Attempting to go Gluten Free... Help!

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  • dayone987
    dayone987 Posts: 645 Member
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    I went gluten free about 6 months ago mostly to deal with acid reflux that went on for years. I did see a GI specialist to rule out H. Pylori as the cause and then was prescribed medication that was fairly expensive and became less effective the longer I used it.

    For the first few months I gave up bread, but I really missed it so do use a gluten free bread. Glutino has several varieties (cinnamon raisin, cheese, white) which only have 70-80 calories a slice and tastes great (imo).

    Overall, I'd say my symptoms have decreased by about 90%. After a while it becomes easier to deal with although it does require some preplanning. Potatoes and rice though are easy substitutes.
  • DailyGroomer
    DailyGroomer Posts: 93 Member
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    If you are just going to switch from unhealthy processed wheat products to "gluten free" baked goods, processed foods, etc I don't think you'll get the results you are hoping for. Yes, my life is much improved since I quit wheat, but avoiding processed foods in general have been the big win.

    I've been wheat free (grain free except for very rare organic popcorn) for over two years. The health benefits have been absolutely amazing for both me and my child. I eat: meat, fat, eggs, avocado, coconut, veggies, and limited fruit and nuts. I don't make gluten free baked goods except for special occasions.

    I've only had 3 GF replacements in the past 6 days. I am not going to eat processed foods all the time and am overall eating much healthier because I have to make my own food to avoid gluten. In order for me to not want to jump off the roof because I haven't had bread, I think it's quite alright to find some replacements here and there for the transition. ALmost every meal I ate contained gluten of some sort.

    Since I have cut it out and am feeling a million times better I am almost certain that it is a gluten sensitivity that I have.

    Once again for money/health insurance and time constraints I am choosing the elimination diet and not getting tested. Doctors have NEVER done anything for me in the past.
  • xnikkilorraine
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    My boyfriend's Aunt is a celiac. She was diagnosed just over a year ago and has been gluten free since. The only thing I would suggest is to keep an eye on your iron levels as gluten helps to absorb iron into your body. She has to go for blood transfusions now because her iron levels keep falling too low.

    She makes a lot of her own gluten free cakes and bread now. There are quite a lot of recipes online for it so you could give that a go?
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
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    My boyfriend's Aunt is a celiac. She was diagnosed just over a year ago and has been gluten free since. The only thing I would suggest is to keep an eye on your iron levels as gluten helps to absorb iron into your body. She has to go for blood transfusions now because her iron levels keep falling too low.

    She makes a lot of her own gluten free cakes and bread now. There are quite a lot of recipes online for it so you could give that a go?

    Do you have citations for that? I've only ever heard/seen basically the opposite -- that grains inhibit the absorption of iron (though not because of the gluten, but rather the phytate content, which binds to the iron and prevents the body from absorbing it). Most of what I've seen for "iron deficiency after going gluten free" is due to a) noticed deficiency caused by the malabsorption of nutrients due to a damaged small intestine from Celiac (where nutrients are absorbed), and/or b) lower overall iron intake, due to replacing iron-fortified wheat products with non-fortified non-wheat products (this is especially problematic when A is also the case, because most Celiacs are anemic to begin with).

    I'm actually no longer anemic in part because I went gluten free. Prior to that, at one point, I actually tracked my iron intake and despite taking in something like 2-4x the RDA in iron from food (and mostly heme iron, which is the most bioavailable), I was still bordering "need transfusions" level anemia.

    I went from that to not even needing supplements by doing two things -- cutting out gluten grains (and all grains for the most part, though I do eat rice and corn on occasion), and cutting severely down on dairy. I did these two things separately, and when one is back for a length of time, I start having problems again.

    As I mentioned earlier, phytates inhibit nutrient absorption, so cutting out the largest source of phytates in my diet meant that my body could absorb the nutrients from the other foods I was eating (and replacing those grain-based foods that were once staples with vegetables has also helped in increasing the nutrient content of my diet in general, which doesn't hurt).

    Additionally, calcium inhibits iron absorption, as well, while vitamin C improves it. I'm a big milk fan. I used to go through a gallon in as little as about 3-4 days by myself. That was in addition to a yogurt cup or two a day, probably some cheese as part of my meal, and so on. A cup of milk has a little over 300mg of calcium in it, which is enough to interfere with iron absorption. Considering that "a glass" is generally 12-16oz, that means 450-600mg of calcium interfering with just about any amount of iron consumed in the meal with it. So, I stopped drinking milk all but entirely (I still drink it sometimes, but it's more like once every few weeks instead of a few times a day or even once every day), and generally only eat the lower-calcium forms of dairy, such as cream and butter.

    And no, I don't worry about consuming too little calcium. Like all things, more isn't necessarily better, and there's evidence that not only do we not need 1,200mg or more of calcium a day (even as postmenopausal women), but rather that 600-1,000mg is a reasonable and sufficient range ( http://www.health.harvard.edu/fhg/updates/Do-we-really-need-all-that-calcium.shtml ). This is easily attainable through the green vegetables and lower-calcium dairy sources that I do eat. As an added bonus, a lot of the vegetables that contain a lot of calcium, also contain a fair amount of vitamin C, which helps counteract the effects calcium has on iron absorption.

    (Full disclosure - iron was not the only reason I don't consume much milk, so cutting it out as much as I did may not be necessary if the only reason for doing so is dealing with anemia. However, there is evidence that casein is cross-reactive with gluten, so those with Celiac may do well cutting out dairy, anyway.)
  • missinmybiscuits
    missinmybiscuits Posts: 100 Member
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    My boyfriend's Aunt is a celiac. She was diagnosed just over a year ago and has been gluten free since. The only thing I would suggest is to keep an eye on your iron levels as gluten helps to absorb iron into your body. She has to go for blood transfusions now because her iron levels keep falling too low.

    She makes a lot of her own gluten free cakes and bread now. There are quite a lot of recipes online for it so you could give that a go?

    I'm anemic and it worsens when I get "glutened" (accidentally consume something that was cross-contaminated, usually in a restaurant) - iron deficiencies are caused by gut damage, which is generally caused by grains in celiac. My bet is that your Aunt actually has an additional allergy that is still causing gut damage, because if she had a healthy intestinal lining, a gluten-free diet would not impact iron levels negatively. If she wants good, scientific information on this, tell her to check out Sarah Ballentine's "The Paleo Approach" -- it's an amazing resource for those of us who are vitamin deficient!
  • Navtendon
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    So I recently discovered that about 95% of my health issues match the symptoms of gluten sensitivity. I am going to attempt and try my hardest to go gluten free. However, this is coming from a girl who loves bread, and sugar in any form of bagel, cake, cookie, etc so from my current standpoint it seems almost impossible.

    Does anyone have any tips to help me out with this? SHould I get a breadmaker and make my own treats?

    Any success stories would help me in this journey as well.

    Day 1 & counting!

    Sure, get tested. Your doctor should do a test called tissue transglutaminase immunoglobulin at least. If it's positive, you have celiac. They may go on with further testing with genetic markers (HLA DQ2 etc) but those are often unnecessary. So if this happens, yeah, go gluten free. Obviously.

    If it's negative for celiac, you have two choices:

    1) Join the camp of people who don't believe in non-celiac gluten sensitivity and just keep doing as you are doing. And most likely you will just have to "suck it up" for the rest of your days.

    2) Join the camp of people who believe in non-celiac gluten sensitivity and get off gluten. The first week without bread etc is hard. After that, life is amazing. I've been gluten free by choice (gasp) for 2 years.... without being celiac (gasp again!) It's actually very easy after the first week. I actually find that food never tasted better.

    This isn't to single out gluten as the only thing to watch out for. It's not just the gluten that is cause for concern within wheat.... other compounds within wheat such as amylopectin A and wheat germ agglutinen etc within wheat can also be culprits in the big picture.

    Anyways, you want a success story, so ok. I used to eat all kinds of terrible processed foods and was obese, had other medical conditions too. Nothing I did, including "eating less and exercising more" would reduce the weight. I changed to a primal eating/exercising type of lifestyle and basically am now within "normal" for BMI (BMI is not the best indicator, but I'm just trying to get point across) with lean muscle mass in spades. And various medical conditions resolved. Best decision I ever made.

    Regarding your comments about loving bread and pasta etc. You just think you love those things. Don't get a breadmaker. Just get off it. And don't bother with "gluten-free" sustitutes. They are even worse in many ways. Just eat real foods with one ingredient. The first week is hard because you essentially go through a "withdrawal". After that it's a piece of cake.... without the piece of cake.
  • Navtendon
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    So I recently discovered that about 95% of my health issues match the symptoms of gluten sensitivity. I am going to attempt and try my hardest to go gluten free. However, this is coming from a girl who loves bread, and sugar in any form of bagel, cake, cookie, etc so from my current standpoint it seems almost impossible.

    Does anyone have any tips to help me out with this? SHould I get a breadmaker and make my own treats?

    Any success stories would help me in this journey as well.

    Day 1 & counting!

    Sure, get tested. Your doctor should do a test called tissue transglutaminase immunoglobulin at least. If it's positive, you have celiac. They may go on with further testing with genetic markers (HLA DQ2 etc) but those are often unnecessary. So if this happens, yeah, go gluten free. Obviously.

    If it's negative for celiac, you have two choices:

    1) Join the camp of people who don't believe in non-celiac gluten sensitivity and just keep doing as you are doing. And most likely you will just have to "suck it up" for the rest of your days.

    2) Join the camp of people who believe in non-celiac gluten sensitivity and get off gluten. The first week without bread etc is hard. After that, life is amazing. I've been gluten free by choice (gasp) for 2 years.... without being celiac (gasp again!) or even symptomatically gluten sensitive (double gasp!!!) It's actually very easy after the first week. I actually find that food never tasted better.

    This isn't to single out gluten as the only thing to watch out for. It's not just the gluten that is cause for concern within wheat.... other compounds within wheat such as amylopectin A and wheat germ agglutinen etc within wheat can also be culprits in the big picture.

    Anyways, you want a success story, so ok. I used to eat all kinds of terrible processed foods and was obese, had other medical conditions too. Nothing I did, including "eating less and exercising more" would reduce the weight. I changed to a primal eating/exercising type of lifestyle and basically am now within "normal" for BMI (BMI is not the best indicator, but I'm just trying to get point across) with lean muscle mass in spades. And various medical conditions resolved. Best decision I ever made.

    Regarding your comments about loving bread and pasta etc. You just think you love those things. Don't get a breadmaker. Just get off bread. And don't bother with "gluten-free" sustitutes. They are even worse in many ways. Just eat real foods with one ingredient. The first week is hard because you essentially go through a "withdrawal". After that it's a piece of cake.... without the piece of cake.
  • PrincessMissDee
    PrincessMissDee Posts: 183 Member
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    If you haven't been tested what makes you think it's a gluten sensitivity? Just curious. It could likely be something else, and if you cut out gluten for a substantial amount of time and it turns out that wasn't the problem, when you add it back you could have created a problem. Only 1% of the population has celiac disease.

    ALL OF THIS. I cut gluten for a few months a few years back but as soon as my test results were back and confirmed I wasn't coeliac I was told to not cut it out at all as that would create a problem. Cutting out gluten completely is HARD as you don't realise how many foods have it in. I'd maybe cut down a little for now and see how you feel but get tested as soon as you can.

    It's an auto-immune disease, it's not worth not being sure.
  • Navtendon
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    There is no such thing as "gluten-sensitivity". You either have celiac disease or you don't.

    LOL. This made my day.
  • Navtendon
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    So I recently discovered that about 95% of my health issues match the symptoms of gluten sensitivity.
    What about the other 5%?

    I once had symptoms that matched bubonic plague. I went to the Doctor and guess what I didn't have it. Don't self diagnose go and see a doctor it could be something totally different that if left un diagnosed could cause problems

    Celiac disease is something a doctor can diagnose most of the time, because there are concrete objective criteria (lab tests, biopsy, and even imaging). Gluten sensitivity on the other hand does not have any established medical criteria for doctors to go by. It depends on the doctor. Some choose to be informed about it. Others choose not to be informed and are convinced that it doesn't exist..
  • MissHolidayGolightly
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    This is correct. The test for Celiac's will only be positive if you are actively having episodes and in the height of your problems. There are many more false negatives than positives, unfortunately, for the disease. Even if there is "no such thing" as gluten sensitivity as some scientific studies suggest, what is wrong with mind over matter? If the patient feels better after cutting gluten, what's the difference if they had a sensitivity to it or if it was a placebo affect? Try it, and go from there. Keeping in mind all the calories that go into ones mouth, there isn't a problem with cutting out gluten. Since we've got to think about what we're eating every meal anyway, what's the difference in asking if there is gluten in the meal or not? Doctors are not the end all be all especially with this possible problem. It is very hard to pinpoint, and ultimately could prove to be falsely negative. With bad insurance, I don't think it is worth the money if you're willing to experiment on this and live with some discomfort for a little bit until you find what you are sensitive to.

    Edit: (Don't know why the quotes aren't taking)

    The problem with mind over matter is that the patient could be masking a different and/or greater issue and, consequently, will not be getting treated for it. This is dangerous territory.
  • jc_0324
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    OP, a blood test doesn't necessarily mean you are not gluten intolerant. I do not have Celiac disease but yet omitting gluten from my diet has been very helpful with my digestion issues.

    The gluten free products that are out there now are very good. Udi's bread is my favorite but I have to toast it. Udi's has chocolate chip muffins and they are yummy!

    Nearly every restaurant has a gf selection and I have become so accustomed to eating burgers, chicken, etc.. without bread. As a matter of fact, I don't even ask for gf bread/bun. You have the taste of the meat with less calories and I have found it to be so much more delicious.

    Good luck!
  • scottwv2012
    scottwv2012 Posts: 5 Member
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    Not true, you can be allergic to the gluten protein itself.
  • mdezzy
    mdezzy Posts: 11 Member
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    Yes but there is a big difference in having celiac disease which is the extreme and a gluten sensitivity. I went through testing to see what was causing inflammation in my body and found I am gluten sensitive. Meaning I won't die if I eat gluten but if I eat it, especially regularly, my joints will ache and I definitely notice it. Many people are gluten sensitive.
  • mdezzy
    mdezzy Posts: 11 Member
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    Again, celiac disease is very different than having a gluten sensitivity!
  • geneticsteacher
    geneticsteacher Posts: 623 Member
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    There is no such thing as "gluten-sensitivity". You either have celiac disease or you don't.

    False. Just because you read some pop article about its non-existence doesn't mean people can't be allergic or sensitive to wheat, barley or other grains and not have celiac. It's very hard to determine non-celiac gluten allergy, but if it makes someone's health improve to cut out gluten or grains, then there is no reason to discourage someone from doing that. As someone with Celiac, it makes me MENTAL to think that people are discounting possible allergies/sensitivities just because some stupid celebrities said they weren't real. There is plenty of medical literature to support non-celiac gluten allergy/sensitivity if you look in respected journals. Stop reading HuffPost.

    If you followed the link provided, it was an explanation of a peer-reviewed article in the medical journal Gastroenterology.
  • Navtendon
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    Celiac disease isn't something to play with. If you have it, you need to know. My niece was diagnosed by stomach biopsy when the doctors were doing a series of GI tests trying to figure out what the heck was wrong with her. She has had many, many health issues -- including thyroid cancer -- which the doctors believe are related to her celiac disease. Also, if you think you may have it and have children, they should be tested immediately. One of my niece's sons has it and the other doesn't. The sooner a person/child with celiac disease removes gluten from their diet, the less risk of long-term complications.

    I don't doubt that there are some non-celiac people who feel better when they avoid wheat, etc., and more power to them. But those who avoid gluten just because it's trendy really raise my ire. They're the ones who make it dangerous for real celiacs to eat in restaurants, etc. I can't tell you how many times I've seen a server's eyes glaze over when my niece says she and her son can't have gluten because waiters are hearing it all the time these days. My niece has to go into a long narrative about how they've been tested and the effects gluten has on them, etc., to be taken seriously (not always, but often). But I guess gluten-free eating being on trend is a mixed curse/blessing because at least restaurants are offering many more gluten free selections now.

    Anyway, if you think you could have celiac disease you need to figure out a way to get tested. Seriously.

    Some do indeed do it as a trend. But some non-celac, non-gluten sensitive people also avoid it based on information. So really, it's the server's fault for rolling their eyes. Education regarding food tends to stabilize the eyes and prevent rolling.

    It's a perfectly valid choice to not eat wheat products, such as gluten, wheat germ agglutinin, or amylopectin A etc. Especially considering that these components are heavily predisposed towards mutagenesis given the grandfathered hybridization techniques. Choosing to eat foods that are bodies aren't designed to eat and offer no nutritional upside is an intelligent choice, whether one is educated on it or whether one luckily and ignorantly got the idea from the National Enquirer.

    To those that like to read, they already know that it's obviously not just about the gluten. There are many more concerning components to wheat, as well as other industrialized food products. And obviously, Celiacs should be protected from any trace of wheat products.

    And it should be noted that "gluten-free" products are just as bad and can degrade health to a similar degree. Choosing to eat real one-ingredient foods solves that problem.

    So, although people who avoid gluten as a trend may not be informed, those who reprimand them for their "fad diet" are even less informed. And their eye-rolling is the real problem for celiacs, not the trendhoppers.
  • J72FIT
    J72FIT Posts: 5,948 Member
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    Go see your doctor. Self-diagnosing is silly.

    ^^^This... end thread.
  • Navtendon
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    Go see your doctor. Self-diagnosing is silly.

    ^^^This... end thread.

    ^^^This... Doesn't end thread.

    I am a doctor and I will tell you that doctors are as uninformed about gluten and wheat germ agglutinin and amylopectin A and any of their effects on the human body as anyone on this forum.

    A gastroenterologist can help with the diagnosis of celiac. But even celiac (the only wheat related disease that is legitimized) is not on the radar of most general practitioners who see patients for abdominal related symptoms.

    End result: most people who see their doctor for things that are often early celiac or gluten sensitivity are told: you're fine. go home. oops.

    This information is accessible to anyone, doctor or not.
  • SarcasmIsMyLoveLanguage
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    First, expect that a lot of people are going to tell you that you're being silly and that you shouldn't self-diagnose. Ignore them. The blood test can only be done if your body is currently experiencing a reaction to gluten (so, before you do a GF diet) and is not terribly accurate. You know your body, and if you are experiencing the symptoms, there's no harm in going GF for a while to see if they subside. More gluten for all the haters! :wink:

    Second, try to avoid pre-packaged gluten-free things. They tend to be similar or even higher in calories than their non GF counterparts. People think that just because it's GF, it automatically means it's healthy. Not always true.

    Third, educate yourself on what gluten is and what contains it. It's hiding everywhere (salad dressings, soy sauce, etc). Gluten does not only come from wheat.

    You will get a lot of pushback on here because unfortunately going GF has become a fad diet for a lot of people. Bottom line is if you try it and you feel better, you have your answer.

    Good luck!