Hello All,

About a year ago we realized that when my wife injested wheat products she felt horrible. Everything from depression to just feeling miserably sick. This seemed to pop up about when she was 26 or so and by the time we started to figure it out it was getting really bad. We finally self-diagnosed after doing an experiment by which we removed all wheat from her diet for 3-4 days and then had her eat some Wheat-Thins. She's been eating gluten free since.

Its been a huge struggle since. She's not as bad off as many folks I read posts from, but she's really strong and hides a lot. I'm doing a lot of the research because a) she won't, and B) I feel robed... I want my wife back. This evening she was fine, happy, good evening ahead, then we got some mexican food (enchilada's are normally safe) and, we think due to contamination from a flour product in the kitchen, feel into depression and curled up on the couch and is finally sleeping.

Here is my question... no matter how safe we try to be there are times when we're supprised by a reaction to something and don't know why. I suppose this is to be expected in the first couple years of living gluten-free. But... is there anything we can do to ease the symptoms when we're caught off guard? Tea? Large quantities of water? Is there anything I can do to comfort her and make things at least more bearable than just toughing it out on the couch?

Any hints/tips/tricks are greatly appreciated!!!

technikolor

lots of water is what I was told, and I use kyolic garlic digestion formula it is gluten free.

You might try activated charcoal capsules to help absorb. For food allergies, Vitamin C in mega doses can be really helpful. If too much it causes diarrhea, but that isn't all bad if you are trying to move a food through your system.

I am taking L-glutamine which is supposed to help the intestine heal. Its an amino acid. I don't know if anybody uses it just for glutenings, but it could help overall.

Ginger tea helps a bit with nausea for me. I find drinking lots of Pedialyte is better than water because it also replaces the lost electrolytes which can help prevent headaches and other symptoms of dehydration. Lots of sleep is good too -- eating gluten causes a fatigue that I can't even explain. Just being there and supporting her as it sounds like you're doing is probably a huge comfort to her even if you feel like you're not really helping. Just having a hand to hold helped get me through some pretty rough nights. You could maybe get her a hot water bottle or heating pad and cook her bland, soothing foods (rice, bananas, soft veggies, etc.) until her stomach starts feeling better.

Is she avoiding all gluten sources and not just wheat? That is important.

When I got sick I felt REALLY bad that my fiance had to miss out on all of the fun active things that we did together before. Hopefully your wife can avoid getting ill for the most part but when she does if it leaves her sick and fatigued for over a week or so you might want to try out some new low key activities that you can do together when she is not at her best. That way you don't feel like your life is totally on hold when she is ill. For example my fiance and I used to do mostly active things (hiking, biking, volleyball, rockwall climbing, etc) but when I got too sick to do those things we tried to replace them with cards, board games, movies, etc. It's not a perfect solution but it's nice to have a new routine while you work on getting well enough to do everything you used to enjoy.

"I'm doing a lot of the research because a) she won't, and I feel robed... I want my wife back."

First of all, I think this type of thinking is going to do you in. The best way to support her is to accept that this is how life is going to be. Why do you feel like you have been robbed? Is it about having your wife be able to do the things you want to do? Or her feeling ok enough to function daily? I can tell you from experience that having the stance that her diagnosis is affecting you is going to make her feel even worse. She doesn't want to feel sick and would do anything to not be this way. But adding on top of it that she is affecting your life will make her feel even more anxious about the whole thing. The true way to be there for her is to accept that there are accidents. That we are not infallible, that food labels are not infallible, that the people you call at the company are infallible, etc. She has probably accepted that this is how her life is going to be. If you want to be part of a good life for her, you might want to consider how robbed she feels, and how robbed she will feel when she realizes that you feel that her diagnosis is putting you out in some ways. She probably wants to research it, but it really is frustrating when you feel sick. And you know that it is hard to find real information out there. That is why we all share stories on this site.

My advice is listen to her and start sympathizing with her side.

I wouldn't be here if I weren't. I'm not frustrated with her at all, I'm frustrated with the poor handling of gluten products in kitchens, terrible labels, a lack of readily available gluten free replacements (we're still experimenting with gluten-free breads and pastas, but don't have it down yet), and the lack of information out there. I want my wife to be healthy and happy, being prepared is the best thing I can do to support her. I'm considering going gluten free myself just to better understand the experience. Listening is great, sympathizing is great, but at some point action is required; prevention is key, methods for easing are necessary, ultimately over the long term it'll all ingrain and be less of a fight.

technikolor

I think your outlook is ok and you obviously know your wife better than any of us. I do believe that it is like a death. You know, the stages of grief: disbelief, anger, etc. etc., acceptance being the last. So it may be a "death" of feeling like a young (I don't know how old you are but it doesn't matter), healthy couple and change your view of life. Cancer or other serious illness would do a similar thing.

The fact that you're considering going gluten-free too is a great support.

I swear by peppermint tea or lemon balm tea. Lemon balm is an ancient herb used since the middle ages for stomach problems. It grows wild in my yard but I also bought tea bags at a health food store (or find it online). Peppermint is easier to find. Celestial Seasonings brand is gluten free. I also use Trader Joe's Mint Medley, which has peppermint, spearmint and lemon grass (not lemon balm).

I drink it after being glutened or if my stomach hurts. I usually feel better the next day. Plus it makes me happy.

Good luck to you and your wife.

Hi technikolor, I understand how difficult it is to absorb all this. There are a lot of people here with a lot of advice, and it tends to follow the same pattern for all newbies. Here's a link to a thread with good advice, after the first post. Make sure you read about how to make your ktichen safe.
http://www.glutenfreeforum.com/index.php?s...mp;#entry337040



I think going gluten free with your wife would be an incredibly wonderful thing for you to do. My boyfriend doesn't even let gluten in the house. Are you aware that there is gluten she may be reacting to in not only wheat, but rye, barley, and oats as well? Have you learned exactly what Celiac disease is yet? I understand that it doesn't seem like your wife has it as bad as some here do, and I'd be thankful for that. I also didn't have stuff as bad as the people here, but remember, the longer she stays off gluten, the worse it will feel when she does get glutened. My most recent glutening was Hell on earth, so you'll get even more careful as you go. There's also something called 'brain fog' that we all talk about experiencing, it makes us feel stupid, like we can't comprehend anything. This may be contributing to why she doesn't want to research this, it's probably too confusing and overhwelming for her right now. Is there any other info you might be looking for that you haven't found yet? Also, where did you get those enchiladas? It's probably best for you to steer clear of any restaurants for a while.

Oh, for rice pasta, try Tinkyada. It's the most accessible, in almost every grocery store, and some don't like it, but pretty much everyone here will recommend it. DON'T try Deboles, it's godawful stuff.

White rice with sugar, raisins and soy milk or a baked potato help. The activated charcoal is terrific it will bind to everything and help neutralize it.

I think going gluten free would be a good idea if you really want to understand and help prevent future problems. I really wish my boyfriend would do the same. But you will find out that it is very difficult. Congratulations for toughing it through. It must be hard for our better halves that have to live with us.

[quote name='mftnchn' date='Aug 28 2007, 02:13 AM' post='339154']
You might try activated charcoal capsules to help absorb. For food allergies, Vitamin C in mega doses can be really helpful. If too much it causes diarrhea, but that isn't all bad if you are trying to move a food through your system.

I am taking L-glutamine which is supposed to help the intestine heal. Its an amino acid. I don't know if anybody uses it just for glutenings, but it could help overall.

I just started to use L-glutamine. I am not sure if I like it or not. Have you had any side effects. I seem to have constipation with it if I do not drink more than 64 oz. of H2O. I find getting 64 oz. hard enough. I would love to hear more about why you started using this amino acid and how it is affecting you. Thanks in advance.
Debbie

Yes, my wife has been very supportive. I would have a difficult time otherwise. She does see me getting better, that helps motivate her. After 25 years of me running to the bathroom every time we went out to eat somewhere she knows how important it is. We also have 2 daughters who both have the same problem, one lives gluten free, one lives with being sick. I am fortunate to have her support, it makes all the difference. We are very limited in "going out" now. We just don't eat out much anymore. She did remark last week that she actually feels better herself on the gluten free diet.

Yeah I feel like I am putting my boyfriend out sometimes because we cannot go out to eat. He understands now how hard it is for me and is starting to accept this life. I'm glad that your wife feels better on the diet. I feel that most people would, but that is probably just an opinion. I deal more with headaches, emotional issues, and other digestion issues so it's not as much the running to the bathroom but more of the discomfort we live in that really affects my boyfriend and I. Glad to hear things are going well for you.

I know exactly how you feel. My husband has celiac disease, and we both try to stay as informed as possible. There are so many areas things that are out of control-from food labeling to cross-contamination, and so on. My husband goes out to eat every day at lunch, and many times he has to eat out for dinner as well. There are so many areas of hidden gluten, and he too suffers when he has ingested gluten. He becomes irrationally angry, and sleeps a lot. I find him incredibly difficult to be around as I am often the target of many of his tirades. After a few days he "comes to his senses" and feels bad. I am a patient person, and feel bad that this happens to him, but it comes to the point where I can't live like this. All these up and downs are SO frusterating!!! Has anyone else experienced this?

Yes, i too seem to have problems with depression when i get gluttened. sometimes I am real irrational and moody, afterwards i usually feel bad for what i said or did.. Thank god I have a understanding husband..

Hes says he can tell by the way my face looks, i guess i might as well type GLUTTENED on my head.
It must be hard to live with us

Thanks for posting about your husbands irrational behavior. Lately my husband and I have been having incredible arguments that after some time passes, seem as though everything was way overblown. I will watch for this and my gluten situation. Yea, yet another thing to attribute to Celiac. People are going to think I am blameing my Celiac for all of my character flaws now too. Even more reason to be extra careful!

Best thing I have when I have been glutened is Aloe Vera juice and lactobacillus acidophilus (both available from Health shops), it really soothes my swollen guts. I just got glutened by Pringles - the Codex Alimentaris wheat starch in them. I think it's on in England that it is allowed. It is supposed to be tolerable to coeliacs but I end up with severe IBS with it. So have learnt my lesson and won't be eating them again.