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62 Comments

  1. 1

    Jennifer

    I’m sorry that is what you had to hear from someone. I was diagnosed with celiac in June and found your blog right away after starting to search for info on what to do next. I found your blog helpful, supportive, funny and understanding. I have never taken from it that you make a clear distinction between those who are gluten intolerant and those who are celiac diagnosed. I have taken from it that you are annoyed with those who go gluten free for no apparent reason other than it’s the trendy thing to do but that’s it…never any ill will towards those who really think there is something to the fact that gluten makes them sick. We all do what we have to do to feel better and we know, we have an instinct. I stopped gluten shortly before I got my official diagnosis (blood & endoscopy) because I felt I was getting no where with my doctor…I knew there was something up. The last thing I wanted to do was give up my beloved carbs. I’ll still be here commiserating, laughing and getting informed as you blog on!! :-)

    Reply
    1. 1.1
  2. 2

    Jamie K

    “It sounds to me if your kids don’t have celiac…they certainly have NCGS.”

    I kind of wonder if she read it as “It sounds to me like your kids don’t have celiac…”

    You know? Ah well. Like you said, you can’t please everyone!

    Reply
    1. 2.1

      Gluten Dude

      Yeah…thought the same thing. But the venom…I mean…geez.

      Reply
  3. 3

    Catherine

    I’m not going to lie. There were a few times when I read your blog posts that I perceived you as being celiac-elite, as if NCGS was something you scoffed at. But I appreciated your posts, which are quite witty, and after some time, I saw some reference to the non-celiac gluten sensitivity. As time went by, I decided your blog is about you being celiac, so we NCGS are lucky if we get a minute. What disturbs me in this email is she isn’t getting a concrete diagnosis for her kids. As someone who’s been told I don’t have a real problem, that won’t kill me (like celiac), even if it makes me feel bad, I would want to know what problem I have. As the kids grow older, won’t it be easier for them to be careful about food and have other people respect their dietary restrictions if they have a concrete diagnosis and designated treatment? An endoscopic biopsy is pretty simple, and it can take months to heal damaged intestines. If her boys were younger, I could see why not getting one done, but what in the heck is her pediatrician doing? They tested bloodwork for genes, and I assume antibodies, but not a concrete diagnosis? Certainly, if gluten makes the kids sick, do not reintroduce it now, but call me a weirdo, if I had a disease, I would want to know.

    Reply
    1. 3.1

      Gluten Dude

      “There were a few times when I read your blog posts that I perceived you as being celiac-elite, as if NCGS was something you scoffed at.”

      Really? Man…I seriously need to watch myself if this is how I’m coming across.

      As far as getting the official diagnosis, it is such a personal choice that I never try to give an opinion on it.

      Reply
  4. 4

    SueS

    Love you, Dude~~and now I am in my happy place to go teach 2nd grade today. :-)

    Reply
    1. 4.1

      Gluten Dude

      Fallon and Sesame Street will always put a smile on your face.

      Reply
  5. 5

    Adrianne Gentleman

    Oh dear, I think she read only one sentence, and took it completely out of context. I’m officially NCGS, despite having both genes and getting really sick when I eat gluten. I have always found this blog interesting, supportive, and informative, perhaps she needs to stop and read a little more slowly, your reply was supporting her.

    Reply
    1. 5.1

      Gluten Dude

      So you don’t have celiac and you’re still here?? ;)

      Reply
  6. 6

    Jamie

    Cheer up gluten dude! We love you and you are invaluable to our community. That woman clearly can’t read and what can I say, women can be crazy. Especially when it comes to their children. Although why she would seek you out to attack you I will never know.

    Reply
    1. 6.1

      Gluten Dude

      One of life’s great mysteries…

      Reply
  7. 7

    Musicmidget

    Nope, you sure can’t please everybody. Seems pretty clear to me what you were saying. Maybe she has a little misdirected gluten rage herself?!?!?

    Reply
    1. 7.1

      Jody

      Exactly what I was thinking. Her kids carry the genes–she probably is an un-diagnosed celiac herself. Celiac rage is real!

      Reply
  8. 8

    Kj

    It sounds like she zoned in on the snippets that she wanted to to support her feelings. Kinda like when they use quotes politicians said against them by using it completely out of context.
    I’ve been following you a couple of months and read a lot of the post from before that too. I always thought you were very supportive of NCGS. It sounds very much like the quotes she used were from rants about people not taking gluten sensitivity and celiac disease seriously because of people using it as a fad diet.
    Really not sure why she took offense to the quote about people who are not gf for medical reasons making it hard for us to be taken seriously. Even if they don’t have a diagnosis but cut it out because their doctors recommended it and/or they get sick when they have it, isn’t that a medical reason? That one was clearly aimed at fad dieters. It sounds like she’s just feeling insecure about her choice to not get an official diagnosis (which is totally in her rights and I understand not wanting to get your kids poked and prodded!) and that people won’t take her/them seriously because of that choice.

    Keep doing what your doing! There’s always someone to try and take you down because they’re upset or feeling insecure. It has nothing to do with you!

    Reply
  9. 9

    Susan

    I am pretty sure the only people you berate are those who say they are gluten free to the waiter, ask for a gluten free menu, order from it, and then order a bud light.

    Keep up your good work. You are helping most of us!

    PS– get ready, NPR All Things Considered is talking about today’s wheat and “going gluten free” this afternoon. I look forward to your review of the segment.

    Reply
    1. 9.2

      Claudette

      Ooh… fresh meat! Can’t wait to hear what the Dude things on that one!

      Reply
  10. 10

    Lisa

    I don’t have Celiac Disease, but am gluten intolerant I never feel you put us down..I only had the blood test, and that was negative… If you know anything about the blood test people can get false negatives….My doctor lives by the blood test so I could have Celiac Disease and not know it..

    Reply
  11. 11

    Camille

    I was one sick girl when I found your website – my bloodwork for celiac was off the charts, my nutrient levels were LOW and my organ levels were wonky… my doctor said – you have celiac then it took me four months to get in with the GI doctor she wanted me to see. He said you have Celiac but in order to biopsy and make sure you have to go back onto gluten – I said NO THANK YOU and never looked back. He saw no reason for me to do go back on gluten. Six months later – blood work all started coming back inline however, I was still not 100%.

    Enter Gluten Dude and IrishHeart – did I have the same story? No. Do I agree with everything I have read from them? sometimes yes and sometimes no. Have I ever felt like a second class citizen on this website? NOT ONE TIME. Did they make me feel better? ALWAYS Did I find a place where I feel normal? OH YEAH!! Have I found tips to help me on my journey here? Almost every single day. Have I ever skimmed because I just didn’t think the message fit where I am in my current journey? Of course!

    GD – as I have said before – I love this place – I love it even when people go a little bonkers. I am sorry that feelings get hurt and I am sorry that tone and meaning are sometimes lost in these comments but I am very appreciative of all the opinions and information that is distributed via your blog.

    I truly believe everyone is here for the right reason and that everyone just gets frustrated from time to time because they don’t feel good- in fact sometimes it is nice to have someone in your life that is SO STRONG that you can get upset and know you can alwasy go back the next day!

    Anyway, I have always seen you extend the olive branch (like above) and I appreciate that about you too!

    Here is to a better today! :)

    Reply
    1. 11.1

      Gluten Dude

      Many thanks Camille. Today is indeed a better day.

      Reply
  12. 12

    Pepper

    Honestly it sounds like she is dealing with something and decided to take it out on you. Moms can be over sensitive to stuff and decide that they have to create their own campaigns against whatever they feel is important to them. Her campaign is obviously that Gluten Sensitivity.

    I could tell you horror stories of dealing with moms that have seen do this kind of campaigning. And my kids are young.

    I would say good for you for even replying to the first email. She obviously will not hear anything you say in reply or will take it as a personal attack. Time to say it’s not you, it’s her.

    Reply
    1. 12.1

      Gluten Dude

      That’s George Costanza’s line! ;)

      Reply
  13. 13

    Rachael

    She sounds like an angry, fed up Mom and while I can have compassion for her, I also can’t imagine talking to people that way. I just returned from the International Celiac Disease Symposium and there is a lot of attention being paid to researching NCGS and trying to come up with a protocol to reach that diagnosis. I feel for those people and I’m sure there are people in that category that have Celiac and don’t know it. At the same time, I have been judged by NCGS people or GF fad dieters as being “too strict” with our lifestyle. Some NCGS people don’t get Celiacs and I’m sure some Celiacs don’t get the NCGS and the fad dieters may not get either group, but the Dude is one of our best advocates and by “us” I mean anyone who has to adhere to a strict gluten free diet. NCGS and Celiac Disease are two very different diseases in regards to intestinal lining damage, additional complications and even life expectancy but the symptoms and the treatment are the same so chill. I hope that the Mom can find some peace and realize that while validation is important, it really doesn’t exist even within the celiac community. Oh, and Dude…….you blog because you care and it shows so don’t ever stop (well, you can stop when there is a cure).

    Reply
    1. 13.1

      Cynthia Laudet

      I’m not sure if you meant to lump NCGS with fad dieters who think that celiacs are being too strict with their diets. I really hope this is just a mistake on your part. That’s not the case for everyone with NCGS. I have NCGS, no trace of celiac disease, but I was tested after going grain free for nine months. I am extra strict with my diet (Specific Carbohydrate Diet) or I end up in a bathroom for most of my day. I do not eat processed sugars, grains, wheat, corn, potatoes, grains, etc; or the chronic diarrhea, gas, migraines, eczema and panic attacks will return en force for me. Being grain-free and following a strict diet is not a matter of choice for me, it’s a necessity to live a semi-normal life.

      I didn’t make the connection between wheat until I developed a rash/fatigue after using beauty products with gluten in the. I can’t eat out at social functions, because I don’t know if there will be a food that will cause my gut to react. This causes too many awkward moments to count. I’ve learned I can’t eat seemingly safe foods the hard way, by eating dishes that ended up making me sick. I have to know the source of every item I eat and its ingredients; therefore, I have to make the majority of my food from scratch – ketchups, mayonnaise, etc (save for those items proven gluten, sugar and starch free). I can’t even have many “gluten-free” products because they contain starches like potatoes, corn, xantham gum and other items.

      I can relate to celiacs, because I can’t just eat whatever I’d like to, Yes, my symptoms might not appear immediately like celiacs (with severe gut pain), but within days (with a small exposure) I get the bloating, and within weeks, my body reacts with severe eczema, back rashes, migraines, bloating, gas, severe diarrhea and balance issues.

      Reply
      1. 13.1.1

        Katieb

        Cynthia,

        YES!!! This is exactly how my family of 4 lives!! It is now Thursday, and we are finally feeling a bit better after eating a Certified GF raw goody on Sunday—not SCD legal because of maple syrup, so we are paying tremendously for our indiscrection. It sucks—there is NOTHING from a package that we can seemingly eat safely. And I can relate with what you say–it’s just our way of life–a fact of our life. Tough, isolating and expensive–but the only way to stay healthy. Our daughter is 21, in college, and lives in her own apartment in order to cook for herself in order to stay healthy enough to actually finish college. Our son (18) will be living with her, attending the same college next fall due to the same extreme sensitivities and SCD diet—even though Yale University and others are actively trying to recruit him because of his homeschool high school record. He gets SO sick from certain foods, he is not willing to even chance it. Basically, gluten makes our kids Hemopheliac—even though even the eminent Dr. Fasano had no answer why for us. If we could all eat regular GF—our kids especially could shoot for the moon! But as it is, our diet is a true disabilty as far as travel etc. Good to know we have company in this world!

        Take care ;)

        Reply
      2. 13.1.2

        Rachael

        Cynthia- If you notice, I consider there to be three different groups. I don’t understand the competitive nature between the groups. There seems to be a diarrhea war of sorts and I don’t get it. I’m trying to develop a thicker skin in situations where people question or doubt just how tough this disease is. I often wish that I, as well as my two daughters, were NCGS so that I wouldn’t lay in bed at night and worry about liver disease, infertility, ….the list goes on and on. At the same time, I read about CD patients with refractory celiac and thank God nightly that we are free from that existence. Perhaps there should be a wink, or secret handshake for not only CD patients but also the NCGS folks who, although have a different disease, deal with similar symptoms and know the daily routines of avoiding lipstick, separate toasters and checking labels like a maniac. That is what we have in common.

        Reply
  14. 14

    tim

    I’m grateful for your Twinkies blog and ensuing discussion, and the Bob’s RM stuff, and, well all of it, including this one this morning, because it’s all dedicated to the sharing of information about our disease, and discussions about going through life with it. I’m optimistic that we get a decent sense of what fellow celiacs, NCGIs, and the like feel about things, and where we all stand on these pertinent issues.

    This is why I read the GD blog, at any rate. Stay informed, and up to date on what’s going on. Hear people’s stories, with ongoing updates in many cases, including GD’s, and be reminded that I’m not alone in my daily struggle at all. Keep it all in some sort of perspective; because as Rachael alluded, validation is hard to come by.

    It’s good to hear it “out loud” that we are susceptible to being rubbed the wrong way, but we try to make sense of it, and move on with some hopefully expanded understanding. The comments today have been thoughtfully supportive of GD and the angry mom, just as GD was fair in blogging his facts as well as feelings. This is a beautiful thing. If the mom of two celiac/NCGI boys that is stuck at the stage where a dx seems out of reach, has this realization also, then it’s yet another small victory.

    Reply
  15. 15

    Stacy

    Ouch!!!! sounds like she’s having a really bad moment and unfortunately doesn’t have an edit button! Talk about being misunderstood wow! Ok, first “love your style of presenting information it allows for free thinking and opens the doors to conversations that might otherwise be left unsaid” I have many great quotes from a few I admire but I will only leave you with two “To succeed in life you must have the courage to be hated” if you’re going to do anything great in life there will be opposition, setbacks, delays and critics” let’s face it, it’s not easy being above average lol!!! Hugs and Gluten Free Snuffaluffagus slobbers

    Reply
  16. 16

    Katieb

    She is totally directing her rage at you, unfortunately! I understand her frustration at the whole Celiac/NCGS distinction because it’s obvious gluten damages more than just the intestines and I have a feeling that medical science will eventually accept this and it will all be called a ‘disease’ under ONE umbrella, but you certainly shouldn’t be her punching bag for her anger-outlet. There are many divides in the whole Celiac/NCGS community unfortunately—those that stick by the old ‘gold’ standard for diagnosis vs. those that don’t; this diet is better than that diet—this makes me sick/this doesn’t make ‘me’ sick so it’s safe—so it can be a frustrating journey. The research and knowledge about this condition are still in their infancy though—and I have full confidence that within 20 years we will have answers to SO many of our frustratingly unanswered questions. Until then, I think a bit of grace under pressure and communal respect for everyone’s different walk with this awful condition is called for—oh—and staying off the computer when your p*ssed off at the world!

    Reply
  17. 17

    Claudia

    I for one am appreciative of your blog. Okay so you don’t like gluten free twinkies. Oh well so what. We are all entitled to our preferences and opinions. I might try one for fun. I have developed a better attitude since reading your blog. So have a happy day and lots of love to ya and everything you do for the Celiac community.

    Reply
  18. 18

    Andrea F

    Good morning Dude!
    First off, let me say I love you for posting the Sesame Street Song. It brightened my morning right up!
    Second, I have celiac disease. I was diagnosed with a blood test, and no biopsy. I feel no need to have anybody go in and take out a snippet of my anatomy to provide a gold standard diagnosis. Maybe if I had some gold to spare…
    Third, I think this woman is misguided and is not reading clearly what you are saying. Whether her sons have an “official” diagnosis of celiac is immaterial. They are gluten free for their health. Period. You support that and have said so many times. Those of us that read all your posts know that.
    Fourth, a question… if you have the genes for celiac, doesn’t that mean you are supposed to go/remain gluten free? I mean if you have the genes for it isn’t that a positive diagnosis? Or is she saying that without the biopsy they won’t give her sons the diagnosis? If that’s the case, I guess I don’t really have it either. But I’m really glad my doctor didn’t feel the need to have a “gold standard” test!

    PS Cookie Monster was always my favorite – kind of ironic, no?

    Reply
    1. 18.1

      Gluten Dude

      Thanks Andrea. And in answer to your question, having the gene is not the same thing as having celiac. That was actually just discussed at the ICDS in Chicago a few days ago. It means you may get celiac disease but not that you have it. Pretty sure I have that right.

      Reply
      1. 18.1.1

        Aloha Julie

        You do have that right.

        From NIH: “There is a strong genetic predisposition to celiac disease, with the major risk attributed to the specific genetic markers known as HLA-DQ2 and HLA-DQ8 that are present in affected individuals. Dietary proteins present in wheat, barley, and rye, commonly known as glutens, interact with these HLA molecules to activate an abnormal mucosal immune response and induce tissue damage.”

        I also read recently that if you have the genes HLA-DQ2 or HLA-DQ8 does not mean you will get celiac disease, however, the absence of these genes may help exclude the diagnosis.

        GD, I never thought you had any kind of preference to whether someone was gluten sensitive or celiac. You just called on the ones that make a big deal about being GF at a restaurant and then want the basket of warm delicious rolls right out of the oven. Which makes those of us that are NCGS and celiac misunderstood and not taken seriously.

        This woman clearly has mis-interpreted your cause, esp. after you were so kind to respond to her.

        Keep doing what your doing. There are too many of us out here that need you.

        I love Fallon and Sesame street. Have you ever seen him imitate Neil Young? He is awesome.

        (IH, I am trying to avoid run on sentences. How’d I do?)

        :-)

        Reply
  19. 19

    Nancy

    We’re all good here. If Miss “I hate you because you have Celiac and we don’t” doesn’t like the content in here, she’s certainly welcome I’m sure at Gwyneth Paltrows goop website. Go for it honey!

    Reply
  20. 20

    Frances

    Well I have read this blog for sometime now but never commented but this time felt the need! To explain my story, I have been eating on and off gluten free for 14 years after an osteopath diagnosed me as having a possible intolerance. I ALWAYS felt considerably better when I didn’t eat it and appalling when I did but never stuck to the diet properly (yes I know, I know!!). Over the 14 years I have asked doctors about my symptoms (about 15 of the main ones that disappear when I go GF) only to be dismissed every time. However, recently I decided to make the effort to get a diagnosis and found a doctor who listened (although frankly knows next to nothing about the illness – I won’t bore you with the misinformation she gave me). Had blood test today and awaiting results although I am sure it will come back negative as I have only been eating it for 4 weeks after a long period GF. Anyway to get to the point, I love reading your blog because you are one of the few coeliacs (spelling? – I’m English!!) who don’t look down your nose at those of us who are made so ill by the stuff, but can’t get a diagnosis so have to contend with the Gluten Intolerant label, only to be lumped in with the fad dieters/fussy eaters! Don’t be disillusioned by this woman’s annoying email, as you really help. The internet is a god send as when I first stopped eating gluten all those years ago, gluten free was barely heard of but sites like yours are great for sharing rants and information. By the way, I had breast cancer two years ago which really focused my mind to stick to my diet (it is my belief that my illness was exacerbated by being Coeliac/Gluten intolerant and damaging my body by continuing to eat gluten), and I no longer wish to put a strain on my immune system. I also persuaded my 84 year old father to go GF and his lifelong asthma disappeared and my 23 year old son who has been dismissed by doctors for two years with terrible stomach problems is two weeks into the diet and feeling great. Sorry for such a long rambling comment but felt the need to thank you for NEVER discriminating or dismissing we non diagnosed ones and thought I would give some background to my story and why I think your site is so great – please don’t give up your efforts.

    Reply
    1. 20.1

      Claudette

      From one gluten-intolerant breast cancer survivor to another… I hear you, Frances. I have wondered the same thing many times myself. I don’t know if you had weight fluctuations in relationship to your gluten sensitivity, but I was told that there was a possibility that, because fat does strange things to both estrogen levels and the immune system, and because I lost 46kg after going GF, that going GF and losing weight may have combined to trigger cancer growth. However that is complete speculation based purely on anecdote and chaining together known literatures. And if your tumor was not estrogen-positive, this throws this reasoning right out.

      In any event – we’re both in the sisterhood of the surviving. And c(o)eliac does mate it more interesting.

      Reply
      1. 20.1.1

        Frances

        Hi Claudette and thanks for your response. Yes my cancer was indeed oestrogen fuelled so the theory you mention is an interesting one. Although I have always been slim, I lost alot of weight when I first went GF and never went back up to my pre GF size. My theory, which is rather simplistic and entirely my own (!!) is that it is known that when you have Gluten intolerance/Coeliac your body cannot properly absorb certain Vitamins, esp D and K. Both are helpful in cancer prevention and deficiency in K can lead to calcification of the soft tissues, I had calcification of the breast tissue that had developed into a tumour. In addition, when eating gluten filled foods, your body is under so much stress, hence symptoms all over your body, that it must be putting enormous stress on your immune system and affecting cells. Also breast tenderness (an understatement) is a joyful symptom of mine but virtually non existent when I stick to GF. All this makes me believe Coeliac/GI is the culprit in developing BC relatively young (49). I will be vigilant in my GF diet from now on (even if my theory is all wrong!) and hope for the best. Good luck nice to chat.

        Reply
        1. 20.1.1.1

          Claudette

          Definitely – and I was young, too (43). It is all so complicated… and I do wonder if having had one cancer now makes me likely for others, especially of the celiac-related variety. As if there’s not enough in my life to monitor… best wishes for ongoing cancer-free recovery!

          Reply
  21. 21

    Jersey Girl

    GD-

    Meh. You will always get people that can never just see the glass is half full. It comes down to this. We can’t eat gluten, we are all on the same bus here. It sucks. But it isn’t as bad as some people have it. This blog rocks, if we all agreed on everything it wouldn’t be the same.

    Keep kicking ass-
    Jersey Girl

    ——————————————————————————-

    “Been to hell and back
    I can show you vouchers”

    “No Love”
    Eminem

    Reply
  22. 22

    Claudette

    Goodness… I think those of us who are regularly on here at one time or another have provoked each other at some point. I think that’s what makes us a community – community doesn’t come from a unified front, but by being with each other even in our differences. And there are much bigger fish to fry – the things that unite us are bigger than the things that separate us. Do we want answers, especially when we see the people we love suffering? Abso-freaking-lutely. But unfortunately we all have this tendency… in our moments of pain and frustration we lash back at the people who are the most supportive because it’s safer than the alternative. I hope she is able to find both answers and peace. But unfortunately you usually only get one or the other.

    Reply
  23. 23

    shelle

    Glad you are back in your happy place :) People are in pain and feel unseen, misunderstood and unfortunately holding on to that pain can make them unable to see when someone actually is seeing and understanding them.

    Keep your authenticity – it is refreshing, informative and witty! You will always have lovers and haters – feeling the need to please the lovers or calm the haters will take you off center. Blog on!

    Reply
    1. 23.1

      Sue in Alberta

      Couldn’t have said it better, shelle, so I won’t even try. “smiley-face -waving icon”

      Reply
  24. 24

    CM

    I am gluten sensitive and was misdiagnosed for many many years. I found this website while searching for answers that I could not get from Doctors. I find you to be supportive in every way but thats just me. I’m sorry that happened to you. Love the Sesame Street video!!!

    Reply
  25. 25

    Dara

    I have NCGS and there were a few times when I first found your blog (can’t remember which posts) where I felt left out of the Celiac club and not worthy of complaining about how devastating gluten is for me. But then realized that was just my stuff being projected onto you and got a good laugh at myself. You do a great service to the community of all people who suffer from ingesting gluten and I thank you for putting yourself out there. For sure, bloggers make themselves targets for all types of misplaced issues – anger being a huge one. I’m about to relaunch my blog and sometimes have second thoughts when I see the venom that is spewed online. Thanks for hanging in there and blogging on. You’re an inspiration.

    Reply
  26. 26

    Lori2

    Long time reader, first time poster.

    I can understand where she is coming from. I felt the same way for the first few weeks. In one of the first posts I read you said (or I understood you to say) that Gluten Intolerance was not a serious as Celiac because the long term consequences of intolerance were not as serious.

    Perhaps NCGS does not cause cancer like Celiac could, but I don’t consider my severe osteoporosis or burning feet from neuropathy a walk in the park either. I watched my mother die from her osteoporosis—ribs that would crack spontaneously, hip that broke from just standing up the wrong way. I’m not sure cancer would be any worse. But these are the consequences that I’m left with. And I am sensitive enough that one crumb is enough to leave me with the toilet and a bucket for three days.

    Communicating by the written word often leaves a lot to be desired. It’s easy to jump to wrong conclusions. After reading for some months, it’s easier for me to see where you’re coming from, so I don’t tend to get upset with you anymore—at least not very much.

    That being said, I appreciate your blog, your efforts are very worthwhile. Love you even though you’re not perfect. Perfect people are hard to love.

    Reply
  27. 27

    Lea

    My official diagnosis is NCGS. I had been off gluten for at least 6 months before I’d gotten around to getting tested for celiac disease. My test came back negative and my PCP suggested that I go back on gluten for a couple of weeks and retest. My answer to that was “oh HELL no!”. She laughed good-naturedly and gave me the NCGS diagnosis.

    Honestly? I’m satisfied with that. I know a lady who got a celiac diagnosis and her health insurance premiums were jacked up by 600 dollars a month. She’s terrified to lose that insurance for fear that no other company will insure her in the future for the dreaded “pre-existing condition”.

    I’m sorry the the mom couldn’t accept your apology, but sometimes Mama Bears get irrational when it concerns their cubs :)

    Thank you for the blog and know that I appreciate the information and humor that you share with us.

    Reply
    1. 27.1

      Lori2

      I have relatives who should be tested but refuse because of “pre-existing condition” designation they would end up with. Even if you will be able to get insurance under ObamaCare, they don’t want it on their record.

      Reply
  28. 28

    Lisa Mims

    #$%# People should not be mean to you.

    Speaking as someone without the genetics, but with a small amount of damage, even fifteen years after going gluten-free–um, I think at some point the diagnostic question will be, “Does gluten make you very sick? If so, don’t eat it, because you have a gluten-intolerance-celiac disease continuum disease.”

    You read that right. I failed the genetic test, but I’ve got Marsh Level 1 (increased white blood cell count) villi, so I got the magic celiac diagnosis.

    I doubt that they’ve got this all figured out.

    Reply
    1. 28.1

      Jess

      Just as an FYI, there was a poster presented at the ICDS from a group of Celiac researchers in Brazil who showed that 9% of patients with Celiac Disease (both antibody and biopsy positive) in their study were DQ2 and DQ8 negative. Thought you may be interested…

      Reply
      1. 28.1.1

        Lisa Mims

        Thank you! My great-grandfather was Argentinian. I think you just explained my family.

        Reply
  29. 29

    JVC

    Sounds like she has “gluten rage” to me. Keep doing that voodoo that you do so well——–dude!

    Reply
  30. 30

    Jess

    I really do have compassion for her, as it sounds like she is doing her best to take case of two chronically ill kiddos and that all that she wants is validation. Although there is slowly increasing acceptance of non celiac gluten sensitivity (NCGS) in the medical community, there are still many doctors who are doubtful that gluten can cause symptoms in people who do not have intestinal damage. We need continue to spread the word about both Celiac Disease and NCGS.
    Gluten Dude, you have been doing a fantastic job of this thorough your blog, and you have built a wonderful support network for all of us. I hope that once her anger dies down that she (the woman who emailed) will feel comfortable returning for some support and realize that we do believe her when she says her babies are getting ill from gluten.
    Jess

    Reply
  31. 31

    Michelle

    It’s stories like this that make me like my dogs more than most people!!!
    You Rock, Gluten Dude!

    Reply
  32. 32

    a-

    i have the official “gluten intolerance” diagnosis but not the official “celiac” diagnosis. and what would i go get it for? the treatment is exactly the same. why go through the trouble/pain/expense of a biopsy for exactly nothing to change?

    here’s the thing… my medic id tag says “celiac.” and you know why? because saying “celiac” gives me a fighting chance of having my need to not consume gluten be recognized. MY EXACT SAME NEED to not consume gluten as any officially diagnosed celiac.

    no one gets “gluten intolerance” or “NCGS” – not even those in the no-gluten “community.” saying “celiac” instead of whatever other variant doesn’t make my life a whole lot easier, but it makes it a little easier, and i’ll take it, gratefully. do the officially diagnosed celiacs have a problem with that? if so… get over it, seriously. if not, thank you for recognizing that when it comes to the life-suck that is a GF diet, we are each other’s best friends and allies.

    Reply
    1. 32.1

      Aloha Julie

      I would do the same thing. You are having the same symptoms, makes sense to me. And I think I can say no one here would argue.

      You are protecting yourself. However, I hate to say it, but having the medic ID tag probably makes no difference. Some A**s Ho*le will not get it.

      I was in the emergency room a year ago after being glutened, and I tried to explain what was wrong, the nurse did not know what gluten was, nor had she ever heard of celiac disease. We all need advocates with us when hospitalized. Or we are doomed.

      One thing going for us is the internet. The nurse looked it up. She was able to tell the emergency physician what was going on, and he was able to administer the meds to stop the pain, diarrhea and vomiting.

      Reply
  33. 33

    Celiac Mindwarp

    I thought you were anti gluten intolerance to start too, though now I am not sure why.

    I think Mama Bear got out of bed the wrong side, got the wrong end of the stick, and proceeded to beat around the bush with it.

    It is a shame, with 2 sick boys she is going to need support.

    If by chance she makes it this far, I’d say stick to your instincts, and go gluten free along with your boys. The whole diagnosis route stinks, doing a gluten challenge to try and get a diagnosis is tough, and not always possible. New methods of diagnosis are in the pipeline, but a way off. There is and extent to which it doesn’t matter if you are celiac or NCGI, NCGS. Gluten free is the answer.

    Dude, I know you are on my team, now, is it your turn or mine for the pompoms?

    Reply
  34. 34

    IrishHeart

    MW –you have possession of the pompoms, as I recall? I could use a little shake of them right now myself. xx
    ALOHA JULES!!
    You did a fabulous job, dear girl!! ;) No run-ons. How’s that book coming?
    CAMIILLE!
    Thanks for the shout out. Love you, girl.

    GD–you know I am tired of being slammed myself lately….and misread and misinterpreted and having my words twisted. Very frustrating. But, as we have discussed, sometimes, being a vocal advocate makes us targets. And yes, it hurts!

    But, in the entire time I have been reading this blog, I have always understood you to be mutually inclusive of celiacs and NCGIs.
    You are not a “celiac snob” and I know it bothers you terribly to be thought of as such.. As I have said often, just shake it off and move forward and hopefully, Mama Bear will re-read what you wrote and see you meant her no disrespect at all..

    The written word can be easily misunderstood.

    Reply
  35. 35

    Jazz

    I am to sick to care about people like this woman today. I would like to think you blog because you find it theraputic and because people like me find it comforting to hear from other sufferers. Being in the one percent with celiac sucks as does everything that comes with it, like the Pneumococcal vacine that I had to get despite being only 32 and yeah I am in the one percent that has an adverse reaction to this to.

    You will never please everyone but I for one am thankful you blog.
    keep up the good work. Back to bed now.

    Reply
  36. 36

    John Licwinko

    Dear Gluten Dude

    You ask “remind me why I blog again?!?!”. Let me say that I appreciate so very much the information that you provide, I appreciate your willingness to state an opinion based on facts, and I appreciate your providing a place for a community of like minded folks. Thank you.
    John

    Reply
  37. 37

    Tiera

    It is unfortunate that reading ability and reading comprehension do not go hand in hand all the time. I, personally, love your blog. You blend the scary with humor and that makes it just a little easier to swallow.

    My youngest son is our resident “celiac”. I put that in quotes because according to the GI, despite testing positive in blood work and having damage to his small intestines (although, his was scalloping which she said is a precursor to celiac) as soon as she tested for the genes and he didn’t test positive for the 2 major ones….she automatically said he doesn’t have celiac. Boom. Just like that. To hell with what the other tests say.

    We’ve been gluten free since the end of July. It’s slow going at this point but he is doing better. From the end of December to July he complained of a stomach ache every.single.day. Was randomly vomiting and apparently has constipation so bad he’s full of poop. And I say apparently because he was probably the most regular person in the house! But I guess he just wasn’t getting rid of everything like he was supposed to. :( Poor kid.

    We did get the entire family tested and we did all test negative through blood work but we went gf as a household because the little guy is only 6 and finding it hard enough as it is. I have seen some amazing results in my 15 year old son as well. He has ADHD and ODD and a multitude of other issues but for the first time in his life he is getting A’s and B’s in all but one of his classes. And as far as celiac rage that I’ve seen mentioned here in the replies, I’m beginning to wonder if that is his issue with the anger as when he’s mostly gf he is pretty laid back and not so quick to anger….and believe me, that is a HUGE difference!

    So, anyway, that you for all that you do here! I csme mostly for the laughs and stayed for the information. :)

    Reply
  38. 38

    Alicia

    I do get that this Mother is a bit trigger happy cause NCGS is laughed at by many. Celiac is something people are just starting to understand and NCGS ends up sounding like just a stupid diagnosis we’ve given ourselves cause we got a negative on the Celiac test.

    The thing is though when I fist got the NCGS diagnose almost 2 years ago I really had no clue how to deal with it or how to research anything cause its not something that is easily accessible in my small little Ontario, Canada town. I was fortunate to have a great doctor to help me out but the other thing I found even more helpful was that even though I didn’t fit into the Celiac community, the community did take me in and helped me to find out a lot of things.

    Gluten Dude you are a solid reference for what its like to live as a Celiac and though your fight is different than my NCGS fight I have always felt like you were there to help.

    I’ve never once thought that you looked down on NCGS if anything you have always tried to help people understand that there is a difference between the two BUT both are to be taken serious.

    Reply

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