Why do people go gluten free?

why-go-gluten-free

Why do people go gluten free? It’s a simple question that I always assumed had a simple answer. People go gluten free because they have celiac disease or a gluten allergy/intolerance. But, as Felix Unger so eloquently stated, one should never assume anything.

Udi’s recently posted the following item on their Facebook page:
If you are new to the gluten free diet (within the past few months), fill in the blank. I decided to go gluten-free because ____________.

Over 500 people responded and the wide range of answers were absolutely eye-opening. Besides the people who “must” go gluten free, there were so many others who had other ailments that were either instructed by their doc to go gluten free or who went on their own as a last resort. Below are some of their answers.

(By the way, kudos to Udi’s for getting this kind of response from their audience. When I post a question on my Facebook page, I swear I can hear the crickets chirping as I’m posting.)

I decided to go gluten free because…

  • I have Lupus and Thyroid Disease…..I just started and hope to feel better soon!!!!! My doctor told me to try it for a month.
  • I had a headache that wouldn’t go away for 5 months and my doctors couldn’t find the source.
  • Having a child with ASD has opened my eyes up to how horrible the stuff is!
  • Hashimoto.
  • I’m tired of migraines, I’m tired of being fat, I’m tired of bad skin, I’m tired of being tired.
  • Lyme disease.
  • It’s healthier. (Dude note: There were A LOT of responses like this. Going gluten free is not healthier unless you replace the gluten with healthy alternatives.)
  • Hives.
  • Migraines that wouldn’t go away.
  • Itching like I had poison ivy times 10!!!
  • Because of sharp-peircing intestinal pain.
  • It seems to have cured my vertigo and dizziness.
  • Fibromyalgia…going to see if it helps.
  • My son was having behavioral issues at school.
  • My mom is a celiac and I refuse to have anything in the house that makes her sick. (Dude note: Such an awesome answer.)
  • I have lupus and it helps a lot.
  • It helps my chronic skin condition.
  • I have acid reflux.
  • Desperation caused by Chrohn’s disease.
  • Broken toes. (Dude note: I really wish this person explained this one a bit. Did they break on their own? Did she drop a toaster on them?) 
  • I get heart palpitations, tachycardia, headaches, bloating and coonstipation when I eat gluten! Don’t have celiac.
  • I didn’t know that pooping 5 times a day was NOT normal until a friend told me. (Dude note: I know it’s not funny, but this one did make me tee-hee a bit.)
  • Because I have MS.
  • It clears my acne.
  • Extreme bloating, hives, major gas, diarrhea and depression.
  • The doctor said it would help my daughter and her body odor issue.

What does it all mean?

So what to make of these responses? Normally, I’d get on my soap box and say that many of these people are disillusioned in thinking that going gluten-free is a cure-all to all of their problems. But you know what? Almost all of these people said that going gluten free has been a savior and that they’ve never felt better.

Which leads to an ever more important question: Is gluten bad for you?

Are we better off as a society if we totally removed gluten from the food chain? And I don’t mean better off in a lose weight kind of way. But if this many maladies are cured, or at least pacified, by not eating gluten, then I gotta believe there is a serious underlying issue with gluten that needs to be further studied. And not by a blogger, but by the medical community.

Who knows…it may just be a smoking gun.

But we need to learn more.

So please, comment below and tell us why you went gluten free and what it has done for you. And share this post. The more answers we get, the more we can learn.

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82 thoughts on “Why do people go gluten free?”

  1. Since the advent of ‘Frakenfood farming’ the amount of gluten in wheat especially has sky rocketed. Out bodies weren’t designed to digest so much of the sticky stuff so it only makes sense that remving it from our diets is going to make us feel better. This makes even more sense when you consider how gluten is added to so many processed foods – eating more whole foods is going to make people feel better.

    I gave up gluten because of servere GI issues that still haven’t been diagnosed. I do feel better for it. Glad I like rice!

    Good health to everyone

    1. I hear this a lot…no diagnosis, but feel better going gluten free. It goes deeper than we think. And yes…I too can live on rice dishes.

  2. I gave up gluten because I had a severe allergy that was diagnosed about 7 years ago. I was really sick at the time and definitely feel worlds better than I did in the year or two leading up to diagnosis.

  3. I’ve been gluten free for almost 2 years. I’m not “officially” diagnosed; Dr. said probably celiac based on the symptoms I had and how they went away with the gluten free diet. What has being gluten free done for me? I have my life back. I don’t spend hours every day in the bathroom anymore. I’m no longer dizzy all of the time and my hands and feet are no longer tingling or numb. My chest pains went away, and my hair is no longer falling out. Most of the brain fog I was living with has cleared up (still have issues with that sometimes), but best of all the unexplained constant anxiety is gone! If I get glutened these symptoms make a comeback. That makes it simple for me to see that gluten is poison for me. Is it poison to everyone? I don’t know.

      1. My list of symptoms is endless, I have checked up the chart for Celiac symptoms and there not a single symptom that I don’t have, you name one, I have it. I have symptoms that aren’t even on the list. I have had the basic IgA/IgG antibody test and it came back clear, I’m confused, is that a definitive diagnosis or do I have to have a biopsy?

        I was diagnosed with fibromyalgia and I’m hurting from head to toe, mainly neuropathy, burning, stabbing, dull pain all over.

        Cheers

  4. I went gluten free because my 14 year old son seemed to be celiac. He could not get enough sleep. Needed to eat 8 large meals a day but seemed to be anemic and malnourished. We took the entire family gluten free in May 2011. He quickly improved and that cinched it: we remain gluten free. A pediatric gastro doc convinced my son, yesterday, to go on a gluten challenge in June as soon as exams are over and to get the confirming blood work and biopsies this summer. I’m dreading the fact that he will lose his summer but I understand his decision and his wanting to get tested before he is an adult and moved out of the home. One of my other children and myself have found huge increase in energy and quality of life since going gluten free too. If son gets positive diagnosis we will all get tested but regardless of the tests results we decided we’ll go back to gluten free after the biopsy because we do feel better.

    1. Glad to hear going gluten free has worked wonders for you. When you say “go on a gluten challenge”, do you mean your son must go back ON gluten? I know you need to be on gluten for the tests to be accurate. If that is the case, I wish you luck and patience. My best to your son.

  5. I went 100% gluten free the minute I received the call from my gastro.. I had the classic symptoms: fatigue, low iron, bouts of diarrhea (though I suspect that was the lactose intolerance), and painful abdominal spasms … no dots were connected, misdiagnosed as having IBS, and I remained undiagnosed for years, which led to osteopenia. The minute I stopped gluten, within I week my energy was back. It took about 2 years for my intestines to heal and no major abdominal issues to date! The more I read about wheat, especially the more potent wheat of today, I think it can reek havoc on many individuals, leading to leaky gut, etc., even without a celiac diagnosis. Maybe we should all just stick to fruits, nuts & veggies!

  6. I went gluten free after a diagnosis of Celiac Disease.

    I had no gut symptoms at all and still don’t when I’ve been glutened. Instead, what improved for me was depression, joint and body aches, insomnia and exhaustion, anxiety issues, thyroid function, vitamin levels, constant soft tissue injuries (used to happen nearly 2x a month), vertigo, earaches, brain fog, weekly fevers, a tanked immune system, and near the end, I had major mental issues. Felt like I was going senile.

    All gone now. Doctor suspects I may also have gluten ataxia because when I get gluten cc, I look like I just went on a drunken bender. 😛 I’ll have slurred speech, severe vertigo, and I have a difficult time understanding what people are saying to me or how to talk. It’s very bad for a few hours, then the confusion slowly clears over the next few days and the vertigo over the next few weeks.

    It’s very freaking motivating to stay off the gluten!

    1. It’s amazing the variety of symptoms different people have from eating gluten.

      Went on a drunken bender myself last night, but had nothing to do with gluten 🙂

  7. Other than the fact I am gluten intolerant/Celiac, I gave up gluten because otherwise I was constantly bloated. It was causing me gallbladder attacks and terrible headaches. Also, gum and dental issues as well. In addition, I used to break out on hives everyday on my joints and once I stopped eating gluten they all went away. Away with the gluten! I too am amazed though at the variety of symptoms associated with gluten intolerance.

    1. Simply amazing. If you did not have celiac disease, I wonder if the other issues 1) would have been present and 2) would improve going gluten free?

  8. I went to a specialist for testing at the end of December, he found what he called “concerning markers for Celiac Disease.” He couldn’t diagnose me conclusively. I then went and discussed everything I’ve been going through with my FP, with my results from the allergy testing, and he diagnosed me with “gluten intolerance bordering on CD most likely caused by Leaky Gut Syndrome,” with orders to severely restrict my gluten consumption to avoid full-blown CD. I’m choosing to eliminate it all together to heal my gut. I’ve been gluten free for about 2 months, and I am amazed at how much better I feel! My pain and inflammation is much, much less. I’m sleeping better, and my constant sniffles and sinus congestion are finally gone.

    For the last two years I’ve been experiencing really weird stuff: Weird skin rashes, severely dry and flaky skin, severe joint pain, unexplained muscle pain, constant digestive problems, stomach cramping, ear ringing, sinus congestion and runny nose, and occasional but annoying numbness in my hands and feet.

    All of these symptoms have either been eliminated or severely lessened since I went gluten-free. I’m glad I did it, and I finally feel normal after almost 3 years of feeling really crappy and sick. I’m of the opinion that EVERYONE would be better off not eating gluten.

  9. My husband and I went gluten free a month ago, when I rea about our genetically modified wheat supply. I then started to read about celiac disease and gluten intolerance and couldn’t understand why all the doctors never suggested a gluten sensitivity, we have all he classic symptoms!
    I have chronic constipation, incredible non smelly amounts of gas and bloating, vertigo twice a year, sinus infections twice a year, brain fog, low stamina, low libido and more…my husband takes 24 pills a day for an arthritic condition that no specialist ever figured out, Vicodin and prednisone daily just to get out of bed, on top of major NSAID doses.
    anyway, don’t want to bore you anymore, after – month gluten free, I am worse off, can hardly eat anything without stomach pains and incredible stomach discomfort,bloating,gas,constipation, but I do have more energy and am doing an elimination diet to see what works and what doesn’t….so far, yams and rice and veggies are good! we always ate healthy anyway, so gluten free has to really been a big deal once I figured out what foods are gluten free.
    My husband is improving slowly but has better days now and took himselfoff Vicodin for a week,which is huge, luckily he is to an addictive personality! Oh, and we have both lost some weight, which is a bonus!
    Thanks for your blog, it’s been very helpful!

    1. Most gluten free foods are not good for you. Corn, rice, and starches are often more offending than wheat. Don’t eat wheat, soy, dairy, or any other grains, and I bet you’ll feel amazing shortly.

  10. My research on gluten was driven from by battle with endometriosis. It has been said that we endo girls need to avoid dairy, diet products, processed oils, soy, gluten. Gluten in an inflammatory on our bodies and causes the endometriosis symptoms to increase. I am on my mission to cure from within.

    1. The Gluten Dude

      Interesting Denise. I was not familiar with endometriosis until I just read about it. I am off dairy and soy as well. I sincerely hope you find some healing.

      And I love that term “cure from within”.

  11. Thanks. Not many people know what endometriosis is. If you really want to know more about endometriosis, Dr . Cook wrote a wonderful article about the struggles of living with endometriosis “what it really means to have endometriosis”. I workout 5-6 days a week and thought I was eating hearhy. I have tried every holistic approach and finally came to the conclusion it is time to eat the way our bodies were designed to. I will keep you posted on my success.

  12. I’ve been GF for a month now after about 20 years of Fibromyalgia and depression along with Interstitial Cystits and IBS. I’ve avoided giving it up for years since it was first suggested by a Acupunturist. But I think when you”re so attached to a food or additive that you are AFRAID to give it up it may be an abusive relationship. So here I go after a week I certainly have more energy but the first two weeks really felt like withdrawal and a little scary. Leveling out now and do find my stomach gets bloated and miserable whenever I get fed up and fall off the wagon. We’ll see I’m hopeful and atleast it’s not another pill. Thanks so much for your blog and pointing out that this is not a cure all easy way to lose weight you have to track calories more than ever going GF!
    .

  13. I am trying to be gluten free after being diagnosed with IBS. I’ve suffered for years and haven’t been able to find anything that helps with my digestive issues. It’s terrible not to be able to travel too far from home because you might have to stop to use the bathroom every 10 minutes. I just started this gluten free diet a week ago and have not noticed a huge difference but I’m hoping with time things will improve.

    1. The Gluten Dude

      Took me years to start to feel better Susan. Some feel better right away. Try to be patient.

  14. I avoid gluten for two reason (although I do eat a little):
    My husband has celiac and we cook completely GF at home.
    I have endometriosis and it’s said that avoiding estrogen-level-raising foods can help it. Like soy, wheat etc. It seems to help some.

  15. I’ve struggled with digestive problems for 30 years (since I was 14 years old.) Since that time I’ve had ulcers, IBS, gastritis, severe inflamation, reflux, etc. In the last two years my symptoms have gotten worse. I keep going to doctors and feel like no one can really tell me what my problem is.

    Now I have found out that I’m low on vitamin D and and B12 and I’m in adrenal fatigue. I have Migraines numerous times a week. I struggle with gurgling, diareaha, and nausea. I also have severe joint pain.

    Recently exhaustion has taken over and I have felt close to dispare. My new GI doctor ran tests and I am positive for IGG but not IGA antibodies. He looked at old tests from a few years ago and said a bioposy showed no Celiac. We are retesting. At one of doctor’s suggestions I started a gluten free diet 8 days ago and I have to say the first few days were better. I felt 30 – 50% better.

    Last night I ate something that said it didnt’ contain gluten but I have been miserable ever since. Gurgling, nausea and cramps. The only thing I see in the ingredients is modified food starch?

    All of that being said, I am praying this is some form of gluten intolerance so I can just never eat it again and get my life back. If it is gluten intolerance why am I so miserable today when I’ve been so careful for the last week?

    Thank you for your thougths.

    1. The Gluten Dude

      Hi Ruth. If indeed you are gluten intolerant, everybody responds to gluten free differently. Some take months/years to feel better. Some feel better in days. I would say to stick with it 100% for a few months. Be extra diligent. Read thru my blog to get some support and to learn what you need to know.

      Please keep me posted on your progress…

    2. Probably cornstarch (genetically modified). Corn, rice, all starches, oats, and soy are damaging to the immune system. Try the SCD diet (specific carbohydrate diet). It’s very restrictive, but so worth it. Stick to fruits, veggies, chicken, lean beef, and fish. Almond milk and almond butter is good too.

  16. Thanks for the blog gluten Dude. I am gluten free for a week after dealing with a multitude of health symptoms for 20 years. I pray we all get well soon and inspire others to do the same.

  17. Hello Gluten Dude:
    I love your blog. I’ve really enjoyed reading your informative posts. Your question is why did I go Gluten Free. Well, I was sick for long time and only free better since being Gluten-Free.

    I am also a blogger. I wrote a blog a few days ago about the last year of my life, sickness, Celiac and going Gluten-Free. I think you will relate.

    Here’s a link to my post and feel free to nose around to my other posts as well.

    http://wp.me/pvNyA-1Ya

  18. Sigh…

    Dang, my story is long but I have finally (at 42yrs of age) realized that my “all over body pain” is most likely due to gluten 🙁 I have recently gone to the doc for blood-work. The chemistry, hemo, and thyroid levels were all low but wnl.
    I work in the healthcare field and tend to be a horrible patient. I have resisted seeking treatment but my all over body pain, constant lethargy, confussion, foggy head, etc…is making it so that I find it hard to laugh, exercise, etc. I tend to be the “life of the party” and I no longer have the energy to even get myself to the party.
    I just looked up gluten-intolerance this morning to see if I am being called to give this up. Reading your blog has given me hope that I may actually get my energy back and wake in the mornings with no body pain.

    I kinda lack discipline and really appreciate your blog. The testimony of others is really giving me hope and inspiration that this may be it! Wish me luck!

    1. Thanks for the, ‘Luck!”

      Not tested. I was a medical lab tech for 12yrs and a dental hygienist for 7yrs now. I am a horrible patient. I tend to self-diagnose and am seldom impressed by health-care providers. Though, when I find one that impresses me…he/she is given great glory and admiration. That being said, I grew so weary of my constant fatigue over the last 6 or so months, I finally found a doctor (first time in 10yrs other than female annual check-ups. TMI? Maybe!) and told that doc basically what I thought she should test for and she agreed. I was able to read the lab results online and I have not returned.

      I was “naughty” and had two chocolate iced, huge, delicious cookies before going to sleep around midnight. I awoke this morning in great body pain. I have been speaking this out for several years, “I think wheat and/or sugar is causing my body pain…”. I am so stubborn however, that I have just dealt with the pain and kept eating as I wished. I mainly eat well but love a good splurge.

      The thing is now however that I can no longer tolerate the constant lethargy and head fog. Sometimes I can’t come up with a basic word. I feel literally confused at times and therefore, confused about my confusion.

      On another note, I have had the “D” word interchangeably with the “C” word over the last few years. I thought it was possibly do to my mission work in South and Central America. Sigh…I dunno. Maybe I should go through the testing?? I’ll look-up what this entails and see if I’ll tell my new doc what to do (wink! Control issues much?!)

      Thanks again for this blog!! Love it! Silly, funny, helpful, inspirational, supportive, familial, hopeful, informative…etc., etc. This hard to impress girl is…impressed.

      1. The Gluten Dude

        Appreciate the kind works about the blog…

        Now go find a GI and get tested for celiac. It’s blood work followed by an endoscopy. This is still the gold standard of testing for celiac. If you d do indeed have it, you need to know so you can begin to heal.

        1. Is it possible to have the endoscopy for Celiac be negative and still have it? I was tested a few years ago b/c of IBS. He said I have Gastritis no Celiac, so I did nothing different. Fast-forward a few years and I was so tired and sick all the time I couldn’t even get up to get my kids on the school bus, my hair was falling out, my IBS was out of control! My mom hadn’t seen me in a while, and when she did, she said she was really worried about me, that I looked sick. Did I mention I have Endometriosis? So I went to a Naturopath Doc and she suggested I get off of wheat and sugar. Blood tests showed thyroid was normal, but severe Vitamin D deficiency. I felt better within 2 weeks of getting of Gluten! Within a month I had tons of my energy back. I stuck to the diet for 5 months, then I slowly stopped. (My family, 3 kids and husband, are not GF) So it is very hard. I ate what I wanted for 2 months, with some IBS symptoms, then the gastritis started flaring up and My hair started falling out again! Also the GF diet, along with avoiding dairy, seems to help me feel a lot better and helps my endo too! So what do you think? Should I get tested again? I know I tend to “cheat” b/c I don’t have an official diagnosis, so my friends and family don’t completely understand or support.

          1. I also have a Vitamin D deficiency. Is your Vitamin D staying at a theraputic level? If not, you can really feel like crap and have all the symptoms your are describing. Even with Celiac I feel better when my Vitamamin D level is the upper 40s or 50 range. I took a perscription strength Vitamin D, 50,000 IU/Week for a while. Now, I am on maintenance of 2000 IU/day until my next recheck in three months.

            And, yes. The biopsy can be a false negative if you weren’t eating enough things with Gluten in them prior to the test. Or, you could be Gluten Intolerant without having Celiac and maybe not have to be so strict with your diet.

      2. Hello. I saw a GI that Specializes in Celiac last week. They told me Fructose intolerance presents the same symptoms as Celiac. So, I am having a Hydrogen test for fructose & lactose intolerance. They are two separate tests each two hours. But, it is very common to have fructose & lactose intolerances while your stomach is jacked up by celiac. However, they go away once your stomach heals from the Gluten exposure. THat’s what I was told last week:-)

        1. Also, they told me it can take 2 to 3 years for an adult’s stomach to heal from long term exposure to gluten so you may feel better gluten free but still be symptomatic at times.

  19. I’ll consider testing but, is the only treatment for Celiac to remove gluten from your diet?
    If this is so, couldn’t I just remove gluten and “diagnose” that way? Not to be argumentative at all…I’m just curious if there is any other treatment deemed necessary to heal from Celiac?

    1. The Gluten Dude

      Personally, I’d want to know. If you have celiac, you cannot have a crumb of gluten…ever. If you have celiac, your insides could be quite damaged already. If you have celiac, there is a greater risk of your kids having it.

  20. You got me with the possible, “greater risk of kids having it.” I’ll be trying to find a doc this week.
    Thanks so much for putting up with my comments and for replying to them.

    keep ya posted…

  21. I first heard about the negative effects that gluten has on some people through my sister who has a severe allergy to gluten. I recently went to the dentist, and after having great teeth for years, all of a sudden I had 7 cavities and even needed a root canal. I learned that severe enamel damage can be the result of gluten intolerance.
    Not only this, but the fact that the wheat we eat today is so altered from its original ancestor einkorn, made me want to avoid the over-processed product. I also avoid GMO corn and soy.
    Originally, I intended to try the GF diet for a month and reintroduce gluten to see if I suffered any side effects, but when someone presents me with a piece of bread or pastry- I have no desire to eat it! Rather, I have been enjoying finding new recipes and healthy alternatives to gluten containing grains. Perhaps the most beneficial change more me is that instead of eating donuts in the office for lunch because they are readily available, I get a salad filled with nuts and veggies instead.

  22. I’ve been gluten free a whole week now. I’m a survivor of a near-fatal bout with candida. My body was sick all over, immune system shot. My symptoms were too numerous to mention. I daily take natural anti-fungal meds and stick to a strick anti-candida diet and am feeling really well for the first time since I was like 5. I’ve been on this regimen for 3 years now and every year I get better. Lots of damage done, I guess, and my immune system is kind of jumpy and paranoid, so I have lots of wierd intolerances. Something about gluten is nagging at me this month, so I cut it out, and dang I feel good. My skin feels good, my belly feels good. From doctors I got nothing but referrals, so I’ve navigated this whole journey from sickness to wellness alone, mostly by feel. And somehow I’m feeling this is going to help my liver, which still feels pretty weak. Very scientific, I know. Anyone have knowledge of a connection between gluten and liver troubles?

  23. I’ve been gluten free a whole week now. I’m a survivor of a near-fatal bout with candida. My body was sick all over, immune system shot. My symptoms were too numerous to mention. I daily take natural anti-fungal meds and stick to a strick anti-candida diet and am feeling really well for the first time since I was like 5. I’ve been on this regimen for 3 years now and every year I get better. Lots of damage done, I guess, and my immune system is kind of jumpy and paranoid, so I have lots of wierd intolerances. Something about gluten is nagging at me this month, so I cut it out, and dang I feel good. My skin feels good, my belly feels good. From doctors I got nothing but referrals, so I’ve navigated this whole journey from sickness to wellness alone, mostly by feel. And somehow I’m feeling this is going to help my liver, which still feels pretty weak. Very scientific, I know. Anyone have knowledge of a connection between gluten and liver troubles?

  24. I have been trying to be gluten free for about a month now…the biggest change has been my sleeping and overall fatigue level. I NEVER slept through the night and I blamed it all on my husband’s snoring. He bought a very expensive dental appliance that did not stop him and sometimes would sleep in the guest room because I thought my poor sleeping was all his fault. Since giving up gluten I sleep soundly through the night and feel SO much better during the day. He is still snoring but it does not wake/keep me up at all. Amazing….

  25. I get fat from wheat.
    About 25 years ago when I was 25 a friend of mine and I came to a conclusion: When we eat 2 slices of bread a day we gain weight, 1 slice we maintain our weight, 0 we lose.
    It may sound absurd, unscientific, open to questions like what else we ate but we where well aware of factors that could obscure findings of our little investigation. We lived in university dorms and ate what was served. You pick your usual selection from a limited daily choice which repeats periodically and simply grab a number of slices of bread at the end of the line. This daily routine made our experiment as controlled if not more than well funded research.
    Those where our findings then and even today after 25 years I manage my weight by eating more or less bread. It’s definitely not the 50 calories in each slice that makes the difference. I am also an energy freak and know in-out equation very well. Wheat simply changes this simple equation as some of us seem to metabolize and utilize our food differently in the presence of wheat.
    I am now off bread and other grains and as an added bonus it clears my facial and scalp seborrhea like it was never there in about a week.

  26. I am 59 and I find that my stomach fat from menopause has never gone away no matter what I try, so a friend of mine went gluten free and she said no more bloating at all, anyone else have this work for them.
    I was going to try this myself and see if it works !

    1. I am perimenopausal……..does that count? :0) I lived bloated before I went GF. I also have a friend who is in her 60’s who just recently cut out gluten, and her stomach isn’t nearly as bloated as before. It’s worth a try!

  27. Hashimoto’s (went undiagnosed for years), Fibromyalgia, IBS (Swung between constipation and diarrhea), Interstitial Cystitis, Systemic Candidiasis, Depression, Anxiety, Diagnosed Bipolar, Bloating, Severe abdominal cramping that felt like hard labor right before birthing your child, nausea, headaches, Tachycardia, Low B12, Chronic Fatigue, Constant achy body, dizziness, cloudy mind, and the list goes on and on! My doctor finally told me I should never consume wheat or sugar. I then discovered the connection to all my physical and mental problems was gluten! After going gluten free my mental health disorders completely cleared up and am medicine free, I have more energy, abdominal cramps are gone (unless I get glutened), Fibro is much better, Tachycardia is not an issue really unless I get glutened, and I can just get trace glutened and my heart will act up. I was not tested for Celiac Disease before I went gluten free so will never know without going back on it and being tested. It’s just not worth it to me to know whether it’s actually celiac or not. I don’t like the pain and problems it causes. I know I can’t eat it regardless of my technical diagnosis. I have a son who was diagnosed with a tic disorder and since following his allergists suggestion of trying a gluten free diet (I already wanted to), his ticking has dramatically reduced. He went for a long period with basically nothing and is completely off his medicine. His stomach pains have dramatically reduced. We also found out he is lactose intolerant. He wasn’t tested through a biopsy……….only blood work that showed up negative for celiac. Not sure how accurate that is to be quite honest! I also have a daughter who was following in my footsteps physically/emotionally. She took herself off of gluten and her physical and emotional problems have dramatically improved! I can’t even make homemade bread/cinnamon rolls for my family without getting “glutened” and suffering with bloat, and rash. I must have ingested it in the air, or something. WEIRD!! Oh, and my daughter’s chronic problem with her skin rash has disappeared since she went gluten free! YEA!!!!

  28. I have cold urticaria (allergy to the cold), alopecia areata, and asthma. I read that going gluten free could help. I’ve been gluten free for 5 days.

    1. Hi Audrey I know this post was a while ago but I also have cold urticaria and asthma and wanted to see if you have found any relief by being gluten free or some other way. Thanks

  29. I have always had stomach aches but recently, within the last year my metabolism seemed to jump drastically, I couldn’t eat enough, my stomach would burn for hours after eating. I lost weight, started having burning sensations throughout my body especially in my chest (sharp floating pains when I moved), arms and hands. Constant head pressure and dizziness was a constant companion. I would have to carry food because once I started getting hungry I would crash very fast. Shakes, sweats, and weakness. Doc said I was anxious and possibly had IBS.

    I tried Gluten free after searching for “Hypoglycemic symptoms with no blood sugar drop” on google because hypoglycemia is common in my family but I had tested fine while having low blood sugar like symptoms.

    After a short time of trying gluten free, so far I have no more shakes, the acid reflux which was a continuous thing has backed way off. I can eat a full meal without feeling burning in my gut or reflux. And I seem to be able to sleep much better. Although I am having ups and downs (some symptoms return for short periods of time), when I feel good my feeling of well being is much improved. When I feel bad it is much shorter lived and is less intense. I am hopeful that continuing on this diet will make me feel healthy again. I’m sure not all the pain is related to my diet but much of it seems to have subsided as I am feeling better. So as they say, if it helps keep at it.

  30. Dude, you may have some misconceptions about the “solid gold” diagnosis for celiac. Not all celiacs show damage to their small intestines, but problems further down the digestive tract have been linked to gluten, such as ulcerative colitis. Considering that gluten causes so many problems that affect the entire body, telling people that they should spend the time, energy, and money to get an endoscopy that is often inconclusive, especially if they’ve already experienced improvements on a gluten-free diet, seems inappropriate at best … and narrow minded. There are so many levels of gluten allergy and intolerance that there is no “one-size-fits-all” answer, or medical test.

  31. Christine Gray

    Gluten ataxia that was misdiagnosed for over TEN YEARS-need I say more?! After 3 months, I’m starting to feel better but it’s a long journey & that’s o.k. NEVER accept a medical “shrug”, keep looking, asking…it’s worth it…

  32. I have PCOS and we had fertility trouble. Shortly after trying to start a family my hair started falling out and my skin broke out from my face to my entire backside. I got desperate to try natural options before fertility medications. Tried lots of vitamins and supplements and finally went gluten free. First the first time in my life I got regular female cycles. I also realized a lot of other problems that i thought were minor and unrelated vanished. I use to lay in bed at night sometimes for hours trying to sleep but unable to shut my brain off, I now am asleep in minutes. I use to feel tired all the time and now i have taken up tennis. I realized that i was grumpy often for no reason and i now no longer feel the tingles in my fingers and toes that i didnt know wasnt normal. I have not been diagnosed but my mom and grandfather have. I dont really care what a test says because i know my hormones are better, i sleep at night, i feel better, its like i am a new person. I feel so much better i dont even miss anything! Giving up gluten has been soo worth it!

  33. For me, going gluten-free means that my depression is gone and I no longer “act weird” and throw up “for no reason” after meals. I have noticed that family/friend without gluten issues seem to eat better when eating gluten-free because they are eating a more varied diet.

  34. Diagnosed with Hashimoto’s almost a year ago. Have not touched gluten intentionally since. Sleep well, no more constipation, no more acid reflux (which was mild), no more brain fog, no more anemia. Thyroid is at functional levels without medication. I disagree that you need a “diagnosis”, many people cannot afford the testing which is inconclusive for many people. My grown family has gone gluten free because everyone has some issue within the gluten sensitivity realm- we could care less about a diagnosis, the bread is not worth it and we all feel better.

    1. Hello,

      I am reaching out because I’m really overwhelmed and can’t find clear answers online.
      I recently found out through an ultrasound that the right side of my thyroid shows signs of disease but all of my blood tests (including antibodies) are normal. They said it could be the very beginning of Hashimoto’s.
      I have decided to try going gluten free, however I am terrified by everything I’m reading and I’m not sure just how careful I have to be. I also have OCD so that is making me completely paranoid about cross-contamination but I’m not sure to what level I need to be. For example, if I go to chipotle do I need to tell them to put on new gloves before they touch my to-go bowl? Should I avoid eating out at restaurants altogether? I am terrified of the idea that microscopic particles of gluten are damaging my thyroid and I don’t even know it because I don’t have overly obvious symptoms.
      Any help and advice would be greatly appreciated.

      Best,

      Rebecca

      1. Hi Rebecca. You got this. Have you been specifically tested for celiac disease (blood test and endoscopy)? Without the diagnosis, I cannot tell you how careful you need to be. Your body will be the best judge of that.

        1. I haven’t been tested for Celiac, I was only told that I have Hashimoto’s disease which I have a long line of family history to support. But i can’t seem to find very much definitive information on if I would need to be quite as careful as someone with Celiac. I’m worried that small levels of cross-contamination will progress the attack on my thyroid but I won’t know it because I won’t show obvious symptoms. I guess maybe there won’t be a specific way to know until more time has passed and I will do the best that I can until then.

          I really appreciate all the information to read through, thank you

  35. I went gluten free because I found out I’m gluten intolerant. I was amazed how good I felt after a week, no more constant nausea, stomach pain, migraines, itchy blister rash. It also helped my lactose intolerance and hypoglycaemia (bf is super happy, cause I’m way less bitchy, and moody). Best decision I’ve made

  36. I went gluten free after having a list of issues….sporadic high blood pressure, heart palpitations, vitamin d deficiency, severe migraines, being so lethargic that I would have to take a nap after being awake for only an hour…etc, etc, etc. It took about 6 weeks before I noticed a difference. I was so skeptical at first…but then my energy levels sky rocketed…my migraines disappeared….I lost weight…a side effect that was a surprise, as I was already fit ( or was I?)
    So why when the holidays rolled around this year did I eat gluten? I don’t know….but I’m sitting here with heart palpitations and fatigue. Will not make that mistake again…hopefully in six weeks or so I’ll be back on track…..

  37. I went gluten free because I had symptoms that came out of nowhere that the doctor felt were IBS, but a low FODMAP diet didn’t help. When I went a step farther and eliminated gluten within 3 days my stomach issues were gone, my depression and anxiety were gone, migraines gone, the facial flushing that I got after eating most of the time were gone, body aches gone, constant cramps (that I attributed to some kind of menstrual problem, but were month long) were gone, bloating and interstitial cystitis gone, no more acid reflux, and the pain from my chronic gastritis and gallstones just… stopped and I wasn’t tired anymore. I had been living with all this and never thought twice about it (and certainly never connected the dots).

    Even with all these improvements I was hesitant to become part of the “gluten free fad” and two weeks later decided the improvements were coincidental and ate gluten. Two days of eating “normally” again and it all came back with a vengeance (and a terrible migraine)… I’m planning on talking to my doctor about ruling out Celiac while I still have the possibility of getting a positive blood and/or biopsy test.

    But, I think that I have the answer as to how to fix these issues dietarily. If only I had known about this I could have avoided all the pain, but most importantly the lifelong crippling anxiety and depression that were made worse with medication. I’m just thankful that I haven’t gone any longer without knowing my solution to mental anguish and physical discomfort.

  38. I went Gluten Free a month ago. I was suffering from joint pain, fatigue, constipation, severe weight loss ( I weighed 100lbs), unable to gain weight, confusion & hair loss.

    The Mayo Clinic in Rochester, MN did several tests on me. They found inflammation in my small intestine. They don’t know the cause of the inflammation (negative for celiac). The Gastroenterology doctor said, I should try a change in my diet.

    Since cutting the Gluten. I am no longer suffering from constipation, joint pain & have gained 6 pounds. My hair loss has also stopped. I still have some confusion & fatigue…but those 2 things are getting better.

    I am glad that I went Gluten free. The gluten free food might be costly. …but it’s worth it. It made a big difference in my life.

  39. I’ve recently gone gluten, diary, and soy free for my 6 month old son. He breastfeeds and at around a couple months old, he got this horrible rash on his face. It was diagnosed as Eczema and the pediatrician stated it has nothing to do with the foods I was eating and that he’ll grow out of it. Long story short, the rash kept coming back, it travelled to his torso and on his bottom, and after a couple weeks of fussiness, congestion, and a bowel movement with traces of blood in it, I said enough is enough! Went back to the doc (a different one in the same practice) and she said, he just has allergies and that the rash is hereditary because both me and my husband have skin issues, and to just cut dairy out (for the bloody stools).
    Well, I decided, to also cut out soy AND gluten. My little man’s rash has cleared up (although, it came back just slightly last week during the very hot and dry weather), he’s not as fussy, his congestion is gone, and his BMs are much better.
    Me on the other hand, it seems like it’s taking much longer for my symptoms to clear up. I get this recurring rash on my hands that haven’t cleared up yet, my dandruff seems to be worse, I’m still experiencing itchy skin, and I’m tried during the day. I’m hoping this improves soon?? My tummy issues seem to be better. I was constipated for a little bit but that’s better. I’m just happy my son is doing better but would like my symptoms to improve as well.

  40. I have started on my first day of my new life! After reading the above stories, i have been amazed at the similarities. I have suffered with allergic rhinitis for 15/20 years, heartburn, constant respiratory and ear infections (including vertigo) joint pain and plantar fascia! Unexplained weight gain, brain fog, acne, eczema and psoriasis, anemia, hypo thyroid. And the last year has been hell! A headache every day for a whole year! After 3 specialists, (ENT and neuro) brain scans ( to rule out any nasties) my doctors have diagnosed me with daily migraines!!!!! Never had 1 before now!… So whats causing it?? After reading these stories and speaking to a fab nutritionalist she said its probably wheat, gluten, dairy! So i am cutting them all out!! The problem is i dont want to go back to the gp as i dont want to stay in gluten!, are there any tests you can take whilst being gluten free??
    Wish me luck!!

  41. I have struggled my whole life with IBS, severe anxiety, migraines, etc. I began having severe upper abdominal pain. I was referred to a GI doctor but have not gone yet (waiting for insurance to kick in). In the mean time, I decided to put myself on a gluten elimination diet. I’m one week into the diet and I’m way more exhausted than normal and today I began experiencing vertigo. Also, I’m having body temperature changes. My friend who is GF said that this was all part of the process of coming off gluten and that it would go away. Has anyone else experienced this? If so, how long did it last?

  42. yes i had the sweats coming off gluten and dairy, my stomach problems seem a lot better. My problem is i have lost weight and don’t need to. anyone have any ideas about weight gaining on gluten free ?

  43. I have been gluten free for about 6 months now. When I first started I suffered from what seemed to be withdrawl. I had the sweats, I was super irritable, and all I truly wanted to eat was bread, pasta, and baked goods. After about a week or 2 the withdrawal seemed to go away, so if you’re just starting out on a GF diet stay the course it does get better. In that time I started to feel physically and mentally better as well. The reason I started on a GF was I had taken myself to the emergency room 4 times within 5 months from experiencing horrid chest and stomach pains. I thought I was having a heart attack or that something else was seriously wrong with me, they ran a bunch of tests but never found anything. On top of those quite painful symptoms I also suffered from uncontrollable belching (super embarrassing), odd muscle aches and pains, feeling like my brain was cloudy, fainting spells, and was diagnosed with bipolar and a anxiety disorder. I know there was more symptoms but those are the ones I really remember. All of my symptoms have cleared up (except when I get glutened, first signs for me are belching and stomach pains). Although I know my bipolar and anxiety disorder were not caused by gluten, I definitely believe they exacerbated those symptoms. I am waiting for my insurance to kick in then I will be talking to a professional about it and seeing about testing.

  44. I have Hashimoto’s and get hives constantly (presumably from thyroid). But I have a gnawing, burning tummy most days. Nausea on and off. I’m already lactose intolerant. I feel achy and blah a lot. With hashi’s…they mentioned going gluten free a lot.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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