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New And Kind Of Depressed About The Diet
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Last night I made the enchilada sauce recipe at this site. It was SO yummy. I put it on bean enchiladas. Everything was gluten-free, except less than 1 percent of the chicken broth had wheat in it. And possibly my chili powder. I thought surely I would be okay. B)

Well, um, no. I have been mostly gluten-free since Dec. 04, and last night I ended up with lower GI problems last night. Today I suddenly and briefly got all red and itchy and hot on my hands, my elbows, my face, my feet, and the backs of my legs. :blink:

Well, there's no doubt that I need to not be eating that stuff. But it's also kind of depressing. I guess it is normal to get down when it's hitting home that this is for real, for the rest of your life.

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Thats the importance of keeping a 100% gluten free diet. Even the smallest amount can damage your intestines even if you don't get symptoms. Why is it even worth it? The risks of cancer, diabetes, osteoporosis...is gluten worth that? it doesn't matter if you put a pinch of wheat starch in what you had....would you put a pinch of rat poison in? Well gluten is just as bad for you. Eat to live don't live to eat.

You find brands you can have, and you will get used to it and you will find it to be normal for you when you learn about it more.

Print out the safe and forbidden lists on here if you haven't

http://www.celiac.com/st_main.html?p_catid=12

And on this site you can find out about brands that won't hide anything, good gluten free brands, etc. This is a great site with wonderful people.

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I like the rat poison analogy. Just keep in mind that gluten is poison to your body and you are less likely to be tempted to cheat.

Every time I drive by Krispy Kreme donuts I get very depressed, but I keep saying to myself over and over "gluten is poison, gluten is poison, gluten is poison" and I'm able to keep driving right on past. I once got into the drive thru trying to convince myself that they were so processed that there couldn't possibly be any protein left in them!!!! :blink::blink: Fortunately I came to my senses before actually pulling up and ordering any! :rolleyes:

we all make occasional mistakes where we accidentally get glutened, but it's not worth it to risk being glutened with even a small amount if you can help it. If you know it has even the tiniest bit of gluten in it, just remind yourself it is poison. Works for me!

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Well, um, no. I have been mostly gluten-free since Dec. 04, and last night I ended up with lower GI problems last night. Today I suddenly and briefly got all red and itchy and hot on my hands, my elbows, my face, my feet, and the backs of my legs. :blink:

Well, there's no doubt that I need to not be eating that stuff. But it's also kind of depressing. I guess it is normal to get down when it's hitting home that this is for real, for the rest of your life.

I know, it's hard, but you're going to feel better afterward. Take that meal as your wake-up call. Time to stop being "mostly gluten-free," particularly with the proof of the swab diagnosis. You need to go 100% gluten-free from now on, with no cheating, no breaks, no temptations. Go to a large health food store, and start shopping! :D

One thing to keep in mind, it DOES get easier with time! Now we just need a Senator with Celiac, to really get this condition out into the open!

Cheers,

-Pat

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no gluten really does mean NO gluten, not even a little. it can take some time to get used to it, but you will eventually. there's plenty of gluten-free broth available, and gluten-free options for most things, so search those out so this won't happen again.

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Hey, that is a really good way to put it into perspective. Thanks, you two!!! I know that one reason I'm struggling because it's not just gluten, it's soy and cow's milk, too. Most gluten-free breads aren't even doable for me because the ones at my Whole Foods/Harry's usually have some soy or dairy in them at my grocery store.

Tonight I will put signs that say gluten, soy and cow's milk are poison in my house and my car, at my desk and on my fridge. And I am going to explore some of these links where you buy by mail. That must help loads, because if I don't go into the processed/prepared food sections of the store -- which I usually avoid anyway -- I can't be tempted.

Thanks!!

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westie - check out the Gluten-free Casein-free yahoo groups as well. they're mostly for parents of autistic kids, but they have a number of resources you may find helpful. I found giving up milk to be much harder than giving up gluten, and limiting soy to make giving up milk that much harder (I don't have soy often any more), and it did change the types of things I eat (no more yogurt - I make my own foods, but have things I'd rather make before a nut-milk based yogurt). That's not bad, however, it's just different. (Important mantra: different is not bad! :-) ) After a few months, I got used to it. Yeah, I still miss some of the old stuff, but it's better than being sick!

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Westie, Life Grocery in Marietta has a large selection of gluten-free and CF foods as well as soy free and even raw.... you may find nirvana there!

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Oh cool! I looked that up and it is only 30 minutes from here so I will check it out. Also just found some gluten-, soy- and dairy-free chocolate chips, as well as the same gluten-free/sf/df boullion in the gluten-free mall, so I ordered those to experiment with at home.

If I can find a) substitutes for the basics (I've got the dry ingredients down pat, it's the other stuff I'm struggling with), and B) some way to eat and enjoy chocolate with no gluten or dairy involved -- that will be a big morale booster!

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Tropical Source makes Gluten-free Casein-free chocolate. (It is made with soy-lecithin, though.)

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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