, ya know?). Something to consider, anyway.

2. It was easier to deal with, at times, when the entire house was gluten-free. If you haven't done that, it wouldn't hurt anyone as a diet, as long as the carbs are still in the diet, ya know? Actually, I came across this menu for a month of gluten-free breakfasts, lunches, and dinners on an autism site - it even had the recipes. It was all 'normal' food, and was even designed so that people on a food stamp diet could afford it, so it's not expensive. It's also dairy and soy free, just to mention. Having all the recipes and such available - they even had a grocery list - might help a lot with your feeling overwhelmed, especially if the whole family was eating it, yeah? All the work but the cooking done for you, you know? The link to that is here:

Open Original Shared Link Casein-free-diet.talkaboutcuringautism.org/gfcfsf-diet-on-food-stamps.htm

3. If there is something that helps you when you are feeling depressed, I'd make sure to include that into your day, even if you have to pencil it in. For many people, making sure you get out and get some sun, and adding a little more exercise into your day, can help with depression in general. For me, music is a big mood lifter when I've suffered from depression.

4. Personally, I thought a lot about the gluten-free stuff. It was such a big change, and then took so much effort for us (me and the 2 kids ended up going gluten free, by the end), that I couldn't NOT think about it. Very stressful. One thing we did was start a blog. We ended up taking pictures of our food, and that helped me and the kids focus on the fun part of the food. We tried to make it pretty, took pictures while making it, etc.. The blog doesn't have many people watching it - probably just family - but it's been a way for me to funnel my energy thinking about the diet into something productive rather than something that got my spirits down. Sharing the recipes, the failures and successes, really helped me feel better. Sometimes not a lot, but it tended to help. I also let the kids pick out one weird veggie or fruit at the store and then we'd go home and research it and see what we could make out of it. Gave us something else about food to think about other than: is this gluten-free or not?

5. I joined the local celiac group to have other folks to talk to about this sort of thing. It really helped have people who you could just TALK to about some of this stuff. People who understand the frustration of eating crappy food you didn't even like, only to realize that it made you sick, and thinking: I could have had something that tasted good, if I was gonna feel this bad! ;)

6. If you are on any drugs at all, I would work hard to see if you can get off of them for a bit - I found out that some drugs and supplements that are 'gluten-free' still didn't have low enough levels of gluten for me to be healthy on. So when I had surgery a few months back, for the week after, when I was still on pain pills, I was very sick and depressed and UGH. So, the surgery may be making it more difficult, if you are still on pills from it.

7. And as for the effect of this on the kids? Seriously, I would involve them as much as possible in the food prep. They are almost guaranteed to get this disease triggered in their lifetime, if they got the gene for it. They'll need to know how to cook for it, and much easier if they are used to the diet challenges early. But if you are thinking more of the feeling tired and low iron stuff , and how that affects how you interact with them? Just...well...I know what you mean. It is hard not to feel bad about not being all there for the kids. But this, too, can teach them something. About pulling together and helping family members and they will likely learn to do a little more for themselves at the same time, and then when you are healthy and have your nutrient levels back, you can play again. It'll happen. :)

K8ling Enthusiast
K8ling
Posted

Shauna! YOU GO GIRL! THat is exactly what needed to be said!!!

Bravo!!

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