How Can I Help Her?

[cdfiance]

Hello, my fiance has been diagnosed with Celiac Disease fairly recently and I'm really happy to find this forum. She and I try to be very vigilant about gluten but we are a bit new at this and sometimes she somehow gets some gluten which makes her stomach really upset. She feels so sick when it happens and all I want to do is help her feel better but I don't know what to do. When her stomach is bloated and upset, I'll lay down in bed with her and gently rub her tummy and I usually bring her a hotwater bottle to hold againt her belly when she has diarrhea, but I always feel totally helpless when she is feeling so terrible. I was hoping someone had some suggestion about what helps them or their loved ones with celiac disease. I really want to be able to help and comfort her when gluten strikes.

Thank-you,

Ryan (fiance of Alex with celiac disease)

[Ursa Major]

Hi Ryan, and welcome to this board.

You sound very caring and loving. You are already doing more than a lot of family members of celiacs do. You take Alex's celiac disease seriously, you do your best to help her be vigilant, you don't belittle her when she is feeling terrible.

Other than maybe making some chamomile tea to help soothe her stomach, looking after her and letting her rest, and getting her a hot water bottle, there is really not much you can do.

But you could do a little research to make sure that those glutenings don't happen any more (or at least not more than once in a long while). Here is a link to Nini's website, she has links to her 'newbie survival kit' on the bottom of that web page. Open Original Shared Link

Also, if she eats gluten-free bread, she absolutely has to have her own toaster, you can't clean the old one well enough to be safe. The same goes for plastic colanders to drain gluten-free pasta with, you can't get all the gluten out of colanders that have been used for gluten pasta.

You guys also need to check through all her personal care products to be able to get rid of the ones containing gluten, and replacing them with safe products. Those include makeup, shampoo and conditioner, lipstick, chapstick, toothpaste, soap, lotions etc. Look for wheat germ oil, barley extract, oat bran. Vitamin E is often derived from wheat germ oil. Vitamins and medications often have wheat starch in them as a filler (call the manufacturer to find out).

Soy sauce usually has wheat as the first ingredient (there are some safe ones). Most celiacs cannot tolerate dairy for at least six months (unless they are also casein intolerant, in which case it will be for life), because it's the tips of the villi that are supposed to make the enzyme lactase, that helps digest milk. Since the tips of the villi are nonexistent right now, dairy cannot be digested and Alex might have what she thinks are gluten symptoms from dairy.

I know, this is a lot of info to digest. But it might really help.

You're a special guy, Alex is blessed to have you.

[Nantzie]

I agree with everything Ursa says. You're doing great. It's so difficult to see someone you love suffer and not be able to do anything to make it go away. Unfortunately, there isn't much that you or she can do except ride it out as best as you can.

As you learn about living the gluten-free life, she'll start feeling better. You've found the best place on the net to learn about it. When I first found this place I read the old messages as much as I could. And everyone was really helpful with any other questions I had. By the time I had been here for about a month, I felt like I had a good handle on it. I still made some mistakes, but I felt like I knew what I was doing. It's a steep learning curve at first, but once you learn it, it's pretty easy.

When I first found this forum, I thought that people worrying about cross-contamination, like the toaster that Ursa mentioned, were just being over-the-top. Boy was I wrong. It sounds bizarre, but cross contamination is something you have to take extremely seriously. 99% of my glutenings are from CC.

I'm so glad you found us here. It won't be long before you and your fiance are giving advice to the new people too.

Nancy

[GeoffCJ]

I agree with everything Ursa says. You're doing great. It's so difficult to see someone you love suffer and not be able to do anything to make it go away. Unfortunately, there isn't much that you or she can do except ride it out as best as you can.

I'm the one in the relationship with Celiacs, to chime in and say how great and important it is to have a helpful significant other. The learning curve on the gluten-free diet is tough and steep, and having someone else to help is a huge asset.

My wife has been great, and I appreciate it everyday. I'm sure your fiance does too!

Geoff

[Sophiekins]

I would venture to suggest that the best thing you can do to comfort your girlfriend during the aftermath of an accidental glutening is just to be there - Baer used to rent one of my favourite movies (I'm never clear-headed enough to follow a new one), keep my juice glass full, and a blanket close to hand for the chills, and then we'd cuddle. Distracting her with light talk is also good (though be prepared to do most of the talking. . .). . .I love to read, but get horrible vision problems and light sensitivity when I'm glutened, so if a movie wasn't an option (or we'd finished it) Baer would read to me. . . .

If she has longish hair, you might learn to braid it for her (it can be really nice to have someone else pull it out of the way. . .and having someone else brush your hair can be very relaxing). Other big-scoring gestures are to change the sheets when the worst is over (I hate sleeping in sheets that I've just spent hours lying around in sick); a foot rub (maybe take a reflexology class together. . .you can use it to ease upset tummies and headaches, and in my experience, it works. . .); giving her a bath (if you are lucky enough to have a tub); or doing the dishes (I know it sounds weird, but I there is inevitably a stack of dishes that need doing, and it's really nice to not have to do them when I'm feeling crappy).

The tough part about celiac disease is that there's not really anything anyone can do. . .except keep you company.

[cdfiance]

Thank you so much for all of your advice and support.

I've been feeling a little overwhelmed and it's so great to hear from people who have been trough it -- I just want to know that there's some light at the end of the tunnel for Alex. Although there has been a definite improvement since she was diagnosed and started the gluten-free diet, she still doesn't feel all that great. Even besides the few occassions that she accidentally gets some gluten and gets very ill, her stomach just never feels good. She's bloated and has stomach pains and cramps pretty much every day. Is she destined to feel this way for the rest of her life or will it get better with time as her intestine heals. She really needs to gain back some weight but it's hard to have a healthy appetite when her tummy always feels bad.

Also, Alex craves yogurt when her stomach is unsettled but as her doctor and you guys have said, she probably can't tolerate dairy right now. Does anyone know if there is such thing as lactose-free yogurt or of something else she could try that might soothe her stomach like yogurt used to.

Sorry, one more question. I got her some gingerale to sip on for the queasiness that usually accompanies her diarrhea. I studied the ingredients and it looked okay but I just want to make sure. I've been feeling really paranoid since I found out when she was diagnosed with Celiac that all the bland pasta and soups and toast (foods I thought would be gentle on her stomach) that I made for her before we knew what was wrong, only made things worse.

Sorry for the long post and thanks again for all your advice,

Ryan (worried fiance of Alex)

[Guest cassidy]

It is nice that you are so concerned. As everyone said, just being there for her is probably all she needs. Many of us have family members that are less-than-supportive and that makes it much harder to deal with.

She may be able to tolerate dairy, unless she knows she has a problem with lactose or casein. I totally agree that going back to a basic diet in the beginning makes it easier for the body to heal, but not everyone has a problem with dairy. I never gave dairy up and I feel great. If I crave something I think that means that my body needs it for some reason, so I think she should try yogurt if she wants it. If it makes her sick, then she obviously shouldn't do that again. Kefir is even better than yogurt. It is like a liquid yogurt that tastes like yogurt - don't get the plain - and it has tons of good bacteria that are great for your intestines. I drink it everyday.

She should eventually feel great. I don't know how long she has been gluten-free, but if she doesn't feel much better after a month or so I would recommend looking at other things in her diet. I had to give up potatoes, tomatoes, chocolate, citrus and several other foods before I felt great.

Digestive enzymes always help my stomach when it hurts (not from gluten). That and probtiotics may be something to look into.

As for the gingerale, I would check with the company. It is probably ok, but I personally check with the company on everything before I eat it because it is so bad when I get sick.

[Nantzie]

Don't feel guilty at all about the toast, pasta, etc. that you gave her before you knew what was wrong. I think that everyone here did the same thing either for themselves or their loved ones. I used to give my kids handfuls of goldfish crackers and all that other stuff that I now know was just making things worse.

After I went gluten-free I went through a few months where no matter what I ate I felt nauseous. It did get better and eventually went away. I've been gluten-free since Jan '06, and I still can't eat too many raw veggies or hard fruits like apples or my stomach feels irritated. It just takes some time to heal.

Have you looked into finding health food stores that carry gluten-free products? Maybe some gluten-free crackers might feel good on her stomach. My favorite are Ener-G Wheat Free Crackers, which are also gluten-free. I also get Glutino's gluten-free crackers, which are about the size of a ritz cracker. There are also a few brands of gluten-free pretzels, all of which are good. If you are near a Whole Foods they also have a brand in their bakery area and in the frozen food area called Gluten-Free Bakehouse. If you ask at their customer service desk, they will print out a huge list of gluten-free products for you to take with you.

Just make sure you steer clear of products containing spelt or kamut (both forms of wheat). A lot of health food store workers are misinformed and think that those grains are gluten-free, and they're not.

If you could tell us the brand of gingerale you've got, someone might be able to tell you if it's gluten-free.

Nancy

[Adelle]

I think ur doing so much already!! The best thing (IMHO) is to keep doin what ur doin, and to keep plugging away at mastering the gluten-free diet. It takes time. also, don't feel bad about giving her toast etc before. My GI doc said to "eat more bread and less spicey foods". There were more days than not that I ate little or nothing besides 1 or 2 slices of plain wheat bread.

You were doing the best u know. When you know better, you do better. Not everyone has a lactose or casin problem. I never did. If yogurt makes her feel better, eat it. I eat at least a few spoonfuls of yogurt every day, works for me . Anyway, congrats on finding a DX and welcome!!

Oh and if you eat out, quit. At least till u master the diet. We haven't gone out to eat since the 1st week of October. It's not worth it for us. Good luck!

[gfp]

Thank you so much for all of your advice and support.

I've been feeling a little overwhelmed and it's so great to hear from people who have been trough it -- I just want to know that there's some light at the end of the tunnel for Alex. Although there has been a definite improvement since she was diagnosed and started the gluten-free diet, she still doesn't feel all that great. Even besides the few occassions that she accidentally gets some gluten and gets very ill, her stomach just never feels good. She's bloated and has stomach pains and cramps pretty much every day. Is she destined to feel this way for the rest of her life or will it get better with time as her intestine heals. She really needs to gain back some weight but it's hard to have a healthy appetite when her tummy always feels bad.

Ryan, since your asking for advice I am just going to lay it out straight....or as I see it....

Firstly, going gluten-free can be a big deal ... BUT what makes it the hardest is when those around you that you love don't buy in....

The hardest loved ones to deal with are those who know you before diagnosis and often think you are going over the top with the gluten-free thing... I could go into lots of details and reasons but .... really all that matters is the support.

Let me start off by saying most peoples first go at gluten free is something they look back later and wonder how they could have been so niaeve. When I was diagnosed I thought, heck I been eating it for 20 odd years and I wasn't THAT ILL..... so I bet I can sneak just a little and I'm sure I'll be one of the ones that can eat oats ....

Boy was I wrong....

But a lot of friends were supportive of "A tiny amount can't hurt" ... they kinda thought the same as me... the problem is I can't, I feel like crap but its not the sort of easy feeling crap to describe to someone else.

I think sometimes newly diagnosed people think the old timers who are checking their shampoo's and stuff have lost it and been abducted by aliens and had our brains rewired... I can assure you when I was abducted they did no such thing (joke)

Instead its a month of 3 steps forwards then a good solid kick in the guts that made us realise this ...but its very hard to get this across, especially when so much medical advice is so vague... we all naturally want to beleive that it will affect us as little as possible...

If you want to do EVERYTHING possible here is the list.....

1) Stop eating ANY gluten about the house at all. Get rid of it, its an accident waiting to happen and kissing does transfer it but also it finds its way onto cutlery, utensils etc,.

2) If you eat out then make it perfectly clear its OK not to. I still get pangs of guilt my girlfriend doesn't get to eat out very often because of me but again eating out is NEVER without risk.... This is something to explore later once she's more comfortable... (I'll get onto that)

3) Always, always back her up.... if there is ever a moment where she is thinking "Its probably OK" then jump i and be supportive.

Once her GI tract has settled down then a little experimentation with eating out etc. can be done from a good base. However if you start this too soon the pair of you are likely just to get confused over what exactly caused the glutening and is it that making her feel ill etc.

The safest way by far is to go on a real healthfood kick and prepare everything from scratch.... this really isn't half so hard as you think... and the hardest part is the shopping usually.

If you can help out shopping if she is feeling ill then this makes it much easier....

Finally, you are doing all you can.... try and forget the "dry toasts", tell her you feel bad but get over it... you did what you thought best... that's really all anyone can do!

[babygirl1234]

welcome and being gluten stinks but you need to make sure she doesnt get gluten offen because if she does she'll do her body more harm then good

[Creative-Soul]

You're doing wonderfully already! I just wanted to suggest a worry-free alternative to the gingerale; just get the actual ginger root and simmer little pieces of it in water - drink it as a tea. I always keep copious amounts of it in the house as it is also excellent as a digestive aid ( I'm drinking some right now!). I drink it as is, but you can add a little sugar, honey etc. That way she gets something hot - as well as safe - in her stomach.

[wacky~jackie]

Boy was I wrong....

But a lot of friends were supportive of "A tiny amount can't hurt" ... they kinda thought the same as me... the problem is I can't, I feel like crap but its not the sort of easy feeling crap to describe to someone else.

I think sometimes newly diagnosed people think the old timers who are checking their shampoo's and stuff have lost it and been abducted by aliens and had our brains rewired... I can assure you when I was abducted they did no such thing (joke)

The cc issue sounded way over the top when I first started eating gluten-free but after only 6 months I know when I've had even a trace of gluten.

As people have already posted - be sure to check everything for gluten and eliminate any sources of cc along with an elimination diet.

Keep being a loving and supportive guy. It does get easier.

[gfp]

You're doing wonderfully already! I just wanted to suggest a worry-free alternative to the gingerale; just get the actual ginger root and simmer little pieces of it in water - drink it as a tea. I always keep copious amounts of it in the house as it is also excellent as a digestive aid ( I'm drinking some right now!). I drink it as is, but you can add a little sugar, honey etc. That way she gets something hot - as well as safe - in her stomach.

Im actually geting quite partial to lemongrass and ginger tea.... its free as well.... when I peel ginger or cut up lemongrass I disguard the hard bits and peel into a little wooden container I have set aside (well originally I kept garlic in it)...

I either make this just as it is... use the little tea-baggy filters you can buy packets of.. OR add it to the ginseng tea or a little green tea.....

[The One]

cdfiance - I read your post where you say you buy her gingerale to sip on, I used to think ginger ale had ginger in it, the name says it after all, but it turns out it does not contain ginger, it might help to keep her hydrated but won't make her nausea go away. What you can do though is buy fresh ginger at the store [it is in the vegetables and fruits area], cut a 2 inch piece, peel it and chop it, put it in a pot with water enough for about two cups and let it boil for about 4-5 minutes, add a baggy of tea and serve. It used to help me, except when I was already about to throw up and drank it too late, but it will most likely soothe her stomach and relax her at the same time.

[cdfiance]

Thanks everyone for all of your tips and advice. I thought we had gone gluten free but we didn't think to check hair products, lotions, etc. We got rid of anything the least bit questionable and it felt good to be doing something that might actually help Alex on the road to recovery. Most of her make-up we weren't sure about so we decided to throw it all out and she can go shopping for all new stuff when she feels up to it. While Alex was resting yesterday I went on a shopping mission (for almost 3 hours!) to replace everything we got rid of with safe stuff. I also bought a bunch of toothbrushes, since Alex won't use the toothbrush ever again if she uses it to brush her teeth after throwing-up (I find that very cute ) , but here's hoping that soon she won't need to go through them so quickly. I hit a few grocery stores and a health food store and I'm happy to say that our cupboards are now stocked with tea, ginger, gluten-free crackers, applesauce, bananas, and any other gluten free tummy friendly food I could think of. I'm hoping she can find more and more foods that sit well with her while her digestive system gets back to normal so that she can keep her strength up. She woke up with cramps and nausea last night (she said it didn't feel like a gluten thing) but she also kind of felt like she wanted something on her stomach so I made her some ginger tea and brought her some (safe) crackers and she said it seemed to help ease her stomach discomfort some - so thanks to everyone for your suggestions of food/drink that might feel good on her upset stomach. It made me so happy that she was able to get back to sleep without having to rush to the bathroom for any unpleasantness that I could barely get back to sleep myself!

Anyway, thanks again for taking the time to give your advice on our situation. It really helped - Alex has a great doctor but she can't tell us everything like you guys who have been through it can. Alex is far from feeling great but I feel like we're making progress and I think just knowing that she should eventually begin to feel better is helping to keep Alex positve. It's good to know there is somewhere to go when we come across problems as we learn about Celiac/gluten free. Maybe even Alex will come on here some day if she wants to talk with people who truely know what she's going through.

Thanks for taking the time to help me help my sweetheart ,

Ryan

P.S. - I'm sure you'll all laugh at this but when I went to buy Alex flowers today, I panicked and thought they could somehow be contaminated with gluten and decided I couldn't get them! Thankfully, there was an art store nearby so I popped in and got a print I know she likes which in the long run is probably a more original Valentine's gift anyway.

[The One]

It

[Nantzie]

Ryan, you're so sweet. What a thoughtful gift. You're starting to get it that until you KNOW for sure that something is gluten-free, EVERYTHING is suspect.

I'm glad Alex was able to sleep comfortably last night.

Keep coming back. We can't wait to meet Alex too when she feels up to it.

Nancy