Somebody Whack Me On The Head Please!

[CMCM]

I'm not doing very well. I went gluten/dairy free on Nov. 25 and was really good until I got my Enterolab results back on Jan. 18. I was actually feeling pretty good by that time. My results weren't so surprising I guess (celiac & gluten sens. genes, casein sensitive). I was trying to accept eliminating all gluten and dairy forever, but ever since then I've kept messing up. I did well for awhile, then I'd break down and have something (bread in a restaurant) which then led to some very modest eating of various other things. So a lot of my old symptoms came back....muscle/joint aches, asthma/coughing, bloating, D alternating with C but mostly D (not exactly D, I guess, but soft and messy if you know what I mean), and burning in my stomach, stomach aches, nausea. Nothing hugely debilitating, but enough that I don't feel well a lot of the time and I wake up feeling sick. So I went off gluten/dairy again and it's like withdrawal....headache mainly. So I'll be good for a couple of days, then eating something again (hard to give up my cappuccinos) and another cycle of feeling lousy. The weird thing is that when I do cut out all gluten/dairy then it seems like every little thing that didn't previously bother me now bothers me, and I STILL feel lousy. And then eating gluten/dairy can almost make me feel better for awhile (a day or two), which is weird.

I get really depressed about eating sometimes, because once you eliminate gluten, dairy and soy, that cuts out a LOT of foods. And virtually ALL of my most beloved foods are now on the NO NO list. And sometimes I get so sick of the few things I can eat that I almost don't want to eat at all, except I get hungry. I wish I knew a better way to deal with this. I know all the facts about why I must stop eating gluten and dairy, but that still doesn't drive my behavior. I think it's hard when you don't get violently sick from gluten....then the choice is easier. My celiac mom always tells me she doesn't crave bread etc. because it makes her so sick, so it's kind of a negative conditioning I guess. Since my reaction is rarely debilitating to that degree, I guess it's easier to blow it off sometimes.

What to do???

[eleep]

Even before the possibility of having celiac came up for me, I'd radically changed my diet over the last few years in an effort to deal with my fatigue and foggy brain symptoms. So, I went through a long process where I was eliminating things from my diet -- or cutting back a whole lot. Dairy was one -- I love cheese, but I was eating way too much of it, so I really focused on gradually replacing cheese with other, "healthier" things that I sort of liked -- nuts, beans, turkey sausage, etc....

What I've found is that, while it's really hard to give up food that you love, the long term results tend to be more than worth the effort -- and that, once the body adjusts to these changes, it starts to crave the new, healthy stuff more than the cheese. This can take a long period of adjustment, however. I've dealt with the emotional aspect of this by focusing on the healthy stuff I can eat (and do love -- like strawberries and avocados) and learning to cook new things that I really like a whole lot.

Hang in there -- this does get easier over time!

[covsooze]

My big vice at the moment (and I've only been gluten-free for 3 weeks) is cakes and bread. gluten-free cakes and bread but nevertheless, too many carbs. Not because I'm worried about getting fat, but because I'm getting into a difficult emotional relationship with them lol It's such hard work trying to figure out what I can and can't eat (I suspect I've got lots of other food intolerances and am waiting for test results). I've had loads of mouth ulcers (canker sores) and have found I can't eat many different types of fruit Cakes and bread are therefore the easy option and cheer me up...until I get feeling guilty about all the rubbish I'm eating ....sighs...

Sorry not to have anything positive to advise you CMCM. I guess what's good about coming here though is meeting so many people in the same boat, struggling with the same issues.

((hugs))

[Guest nini]

<<<Whacking Carole on the head WHACK WHACK WHACK

ok, now I'm not going to lecture you because YOU KNOW what you need to be doing, you are just having a hard time doing it. I understand. But try looking at wheat/gluten as PURE POISON, mentally brainwash yourself to not want to willingly ever touch gluten again.

What I did in the beginning, and still try to do, is plan a massive cooking day of large quantities of safe yummy gluten-free foods... packaged them all up into individual serving containers (those reusable/disposable glad containers are perfect) and then freeze them. I have a large drop in freezer so this makes it really easy, but you can do smaller quantities if you have a smaller freezer. This not only includes meals but desserts, breakfasts (pancakes, french toast sticks, granola)... that way I am prepared for MOST weak moments where I don't feel like cooking but am really hungry. Several minutes in the microwave with the lid off and these babies are good to go...

good luck with it. I know it's hard.

[CMCM]

I got my Enterolab results for the egg/yeast/soy test today and they were all normal levels, so that's GOOD. But I'm surprised about soy....it seems to always give me problems. Maybe with soy sauce it was always the presence of wheat. But after I'd given up milk awhile back, I tried a soy milk cappuccino and I got the WORST stomach ache and D almost immediately from it. So I'm puzzled about the soy, but still, glad these 3 things aren't things I also have to avoid.

Actually, for a couple of years at least I've fairly well minimized gluten and dairy because I knew they gave me big problems. My dairy was limited....I used to have a fat free yogurt most days, occasional cheese on an omlet or something (but not much), and occasional string cheese. I think I've read that cheese has much less casein than milk, but I don't know if that makes any difference. I remember going on the Atkins diet a few years ago and eating more cheese than I usually did, and lots of protein, and salads for veggies, no fruit, and zero grains. I felt GREAT on the that, with lots of energy, and was surprised by that. I didn't put 2 and 2 together then, though.

Anyhow, my gluten/grain consumption has also been kind of restrained for a year or more, but I'd eat great restaurant bread, for example (only if it was good), occasional cake if it was someone's birthday, and occasional treats such as a donut, but I was careful about not having much every day, and some days I'd have none at all (not reading labels, though, so I was obviously getting gluten thru other things and not knowing or caring about that).

I'm also not a lot into cooking any more, especially now with my gluten/dairy limitations. I'll have to force myself into cooking more. Sigh....

I'm really addicted to my lunch salad right now: lettuce, cherry tomatoes, avocado, sliced egg, craisins, candied walnuts, carrots, and olive oil/balsamic dressing. Yum! I can eat this every day. I probably need more protein, though.

Oh well.....I'll get it eventually. I am tired of feeling lousy, although when I feel good it's easy to get tempted by something and think "oh well, how bad could it be....". Gotta change my thinking. I've been reading my brains out with this stuff, and I know I know I KNOW what I should do.

[DonnaD]

Oh well.....I'll get it eventually. I am tired of feeling lousy, although when I feel good it's easy to get tempted by something and think "oh well, how bad could it be....". Gotta change my thinking. I've been reading my brains out with this stuff, and I know I know I KNOW what I should do.

Carole, we could be twins

I have been feeling exactly the same, I feel like I could do a PhD in Gluten! I am really good at keeping my daughter on the diet but not at practicing what I preach! I havn't tested soy but had been off it for almost 2 weeks until I ran out of rice milk, I had soy milk today on my cereal and it triggered a major binge (chocolate., wine, grapes, crisps) and a return of lots of symptoms especially insomnia . I think it is possible to be intolerant to soy without having the immune response show up on testing.

The fact that I am typing this at 2am says it all.........

Donna

[gabby]

You might want to contact the manufacturers of the Craisins, candied walnuts and the balsamic vinegar and check to see if they use any barley-based sweeteners and/or wheat starch in these products. I know that lots of roasted nuts contain wheat starch too. It is worth checking out. What I learned over the first year of being gluten-free is that sometimes it is the stuff that you thought was 100% safe actually turned out to be the culprit.

And don't beat yourself up. This is a long learning process. Take it one step at a time. Start keeping a little diary of foods you think are making you sick. And learn to exercise your rights as a consumer to call up the manufacturers and ask them exactly what they put in the foods they are selling to you.

Good luck

[WGibs]

What I learned over the first year of being gluten-free is that sometimes it is the stuff that you thought was 100% safe actually turned out to be the culprit.

This is so true. For those of you having trouble with soy milk -- make sure the brand you are using doesn't contain gluten. Alot of brands have barley in them. I almost ordered a soy latte at Tully's yesterday, until I saw a container of Vitasoy behind the counter. I know Vitasoy contains barley flour, because that was one of my mistakes early on. My favorite soy milk -- Edensoy Extra -- also contains some form of barley.

[Timber4est]

When first diagnosed I was really depressed, but I have been a cook all my life, so I didn't look at it as carrot sticks and fruit the rest of my life, I look at it as how can I have my cake and eat it too.

I haven't messed with breads or cakes yet, but discovered that pasta is really easy to make with gluten free flours. Sauces I can thicken with corn starch and I have discovered soy milk in place of dairy milk in may cases works just fine if you swap out spices.

Last night we had Shrimp Curry on gluten free spinach pasta.

I swapped the standard flour with 1/2 brown and white rice flour and made the normal pasta recipe adding the puree spinach to the mixture and cranked the pasta maker just like I would normal.

Curry was difficult as most of them contained wheat, however, the bulk store sold large sacks of curry mix gluten free, all I did was add natural maple syrup, coconut milk and soy milk to the mixture and thickened with corn starch verses the flour I once used.

Being Celiac isn't about not eating, it is about adapting what you eat and really, the sky is the limit! Don't let it get you down, elevate your foods and learn how to have them by altering the ingredients.

[marciab]

I'm right there with you. One day I'll try just a bite of a forbiden food, then the next day if I didn't get a negative response, I'll have a second bite. And so on. Within 3 days, I am usually back in pain and remembering why I stopped eating that food. The latest was nuts. I threw them in the trash today.

They were my daughters, so I feel guilty, but they had to go. They were calling my name. Taunting me.

Maybe, this is just the viscous cycle we are destined to play out over our lifetimes. I'm good for the most part, but I am not and never will be a saint. I'd give myself an A- overall.

Can u please Send that 2 x 4 my way !!!! marcia