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#1 of 18 Old 09-26-2012, 11:03 AM - Thread Starter
 
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I wouldn't doubt this has been posted before & apologize for my lack of ability to search through all the previous threads.  Hoping I can get some links to resources, either threads on Mothering, blogs, websites, whatever, on guidelines for gluten trials.

 

My biggest question, as I read labels within our house, is for a trial how strict should I be about avoiding foods that were packaged in a facility that also handles wheat/gluten products?  My very first label read was my bag of steel-cut oats, which DD2 and I have for breakfast pretty much every single morning.  And  of course packaged in a facility that also handles gluten products.  If we do have gluten sensitivity, wouldn't we see an effect by eliminating definite gluten sources & can make a decision on eliminating these types of products after we know for certain there is an issue?  Yes, I can find another source for this product without the possibility of gluten contamination, but when I can but a 3# bag from Costco for $4 and it costs me $4 for less than a pound at the co-op, I hate to unilaterally say I won't eat it any more without knowing.  Food costs are definitely an issue for us & I know our costs are going to go up at least short-term as I figure this out.  We can get a lot of the whole grain/organic products we enjoy from Costco for SO much cheaper than the co-op. . .I can already see that we are going to have to make some tough choices re. food - do I compromise on organic produce or meat so we can afford gluten-free products?  Agh.

 

So, anyhow, some background -

 

After several years of wondering, I am ready to do a trial of gluten free for at least my 2 DDs and myself.  I have a ton of minor symptoms (and a couple chronic major illnesses) that are on the list for gluten intolerance.  I have lifelong issues with eczema (controlled almost 100% by no longer using any chemicals on my skin, in our family's soaps, detergents, etc.), migraine headache, minor bowel issues (not really diarrhea, but urgency & frequent BMs. . . I basically never have a formed stool).  I was diagnosed hypothyroid about 10 years ago & am stable on a relatively low dose of thyroid.  Still have chronic hair loss.  Some other minor issues that are also possibilities (vitiligo, minor recurring vertigo).  But, main reason I haven't tried GF previously is all these conditions can be attributed to other causes.  It's all so vague!  I'm reluctant to overhaul my whole family's diet for vague reasons. 

 

So what's finally gotten me motivated to do a trial is that DD2 (4 years) has severe dental issues.  She has decay in most of her top teeth, despite good oral hygiene and our best efforts.  Reading about enamel defects, I am continuously seeing gluten intolerance as a potential cause.  Thing is, she has NO other symptoms.  But, I suppose she could be generally healthy enough & still getting enough anti-inflammatory factors through breastmilk to minimize/mask anything else.  And the dental issues are bad enough.  On the dental lists, I keep seeing things like canker sores & tonsillar "stones' linked to gluten (I have both chronically).  Also seeing migraines & abdominal migraines listed - DD1 has eczema, abdominal & traditional migraines, I have chronic migraines. 

 

So comments would be appreciate!

 

Thank


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#2 of 18 Old 09-26-2012, 11:33 AM
 
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Have you considered the possibility of Celiac disease?  If so , you should be tested BEFORE doing a gluten free trial.  Testing isn't accurate once on the GF diet.

 

As for cross contamination, testing shows that labels with that warning 80%+ of the time DOES have contamination.  The labeling itself is 100% voluntary.  So it really isn't that much help.  Oats are VERY OFTEN contaminated. People dx with Celiac are often advised to do NO oats at the beginning and only certified GF oats after 6 months to a year on the gluten free diet. The reason is that the harvesting and processing is mostly done with the same equipment as wheat so the possibility of cross contamination is very high.

 

The very best way to do a gluten trial is NO packaged/processed foods.  Whole food made from scratch.  It's a pain but if you are suspecting a gluten issue, it is the best way to figure it out.  

 

While this may not be what you want to hear, I hope it helps.

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#3 of 18 Old 09-26-2012, 11:51 AM - Thread Starter
 
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Thanks.  I was tested for Celiac about 1 1/2 years ago.  IgA total levels were in the middle of the normal range, tTG Ab (IgA) & gliadin Ab (also IgA) both negative.  IgG wasn't tested. 

 

So where do you get ANYTHING that's not packaged?  I can get things in bulk at the co-op, but that of course is packaged too, just in bigger bags ;-)  Everything is going to be packaged unless I know a local farmer.  That just doesn't sound realistic to me.  Am I missing something?  No grains at all?  What about rice (also packaged)? 

 

We are never going to get away from at least some processed foods.  We already eat a minimal amount, but with 3 homeschooled kids, a house of animals, and 2 working parents, cooking everything from scratch simply is not going to happen.  Not ideal, I know, and part of the reason I've avoided this before, because I know my reality.  I also really don't like cooking, the thought of spending an hour or two in the kitchen on a regular basis is just horrifying to me.  And what do people do with their kids when they spend hours preparing foods?   This is why we all need to live in a village, so food chores & childcare can be SHARED!! 

 

We already do fresh fruits & veggies from our CSA or coop, mostly eat raw since no one but me likes cooked veggies.  I make beans in huge batches & freeze in useful portions for cooking.  But we eat a fair amount of pasta (I just of course bought a case of organic wheat pasta at the coop 40% off sale), which is processed . . . and yes, I know one can make their own, but then you're using processed flour.  I don't eat meat beyond fish periodically (when fish I will eat due to environmental factors is on sale) & eggs from our backyard chickens; kids & DH do, but minimal because I won't cook it ;-)  I'm already trying to make this as painfree as possible, so planning on buying gluten-free bagels from a local bakery since both DDs love bagels, trying to find a good gluten-free bread that they will eat, wondering about cereal.. . What do people eat for breakfast if you don't do processed foods?  My kids are addicted to cereals (thanks, DH, I can't stand cold cereal personally). 

 

Sheesh, the more I think about the more I wonder if it is truly worth it. . .


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#4 of 18 Old 09-26-2012, 12:11 PM
 
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Oh no, by packaged I mean things like cookies and crackers and stuff.  Rice is fine (though there are some reports on the recently that have me a bit worried).  Beans are great.  Getting things from bulk  bins is usually frowned upon because people aren't always careful about what they use in each bucket.  

 

 

I use packaged foods that I have vetted and trust.  Some brands are better than others. My kids to pancakes (Cherrybrook Kitches GF mix) and sausage or ham.  They aren't big cereal in the morning kids but will eat some for snacks here and there.  If there are specifics you are looking for I would be willing to help ya out if I can. 

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#5 of 18 Old 09-26-2012, 02:13 PM
 
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I'm currently doing a gluten free trial and have made GF muffins for breakfast, and we also eat eggs and GF cereal.  EnviroKids makes several gluten-free cereals and chewy bars, and my kids love them.

 

My grocery bill has gone up a lot, but we're not eating out as much, so that helps.  For lunches, I send my son to school with some lunch meat, gluten-free pretzels or Veggie Booty, fruit, peanut butter, raisins, and a chewy bar.  Dinners have been easy - a meat and veggie, or baked potatoes, GF chili, salad, and one night we had bacon and eggs.  

 

Snacks are the hardest around here because my kids eat a ton of snacks, but they love fruit, so we just have a lot of that on hand.  We're not eating pasta, but we've had rice noodles.

 

I don't know if you have any around you, but I shop at Sprout's, and they carry a ton of GF foods.


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#6 of 18 Old 09-27-2012, 07:51 AM
 
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Go for the GF trial--you can do it!!

 

I've drastically reduced the gluten in my household. We don't have gluten intolerance (that I know of), but I'm concerned of gluten damaging the gut. We don't need any extra gut damage, now do we?

 

So, I shop at Super Walmart. Yeah, I know. But, it's in the nearest town, which is a 20-25 minute drive.  I shop there, unless I'm going to Harris Teeter in the next town over (40-45 min away). Whole Foods is an hour away, so I only go there when I'm in the area.

 

Anyway lol, Walmart carries a lot of GF and organic food. There is a whole GF section near the baking aisle, and I've tried a bunch of the products. I enjoy making pancakes on special mornings, and I've tried several of the GF mixes. My favorite is Arrowhead Mills GF baking mix, which can be used to make much more than pancakes.

 

You like oatmeal? Well, there is an organic Rice grits cereal called "Rice and Shine", and it's become my oatmeal replacement. It has the texture of grits, and you can make it sweet or salty, it just depends on what you add. I add organic raw coconut oil, cinnamon, and a sweetener like honey or coconut sugar. You can add to it whatever you would add to your oatmeal--raisins, maple syrup, etc. My daughter loves it!

 

Anyway, find a store with GF products and load up! There are a lot of prepackaged GF foods available. I even found our local gas station Sheetz carries GF snack bars. The world is catching on! Also, if your store does not carry anything GF or organic, you can speak with the manager.


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#7 of 18 Old 09-28-2012, 07:50 AM
 
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I recently eliminated gluten from my diet and my eczema (which I have suffered with for at least 7 years) has completely gone away.  So many other things have gotten better.  I have more energy, less headaches, my nails grow prettier, my immune system is stronger, and my menstrual cycle has become lighter.  I am so happy with my decision to go GF and I encourage everyone to try it for a month if you have any health concerns. 

 

Can anyone recommend an ORGANIC gluten free all-purpose flour to use for the upcoming holiday baking?

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#8 of 18 Old 09-28-2012, 08:04 AM
 
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I recently eliminated gluten from my diet and my eczema (which I have suffered with for at least 7 years) has completely gone away.  So many other things have gotten better.  I have more energy, less headaches, my nails grow prettier, my immune system is stronger, and my menstrual cycle has become lighter.  I am so happy with my decision to go GF and I encourage everyone to try it for a month if you have any health concerns. 

 

Can anyone recommend an ORGANIC gluten free all-purpose flour to use for the upcoming holiday baking?

 

How long did it take for your symptoms to go away?  It's been 2.5 weeks here and I haven't seen any change yet, except my period was a little bit lighter.  I'm giving it a month and hope to get some relief soon!


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#9 of 18 Old 09-29-2012, 07:32 AM
 
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I noticed a minor difference with my eczema within a couple weeks.  But it takes about a month for my eczema to completely heal.  It took about two months for my body to feel "normal".  Maybe it depends how long and how much gluten you were consuming and when the onset of the allergy started to determine how much it needs to detox.  I also did a 5-day nutritive cleanse by Young Living and I've been continuously cleansing my liver.

 

Because I didn't originally know what food was causing my symptoms, I went on a candida diet (only meats and veggies) for about two weeks and then slowly started to incorporate foods back into my diet.  When I ate a tortilla, I realized my problem was gluten!  

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#10 of 18 Old 10-03-2012, 05:15 AM
 
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Sheesh, the more I think about the more I wonder if it is truly worth it. . .

 

It's been 8 months since we went strictly gluten free.  It's worth every single, healthy, happy moment too, even though my workload doubled initially.  I am celiac, DD is gluten intolerant and allergic to milk and soy.  SInce the change, DD is healthier, I am very very healthy and I am finally pregnant again.  There is no easy way to go gluten free.  Well, you could come live where I live, and then you would find out how hard it is to eat anything here other then chicken, pork and fish with fresh veges and fruit.  That is essentially our diet.  We get some limited products shipped in once a month, but that's it.  You would be surprised at how fast a fresh meal comes together.  We shop for fresh meat and veges/fruit twice a week and keep some staples (rice, GF pasta, other GF grains, GF bread) on hand.  We make 3 meals a day, 7 days a week and DH and I split the workload.  It's not easy, believe me, especially when we have deadlines and stress.  Going out to eat is impossible here because they don't understand cross contamination.  I've been sick every single time.  

 

Our food bill has gone DOWN in the most expensive city in the world (Tokyo) because we are not relying on pre-made foods.

 

The cheap way to do GF is decide on a set meal plan for your week using mostly fresh meat, veges and fruit and making enough to use some food later that week.  For instance, when I first went gluten free, I was on all veges, fruit and nuts for a month.  That's all.  I would eat the same thing for every meal (fruit and nuts for breakfast, avacados for lunch, etc).  I was so sick before going GF, I don't think I could have handled any complicated digestion of meats or beans.  It was such a relief.  It took months of simple foods, no beans, and little meat to get my intestinal track up to par.  Now I cook 4-6 chicken breasts once a week in the oven, and then 2-4 later in the week and these are used for dinners and school lunches.  The rest of the time, we cook pork chops, and sometimes beef for dinner.  But our major protein is chicken.  It takes time and effort to figure out what will work for you, but it really is worth it.  You would be surprised how many ways you can serve a broiled or roasted chicken.  I was truly shocked, but it just took some extra brain power and creativity and no tv for a month or 2 (and we never went back to the TV, so that's more money saved).  DD's lunches are usually chicken sliced and she likes various condiments on them, (changes them daily) carrot sticks, hummus, prunes or raisins, GF pretzels (one of the staple items we buy once a month), and/or peanut or almond butter on carrots or GF crackers (if we have them), grapes, roasted chickpeas, hardboiled eggs and cheese.  She mixes these up and picks what she wants, she is only required to have a protein (chicken or eggs) and vege but usually she picks 1-2 veges and 1-2 fruits.  We don't have a large pantry, or even a small pantry.  We have 2 cabinets.  By the end of a month the shelves are bare because we eat everything we buy.  No food goes to waste.  Our freezer is tiny.  We don't have the space to store food so we don't store it.  And we don't waste.  Our food bill has been cut in half since going to this meal plan 4 months ago and that's while moving to Tokyo from Boston where food is also not cheap, but certainly cheaper then Tokyo!

 

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How long did it take for your symptoms to go away?  It's been 2.5 weeks here and I haven't seen any change yet, except my period was a little bit lighter.  I'm giving it a month and hope to get some relief soon!

  It also took quite some time for my symptoms to go away (celiac here).  But the cramping/diaherrea/constipation went away immediately.  


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#11 of 18 Old 10-15-2012, 06:48 AM
 
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I had chronic health problems for a year with no answer from conventional medicine except IBS. (also had really bad acne, fatigue, anemia, and a miscarriage). Out of desperation I started fiddling with my diet and noticed a huge improvement with a gluten elimination.  I followed the suggestions of this website: 

 

 

http://wholelifenutrition.net/elimination-diet

 

Really strict, but it kind of kept it simple for me. Basically I ate roasted vegetables with a "safe" grain and some beans for about 2 months. It was boring, but it satiated my hunger (which was out of control, even as I lost 35 pounds in a year). We're mostly vegetarians, but I ended up eating a little meat here and there. Chicken, lamb and salmon.

 

Good luck. Digestive problems are terrible to deal with and I found it really difficult to navigate the medical system for answers.

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#12 of 18 Old 10-20-2012, 01:18 PM
 
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My daughter is 11years old and was diagnosed almost 3 years ago. I've been hearing alot of people going on a gluten free trial after being tested negative for celiac. Maybe you're gluten intolerant/sensitive. Has your doctor mention this to you before? The problem is if you continue this gluten free diet, you'll always test negative for celiac which means you'll never know if you have it or not. Maybe you can get genetic testing done to see if you carry the gene and that can help you figure things out. The difference between knowing you have celiac and not knowing can save your life. Because when you have celiac like my daughter does, gluten is a poison to her body and cross-contamination can set her back 6 months of healing. Gluten in her body can cause many more illnesses, osteoperosis, chron's disease, and whole lot of other problems for her. So, it's really best for you to find out first if you have it then to live without knowing. I beleive the only way to do this is, if you don't get a celiac diagnosis than treat your body as if you do have celiac. Which means eating a strict  guten-free diet and getting the necessary vitamins that celiac patients need to stay healthy.

 

check out my blog: www.glutenfreealie.com

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#13 of 18 Old 11-01-2012, 09:18 AM
 
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Going gluten free can be difficult at first. Problem with traditional testing is that the tets only look for Celiac and most of the time they  are negative. Even biopsies are not true test results because someone can go for years with negative biopsies and then all of a sudden it seems like 10 years later the byopsy is positive because the person continued to eat gluten for all that time.

 

The problem is that today all grains are genetically modified and contain much more gluten than decades and decades ago. Also gluten grains are used as filler in so many things that we don;t evan know it, like candies and medicines.

 

Also all grains contain some gluten and not just wheat, rye, barley and some oats.  All grains by their very nature contain gluten. So to be true gluten free one needs to be grain free.

 

All three of my kids have been affected in different ways by the gluten.  DD (4) had dental enamel issues, DD (3) had recurrent MRSA infections and DS (21 months) had failure to thrive and endocrine systems issues just after he turned 1. I have Psoriasis and Hypothyroidism.  There are over 200 medical conditions that could be gluten sensitivity related. DS test for Celiac came up negative, but I took him off gluten anyway and within one month all his endocrine blood tests came back normal.

 

I ended up having all of us genetically test for gluten sensitivity genes and we all tested positive. Genetic Testing is the only definitive test that is 100% accurate as to whether one might be haveing gluten sensitivity related issues.

 

With gluten issues being so common today and traditional medicine being so quick to jump to meds to mask symptoms of diseas I am studying to be a Holistic Health Coach that specializes in hidden gluten sensitivity issues.

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#14 of 18 Old 07-17-2013, 10:19 AM
 
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Not sure if you're all still around, but ALM0612, what is the name of the genetic test?  I'm considering asking my doctor for it and unless I know a specific test, he'll have no idea what I'm asking.

 

CheriK, what did you end up doing?  I feel like I'm in the same boat as you.  I'm considering it...life might get better...but the whole idea sounds exhausting and frustrating and who wants that?!  :P

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#15 of 18 Old 07-17-2013, 04:51 PM - Thread Starter
 
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Hi Folks,

 

Thanks for all the comments & sharing your experiences. 

 

I was tested for celiac several years ago (all negative/normal), have looked into genetic testing but the cost is prohibitive.  Plus, I'm not sure why we'd need to have a test.  Either eliminating gluten helps w/ our health issues, in which case we're going to continue to avoid it no matter what a test says (just like eliminating it despite not having celiac disease), or eliminating it has no noticeable effect, in which case we won't bother.  I do agree that what we eat today is much less genetically diverse than what even our recent ancestors ate, and basically lacks any diversity when compared to what our bodies evolved with, add GMO & pesticides & processing on top of that, and it's amazing that most people don't have worse chronic health problems. 

 

I did eliminate gluten, just from my own diet, about 3 months ago.  For me, the major consideration was migraine headaches.  I was at the point of having a migraine for 5 days every month with my period, in addition to 2-3 other migraines (which always last at least 24 hours, sometimes 2-3 days. . .you do the math ;-).  Most of the time I could pinpoint triggers (hormones, obviously, weather, allergies, dehydration, too much sun exposure, chemical/strong odors. . .), but not always.  Beyond estrogen-containing birth control, which I don't want to take for a # of reasons, I was out of things to try. 

 

It has helped TREMENDOUSLY for migraines.  I have had a very mild, one-day migraine w/ my period for the last 3 months (I was only GF for about 2 weeks the first month).  I have still had 1-2 migraines a month, but again much less severe than usual for me.  And much more responsive to my medications.  So from that aspect, it's been great.

 

I have noticed absolutely no other effects from eliminating gluten - bowel issues, thyroid, eczema, hair loss. . . nothing else has changed.  My plan is to stay GF for about 6 months, then try various amounts of gluten to see what my body's tolerance is.  Migraine triggers are cumulative, so I suspect I can eat small amounts, especially if other triggers aren't present.  I would like, for instance, to be able to eat something w/ soy sauce at a restaurant without stressing about gluten.  Or go to a potluck and not have to worry about every single dish containing flour to thicken the sauce.  It's a big pain, especially because I'm vegetarian & have several other foods I need to avoid for migraines, so sometimes I do feel like there's nothing I can safely eat.  Most of the vegetarian soy "meat" substitutes contain gluten, by the way.

 

I am not being as concerned about it as some folks have mentioned.  I don't have celiac, after all.  I do buy foods from bulk bins, I trust that if something says "GF" on the label, it's low enough to not worry about, etc.  Our local food coop has a lot of GF options (all more expensive than the alternative, of course), so I can always find a substitute, but it is costing more.  That's probably the main reason we haven't made this a family-wide enterprise; with 5 of us, no one who really likes cooking, and a limited budget, I just can't handle that right now.  I will continue to incorporate more GF alternatives as we try them & find ones that everyone likes, and that don't cost more than we can pay.  We often shop at Costco (Northern California) and found that one of the Sacramento area Costcos sells a LOT of GF products, including Bob's Red Mill organic flours (the GF flour substitute, and their almond meal which is YUMMY). 

 

So, yes, I think doing the trial was worth it.  I will continue to avoid gluten, although hopefully not to the extreme I'm currently doing, but if that's what I need for the reduction in migraines, then I will.  I do want to decrease gluten consumption in the rest of my family, but am unlikely to remove it completely from our family diet.

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#16 of 18 Old 08-13-2013, 08:05 PM
 
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My daughter is 11years old and was diagnosed almost 3 years ago. I've been hearing alot of people going on a gluten free trial after being tested negative for celiac. Maybe you're gluten intolerant/sensitive. Has your doctor mention this to you before? The problem is if you continue this gluten free diet, you'll always test negative for celiac which means you'll never know if you have it or not. Maybe you can get genetic testing done to see if you carry the gene and that can help you figure things out. The difference between knowing you have celiac and not knowing can save your life. Because when you have celiac like my daughter does, gluten is a poison to her body and cross-contamination can set her back 6 months of healing. Gluten in her body can cause many more illnesses, osteoperosis, chron's disease, and whole lot of other problems for her. So, it's really best for you to find out first if you have it then to live without knowing. I beleive the only way to do this is, if you don't get a celiac diagnosis than treat your body as if you do have celiac. Which means eating a strict  guten-free diet and getting the necessary vitamins that celiac patients need to stay healthy.

 

check out my blog: www.glutenfreealie.com

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I do carry the DQ2--celiac gene I recently found out, and a few years ago I went on the Eat to live Diet, after about 4 months I started having cheat days and eating out and I got extremely sick, nausea, brain fog, fatigue, dizziness. So I was terrified to try to go gluten free again, but in my heart I know that I probably have gluten issues, which is why my body reacted so violently when I re-introduced wheat. Since that incident I haven't had any 'episodes' while I am eating plenty of gluten. But I do feel 'off', I sometimes have violent mood swings and am tired especially if it is raining outside if affects me alot. So not sure my point, other than just wondering if I should take my DQ2 gene seriously and at least try to limit gluten?


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#17 of 18 Old 10-15-2013, 11:30 AM
 
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I went gluten free a few years ago after being diagnosed with Ulcerative Colitis. It was a challenge at first, but I felt so much better - definitely a built in incentive for me. After a few months, I became extremely bored with the recipes. Then I discovered glutenfreefamily.net and it opened up a whole new way to discover new gluten free foods. Yes, it costs money, but I swear by it. Now, my entire family is gluten free which provides a great built in support group.


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#18 of 18 Old 10-30-2013, 05:21 PM
 
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If I were you with all of the symptoms that you get when you eat gluten and plus you are positive for the celiac gene, I would live my life as a celiac which means eating a strict gluten free diet and making sure of no cross contamination as well. Because any little bit of gluten that you digest can not only give you symptoms but it can cause more problems for you internally. People that just go gluten-free without making sure they have celiac or don't do the genetic testing (I'm glad you did the testing) can harm their body each time they ingest the gluten and it takes generally 6 months for your body to heal from it. Our bodies are designed to warn us when something is just not right so I hope that you start feeling better and eating a strict gluten free diet ( I would tell yourself you have celiac so it will be easier for you to start living a celiac lifestyle so you don't have cheat days). In the beginning it is overwhelming but I promise you, it does get better. Good luck and check out my blog: www.glutenfreealie.com

Let me know if you need any help.:thumb:blog

What helped for me as well is to join Twitter there is a wonderful supportive gluten free/celiac group. I learned a lot there and we share recipes and concerns etc.

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