Our Awesome Celiac Community

celiac community

Even though this site is called Gluten Dude and my name happens to be Gluten Dude, this site is not about me.
It’s about US.

US…the ones lucky enough to have celiac disease or gluten intolerance.

US…the ones who aren’t in search of  just gluten-free recipes, but of support and understanding.

US…the ones who struggle with our disease, but still keep a sense of humor about it.

US…the ones who advocate for those who cannot advocate for themselves.

US…the ones who believe, as one reader put it, that celiac disease does not come complete with puppies and rainbows and unicorns shooting out of everyone’s behinds.

US…the best damn celiac community on the planet.

And I’d like you to share your gluten-free experience as much as humanly possible so this community becomes the go-to community for all of those in need of help coping with their disease.

Please leave comments where you see fit and share your knowledge, your stories, your passion and your sense of humor.

I have also built a community safe-space at my Gluten-Free Forum. Connect with your fellow celiacs. I’ve set it up so you can find other celiacs by age and by location. You can also share your restaurant and travel experiences. And in the Anything Goes category, well…anything goes. Use it. Enjoy it. Share it.

The more you get involved…the more people we help. Now how cool is that?

#NoCureNoChoice

47 Comments

  1. 1

    Beth Wheetley

    Hi Mr and Mrs Celiac Dude!!! My husband and I understand completely how difficult it is to abide to the gluten-free diet. I was diagnosed with celiac disease over 6 years ago and I’ll never forget my husband saying after the GI Dr. Gave us the diagnosis, you are allergic to wheat and you are married to me a,Wheetley! Ha ha It is ironic but he always helps me to smile or to lighten a situation:) I wish I could say I’ve never accidentally got gluten but I can’t I’m Always learning! I just realized a couple of months ago that I’m very allergic to oats too. I had bought some Gf crackers and didn’t read the ingredient list and it had oats. I had a severe 3 day migraine which setters in my eye-stomach pain I felt bad for a couple weeks.ive also got systemic lupus and fibromyalgia. My main three symptoms go back to when I was about 13 now I’m 49. It help reading others blogs and learning more but it’s very challenging and down right disheartening at times. At least the food end has got easier since laws changed on food packaging the year I was diagnosed, but it took 4 yrs til it really made a difference. Now for the last month I’ve been researching everyday I’m not too sick and changing all my topical products over to Gf, now I’m just praying someone out there that is very knowledgeable and can get the job done will be an advocate to get the laws changed to show Gf on products! It would help sooo much, it gets overwhelming! I appreciate all anyone does to post websites because its very time consuming I’m sure, all of it is but like you said Dude its our life! Mine my daughters and now my 3 yr old grand-daughters.

    Reply
    1. 1.1

      Gluten Dude

      Thanks for the comment Beth. The labeling law is now in the White House’s hands. I don’t have a whole bunch of confidence anything will get done too soon, but we can always hope.

      Reply
      1. 1.1.1

        Tara

        Just a note..
        The nutritionist I work with advised me that the law now mandates that the five trigger ingredients must be listed in the contains lists or ingredients list. If you dont see the words: wheat, rye, oats, barley or hops in either one of those lines.. it is safe to eat. I have been using this as a rule of thumb when shopping. There are a ton of gluten free foods out there that dont have to say “gluten free” on them to be safe…
        Thus far, it has worked fine for us…

        Reply
        1. 1.1.1.1

          Gluten Dude

          Hi Tara. I do not believe that is accurate. At least not yet.

          Reply
          1. 1.1.1.1.1

            Barb Wood

            You are correct! A product can contain gluten thru cross contamination. A product can only be labeled gluten free by FDA standards if it contains a gluten limit of less than 20 ppm (parts per million) in foods that carry this label. This is the lowest level that can be consistently detected in foods using valid scientific analytical tools. However…LABELING a product G/F is still voluntary.
            August of this year found defined GF regulations. Here is a link for more info. http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm363474.htm
            And to you, Mr. Gluten Dude, we are so fortunate to live in an area with a Wegman’s! They label all their products!

            Reply
            1. Kara

              I know I’m jumping in on this convo way late, but being just diagnosed this week I’ve done a lot of reading. The law went into effect in August 2013 but companies were given a year to comply. So as of August 2014 anything labeled “gluten-free” must have less than 20 ppm. However if a product simply says “contains no gluten ingredients”, it does not have to meet the 20 ppm requirement. It is only the words “gluten-free” that follow this rule. I’m looking forward to August (assuming the 20 ppm isn’t too much for me).

              Reply
      2. 1.1.2

        Caitlin Mac

        Gluten Dude,

        I’m super new to being a celiac, like less than 48 hours. I’ve been miserable for 26 long f***ing years… and I’m hoping this really is the answer. Is this a serious debate on the white house table? It was a nightmare shopping today….. I was not aware of the dangers of gluten free food. . googling every product… it was horrendous. Is there anything we can do other than writing a freaking letter that will never be delivered?

        Thanks,

        Frustrated tummy/depressed and anxiety ADHD ridden, Caitlin.

        Reply
        1. 1.1.2.1

          Gluten Dude

          Breathe Caitlin…we’ve all been where you are now. Overwhelmed doesn’t even begin to describe it. It gets easier…much easier…I promise. Do me a favor and head over to my five part section for newbies at http://glutendude.com/category/how-to-go-gluten-free/.

          Ping me with any questions…

          GD

          Reply
        2. 1.1.2.2

          Susanna C

          I was diagnosed 16 yrs ago and it has been a constant learning process… I’m still not sure if I’m getting it 100% right. But, I have found that the absolute safest diet includes one ingredient foods…like steak, chicken, fish… rice, baked potatoes, sweet potatoes or any veggie without any kind of sauce…unless of course I make it myself… fruits, nuts, etc. Its best not to think of the things you can’t eat, but focus on the delicious, nutritional foods you can eat… I know it can be difficult at family gatherings or just being invited for dinner…birthday parties…and of course, going out to eat… I tend to eat out at restaurants I’ve eaten at before and ordering the same things over and over… for family birthday parties I offer to make the cake or a cake… After a while this all becomes habit…you don’t much think about bread any more… but, yes… I do tend to have a fear of food in different situations… Id rather cook up a nice meal at home and enjoy it knowing that it is all safe…

          Reply
    2. 1.2

      Josephine Bologna

      Hi Beth, I wanted to tell you about my product called Josies Coat Of Oats that I have created for everyone. Josies Coat Of Oats is a healthy gluten free alternative for bread crumbs. Many people who have CELIAC are using my product because it’s that good. I just received a review from Christina Scoleri posting what she made with Josies Coat Of Oats and loves the taste and texture of my product. I hope that you also will give it a try. Many people are using Josies Coat Of Oats. Please let me know what you think about the taste and texture. I tell everyone that it only takes one try with one taste to know a great product.

      Lots of love,

      Josie

      Reply
  2. 2

    Kelly Fernandez

    I’m in the process of being tested for Celiacs… I have Hashimotos thyroid, graves antibodies and thyroid eye disease.. I’m a research go ru… So when symtoms of celiac got to the degree that I was living in the bathroom… I started to test the theory on my own.. 1 week gluten/wheat free and bam, tummy felt normal, bathroom habits got normal.. After a hard day of yard work.. I sat down and had a beer… Not even thinking.. My symtoms don’t come on immediately.. But seems like 6-8 hours later it begins and doesn’t stop for 15-24 hours!!! From 1 beer???? Is this normal for Celiacs?? I’m new to all this.. So any advice would be appreciated!!!!

    Sincerely confused
    Kelly

    Reply
    1. 2.1

      Gluten Dude

      I would say there is no “normal” for celiacs but it sure sounds like it could be. Go get yourself tested. Blood work and an endoscopy. You need to be eating gluten for a few weeks for the test to be accurate. Good luck to you.

      Reply
  3. 3

    Jessica Estep-Tam

    For years I have been suffering with these awful GI symptoms: nausea, abdominal pain (sometimes pretty intense), bloating, belching, alternating constipation and diarrhea. I’ve also had fatigue, joint pain, anxiety, memory issues, migraines, thyroid problems, numbness/tingling in my hands and feet. All this and I’m only 29 years old! Though sometimes I feel like an 80 year old woman! Of course I’ve been to several doctors over the years. Never leaving with more than a diagnosis of depression, IBS, acid reflux, maybe fibromyalgia etc. And always feeling frustrated because I felt the doctors either didn’t believe me about how I was feeling, or they just plain didn’t know what to do for me. I’ve tried all the antidepressants, all the meds for acid reflux, and all without relief. I even once had a doctor, in so many words, tell me that what I was experiencing was all psychological because I was depressed! Needless to say, I’ve since switched doctors.

    Recently though, there’s been more talk of this Celiac disease. Of which I knew only vaguely about. But my mother, who had recently saw a piece on Jennifer Esposito, called me one day and said I think I know what’s wrong with you!!! She began explaining this disease to me, and all my symptoms seemed to fit right in. This lead me to speak with my new doctor about the possibility that this could be me! And three months ago, I got my answer! On some level, what a relief! Finally an answer! I’m not crazy like the doctors, and probably some others, had thought! But man when reality set it, I realized what a life changing diagnosis this was going to be.

    I’m still in the beginning, but I have been mostly gluten free. However, my husband, his family, and I just got back from a family vacation in San Francisco where I accidentally ate gluten. Once again I’m feeling the frustration and pain. A set back. I was starting to feel better. And now even though I’ve only been three months without gluten, the accidental ingestion has been way worse then before I quit eating it! I’m having the typical GI issues and fatigue but now I’m also having palpitations and my heart’s racing, feet swelling, sinus problems, migraines everyday for the last 5 days (since I accidentally ate the gluten). Almost a week and I’m still feeling the effects! I haven’t felt able to go to work I’m nervous that when I return my coworkers won’t understand. But luckily I have a supportive husband and our families are giving their best efforts to understand and adapt to my needs. For that I am thankful. We will all continue to learn together. I’m sure this won’t be the first obstacle, or the last that I will encounter on my journey to health and wellness. Thank you for sharing your story, I just figured I would share mine :-)

    Reply
    1. 3.1

      Gluten Dude

      There will indeed be more obstacles but you’ll overcome them. We all do. Thanks for sharing your story.

      Reply
  4. 4

    Susan

    Hi Mr/Mrs.Dude!

    About a half year ago -after 9 long yrs of suffering from celiac symptoms and after a misinterpreted diagnosis- we became sure our son has celiac disease.(Through the gluten-free diet) Right after we started the standard gluten-free diet, that made some difference. However, the results were still behind from the expected one. About 2 weeks ago our son- and almost everyone in the family together with him- went to paleo diet. Only not paleo food we keep still, is the white rice. Now, after 2 weeks I realize, our son is more skinny than before and this fact for him is actually very bad. Could you suggest me what shall I do in this case? I`m already rethinking what can I give him and planning to include potatoes again. I have no idea whom I could ask but for me seems you have experience.

    Reply
  5. 5

    Ben

    My son was diagnosed with Celiac disease when he was 2 1/2. For a year leading up to this diagnosis my son would throw randomly and was extremely lethargic. We had asked our pediatrician numerous times to run tests on him and they would just tell us he is “at the age that he is picky.” My wife and I felt so guilty about actually yelling at him to eat food, at times I felt like just shoving food into his mouth. Sounds horrible, but as a father who would break down and cry due to the fact my son was skin and bones and was continuing to lose weight I was lost. I had called the doctor to tell them to please run another blood test again and they told me that they have done that and nothing new would show up. One morning my wife got up with our other son( our sons are 19 months apart) I heard her yelling at my son. At first I paid no attention to it, but I could hear in her voice something was wrong. When I went to his room he was moaning with his body in a seizure like state with his eyes rolled back in his head. Every time you would touch him he would scream. We called an ambulance and they took him to the closest ER. After a CT and a spinal tap they told us he needed to be taken to a Children’s Hospital. After numerous tests throughout the day my son had two seizures that night with my wife present. The following day my son should improvement but he had lost all his motor functions, and his vision was impaired. He would try and speak to us but he couldn’t move his mouth so he would end up screaming. On the 3rd day they came in and told us he tested positive for Celiac. I may be wrong about the numbers but isn’t anything over a 5 you are positive? He was 30 something. Even though we had a answer we did not have a solution since he still needed to be taken to a GI for a true test. So after 6 total days in a ICU and then 2 weeks of still having him eat Gluten his test came back positive and since then he has been GF. As much as it sucks that he has this disease I also think for him to have been diagnosed at such an early age he doesn’t know of all the foods he could eat. It is still very difficult for us to have him eat new foods, but my son is now a completely healthy 5yr old. Who is also ripped with a six-pack.
    Also places you offer GF foods but can’t assure you that it is GF are a bunch of &$?holes.. It’s not a fad diet for some, it’s a way of life for my son.

    Reply
    1. 5.1

      Gluten Dude

      Wow…wow…wow. That is some seriously scary sh*t. I’m so glad your son is ok now. Crazy disease this celiac.

      Are you ok if I post your comment as a blog post of its own? I think it would help other parents tremendously.

      Reply
  6. 6

    CHANDRA

    LOVE TO RECEIVE NEW INFORMATION ABOUT GLUTEN FREE FOOD!!

    Reply
  7. 7

    Jamie

    My new most favorite site!!!

    Reply
  8. 8

    Ashley

    So glad I stumbled upon this blog. As weird as it seems, I’m thrilled to hear my symptoms are normal. After googling and trying to research on my own I finally feel like yes, this makes sense. I’ve battled with stomach issues most of my life. Hating the doctors, I’ve refused blood work, stool samples and the like in fear that I will have to change my way of living. I grew up on fast food, pizza, chicken fingers, pasta… I was in the bathroom more often then not.

    For years I would say “oh I must be lactose intolerant” but after having a SERIOUS abcess that hospitalized me on Christmas Eve and Christmas Day- I’ve given in and been tested for numerous things- including gluten intolerance. Sure enough, numbers came back “incredibly high” and “celiac positive” I immediately said “OH GOD NO MORE BUD LIGHTS?!” As most 26 year olds would say…

    Finally had an endoscopy done on Friday an I am awaiting the results. I’m actually petrified of falling back into eating gluten (even though I’ve only been “off” of it for a few days) because I certainly can tell the difference. If I feel this “good” right now (and I do think most is psychological right now ) I can only imagine how great I will feel in a few weeks! Or months!

    Stay positive! I need it. It’s helpful. I appreciate the real-ness. It’s not easy and it’s sucks to sit at a bar and not have that $3 bud light. My bank account hates me. But my intestines love me, and I guess that’s what allows me to sleep and function well…..so I guess ill take one for the team.

    Reply
  9. 9

    Jane

    I went to my GP two weeks ago, complaining of feeling ‘off’. Not sick – just not quite right. Sometimes food wouldn’t agree with me like it used to. I have an underactive thyroid and the doctor was concerned that maybe my dosage wasn’t correct, so he ordered a whole bunch of blood tests for me to see if there was anything wrong or if I was just succumbing to the stresses of having two toddlers…. I just got the results yesterday that the ‘level of antibodies’ suggests I have mild Coeliac disease…. The GP suggested I try a hardcore gluten free diet for six weeks to see if I feel any better. He said he could book an endoscopy to confirm the diagnosis, or I could just try going gluten free and see how I feel. I opted for the latter, for financial reasons, which seems silly when it comes to health (what else do you have if you don’t have your health?), but my symptoms aren’t severe.

    I guess I don’t really have any questions about it, but I am wondering if people might view me as being a bit too precious or something… Oh, I do have a question: can I still drink oat milk? I read somewhere that oats are a no-no.

    Reply
    1. 9.1

      Gluten Dude

      Hi Jane. Celiac is celiac. Even if your symptoms aren’t bad, it doesn’t mean your insides aren’t a mess. Just an fyi…for an endoscopy to be accurate, you must be eating gluten for a set period of time. It’s a personal choice whether you want the confirmed diagnosis.

      Oats are a maybe. It depends where they came from.

      Good luck.

      Reply
  10. 10

    Jeff Kelly

    I nver had a “Mrs. Me.” I never fucking will, it seems. I am 56 and financially and socially ruined and have been for all my adult life. The chronic clinical malnutrition was SEVERE. And no physician gave a crap or knew a Goddamned blessed thing. I was only FODDER FOR PSYCHIATRY. My annoyance scale is a 10 out of 10 for the Catholic Nun who ruined my ENTIRE LIFE when at age 11 she banished me from her school for two years on the basis of being “mentally ill”. That’s all a bunch of bullshit and my family ABANDONED ME. TOTALLY AND COMPLETELY. It is all a bunch of bullshit but that’s how people ARE. It is a harder pill to swallow in some ways than going strictly gluten free but what the fuck. I went to Lahey Clinic in 1991 and was told a bunch of bullshit then by the Gastro there–who later became my Gastro as I struggled with OBVIOUS Celiac–who then dismissed me from his practice because he couldn’t cope with the fact he was too ignorant in his professional life to help me at Lahey. Well fine and dandy but neither were the docs equipped to help the very wealthy John fitzgerald Kennedy during his very wealthy life who suffered Celiac IMMENSELY and was given wrong and bullshit diagnoses also during his life including the bullshit psychotroipc drugs which then of course led to the embarrassment by the family by having to try to EXPLAIN that to the American Public after it ALLOWED the release of this material in 2002, which was some 39 years after Kennedy was assassinated in Dallas, Texas in 1963. So anyway for the privilege it allowed itself to FUCK MY LIFE UP PERMANENTLY AND COMPLETELY I GIVE MY MIDDLE FINGER TO THE MEDICAL PROFESSION–WHICH NEVER ONCE SUGGESTED TO ME IN ANY TIMELY FASHION AN UPPER ENDOSCOPY WITH BIOPSY TO LOOK AT THE INTESTINAL VILLI DESPITE THE FACT THAT I HAD BUCHU GASTRO SYMPTOMS–AND THEY CAN KISS MY MOTHERFUCKING BEHIND AS A RESULT. I HAD NO SUPPORT FROM MY FAMILY BUT WAS TREATED AS AN OUTCAST INCLUDING BEING DESIGNATED MENTALLY ILL TO A MAN WHO LATER BECAME MY CITY’S MAYOR UNDER WHOM I TRIED TO GAIN EMPLOYMENT BUT SINCE THE MENTAL ILLNESS DESIGNATION WAS IN HIS MIND HE AFFORDED ME NOTHING BUT BIGOTRY AND AS A RESULT I CONTINUE TO HAVE ABSOLUTELY NOTHING FINANCIALLY AND WILL DIE–REPEAT WILL DIE–WITH NOTHING FINANCIALLY HERE IN THE WEALTHIEST NATION ON THE FACE OF THIS EARTH. I AM 56 AND THEY TELL ME NOW MY IMMUNE SYSTEM IS CHEWING UP MY LIVER AS WELL AND I WILL IN THE FUTURE NEED A LIVER TRANSPLANT IN ORDER TO SURVIVE SO FUCK THE BULLSHITTERS IN MEDICINE AND THEIR FUCKING BULLSHIT IGNORANT BIGOTRY AND PSYCHIATRIC MYTHOLOGY BULLSHIT. Thank you all and have a nice day *

    Reply
    1. 10.1

      serena s.

      Hi Jeff,

      I admire your honesty and courage in a world that is so judgmental when we are transparent. Your candor helped me, as a new professional counselor and celiac counselor/coach/consultant (I have celiac disease). Thank you for sharing the range and depth of emotions many of us experience with this disease. This is why I am specializing in this type of counseling. I hear the anger through your post for the loss of your quality of life, and loss of trust in your elders/professionals and others who are to “do no harm”, as is the tenet I uphold as a counselor.

      My website will be posted in a few days. If am offering complimentary phone/skype counseling for ten sessions of 60 minutes each for readers of this blog through November 1st at this time. You may read about my graduate degree/training/license and background on my website.

      Reply
    2. 10.2

      CD

      I don’t know why I read this today, but I can relate to this rant in so many ways. I felt this angry for a long time and it was part of my “process” in healing. There are 5 stages of grief that often need to take place after this diagnosis.

      1. Denial
      2. Anger
      3. Bargaining
      4. Depression
      5. Acceptance

      Clearly you were in stage 2 when you wrote this. I hope you’ve been able to find the joy in life after such terrible disappointment. I’m only now beginning my life after misdiagnosis and prescription medications. The medical community misses Celiac disease far too often and people do suffer as a result. It took them 20 years to discover that I have CD and it has been life changing for me in the most positive way imaginable as I have been able to regain my health.

      I wish you well and hope you’re feeling better now.

      CD

      Reply
  11. 11

    shell

    lucky to those who can get a doctor to treat more then symptoms till they about kill you!,.. I still cant get them to do the right tests and I sure am not going BACK on a gluten diet so they can torment me more. i keep hearing diagnosed ,. well hi there my name is machell and I have no doubt in my mind what i have and why,..one year clean from all gluten’s, not only that but warning of other night shade plants!!!!!, its one time its good to cook those tomatos really good! potatos watch out! , ever wonder about the greenish tint they have some times,.. look it up as well as other night shade plants.

    please! read about irish sea moss powder!,..i found it starting with saving my horses from bloat AKA colic….i use it EVERY day now,. in what i drink or eat and wear it!!!! it feeds Your skin nails and hair!,.. no i dont sell it,… its cheapppppppppppppp and it worksssssssss
    and i keep telling everyone who can hear see read or watch!!!!

    Reply
  12. 12

    barb

    My doctor says an elevated iga was not enough to go on. I was miserable wracked with horrible pain in all my joints 14 bathroom visits a day and extreme abdominal pain they couldnt find an answer for. I went gluten free 4 Weeks ago I am a huge celiac. I also have a recent Hashimotos diagnosis and Fibromyalgia diagnosis. However nothing has brought me a turn around like gluten free has. My sensitivity to gluten is going up as I go but thats okay. I prefer less gluten and less symptoms in my life. Unfortunately my pcp will not do more testing her original opinion sticks although over limits by 150 points my blood work was not significant enough to warrant farther investigation. You know doctors can be fired and replaced and I am getting other help. I hope other s do not settle whem this gluten Free choice helps them when it is truely not a choice but a life saver

    Reply
    1. 12.1

      shell

      I feel for You, I see people suffering all over,.. were all looking for the answers!, I just spent a day in the hospital life long gluten poisons eat at My body,.. going from symptom to its own Problem,

      it causes Your body to rot! Ive been off gluten’s for over a year, it has been a slow healing, the once problem with gluten’s is now the remnants of the effects it left us with!,.. but getting off all the garbage has made a big difference and now i work on healing the troubles it caused,. although many will be life long.

      it is sad that dr,s have treated symptoms while leaving the cause there untreated,.. years i was in chronic pain, gut pain!,.bloat, colic,.you know all the things that go on,. and it may be hard to diagnose because there simply ignoring it for standard, of,..heart burn.=..antacid!….=no acid in Your gut, =reaction,.. body fights,..galbladders go bad,..thyroids off,.. all the troubles steming from the poisons around us,.. food is powerful , we have been offered so many poisons with certificates of “goodness” “health”
      and its not. people suffer 10 years and more begging doctors,
      I stopped listening to there standard practice,. and started making myself smart,.. I was off glutens for a long time when My doc teted me,.. I told her I had not been on any and the test would be neg.. as of course it was,….so I dont even have after 12 years
      a word from them,.. just. more taking out dying organs,.

      but,.. take heart,.. do for Yourself,.. make Yourself smart,.. and dont let them send You away to suffer,.. push,. yell if You have to.. make them listen,…

      ok one more thing,.. get the irish sea moss powder,. pleaseee

      I know You dont know me,.. but read up on it,..use it,. it heals Your guts,. soothes,..I put a teaspoon in blender with some thing that tastes good, and down it,.. its like heaven but smells like dryed up old sea sock,.. please I just tell people about it because it helps save My life,. I know what it does, I use it on My skin face even in my hair,.. why? it is,, sooooooooo full of vitamins and it doesnt let acme come up,…if you use it wet,.. ive used it for sun burn,.. on my face if you see one thing from what I wrote please see the irish sea moss,..I i get it from maincoast sea vegg but You can find it on amazon too,. i just called the owner and made deal for `10 pounds because its just 10:45 a pound that way

      some thing like 14:50 normal,. so its worth it,..once You start using it You wont thing 10 pounds is alot, and when word spreads like Me, now here,. I want to tell the world about this stuff,..

      I did the research, im a avid user,. and I found this because it was the main ingrediant in,.. HORSE COLIC relife 85 dollars a bottle,.. oh yeah to save a horse tho yep worth it sooooo

      I took it apart what is it i said,. <smiles. potassium,.. magnese. peppermint,.. and IRISH SEA MOSS. oh yeah.
      i looked that up,.. lol one pound 14:50 blah blah.. soooo

      it started off slow,. then I worked my way thru with using it for alot of things, it stops colic dead, in horses,.. 30 minites gut sounds.. two hours, they acting normal,. i was like hayyyyyyyyyyyyy………I want some,. soooo I use it,. please,.. please look at it,.. look it up,. oh you tube shows thing on it too,.. ive seen some………. best of luck,.. dont give up,..never give up,..

      M

      Reply
  13. 13

    Jessica Rosenkranz

    In started having issues as a kid. I knew where the “nice” public restrooms were for when I was out and had to get sick. I went to 3 different specialists and was checked for Chrones, Cancer, etc. Seven years ago at another specialist and more tests she told me Celiac. Not knowing what it was I didn’t believe her. After some more research I am now following a Gluten Free lifestyle. The mood swings, joint pain, headaches and such are slowly getting better. It’s still touch at times but it is nice to know there is a whole community of people out there that are just like me.

    Reply
  14. 14

    Caroline - New Zealand

    It saddens me that there are so many stories of taking so long to be diagnosed. I was 47kg (7st 4) by the time I was finally diagnsoed. I am 5ft 6 so that’s pretty thin. But all my symotons were being looked at in isolation:
    Vomitng daily – apparently it was just relux
    Serious fatigue- I was anaemic and just needed to take iron tablets
    Depressed! – how about some anti-depressants?
    Migraines- bad luck, not a lot that can be done.
    Peri-menopausal (I was 40) – well that happens to some earlier than others.
    eventually I went back to a doctor I hadn’t seen for about 2 years. He could not believe how ill I looked, he sat with me for nearly an hour just asking questions and going through all my records. He added in the celiac blood test – woohoo I had an answer. The results were so high he called me at home on the weekend. I was sent for the endoscopy on the Monday, I had no villi left at all and had pitts in the lining. Such a relief to know what it finally was, and everyone told me how lucky I was that it was just a ‘food issue’, I can smile now, 3 years down the track, but my advice to anyone newly diagnosed – be patient. It took a full year before I really startd to feel ok again, but it does happen.
    Lastly, I have special thanks to my husband. He met me and my 3 children not long before I started to get ill. He not only supported me through it all, he took over looking after my family when I couldn’t get off the couch. He is a policeman and he would get home from a very late shift, get up and make my breakfast and then get my kids to school so I could get myself to work. And thn dinner would be ready for when I got home and kids all transported to various activities. And now he is my biggest advocate for making sure I dont get gluten’d. So in one way I have been very lucky. :)

    Reply
  15. 15

    Joey B.

    You don’t have a disease. Nobody should eat Gluten, we are not designed to eat it.

    Reply
    1. 15.1

      Caroline New Zealand

      Sweet that you can have such a simplistic lookout on life. But I think you’ll find you are outnumbered in your opinion. And in the proof of my fabulosly healthy children that eat bread. :)

      Reply
  16. 16

    Theresa

    Came across your site when looking for symptoms of being glutened…I’ve not been diagnosed with celiac but after years of symptoms (brain fog, joint pain, chronic constipation, gas, bloating, mood swings, irritability, depression, constant sugar cravings – I could go on) and trying to figure out what the problem was I decided to start looking at gluten and went gluten free on Sept 10th 2013 and within days began noticing a huge difference. My mood stabilized, the gas and bloating went away ( I used to look 6 months pregnant every night and felt like a walking horn section if you know what I mean) the joint pain went away ( there were times I could barely walk and my legs would just ache). When I was younger I had been diagnosed with a spastic colon. I’ve thought about getting testing for celiac – but don’t want to eat gluten to get any tests….I suspect my dad may have celiac or a very high intolerance – he has always had issues with digestion and has diverticulitis and bouts with colitis. Have to say it makes me crazy to hear being gluten free is a ‘fad’ or just another diet. I don’t wish this on anyone!

    Reply
  17. 17

    DebFezz

    Just happened upon your blog this evening and love the spirit of humor, down to earth realistic view of life without gluten and overall supportiveness!

    I should have suspected I had gluten issues when I started the south beach diet back in 2004-ish and felt FANTASTIC the first two weeks (phase one) but felt terrible the moment I started on phase two. Twas the reintroduction of…..you guessed it…..grains. I couldn’t wait to savor a slice of whole grain bread….the holy sandwich grail. Then I would feel so bloated and lousy, but still didn’t have a connection to WHY. ( sad to say, my GI doc was no help in making any connection)
    Fast forward through five bouts of diverticulitis and a subsequent colon resection. I had to eat a low residue diet for weeks. White bread….white bread….Rice Krispies ( this was before the GF version was around). I felt awful and wasn’t recovering from surgery well at all. Sad to say, my GI doc was no help. ( notice a theme with the less than helpful GI doc?)

    Soooooo, I have allergies, environmental allergies…lots of them.
    I get weekly allergy shots. My allergist is a peach…and also has celiac. He could tell I was struggling to regain my health after such a major surgery. So one day he said he wanted me to eat gluten free for two weeks. I did and I made more progress healing in those two weeks than I had in all the weeks prior. That was back in 2005 and I haven’t looked back.

    I’ll look forward to exploring your blog more tomorrow. :)

    Reply
  18. 18

    SonicPiano

    I just read your interview and am curious about why the folks at Celiac.com aren’t fans of yours. I’m not a fan of theirs, either. I posted a few questions on their “support” forum after I was diagnosed in October 2012 and was bombarded with replies from fear-mongers that only served to ramp up my anxiety. I never posted or visited that site again.

    I hope you continue to slowly feel better. Based on what I’ve been reading on your site, I’m one of the lucky ones but even 18 months in I have my bad moments as well.

    Reply
  19. 19

    JB - UK

    Love your infographic. I could tick off most of symptoms in red and many of the others as well. Bladder infections I’ve never seen before but yes that as well, although for me this was attributed to other issues – for another day perhaps. How wonderfully refreshing your honesty is. I was diagnosed with CD a year ago although I must have had it for years, probably decades. Having been born in the UK only a few years after post-WW2 rationing ended, as children we didn’t dare complain of problems with food and it becomes a habit, normal even, to feel tired all the time. Today, the start of Coeliac Awareness Week in the UK, I received normal blood results from my GP. I feel a small victory but it’s been a year of struggle to feel well from one day to the next. I’m still not there. When I’m frustrated and disappointed I remind myself that one year is not enough if I’ve had CD for decades. The people that chirrup that they felt full of energy a week after coming off gluten and that they’re entering next year’s London Marathon really annoy me. As do the people who look at me suspiciously like I’m a member of a religious cult when I say No, not even a crumb of a small biscuit, thanks. My mother refuses to get tested because she’s in her late 80’s and ‘there’s no point now’. This is the mother who possibly could have noticed that her daughter wasn’t well instead of complaining that as a child I always looked pale, toyed with my food and caught every bug going, with severe symptoms. I could go on but I somehow manage to see the funny side of other people’s ignorance. All my past illnesses and problems are vindicated and the slate is wiped clean, so to speak, now that I have my diagnosis. For the first time in my life I am in control and eventually my body will repair itself. Like you I wonder if this was pre-planned for me because another irony is that I chose to study Biochemistry, Genetics and Microbiology at university. So I am empowered to understand more than most CD sufferers about my body and about foodstuffs. Please keep up the good work of your blog.

    Reply
  20. 20

    GF Katie

    Community is so important and finding people who are not only supportive but have shared the same struggles can be so reassuring! This community is fantastic and I’ve found that most people will go out of their way to be helpful and share ideas.

    Reply
  21. 21

    Ken

    Hi Gluten Dude,
    Thanks for a greatly helpful, humorous, no holds barred blog. I was diagnosed a year ago April with celiac an have been on a steady rebound since sticking to my GF diet.
    It was with great remorse that I ended up with this disease as I feel like I triggered it by osmosis. (No not really). My son’s father in law was diagnosed 10 years ago. When we first met his in laws we all went to dinner to discuss wedding plans and that was when they told us about it. I was as ignorant as anyone at the time and asked questions and got a general knowledge of the disease.
    As time went on, we became great friends with them and continue to see them socially and have great fun, sometimes jokingly taking aim at his situation, but always mindful of the consequences of “glutening”.
    Then about a year and a half ago I started having some very really disturbing health issues, the worst being severe weight loss and extreme fatigue, followed by no appetite.
    I had always had stomach issues and like many, I was told I have IBS and was told to watch my diet, the usual…you know.
    It wasn’t until I started losing the weight and my days were filled not much more than constantly running to the bathroom 7 -10 times a day in the course of 2 weeks and an ER trip for dehydration that I went to my Dr.
    He has a PA in his office and she asked me about my diet and I told her all the difficulties I had been having. She had me going in to have blood work done because she wanted to rule out the regular things, but she was adding a Celiac Sprue(?) Panel. I jokingly said, your joking right..No she said!
    Within 2 days I got a phone call that I needed to be seen in her office immediately and that yes, I most certainly did have Celics!!!!
    I melted into my chair and the tears flowed. To this day I don’t know if it was relief knowing it wasn’t cancer, or that I had such a quick diagnosis or the fear of what was to come.
    I was at work when I got the call and since I wasn’t feeling well anyway, I want home and told my wife…imagine her surprise. I’m the cook in the family, known for my lasagna and chili and my love for fried chicken. Not a baker but I could if I had too. All that just melted into a huge fog.
    Shortly after, I went to the PA and was informed that my panel was so elevated, and that my numbers so off the chart, they were concerned about me be malnourished. In essence I was living off my own fat reserves and they were very quickly disappearing. My iron was rock bottom, my D was bad I had nothing in me is what she said. She put me on a GF diet right away and gave me a list of supplements to start taking all the while cautioning me to be mindful of the contents of each. I was scared beyond belief. They scheduled me with a gastro Dr for an Endoscopy the next month, but the in between time I stayed gluten free and had really begun to feel better quite quickly.
    Imagine my surprise when after a consult with the gastro Dr he said I would have to intentionally gluten myself prior to the procedure!!!!
    They told me to eat small amounts of gluten the week prior to the endoscopy. I did as I was told, with remorse, because I was feeling so much better. I had a hamburger from a fast food joint one night, it was heaven, a few bites of pizza another and the best piece of fried chicken, and my last, I think I ever tasted. The end result was horrible as all the things I had finally been able to get a grasp over came back with a vengeance.
    I told Dr C what I had eaten prior to the test and laughed and said that he had had patients who quite literally eating an entire cake in the days leading to the procedure.
    The procedure was quick and so was the diagnosis..severe Celiacs and no visible villi to be seen, and yes i was malnourished because there was nothing there to help absorb anything…basically I was a slip-n-slide.
    In the year since I have had 2 more endoscopies and making progress. Still have issues occasionally although my biggest concern now is the health of future grandkids. Both our kids have tested negative for Celiacs, but we have been told that our grandkids now run up to an 80%chance of inheriting this disease.
    Thanks for your time. It’s not as incidious a disease as many think. It can be controlled. It may not always be best diet, not all diets are. I just want people, your followers to know that it’s not the end of the world.
    Good luck to all and thanks Gluten Dude for all you do to defend us!

    Reply
  22. 22

    Trina

    I have been round and round with doctors this year. I have had pain and burning sensation in my forearms and backs of my hands off and on since at least last December. Some days my stomach is in knots all day, sometimes I have trouble sleeping, and sometimes I just don’t feel well at all. The only thing that the doctors have been able to find is a vitamin D deficiency. So I have been on vitamin D for about 6 months now.

    I have seen the rheumatologist, ENT, endocrinolgist and my GP. Waiting now for a neurologist appointment – but apparently my GP won’t send my records over so they won’t schedule me. Had x-rays, MRI, tested for Sjogren’s, lots of bloodwork, etc. I’ve asked the doctors about Celiac and have been told all kinds of things. The endocrinologist actually suggested it but then refused to test for it and told me just to stop eating gluten. My GP said it can’t be Celiac and said there were no tests for it anyway. I have good weeks and bad weeks – I haven’t really paid attention if the flare ups are occurring on weeks when I have eaten more gluten or not. So – should I demand a test from one of the above doctors or just stop eating it and see how I feel? Or just find another doctor? I have been with my GP for awhile now and usually have no problems with them.

    Reply
  23. 23

    Penelo

    Hi Trina, it sounds like you are in the UK, if that’s the case, you could probably just book an appointment with the practise nurse for a vit d check and ask her to put a coeliac screen test on at the same time. Don’t need a GP to issue the request slip anymore, or at least I didn’t.

    Reply
  24. 24

    Cyn

    Ok Ok. Having a gluten intolerance and being Celiac can suck. I found out I was Celiac by ending up on the emergency room with gallstones. They gave me morphine. I was blown away. I know why people are addicted to the stuff. I was no longer in pain. I didn’t even know I was IN pain until it stopped. My gluten induced pain was like an electrical charge running over my skin and I was always in pain and VERY bitchy at times. I was watching Dr. Oz and learned the symptoms of gluten sensitivity. I fit all of them. I didn’t need a test, I just stopped eating gluten. My food, my shampoo, my hand lotion, clothes soap, dish soap, everything. And wow, my head cleared up, my pain lessened, my life got better.

    Gluten affects the liver, so many celiacs are also border line diabetics. So, carbs can cause body pain as well. I am now watching my carbs, and my gluten and managing my paid from these things. Its about the body, not just the celia.

    I could of had a better childhood, I might have even finished law school, I might even have made different choices if only the doctors had known. If only I had known, if only, if only, if only. . . “I coulda been a contender. . ” (can you name that movie?)

    So, Celiac sucks. Well, there is no if only, there is only now. I don’t believe in blaming the world for my genetic “disease” – I could blame my family, but what does that accomplish. I also have a little trouble calling it a “disease” because a disease can be cured. Celiac is a not cancer, or sickle cell anemia. It is serious and has a possibility of being life threatening, but – most times, it just needs to be managed.

    I am happy that I found what was my “problem”, and that there are now more gluten free products out in the market. I intend to watch my body and keep it healthy and make sure I can make decisions that keep me getting better.

    So, buck up and deal with it. At least it CAN be dealt with.

    JMO – Cyn

    Reply
    1. 24.1

      Gluten Dude

      Ummm…we are bucking up and dealing with it. That’s what this site is all about.

      Reply
      1. 24.1.1

        Cyn

        and here I thought you supported all comments :-)

        Reply
    2. 24.2

      Cali Celiac

      “…. I coulda have been somebody! Marlon Brando, Raging Bull.

      Reply
    3. 24.3

      Cali Celiac

      “…. I coulda have been somebody!” Marlon Brando, Raging Bull. It’s been 2 years since the post, but I couldn’t let the question go unanswered. Great movie!

      Reply
    4. 24.4

      Cali Celiac

      “…. I coulda been somebody!” Marlon Brando, On the Water Front. It’s been 2 years since being posted, but I couldn’t stand not having the question answered. One of my all time favorite quotes along with “Of all the gin joints in all the towns in all the world she walks into mine.”

      Reply
  25. 25

    dee

    Don’t get me wrong, I try hard to be grateful that I can eat and am getting healthy, but my friends are all about potlucks, everything they do is surrounded by glorious, glutenous, potlucks. I get it, they are really fun, but not for a person with CD. I am glad I have these friends, but it is painful to see so many plates and bowls full of beautiful (poisonous) food that i cannot ever touch.
    My friends are used to me bringing my own food now, but they still pass the bread basket (and all the other foods) over to me and ask me to pass it on ~~and when they go back for seconds, it kills me! I WANT TO SCREAM and CRY and RANT, but i sit there, pass the bread, get up, wash may hands so I can finish my meal. I hate this, i am beginning to resent my friends.

    Any suggestions on what to say without alienating the ones i care about. I am not good at telling people what my needs are unless I am angry and of course that never bodes well.

    I am having a hard time finding any humor in this disease (not to mention all the other diseases likely resulting from the CD).

    If anyone reading this is from the SeaTac WA area and wants to have GF potlucks, pen me.
    Dee

    Reply

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