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Member Since 11 Aug 2009
Offline Last Active May 29 2015 05:40 PM

#633574 Food Diary Ideas?

Posted by on 21 August 2010 - 11:03 AM

I haven't found one I liked yet - I ended up using Microsoft Excel and making my own real quick.

But just as a suggestion that my dietician gave me that I wouldn't have thought of on my own, keeping track of the brands you're using is REALLY useful. I've found a few brands that I couldn't use, and much later we figured out a contaminant, or a processing ingredient that they had that wasn't listed. The food itself was okay, once we tried a different brand. :-)
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#633567 Just Diagnosed, Questions Inside Post

Posted by on 21 August 2010 - 10:37 AM

I sent you an email - I'm in your neck of the woods! You can totally do this. We've got a good celiac community here, if you haven't checked it out yet. I've gotten some great information from our local group. It's a bit crazy at first, going gluten free and keeping an eye out for contamination and such, but it gets easier. Still a little crazy, but easier.

1. Is it really necessary to get new pots and pans and plates and silverware?
Silverware should be okay, glassware should be okay, stainless steel should be okay unless it has tons of crevices that are impossible to clean. Sometimes that can still be okay. The ones that can be a problem are teflon if it has scratches, wood and bamboo, and plastics. These are porous to gluten and can release it back into the food. However, I know some people have an issue with this, and some don't, so you might want to see how you do at first, or use only stainless steel and glass and try the teflon stuff later to see if it affects you.

2. What if any books have been lifesavers while dealing with this disease?
I'm right there were Sandsurfgirl. The web has been the most useful for me. I got a few books/cookbooks, and I pretty much never use them. Information on Celiac Disease is changing constantly - lots of new research, which is good for us, yeah? But the books just can't always keep up with the new info. The gluten free blogging community has some awesome recipes that have been easier to search through than in cookbooks, so I've ended up using their recipes much more than the books'. One book I've heard others recommend, though, is Celiac Disease for Dummies. I never read that one, but I've heard people who thought it was very informative and useful for them.

3. How long were you gluten free before feeling relief?
I had a physical change within days. I know some people who took weeks or even months to notice a change, for better or worse, so it's very individual. For myself, I turned out to be allergic to a couple of the things that are more prevalent in Gluten Free foods, so it was making me sicker until we figured things out a little better. I hit the dairy and the soy problems, like was mentioned above.

4. If you have children, did you have trouble conceiving?
I didn't have trouble conceiving, but I was undiagnosed at the time, and possibly not even triggered. I was very sick during both pregnancies, though. What I have heard, however, is that if you are on the diet and being very strict about it, there shouldn't be any conception issues. I've also read that during a pregnancy was the time to be very, very strict about the diet, as the nutrient intake would affect both you and the baby, so keeping the villi healthy would be a big priority.

5.Do any of your family members also suffer from Celiac's?
Oh heck yeah. My father was diagnosed about 8 years ago, and he told me it was 'like an allergy,' so I never looked into it. When I got diagnosed, I pestered everyone to get tested. My brother and my daughter came back positive (no symptoms for daughter at all). My son had many of the symptoms, so even though he came back negative, I took him off gluten, and he has done much better on the diet. I've now contacted cousins and Aunts and Uncles and found out many of them have been having physical trouble or gut issues that no doctor has figured out yet, so many of them are getting tested now, too. Based on my family's experience, I'd very much recommend seeing if your parents, siblings, and any children can get tested. That population (having a celiac positive relative 1 degree removed) has 1 in 22 people test positive as well.

It's a weird thing. Myself and my daughter never had what I would have considered to be Celiac symptoms. No gut issues whatsoever, we were both a little overweight. So I'm glad I tested her 'just because,' as I never would have suspected she had it, just going by symptoms, you know?

Wishing you good luck, and, well, there's more in the email! :-)
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#632911 Eating Out

Posted by on 18 August 2010 - 11:52 PM

re: the alochol - you might want to consider holding off on the alochol for a little bit. My own GI had mentioned that alochol would slow my healing. If you are still getting glutened a lot, it might be helpful to keep alcohol out of your diet until you're feeling better.

Oh! For safe foods at the Olive Garden, anyway, their gluten free pasta might be the best choice - it is prepackaged and not made there. They just heat it up, so as long as you make sure they don't touch it with contaminated hands, that might do for you. A conscientious Olive Garden manager has said to me before that he didn't consider any other gluten free choice of theirs actually safe for someone who needed truly gluten free (rather than just 'very little gluten'). Too much chance of cross-contamination.

Have you spoken to any managers at the restaurants? Often if you do, and make it clear just what is needed to avoid getting ill, they can tell you if it can be done, or what they have that would work for you. Many times, the manager took it upon themselves to oversee our food prep to make sure it was truly free of gluten.
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#632909 This Is All So Totally New To Me..

Posted by on 18 August 2010 - 11:42 PM

Okay, let's see!

Q1. Do you really have to watch what shampoo etc you use?
A: Yup, I would. While some celiacs report issues with skin contact, I'd say the biggest reason, for myself, has been because every once in a while, I get the suds on my lips/mouth, which means enough can be swallowed to cause a gluten reaction. Same pretty much goes for lipstick, chapstick, and lotion/sunscreen on your hands (if you ever put your fingers in your mouth).

Q2. Cross Contamination- If you aren't a severe celiac, do you still have to worry as much about it?
A: Yup. Admittedly, some celiacs react to less gluten than others, but even people who have mild reactions will react to very small amounts. Darn it.

Q3. Lactose- about 2 weeks into my sudden onset of celiac symptoms I developed a lactose intolerence as well, I read this can get better once you get healed, is this true?
A: Yeah. Not for everyone, but a lot of people. My son had this. He's had issues with dairy for years (he's 8 now), and 2 months after going gluten free, suddenly it didn't bother his tummy anymore. Of course, then he started having other issues with it, but the tummy part healed up, LOL.

Q4. Am I really going to feel BETTER??? I have no energy, migraines all the time, 24/7 upset stomach, bloating/gas, irratibility, acne (and I'm 30 which is no fun!) I've just thought I was doomed to feel like crap my whole life and had no idea why.
A: Most hopefully, yes! The things that improved for me: depression, memory problems, joint pain, getting sick often, healing slowly, anger and irritability issues, and a host of others. Actually, I hadn't thought about it 'til reading this post, but my acne's been much better too!

Q5. How do you manage with a gluten lovin family? I have 5 kids, 1 with autism and 1 with aspergers (diet change may help them) I also have 1 with ADHD and Bipolar, he's 9 and very small for his age, has had GI issues his whole life, I think he needs tested as well for celiac disease.
A: First...I would seriously consider testing all your kids for celiac disease, pester your parents and any siblings to do the same. Out of that population (1 degree of separation from a celiac), 1 in 22 will have the disease. Silent celiacs (no symptoms) is the biggest growing population of celiacs, too. My father had celiacs, but we never tested anyone else. Then I was diagnosed by accident, and I pestered. My brother and daughter came back positive, even though my daughter had NO symptoms. My son, who had tons of symptoms, tested negative, but I took him off gluten anyway, and his symptoms improved significantl, so I'm assuming either he's intolerant or was a false negative. Also, for your kids? If they got your gene, there is a very good chance the disease will trigger sometime in their lifetimes, and that it may not have any symptoms for a few years, so having them tested every few years is considered a good policy, from what I've read.

My hubby is not celiac positive, and didn't want to give up gluten either, but after a few weeks of trying to keep the house gluten AND gluten free, he has ended up getting his gluten outside the house and sucking it up in house. Otherwise, we ended up feeling a bit too paranoid with the kids and trying to avoid cross-contamination and such.

Q6. How do you manage when you are constantly on the go? with 5 kids I am always on the run, dr appts, school events, etc what fast food places are best to find quick eats on the run? And is Starbucks (latte's) safe??? God I need my coffee lol!!
A: I pretty much have a day to cook, just for food to take with us. We have big, honkin' insulated lunch bags for everyone now. If you have a large budget, you can go to a grocery story and get a lot of premade gluten free stuff, but we haven't been able to afford that. It's very tricky to find safe places to eat out, and usually the ones that have gluten free things are more expensive. If you have In n' Out Restaurant where you are, their fries are gluten free; just mention you have allergies/issues with gluten and that you need the server to have new gloves touching their fries and to not have the fries touch anything else. They have a button for something like that, believe it or not. McDonald's ice cream in a cup was gluten free, last I checked. Uh....That's all I know of in the fast food realm, sadly. Starbucks has started carrying 'Kind' bars, which are gluten free. Nut and fruit bars, essentially. Some coffee there is gluten free, and some isn't. I believe if you google starbucks coffee and gluten free, they have some pretty detailed info. pop up. :-)

Good luck with your new start - I hope you start feeling better ASAP!! :)
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#631612 Asymptomatic Celiac, And Now That I've Gone Gluten Free Am Having Stomach...

Posted by on 13 August 2010 - 11:34 PM

I was an asymptomatic celiac, too. A bit overweight, no GI issues at all, no food allergies or issues - they found the celiac disease because I was having a biopsy for something else entirely and asked if they could check for it 'while they were down there' as a relative had it. Very unexpected.

For me, 2 weeks was absolutely enough time to start having reactions of some sort. I started having trouble at day 2. 0.0 I started feeling dizzy, stomach pains, the runs, headaches - I kept thinking just like you've said: maybe I have a stomach flu or something. There's no way there could be a change this quickly from going gluten free. It can't be gluten, because I don't have GI symptoms to it. I don't have any other food issues, so it can't be that, either.

At least in my case? Wrong on all counts.

What my situation has been is this:
1. I DID have other food allergies. Soy, dairy, eggs, and so on - a little laundry list of 'my favorite foods that I can now kiss goodbye.' Active Celiac disease can mask the symptoms, or keep the body from reacting to them as noticeably (as I understand it). And when you go off gluten, your body can kind of over-react to the other allergens. I also simply had some foods that made me feel crummy - no idea why, or how, but I was lucky enough to have a GI doc who is of the opinion that 'if it hurts you, don't eat it.' That's helped a lot.

2. Eating gluten free, I was getting more of things that I was allergic to, like sugar cane, which is in a lot of the gluten-free foods, in less processed form, so that more of the allergens are there to zap me.

3. Even though I never had a GI reaction to gluten, when I went off it, it turns out I am VERY sensitive to it. I get major GI reactions to gluten, ever since those first few days going off of gluten. :( Oddly enough, thinking back, I can remember the few times I had a stomach flu - and was likely off gluten as I didn't eat anything - it used to take me longer to recover than anyone in the family. I now wonder if I was starting to have these 'gluten reactions' but they toned back down after I continued to eat gluten. Who knows.

I didn't improve until I dropped the other foods that were bothering me and became exceptionally strict about avoiding any potential gluten. Even gluten free listed foods sometimes still have enough gluten to cause me difficulty. Also - dairy could be a big problem, if you still have that in your diet? The villi damage is in the same place that produces the enzyme to digest lactose, so that might be causing problems now, potentially, too.

To add to the asymptomatic celiac's stories, though, my daughter and father are both in that category. My father stayed relative asymptomatic. No real noticeable change after going gluten free, for a month or so, and then he'd get a slight case of the runs the day after getting gluten, but that's about it for him. However, at 8 years into this, he's starting to have problems and he's not certain why, so he's heading back to the GI doctor's to see what's going on.

My daughter is somewhere between myself and my father. She felt more tired and generally 'blech' after going gluten free, but no runs or other symptoms. We cut out the 8 major allergens from her diet, went to home-made unprocessed foods, and kept a food journal, and she improved a lot. We've now found a few foods that seem to bother her system, even though we'd never realized it before. She stays away from those AND gluten, and she's good.

I wish you good luck - hope you start to feel better soon!!
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#631018 Too Quick Of A Reaction?

Posted by on 11 August 2010 - 11:19 PM

I've usually heard 6 weeks, but I know there are differing opinions on it. Hopefully 2 months should be good!
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#630758 Too Much Time On My Hands...

Posted by on 10 August 2010 - 09:47 PM

Yeah...I hate all those darn glumercials around Christmastime. :D
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#630304 New To Forum Lots Of Questions

Posted by on 08 August 2010 - 11:22 PM

Just re: the surgery - it's a good idea to see if you can get any medication that will be needed 'post-surgery' beforehand. And it will, sadly, be up to you to stay on top of the gluten free status of them. Many pharmacies will not check if your drugs are gluten free, even if they have down that you are celiac or allergic to gluten. :o Many generics are automatically given out and are not gluten free, for example. The drug companies are not required to list non-active ingredients, so the pharmacists usually have to call the company during work hours to find the answer, and sometimes it can take a while to hear back.

A GREAT website is this: http://www.glutenfreedrugs.com/
It is kept up by a pharmacist and lists many gluten free prescription drugs.

Truly, I would urge to you check ahead of time, and make sure you have family or friends that double check everything you are given at the hospital, drugs and food included. I had surgery just last month and had a horrible time getting gluten free pain medication. We emerged from the hospital too late for the pharmacists to contact the east coast where the drug companies were. Not ONE of the pharmacies in the entire city had the known gluten free medication of the type I needed, so it had to be ordered, but it was the weekend so it took three days before I got pain medication I needed. I would not wish that on ANYONE, truly!

re: the food. It gets easier. Slowly, but it does. I think it was easiest in the beginning when we stuck to naturally gluten free stuff, like rice, veggies, fruits, and big chunks of meat. Gluten free soy sauce helped that immensely. :D

Wishing you good, good luck!!
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#630294 Red Lentils From The Bin

Posted by on 08 August 2010 - 10:17 PM

I've done that a few times, and the times it has turned out all right, I just checked the bins around it. If there was nothing with gluten nearby and it had no 'processed with wheat' issue, I have bought them without trouble.

But if it has gluten nearby, I worry that when the nearby bins are used, it might poof in the air and get in that area where the food comes out, you know? so I tend to avoid it at that point.
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#628774 Elimination Diet

Posted by on 03 August 2010 - 02:05 PM

So sorry you're feeling so bad! From what you said, nothing stands out hugely, but I'll see what I can contribute for your search for the answer!

1. You could be really sensitive to gluten and that's what's getting you. You were saying you've replaced your kitchen utensils and pans and such, yas? How severe have you restricted your gluten to things other than food? Gone through your cosmetics and shampoos and such to eliminate anything gluten that might touch your mouth? Any CC possibilities at home from gluten eating pets? Any construction going on near you (many things used during construction have gluten, like drywall, for ex). Some of the 'gluten free' grains can be contaminated with gluten during processing, so if you are really sensitive, some of those could have been setting you off, too. I'm a sensitive celiac and I react to most things that are supposed to be gluten-free, so it's definitely possible. The shampoo has gotten me when I rinse it off and it dripped in my mouth, the mouthwash has gotten me, the soap with gluten contaminated a plate once, best we can tell, and got me. :huh:

I've heard of people kissing someone and getting glutened. :o Oh, and as an aside - during a study, people had miserable reactions to gluten - felt awful - without major damage being done. I've wondered how that would translate into tests, you know? Like perhaps, as far as the tests were concerned, they would test 'gluten free,' but their bodies were still telling them that life sucked a lot, ya know?

2. I think you're on the right track on your post (following this) on ditching the soda. There's just so much stuff in it that could be potentially bad for you that I don't think your elimination diet has any real chance with that still in your diet, sad to say.

2. Re: soy and corn avoidance. Are you using iodized salt? That has corn contamination, so if you are trying to avoid corn, might be good to get some sea salt. White rice is sometimes corn contaminated too (they use a corn product to polish it, often), so it could be the rice is okay, and the corn is still the issue, possibly. Brown rice tends to be corn free, though. For your olive oil, what kind is it? Is it organic, from a reputable source? Was it processed with nuts or seeds (most oils are)? Sadly, in this recession, there have been reports of olive oil that has been tested and discovered to be soy oil with a dye and a couple things added. And if you happen to be sensitive to nuts or seeds, the oil might have enough to bother your body. Oh, also, for the corn? If you are using paper plates/paper cups, they often put corn starch in them to keep from sticking together, so it can get you there, too.

3. Have you looked at fructose malabsorption? I noticed you have a lot of foods that have higher levels of fructose in them, so that might be worth looking into to see if the foods might correlate? I don't recall that causing brain fog, but I've only researched it to a shallow level, sorry to say.

4. You could have problems with pesticides? Might help the diet to stick to organics for a couple weeks, just to make sure and rule that out a bit. Although if you are in the UK, I think it has stricter standards than we do here, so that might be less of an issue.

5. Also, it might be helpful for you to try and figure this out if you eat one set of foods for a day or two, and then switch to another set of foods for the next couple days. Not even salt or oil the same. That way, it might help narrow down the problem, if something you are eating is bothering you. You might be able to add a few foods in, too, if you did that, to see what has worked for you? Spacing stuff out has helped us trying to figure out what foods were messing with our family. We didn't eliminate much, just the 8 major allergens plus some family stuff, but it made a big difference.

6. Oh, the turkey! What kind of turkey are you eating? Whole pieces, or ground? Is it cut up at the butcher or at the factory? Does it have any retained water? If it's cut at the butcher, it can be contaminated with other meats, if you are sensitive enough. If it's ground, same potential issue. If it has retained water, that typically means it was brined in something and that's how much of the brine solution it's retaining. Which means that you might have something in there you react to, as well. Not likely, but possible (been there, done that, sigh). I ended up eating bison meat, which seems to be as 'hypoallergenic' as you can get with meats (so the hype goes). It's as low fat as chicken, but high in iron, so it's worked out well, aside from the cost. I've even been seeing small packages of it in the local grocery stores in the States, tucked away in the beef fridge section.

7. Re: grains - I react to all the grains, too, but have figured out that I don't react to 'non-grain' grains. Quinoa and amaranth are both not in the grass family with the other grains, as well as buckwheat, so they might be worth trying. You can order quinoa in bulk from ancient harvest, on-line, if that seems to work out.

So sorry this has been so bad for you! I had something similar, at least re: going gluten free and still feeling awful. I actually felt worse, couldn't believe it. But I had a great doctor who has helped me a lot. Said I was hyper-reacting to nearly everything, so we just cut my diet to the bone and I've been eating what I can, working on increasing my diet. Some tips he gave me, in case they help?
- he said celiacs tend to have more trouble with additives, preservatives, and dyes, more trouble with genetically modified food, more trouble with food allergies and sensitivities. All of these add up to bad soda pop, eh? ;)

Wishing you the best!!
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#626125 Assuming Some Foods Are Gluten Free

Posted by on 23 July 2010 - 04:26 PM

I don't tend to. I've learned the hard way that a visual inspection just can't tell where the gluten is.

Chopped fruit and corn chips aren't even safe, really. My in-laws, for ex, cut a loaf of bread and then cut up apples with the same knife and cutting board and contaminated it. The chips can be run on machines that run chips with gluten in the spices added to them. Gluten containing Flavors and malt and such can be in tons of items, from breads to salad dressings to salsas. At buffets, any spoon can be used in something with gluten and then in a gluten free food, or crumbs can fall into the gluten free food and contaminate it.

I react so dramatically that it's easy to tell when gluten has got somewhere, and I have been very shocked (and disappointed, honestly) at how easy it is to get gluten contamination. :(
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#625301 Gluten Free Grains Not So Gluten Free

Posted by on 20 July 2010 - 01:22 PM

Oh thank you so much for the detailed information! I have been wondering about Arrowhead Mills flours' safety with my kids a couple times. I will definitely be checking out these farms. Very much appreciated.

Do you grind all your own flours? If you do, would you have any advice on what types of mills/coffee grinders work for what grains? I could use any advice you could give. :)

I have found that making my own buckwheat flour in a coffee grinder works fairly well, compared to most grains. The only brand of buckwheat flour which hasn't glutened me is from Bouchard Family Farms. They have a facility dedicated to milling buckwheat, which they grow themselves. So no CC from transporting the grain.

All other flours I buy from Barry Farm, and so far so good. Last I tried, I can't use their gluten-free buckwheat though.

I've gotten glutened by every bag of flour I've tried from Arrowhead Mills. Took a while to track down what was getting me too. It's really disappointing when you cannot trust a gluten-free claim on a package.

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#625287 Gluten Free Grains Not So Gluten Free

Posted by on 20 July 2010 - 12:08 PM

Oh, do you have a good company that you get whole grains from? I can't use flour mixtures usually because I have problems with some non-gluten grains as well, but if you have some whole grains that were very safe for you, I would love to hear. Thank you for the info!
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#624930 Gluten Free Grains Not So Gluten Free

Posted by on 18 July 2010 - 11:30 PM

I know some really sensitive celiacs here have mentioned finding wheat in some of their gluten-free grains. Now a study released in June is bearing out their worries, big time:
gluten-free grains not so gluten-free

The pertinent information, I thought, was this, said re: gluten testing of a number of flours and grains:

"...The worst offenders included soy flour, which had 2,925 parts per million of gluten, sorghum flour, which was contaminated with 234 parts per million of gluten, and two different brands of millet flour, which contained up to 327 parts per million of gluten. Millet whole grain, buckwheat flour and white rice flour also contained detectable levels of gluten..."

No brand names were listed in the study itself, and only about 22 different flours/grains were tested, overall. But argh, how frustrating! Makes me worry all over again.

Time to finally buy those home gluten test kits. :(
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#624534 Elimination Diet - Help!

Posted by on 16 July 2010 - 03:35 PM

Whoops, just realized I misspoke on something I said! And I have no idea how to edit, so I'll just put it here!

1. Before you start, plan out your meals on a 3 day rotation, out of foods that are as close to 'made from scratch' as you can get. One, two, or three ingredients, max.

I meant to say that you want one,two, or three ingredients PER FOOD, max. I just realized like it seemed as though I was suggesting to have 1,2, or 3 ingredients a day. :rolleyes:

Someday, I'll speak properly, LOL.
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