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swbailey

By swbailey
in Coping with Celiac Disease

Recommended Posts

swbailey Apprentice
swbailey
Posted

I am really needing some support right now. Here is my story: I was not realizing that I had any symptoms until this September. I got remarried on Sept. 13, and after we got back from the honeymoon I started getting sick. My stomach was upset and in turmoil non stop, and I was becoming more and more tired. I pushed my doctors and I was lucky enough to find out I had celiac disease right before Thanksgiving. When I look back on my life I realized that so many of my health issues are tied to this disease- epilepsy, miscarriage, allergies, etc. As soon as I found out I did some hard core research, and have found some great information on how to live gluten-free. I started my gluten-free diet immediately, and have not looked back.

What I am struggling with physically is the fatigue, joint issues, and some lingering stomach issues. I am getting thru those with vitamins (including B12) and trying to eat as healthy as possible. What I am really needing right now is the emotional support. My mom and dad are great, but my husband has definitely been lacking the support area. He was great the first week, but since then it has been tough. I ask him to help around the house, help with the cooking, etc just because I do not have the energy to go to work all day (after a very rough night's sleep), take care of my two boys (homework, etc), cook dinner, and then do anything else that needs to be done. Plus, to be honest I would just like him to baby me a little so I feel like someone is taking care of me. As you all know it is tough to adjust to this. I am dealing enough with learning how to eat gluten-free, feelling rotten and having no energy is TOUGH!!! I just need a little support, and I thought I would turn to you guys. Thank you for listening to my troubles!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I am sure many of us can identify with this post. One thing you may want to look into is perhaps getting a medical leave of absence at work. If this is possible it would give you some time to heal. I wish I had some advice as to getting your new hubby to help but I can't get much help from my family either. So at least your not alone in that. I remember well the agony of getting up after very little sleep, working a full day and being so tired that I barely had the energy to cook dinner for the kids let alone clean up after it.

One thing that may help if you haven't already done it is to restrict the amount of gluten in your home. Are you still trying to cook gluten for the rest of your family? If so now is the time to get both of your children tested. The rest of your first degree relatives should be tested also. Once you get the kids tested then try to make your home as gluten free as you can. It will greatly help your healing.

Can you get your husband to come here and to read a bit on the boards? Some folks think we are not as ill as we really are. Perhaps reading some of the stories and reading some of the signatures of the other folks here, especially those like myself who suffered for years misdiagnosed and have permanent damage, might open his eyes a bit.

ang1e0251 Contributor
ang1e0251
Posted

Maybe you can ask him if he's ever had a hangover. Imagine the worst hangover you've ever had and add stomach flu to that and that's what I'm coping with. I don't imagine he did much cooking or housework or childcare under those conditions. Maybe he can understand it a little better that way.

kkkkaty Rookie
kkkkaty
Posted
I am really needing some support right now. Here is my story: I was not realizing that I had any symptoms until this September. I got remarried on Sept. 13, and after we got back from the honeymoon I started getting sick. My stomach was upset and in turmoil non stop, and I was becoming more and more tired. I pushed my doctors and I was lucky enough to find out I had celiac disease right before Thanksgiving. When I look back on my life I realized that so many of my health issues are tied to this disease- epilepsy, miscarriage, allergies, etc. As soon as I found out I did some hard core research, and have found some great information on how to live gluten-free. I started my gluten-free diet immediately, and have not looked back.

What I am struggling with physically is the fatigue, joint issues, and some lingering stomach issues. I am getting thru those with vitamins (including B12) and trying to eat as healthy as possible. What I am really needing right now is the emotional support. My mom and dad are great, but my husband has definitely been lacking the support area. He was great the first week, but since then it has been tough. I ask him to help around the house, help with the cooking, etc just because I do not have the energy to go to work all day (after a very rough night's sleep), take care of my two boys (homework, etc), cook dinner, and then do anything else that needs to be done. Plus, to be honest I would just like him to baby me a little so I feel like someone is taking care of me. As you all know it is tough to adjust to this. I am dealing enough with learning how to eat gluten-free, feelling rotten and having no energy is TOUGH!!! I just need a little support, and I thought I would turn to you guys. Thank you for listening to my troubles!

I'm sorry you are not getting enough support from your hubby! I was diagnosed in Aug. 08 and it has not been an easy road for me- between cross contamination issues, fatigue, learning I was also lactose intolerant ,etc.- it's just not a simple process. It's very important to have support and yes, some special attention is pretty nice too!

I was very tired after starting a gluten free diet but , looking back, I think I was not eating enough. Are you? I also had lingering stomach issues- that's when I tried eliminating dairy - much better! Also, I got rid of all baking stuff and now only bake Gluten free for the family. They like what I make but they also have store bought gluten foods.

I don't know how you make your husband more involved in your experience. But it seems obvious that if a member of the family is feeling rotten- it will affect everyone.

I am lucky to have a supportive family. After 5 months of telling my husband how bad I was feeling, I've resolved to also tell him when I'm feeling well , though I think it's obvious.

Make sure you check your home for sources of gluten. Don't bake with gluten! Do you have your own cutting board, toaster, wooden spoons? Have you checked your lipstick, chapstick, hand cream?

Even though I'm new at this too, I firmly believe it gets better. Hang in there and keep coming here for support. It's a great community!

harp1 Apprentice
harp1
Posted

I'm glad to support you in any way I can. Feel free to email if you need more contact. I've done it by myself, I'm single and there's nothing worse than getting isolated. If you can post more here and we'll listen. Susan :P

wschmucks Contributor
wschmucks
Posted

I felt the SAME way with my boyfriend. He cant understand how devistating this can be and how hard it is to get through the first few months. The only thing I can suggest is to talk to him about how hard it is for you. But I also think that you might need to look for the support from people who can truley sympathize (US!). Just think if you didnt even know what this disease was how obscure the lifestyle would sound. Its hard for other people to get it which makes it harder for you.

I really struggled with my boyfriend's lack of support, here you think that the person who is closest to you in the world should be there to go through this with you and to do the little things to help boost your spirits. I'm so sorry that youre feeling this way too, but he just doesnt understand. Tell him how youre feeling and the types of things you need from him-- maybe that will help. And if not we will be here either way! Good luck and talk to you soon!

dilettantesteph Collaborator
dilettantesteph
Posted

My husband is also unsupportive. He just doesn't help much around the house period, no matter what I do. Before I was diagnosed, I was really sick and couldn't do much so things just didn't get done. We would be completely out of food until I could manage to get to the store. There would be no clean clothes and still he wouldn't do any laundry. Much less dustballs all over. He would just eat out or go buy junk. We have two children and they were the only ones to offer any sympathy and help. They should have been cared for themselves, not having to do the caring. He would say that he was sick too and also couldn't do anything. Conveniently he got sick whenever my symptoms would flare up. I would agree with the people who urge you to be as gluten free as possible. We had to have a gluten free house before I could be consistently healthy. My unsupportive husband also wasn't careful about spreading his gluten all over the house. The sooner you are better, the more it won't matter that he doesn't help.

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swbailey Apprentice
swbailey
Posted
  • Author
I am really needing some support right now. Here is my story: I was not realizing that I had any symptoms until this September. I got remarried on Sept. 13, and after we got back from the honeymoon I started getting sick. My stomach was upset and in turmoil non stop, and I was becoming more and more tired. I pushed my doctors and I was lucky enough to find out I had celiac disease right before Thanksgiving. When I look back on my life I realized that so many of my health issues are tied to this disease- epilepsy, miscarriage, allergies, etc. As soon as I found out I did some hard core research, and have found some great information on how to live gluten-free. I started my gluten-free diet immediately, and have not looked back.

What I am struggling with physically is the fatigue, joint issues, and some lingering stomach issues. I am getting thru those with vitamins (including B12) and trying to eat as healthy as possible. What I am really needing right now is the emotional support. My mom and dad are great, but my husband has definitely been lacking the support area. He was great the first week, but since then it has been tough. I ask him to help around the house, help with the cooking, etc just because I do not have the energy to go to work all day (after a very rough night's sleep), take care of my two boys (homework, etc), cook dinner, and then do anything else that needs to be done. Plus, to be honest I would just like him to baby me a little so I feel like someone is taking care of me. As you all know it is tough to adjust to this. I am dealing enough with learning how to eat gluten-free, feelling rotten and having no energy is TOUGH!!! I just need a little support, and I thought I would turn to you guys. Thank you for listening to my troubles!

I just wanted to thank everyone for all of their support! You guys are wonderful! My husband is coming around, and has been wonderful this week. He is being supportive, and trying to help more around the house. Thank you again!

Lori T. Newbie
Lori T.
Posted
I just wanted to thank everyone for all of their support! You guys are wonderful! My husband is coming around, and has been wonderful this week. He is being supportive, and trying to help more around the house. Thank you again!

Hope that things are going to continue getting better. An allergist can help you to find other sources of stomach upset and body aches and fatigue. Thought the cure all was the gluten-free diet for a bit then realized something else was going on. Found out about 30 other things I am either intolerant of or just simply cannot be near or ingest including molds. Yes, MOLD. This is in lots of foods and the environment. Also, a rheumatologist just to rule out any of the other autoimmune problems that could be lurking around. Found out that I had rheumatoid. I had severe pain though. But, usually one autoimmune goes hand in hand with others. Not trying to add to the down feelings, but just want to get you up and feeling right quick. Been where you are with my husband as well as my no 19 year old son. Both had to learn my cabinet in the kitchen is hands off and so is my cookware. Still cannot get them to cook for me though because they mix spoons and pans with nonGF stuff. But, one thing that did a wonderful amount of good for me was my MD. I brought both of them with me and he explained how important this was to and for me. Then he spoke with my husband privately about this and whatever he said has done the trick. Maybe you could try it. I know you said he is coming around but this diet is the rest of your life and he may just be trying to deal in the right now. Glad that he is trying. Best of luck to you.

Welda Johnson Newbie
Welda Johnson
Posted

Hi,

I can relate with what you're going through. Each issue you mentioned has been one that I, and most likely each person on this site, has had to deal with. The tiredness can be unbelievable, especially when you're the mom of the house, having to deal with all that involves. Being a newlywed, this must be a difficult change to institute in your life. Whomever suggested having your whole family tested offered great advice. Enterolab.com has provided me with tests for my closest family members.

As a 64 year old mom and grandma, with intolerances to all grains, all milk & dairy, egg whites, yeast, casein, whey, maltodextrin, and modified food starch, I would like to add that the issues we've been discussing are mostly physical, but, we have to consider our emotional needs too. Do your nerves feel as though they are on the top of your skin? Are tears creeping up more and more frequently? Does some type of anxiety or depression want to intrude into your newfound joy at being married? I think that often we forget that we need to find time and stillness in order to absorb the news that we are "unique" in our dietary needs and our needs for learning who we really are. Does a mom ever find that quiet time, unless they just grab it for themselves, knowing that they can only help others if they are healthy themselves?

I am more than amazed that you were diagnosed so quickly, since I've read that the average time for diagnosing Celiac is ten years. It took a lot longer than that for me to learn what was going on. I started having symptoms at 8, which would have been 1952. Even now, most doctors have little inkling of what is going on with gluten intolerance.

How can I help? I want to help. I long to prevent you from having to suffer the long, painful journey that so many of us have gone through, so that you, too, can soon help others. Please email me at welda@att.net if you'd like to. Always, Welda

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