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BamBam

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We are really struggling right now - and I just need some friendly messages from you guys to tell her that other people are going through this to. I hope someone else has gone through this anyway. She is not eating well, losing weight, she feels she is not welcomed at many places because of her diet. Her main problem though is her irregularity, she is so frustrated with her diet and not being able to go every day or at least every other day. Her family keeps telling her to eat whole grains and we just don't know where to go with that. So she started eating more carrots, baked potaotoes, meat, a little more salad, an apple every now and then, but nothing seems to move in her. She works a lot by herself and she is so worried that her body is going to fail her and she will have an accident or something. I mean this is really paralyzing her right now. She is afraid to take too much fiber at one time so she just eats little bits here and there for fear of having diarrhea. PLease, somebody tell me that you understand what she is going through, she feels so alone right now.

Mr. BamBam

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Guest nini

I absolutely understand... Please give her a big {{{{{{{{{{{{{{{{{{{HUG}}}}}}}}}}}}}}}}}}}}}}}from me...

Somedays all I can convince myself to eat is a bowl of cereal (Nature's Path Mesa Sunrise) sweetened with a little honey and some milk... (if she can't have milk maybe there is a rice milk or almond milk that she can have) I can remember being so terrified of the diarrhea and then making myself constipated because I didn't want to eat ANYTHING that could set it off.

Does she have a local support group that can point her in the direction of places where she might safely eat, or someone that she could talk to locally about specialists, restaurants, Dr.s, etc?

The fear can be paralyzing, but we cannot give in to the fear or it will control us. Maybe she could try some meditation techniques or some deep breathing techniques to help her relax her mind as well as her body.

There are some gluten free grains that are higher in fiber than others, she just has to find what works for her, same with veggies and fruits. Somedays I can tolerate rice just fine, other days I can't... so there may be some things that she is afraid of that she still might be able to tolerate, it just might be the combination of certain things, I know there is a theory about food combining that certain kinds of foods should NEVER be eaten together, maybe something to look into.

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Please let your wife know that she is not alone. There is a entire board of people here! For me I had to take baby steps with the gluten-free life. I tackled one issue at a time instead of trying to do everything at once. There is power in knowing what is wrong. I would also recomend finding a support group. If one cannot be found have her write her feelings to the board. It is healthy to vent out your feelings. My thoughts are with you both.

Hez

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I forgot to mention that she has to eat both dairy free and gluten free and that leaves out so much in the regular world. I've given up gluten with her, but I can eat cheese and other fun stuff and she feels so left out.

Mr BamBam

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I definitely feel her pain. Not being able to do something seemingly predictable, like trust your body to behave a certain way is exhausting. You have to be constantly on guard, and know where all the bathrooms are. Every stomach twinge or wave of nausea gives me an anxiety attack because I don't know if it's a passing thing or if I have to run to the bathroom. I have family who doesn't understand either. It's really upsetting. I keep feeling like if I had diabetes or heart disease and had to start eating a certain way to be healthier, they wouldn't even blink, much less blatantly argue with me about it.

I have no answers for the family telling your wife to eat something that is basically poison to her, except that mine have slowly started coming around. I never, EVER thought they would, and then all of a sudden I've seen a few things where they're moving in the right direction. I think that family gets freaked out for some reason.

I just don't understand why people don't get it. It's not that difficult of a concept to grasp. She has to avoid wheat, even the tiniest amounts, because it causes her body to attack itself and makes her very sick. See, you don't even have to use medical words, and that's the whole disease in a nutshell.

One thing that helped me is really just thinking of them as having some sort of temporary mental condition. Like they couldn't understand English, or simple logic. And then think of them as being sick with that. Makes me a little more sympathetic to them. It's kind of a convoluted way of dealing with it. But the alternative for me would be to scream at them and totally pitch a fit about it every time they rolled their eyes at me, or gave each other irritated looks. Which was constantly for a while.

The worst part was trying to get them to understand that I couldn't just take my kids to Walmart to run errands by myself. I needed help. Because if you get an attack of diarrhea so sudden that you've got about a minute to get to the bathroom, and you have to bend over and pick up a 30 pound preschooler, and a 20 pound toddler, who are squirming and yelling, and RUN to the bathroom, hoping you won't poop your pants in the process, and then hope that there isn't a line in the bathroom, you tend to avoid taking your kids anywhere without help. And at the time I had no idea what was giving me the diarrhea attacks, so couldn't predict them at all.

I just challenge them to pick up a 40 pound bag of dog food on their way to the bathroom the next time they get food poisoning. Because that was what it was like for me.

Plus I've got scoliosis, so couldn't lift my kids without hurting myself anyway. Which should have been enough for some honest help. But they argue with me about that too. Like I faked the x-rays or something?

But, according to this section of my family, my (perfectly healthy) sister-in-law has three kids who are all preschoolers and toddlers, so if she can do it, what the heck am I complaining about.

And lately they've been complaining to anyone who will listen to them for more than 30 seconds that I never come over and "hang out" with them. And how neglected they feel because I never bring the kids over to see them.

Poor things.

Thank God I've got a fantastic friend who knows all my drama and helps me run errands twice a week. I don't know what I would have done without her.

Sorry. I've gotten off on my own little tangent. This is a very sore subject for me, as you can tell.

Just let your wife know she's not alone.

Nancy

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Hi Mr. Bam Bam--Sorry to hear your wife is still not doing any better. I am also dairy free as well as gluten-free. I eat a varied, enjoyable diet. I posted some examples of what I eat in a previous post on this discussion, so I won't subject you to that again! I wish I had some additional advice to give regarding the constipation. I always had the opposite--urgent and unpredictable D. I can certainly understand her reluctance to venture out--I had to quit my job as a result of this disease. The anxiety over the possibility of having an accident or getting sick in public is horrible. I know exactly what she is feeling. Even after I got a handle on the symptoms, the fear is still there and I have to fight against it all the time. I hope with more time, it will ease up, but its a tough thing to work through. Please tell her that she is not alone. We're all behind her and will try to help in any way we can. Nini's suggestion about a support group nearby is a good one. Keep us posted :)

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My heart aches for Bernadette and how she is stuck in this place...and been there for a while. It can be an immensely dark place when you feel as if you have no control over your body. Depression is definitely a natural struggle for those with chronic illnesses. ...And often times you eventually feel like you've run out of perserverance. I am a practical person, so for me, I deal with struggles by coming up with a plan :) I'm sure Bern. has tried all the suggestions? I know she is frightened of D, and afraid of fiber for that reason too...but I think its far worse not to go. However, I understand with work etc, it can get complicated or embarrassing, or nerve-racking. I hope soon she will be able to work and travel without any sense of dread. I still recommend psyllium. I have switched to a new kind which has never given me D and is much gentler on my system. I think she may need to jump start her system..which happens to me. When it seems like I keep slowing and slowing down, one day of fiber won't do it...I need to sort of clean out and hit the fiber for a while. There are quick fixes like laxas, magnesium, sometimes cider/fruit juices, but these are only temporary solutions. Is she 100% sure of being gluten-free--not any contamination (no meds, supplements, foods, lotions, makeup etc w/gluten). I know initally when she was struggling she suspected she was still getting some gluten. Has she gone totally cf--dairy free too? I know she was exploring that too. She could investigate getting tested for other food intolerances. A food journal too--when she has a better day or does go, what has she been eating or doing for the past few days? ...that's how I found out about my issues with dairy.

Please tell her we care about her and are hoping for a 2006 that is very different from the past year. Tell her I will be praying for her today. Tell her to be encouraged b/c there are so many of us here who were in similar places to hers and have improved and grown so much. Also, I suggest (more practical stuff : ) using the simple things to take her mind off of her worries and fears....

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I can relate to being discouraged about this diet, but encourage her to keep up her nourishment by eating three good meals a day. It will only make her more depressed if she isn't getting anything to eat. Try and help her see what positive things there are in her diet still. THat helps me. I just went through a face of being very down about this diet, but more then the diet it was that I was still getting gluten. So make sure she is definitely gluten-free, even shampoo's and conditioners, etc. Make sure she tries to get enough sleep and try and get outside to exercise if she can. I know it is very hard when you feel that way! I was there, but I did manage to get all the gluten out and enough rest, ect. Eating better really helped. As far as the horrible diarhea and then constipation. I have heard that fiber helps both. SO if she could take either metamucil or citrucel it may help. I can't guarantee that. I was still having problems back and forth between C andD until I was 100%gluten-free and I think citrucel helped me.

Tell her we hope she feels better soon!

MOnica

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Oh, and I forgot to recommend a tea called Smooth Move. I get it at my regular grocery store, in the health food section. And I've seen it in all the health food stores.

I had a period of time where I wouldn't be able to go for days, but then when I finally was able it go it was awful diarrhea that lasted for most of the day. I wasn't able to predict when that would happen, so it was really anxiety producing.

So after I found Smooth Move, I was able to at least control when my body would let go of everything. And you can control the strength by how long you steep the teabag. I usually do it for just 2-3 minutes and it's really super gentle. It never gave me diarrhea or urgency at that strength. You just have to go to the bathroom. Almost like a normal person. Then, my body would go back on its (at that time) normal constipation cycle, so I knew I wouldn't have to be worried about it for the next few days. So it gave me some freedom. It's not something you want to use all the time. I used it maybe a few times a month. Not even as often as once a week. Maybe once every 10 days or so. With anything like that, your body can become dependent on it. But I think it may help during this time where you guys are trying to figure all this out.

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Have you tried citrucel? My gi recommended it (he uses it) and it's gluten-free. It helped me tremendously when I was having real problems with constipation. After I got rid of the hidden gluten in my diet, I haven't had any problems except when i eat too much cheese. I'd start out with one capsule in the a.m. and one in the evening. If that didn't do the trick, then I'd up the dose; the max is six caps a day.

Hope that helps. Let her know we're rooting for her. And I understand about family not being understanding. My db and his wife at first were real understanding, but now they think that if I bought their nutritional supplement ($70/month) I'll be cured so it's my fault now that I can't eat gluten. GRRR! But the way you're trying to help her is amazing. I hope something works soon for her.

Annette

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Guest Zmom

After a year gluten-free my son -almost 5 had did first bout of constipation which was over a week .nothing worked-then at whole foods market-kids vitamin section I found Yummy Bears Fiber -chicory root fiber bears -taste great and worked great. They did not cause diarrea but there was a system clearing. better to get the toxic stuff out anyway. Now he is regular.

Personally I still have bouts of urgent but no longer incontinent bowels. it does get better.

a life saver in my house has been the chebe bread products.www.chebe.com. I make them with colavita cold pressed olive oil, (gluten-free) instead of margerine You just have to play around with the mixes. I found half cinnamon chebe mix with half all purpose chebe (tapioca) flour works well. Make sure with baking the pan has never been used for a gluten product. gluten residue is hard to remove.

Also for a little extra stimulus- scharffenBerger -they have a great website)natural cocoa powder. and honey.

There were weeks when all I ate was that bread with egg salad-spectrum canola mayo(gluten-free on label) and land o'lakes eggs.and poland springs bottled water.

cant get back to your original post if you can have corn Mrs Leepers organic gluten-free corn pasta is a new awesome discovery...Amy's family marinara pasta sauce is great too,though expensive.

My husband is very supportive. .a totally gluten-free house is the most important thing for my sanity and lots of hugs.gluten-free is not just food but also laundry soap,shampoos....

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I have been there, like some of the former posts have written...the fear can be paralyzing and actually make things worse. When I was at my sickest, we had to cancel a trip to Italy due to my fear of having diarrhea on the plane, at the airport...etc. I literally stayed home for months going no where...thank god I'm self employed and could do that. Once I learned what was wrong and avoided gluten, dairy and other trigger foods, I started to get my confidence back. I still have a twinge of worry if I have to go on a trip or have a meeting but I take immodium with me and I've never had a problem. Now, that I learned to relax I noticed a huge difference in my bowel issues. Tell your wife it will get better...we all go through rough periods in our lives but it does get better.

Take care,

Charlene

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Mr. BamBam,

I simply love the fact that you are so concerned and empathetic to her current situation-her despair. Yes, the fear can be paralyzing but once she faces that fact that being on a committed gluten-free and dairy-free diet has its rewards it will help her move forward. Also, we found a fiber that keeps us regular. We use Psyllium Fiber by Yerba and it does keep one regular. Another tip is to try pumpkin puree' it is located in the baking aisle of most supermarkets and it does provide fiber, bulk and reduces diarrhea. It might help her.

Meal planning is another way to stay on top not below this chronic food challenge. Here's what I do most of the time(but I still do have my bad days...days when I whine, and feel generally overwhelmed)When I plan my food shopping list, I make sure that I plan most of the meals at that time. I use all of my gluten-free, DF recipes and then begin to write my list. I am still learning to plan ahead for the days when I need a meal in a pinch. Especially if I need something to eat when I don't feel well and don't want to cook. My husband is also gluten-free so that helps tremendously. We try to keep a couple of gluten-free frozen meals in the freezer too.(Amy's brand)

But all of this took many, many months to realize and committ too. I am amazed at how well I am doing since my initial diagnosis and yes social events still depress me. My recent social event involved my in-laws. I came prepared with a couple of baggies filled with gluten-free chips. I opened them up at the table and joined others as they ate their gluten chips and dip. My sister-in-law said,"You brought your own chips..." and then laughed out loud. :angry:

There is nothing convenient, easy or fun about this lifestyle. But, I have managed to keep my head up more, whine at little less, increase my reserve of recipes and improve my health. :D

I hope to hear from you soon. I would love to hear how she is coming along...and hooray for your continued support to her!

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