Tip Jar

the tip jar

No…this is not a call to “Save This Site”.
I’m not going anywhere.

No…this is not a plea to help me cover the costs of running this site.
I got it covered.

No…half of all donations will not be going toward research.
They really will be going toward beer (or food…or medical bills…or…).

No…this is not a lame way to help monetize this site.
I’m lame in so many other ways.

If you simply want to say “Thanks for all the time and effort you put into this blog and this community” by buying me a gluten-free beer or two, you can click the button below and make a small contribution to the Tip Jar.

I THANK YOU!





33 Comments

  1. 1

    Very Tired

    Has anyone just gone on disability and quit their job?

    Reply
    1. 1.1

      Michael

      Not exactly. Worse than that. Celiac disease hit me hard at the age of 19, but I thought it was an ulcer, the gastroenterologist diagnosed it as a nervous stomach. Thirty six years later, I finally found a doctor who was knowledgable. I had never heard of gluten intolerance, which we now call sensitivity. I had been sugar, starch and alcohol free for 27 years, due to a diagnosis of hypoglycemia (a symptom of adrenal exhaustion, which was the first diagnosis she gave me, which is a symptom of celiac). I was in bad condition. She was after me to apply for disability. I resisted and faught on. I was not able to work a full work week every week in the last year , too spent to budge. I got brain damage with every accidental glutening – 44% traumatic brain injury the neurologist’s report said. I got gluten ataxia. Two years later I lost my job again due to another mass layoff. Three years later, with increased neurological and endocrine damage, fibromyalgia and chronic fatigue, lupus, MS and other autoimmune diseases you’ve never heard of, I capitulated and applied for disability and got it, no lawyer needed, even without the other autoimmunity diagnoses. I’ll be struggling to survive and heal for the rest of my life. Good luck.

      Reply
      1. 1.1.1

        Sarah

        Hi Micheal,
        Just wanted to say how sorry I am that you’ve been through all that cap! & I really hope that moving forward your struggle gets easier as time moves forward. Take care xx

        Reply
      2. 1.1.2

        Honor

        Wow! This is very interesting to me. I have autonomic dysfunction and a rare form of it called Hyperadrenergic POTS. It really does affect my adrenal system, hence the name. I went undiagnosed until I was 29 years old and Ive been gluten free for 8 years now. But I also have fibro and a lot of other medical issues. One being Chiari Malformation which is a neurological disorder. So, its very tough. I’m about to be on disability because I can’t work with the autonomic dysfunction. Its interesting to think it might have been my celiac disease all this time, causing me all this grief.

        Reply
        1. 1.1.2.1

          Anne Sarkisian

          This sounds like a dreadful disease and very much like many of the symptoms of celiac. Have you tried looking at foods that cross-react and act just like gluten? You might want to see if intolerant to dairy, egg, soy, yeast. Cyrex Labs has a list of cross-reactive foods. Perhaps scoping this out and eliminating troublesome foods might help.

          Reply
        2. 1.1.2.2

          Cali Celiac

          You might want to research FODMAPs. New research is linking it to IBS and possibly also Celiac disease. Celiac disease seems to be linked to so many other medical and neurological disorders it’s hard to know what is caused by the Celiac disease and what isn’t.

          Reply
    2. 1.2

      Erin

      I want to know as well, willing to put retirement in
      Just To Try!!

      Reply
    3. 1.3

      Tabatha

      Is It possible ?? My life is pure hell …four kids whom all are not GF and a fiancé. It’s like radioactive when gluten comes home from school daycare so on . same when “dad” makes gluten food for the kids its still on the tables,chairs and faucet handles after washing kids off -still GLUTEN EVERY WHERE . I dont want hand outs or money but, it would be nice to leave the house without a change of pants/panties and clean up wipes because i loose my bowles so frequently . I just want a break from the bathroom ,jokes people making fun of me and being treated like a “B*#ch” because if im out at a party or any type of socialzation where food is when i decline the : Bread ,burger or anything im looked at like a alien! Most people have no clue what a true cealiac deals with daily . #29tiredstressed#Thepriceofmyfood!!!!!!#help

      Reply
  2. 2

    Linda

    Just a quick & sincere thanks for all you do for our celiac community. I’m Dx’d 15+ yrs and have run a busy support group ( seashoreceliacs) almost as many so I do know how difficult & taxing it can be. But having someone in our community recognize it makes it all worthwhile.
    I do know how difficult it is to hear all these stories weather good or bad & not be able to do more. But you go above & beyond so I want to send yo a big HUG and say thanks again for all you do and tell you this you do make a big difference in our lives!!!
    Thanks Gluten Dude!!!

    Reply
    1. 2.1

      Gluten Dude

      Wow…THANK YOU! And kudos to you for what you do as well.

      Reply
      1. 2.1.1

        Tabatha

        Is It possible ?? My life is pure hell …four kids whom all are not GF and a fiancé. It’s like radioactive when gluten comes home from school daycare so on . same when “dad” makes gluten food for the kids its still on the tables,chairs and faucet handles after washing kids off -still GLUTEN EVERY WHERE . I dont want hand outs or money but, it would be nice to leave the house without a change of pants/panties and clean up wipes because i loose my bowles so frequently . I just want a break from the bathroom ,jokes people making fun of me and being treated like a “B*#ch” because if im out at a party or any type of socialzation where food is when i decline the : Bread ,burger or anything im looked at like a alien! Most people have no clue what a true cealiac deals with daily . #29tiredstressed#Thepriceofmyfood!!!!!!#help

        Reply
  3. 3

    Betsy

    I was finally dx with DH in 1979 after five biopsies and two years of being misdiagnosed. I got quick relief with Dapsone and had to be on a gluten free diet which I never stuck to. I was twenty four then…now here I am at 61 and a full on breakout and no relief. I never took my doctors serious when they said no gluten. Most of my doctors throughout the years never seemed serious anyway…One doctor told me there’s nothing wrong with having a hamburger every now and then. The I am suffering right now I dont ever want to eat gluten again! The rash and blisters are on my hands and feet, back, butt, arms and elbows. The burning and itching is unbearable. I asked my doctor for some sleeping Meds just to get a little sleep at night. I’ve been off of gluten for about a month now….still no relief. My skin is looks terrible. I cry from Guilt because I should have known better …my family is trying to understand where I’m coming from and feel bad because there is nothing they can do to help me. My current doctor is also a nutritionist and giving me all the info I need to stay GF. How long does it take before gluten is completely out of your system? I was on 50 mg of dapsone and upped it to 150…..

    Reply
    1. 3.1

      Gluten Dude

      So sorry you are hurting. Everyone heals differently. Hoping your doc can give you some serious relief. Hang in there.

      Reply
    2. 3.2

      Fawn

      I am hoping you have some relief now, but when DH goes undiagnosed for awhile and even after you stop eating gluten it can take three years or longer to get out of all your body tissue. Ice packs also help. Long term use of steroid creams leave your skin messed up. I have literally slept with Ice packs attached to my body and had to change them as needed.

      Reply
      1. 3.2.1

        Betsy

        I can’t believe it’s been almost a year since I posted. I am now off of dapsone and 100% gluten free. About three months ago my husband bought me GM gluten free oatmeal. I had to eat soft foods after I had a choking incident. I had another bad breakout it was a horrible month.
        I figured out that it was the General Mills oatmeal-Remember … for those of us with Celiac we cannot trust Cherrios nor the gf oatmeal.

        Reply
  4. 4

    Amy

    My 23 year old son was just diagnosed with Celiac after many incorrect diagnosis’ including Crohns. He also has many food allergies, including, wheat, eggs, chicken and turkey, ugh! I don’t know what he can eat, except meat and potatoes. I guess he’ll never be able to eat out again! This is really devastating. I didn’t know there was medication that helps. His gastro just told him he can take the budesonide which he gave him for Crohns? Any food suggestions or advice would be greatly appreciated. Thanks.

    Reply
    1. 4.1

      Mary

      Hi Amy,
      Your son can find many recipes online that are gluten, dairy and egg free. I would recommend he stay off all processed foods and avoid soy! It mimics gluten. After he heals up he should be able to start introducing some whole foods he may have had a problem with previously. Fodmap foods may also be an issue for him initially but he may be able to add those back slowly later on. Find a functional medical doctor close to you – will help him immensely! Good luck! Mary

      Reply
  5. 5

    aj

    I read the article regarding the GF beer. Let me suggest Redbridge made by AB. It is made out of corn syrup. I

    Reply
  6. 6

    Coco

    I just discovered this site by ‘accident’ and I’m hooked. I’ll be spending a lot of late nights with you Gluten Dude! I’ve been having a ton of health problems for the last 5 years and I’ve been through a battery of tests this year trying to figure things out…lumbar punctures, MRIs, CT scans, so much blood work I’m surprised I have any left and to top it off I was sent to a surgeon to have a temporal artery biopsy (basically shaving part of my head to cut out a section of artery. Luckily the surgeon took one look at me and said there is no way I’m doing this…I’ve never performed this procedure on anyone under 60. (I’m 44). Then one day at work I was having a conversation with a coworker and she said it sounds like you have celiac. Never heard of it but started researching (I’m in IT so I’m a bit on the nerdy side). I have pretty much every symptom and then some. I’m in the research phase before I go back to the doctor to present my findings. What I want to know is…why didn’t one single doctor ever mention celiac or gluten intolerance or anything? I quit eating gluten on my own for the last 6 weeks, without a diagnosis, and I am feeling so much better already. My itchy skin is almost cleared up, less migrains, less bloating, less confusion, not as tired! Any advice on how to approach this with a doctor? Thank you for doing what you do!

    Reply
    1. 6.1

      Gluten Dude

      Welcome Coco. Boy do I have some questions for you. I will email you so we can keep it private.

      Reply
    2. 6.2

      Jan

      Try a paleo diet or autoimmune diet. It’s pretty challenging for quite a while but if you feel a lot better that might make it easier. Good luck! PS there are many sites about gluten free but I feel better grain free, which is why my initial suggestion. One interesting site, because it’s via a Ph.D. person that takes it really seriously with explanations, etc, is PaleoMom.com. Isn’t it wild that things can go on for so long before the MDs are educated about this? So frustrating that it takes years for the medical institution to catch up, but many docs are. JP

      Reply
  7. 7

    msversie65@gmail.com

    I have celiac disease and fibromyalgia and high blood pressure and depression I work part time and wife and mother love my family. I do eat gluten free foods and the bad desserts . it’s the holidays that I hate, I prepared my own meals very exhausted I just once someone fix my meals for a month . so I can a break from the kitchen . I says this with much love also I apply for disability they turn me down 5 years ago don’t have enough credits

    Reply
  8. 8

    Iba

    When diagnosed, I consulted with an expert in Canada as my doctor was sleep at the wheel and said ” just dot eat gluten.” It is more complex than that. Dairy also is a problem for Celiacs- that is what I learned from the expert. I eat eggs, that is not considered dairy but I took milk, butter, cheese and yogurt out of my diet and within 3 days my brain fog lifted. For Celiacs, dairy releases opioid in the system which effects the working memory. Also sugar is another problem. Most of the “gluten free” products are full of sugar. Sugar causes inflammation in the gut. I rarely eat refine sugar. Mainly raw honey if need. Nevertheless, my memory is not as sharp but less foggy when eliminating dairy and sugar. Just thought to share.

    Reply
    1. 8.1

      Iba

      “don’t eat Gluten” I guess I am still foggy!!!!

      Reply
  9. 9

    Jan

    Just looked up your site for the first time to see if my meds are gf and found your writing to be so entertaining! Really enjoy that you can write about all this hassle stuff with wit and reality at the same time. Thanks!!!!

    Reply
  10. 10

    Elizabeth

    Wow! It’great to hear that there are others that are going through the same things and can relate. I was diagnosed with celiac about 4 years ago after being sick as a dog for 4 years, 15 doctors later I figured it out myself. It took about 3 years to heal as close to being back to normal as I’ll probably ever be. I try to stick to a gluten free diet as much as I can but it’s hard not to eat out because that’s what most people do for social get togethers. Things were going great the last few years for the most part then all of a sudden I’m getting sick every week for three or 4 days and the rash is really bad on my but cheek where I always get it but totally raw. Not to mention the mood swing that goes along with it like I’m going off the deep end as soon as it hits. Hate to be around anyone when I’m into that, feel like I have no control over my nastiness. I have no idea what I could be eating at home to be making me so sick. Feel like I’m eating the same foods I’ve always been eating. Could it be that I’m becoming more sensitive to cross contamination all of a sudden?Can anyone please help me?

    Reply
  11. 11

    amy

    Hi — Glad to see this today. I had a nuero-surgeon just tell me three weeks ago he wanted to operate on my neck, to stop the shoulder, back, arm pain I have had for three years. My muscles are getting weaker, etc. Can’t even do yoga.
    I knew I am gluten intolerant, but have been eating it anyways, and decided to stop two weeks ago. The results are amazing. Just in two weeks the pain is down by 70%. I hope it continues to work, but for now no surgery and see if I can manage the pain just by what i put in my mouth. No more grain!

    Reply
  12. 12

    Ginny

    I am on a journey to find out WHAT is wrong with me, since my useless good for nothing doctors do NOTHING except blame EVERYTHING on my being overweight, and if I try to tell them I was NOT overweight when all this crap started 25 years ago, they look at me like I’m that fat women who refuses to see she is fat, and making excuses. I’d agree with them, if I didn’t have all this other stuff to go along with it, and LOTS of scary new symptoms NO ONE LISTENS TO.

    I have, or have had nearly EVERY SYMPTOM that The Celiac Disease Foundation has on their symptoms chart. It’s scary, REALLY scary to me. I went off wheat years ago, though I started back on it when I starting feeling better and after I lost a bunch of weight. But it came back, again and again I did the same thing. I went off weight because a doctor I was seeing for pain told me I had “leaky gut” and to quit wheat. So I used spelt, an ancient, unadulterated pre-wheat, so to speak, but it does have gluten in it, not as much as wheat, but it has it. I’m working up the nerve to call the doctor they recommended to me. I hate doctors, I have white coat syndrome every time I go, my BP elevates. It elevates not from fear, but from massive agitation and an almost over-whelming desire to punch them in the face (not really, I mean I wouldn’t punch them, but I WANT TO). I’ve been on disability for five years, due to severe osteoarthritis, I need my left knee and both hips replaced, my right knee was replaced 11 years ago. My back is a mess, and arthritis is in EVERY joint, and my muscles ache all over. I am in severe pain, ALL THE TIME. I have lymphedema, urinary incontinence, myofascial pain, chronic fatigue, fibromyalgia, and I can’t remember the rest. I have numbness, tingling and intermittent pain on BOTH hands, and feet, and they keep telling me it’s carpel tunnel. In my FEET???? I had carpel tunnel pain years ago, this is totally different. It is sharp stabbing pain that lasts a few seconds at a time, but is massively severe and I can’t move my hand (or foot) until it stops. I have had IBS since I was a CHILD, and I’m now 56, will be 57 in August.

    I’m terribly scared, but I want to KNOW what I have and WHY. I’m tired of being in excruciating pain all the time, I’m tired of not being able to walk without a walker. I’m just plain tired.

    I’m definitely game for suggestions, and or knowledge about this, and how did you go about getting a diagnosis??? I’m desperate, truly desperate.

    Ginny

    Reply
    1. 12.1

      Gluten Dude

      Very sorry to hear of your struggles. Have you been tested for celiac?

      Reply
    2. 12.2

      Mary

      Hi Ginny,
      I wonder now if you ever got any help for this post you did in March! I hope this isn’t to late to help but it sounds like you have autoimmune issues up the ying yang! If you can get to a functional medicine doctor in your area do so. Go to functionalmedicine.org and see if there’s one near you. By all mean quit eating gluten and anything else that your antibodies will think is gluten ( mimicry)- like soy! Also corn and rice have gluten in it even though it’s much less than wheat or rye…still has gluten. I would steer clear at least for now. Stay away from all grains for now. Try a Paleo/Mediterranean type diet. …organic meats, veggies, fruits, berries, nuts, clean water and green tea. You may have a parasite or you may have thyroid issues. A functional med Dr. can help you find out. Good luck! Mary

      Reply
  13. 14

    Jay in CLE

    GD, I wanted to share my families story with weird illnesses but they do not align with yours. My daughter now 21 was diagnosed via an upper GI and scope to have severe Celiac. Since she was about 17 she started developing odd illnesses like Mono (not that uncommon) and then Shingles and then a bone infection in her jaw as a result of a wisdom tooth removal (last 2 very unusual for someone under 20). The infectious disease specialist was the one who suspected Celiac and pointed us in the right direction. Once she was diagnosed my wife started purchasing GF items exclusively for our house, so other than occasional meals out my diet went mostly GF.

    Let me say that I am one of the healthiest people that I know (flu once in the past 5 years, no colds or other illnesses ever). I am a recent member to the 50 something club and workout twice a week and play volleyball for 8 or 9 months out of the year. At my annual physical a few months back the blood test showed elevated levels indicating a thyroid issue. I have an appointment scheduled later this week so I don’t know if that has any connection yet, but about a month ago I changed my morning routine (glass of almond milk for breakfast) and started drinking the Carnation Instant breakfast powdered mix with milk. After a few weeks of this I noticed a definite change with my intestinal performance shall we say. Shortly thereafter I enjoyed some wood-fired pizza and a few beers after a round of golf and had a severe reaction several hours later. I started putting the clues together and went for a blood test the next day (was referred to as a Celiac panel) and it came back positive.

    I know that Celiac is genetic but what I don’t know is why did it show up acutely AFTER I changed to a GF diet? If I had maintained my previous non-GF diet would it have never shown up? Or could the thyroid issue have triggered it or vice a versa? If anyone has any input or similar experiences please share!

    Reply
  14. 15

    Colette Babson

    I try to be careful, but setbacks have hit me harder and harder since spring when I was prescribed Levaquin for a sinus infection that wouldn’t go away. My system is reacting in horrible ways.

    Reply

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