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43 Comments

  1. 1

    Dustin

    Yikes! scary stuff. Hope they all find a decent doc and get to the bottom of their issues. I can see how it would be easy to mis interpret as some of your following has some truly sound medical advise (what and who to ask ect…) in regards to “celiac disease” and “NCGI”. Must be tough tho because what do you really say… PLEASE, PLEASE GET HELP FROM A QUALIFIED PROFESIONAL!. Hope they at least see this post of yours!

    Reply
  2. 2

    Susan

    I can see why they are asking you for advice. I go to the most expensive celiac doc in NYC and he told me, TOLD ME, that my reaction to garlic and onions is because I’m not eating enough fiber. A celiac specialist. That I paid $500 to see (that was 5 years ago, now it’s $550). His nutritionist also told me that there’s no other type of allergy/intolerance to dairy besides lactose intolerance. My stomach begs to differ on both fronts. It is so frustrating when doctors don’t listen. I thought these other issues were in my head bc the experts said so but finding this blog and seeing how common it is to have other sensitivities reassures me.

    I have had miserable experiences finding a good GI doc who will listen to me and actually test me for other allergies. Still looking. So I think these individuals are turning to someone who actually listens which is sad that it’s not a health professional.

    Reply
    1. 2.1

      Gluten Dude

      “I think these individuals are turning to someone who actually listens.”

      I’m sorry…did you say something?

      Just kidding. I think your point is pretty spot on.

      Reply
    2. 2.2

      Michele

      Susan,

      I too spent over 4k last year on finding out why I was completely covered in an itchy, unbearable rash. I was receiving steroids and unswered questions from my family Doc. I went to Thomas Jefferson Celiac Ctr to be told they don’t deal with rashes because they’re not dermatologists and that it couldn’t be related to my Celiac Disease. I was tested for DH (and cancer and 10 other things) by an immunologist, which was negative and told by a dermatologist that I need to go to a University Hospital because what I have is “weird”. I was put on cyclosporine 10 months later, which shut my immune system down and cleared up my rash. I weaned myself off of it. That’s when I realized any time I eat certain grains and/or get glutened, the rash comes back. A celiac journey is full of ups and downs and some days, unbearably frustrating.

      Reply
      1. 2.2.1

        Kristin

        The rash is what finally tipped me off, too. Mine was minor, like eczema on a couple fingers, but I had never had it before. I was reading a gluten free cookbook that I got for Christmas ( already had some idea this was an issue) and Dermatitis was mentioned and I have been eating gluten free ever since. Only took a couple weeks for the whole thing to clear.

        Reply
      2. 2.2.2

        Karen

        Wow!! How could a coeliac centre possibly turn you away saying a rash is not coeliac-related???? My uncle gets the rash (I get the runs) and I would hate to have to live with that side-effect. I am just stunned that they could turn you away with that ridiculous non-diagnosis. Where did they study medicine and coeliac disease? Off a packet of Corn Flakes?!?!?!?!?! Ridiculous. Glad you are okay now. I can’t believe how little knowledge there is out there about coeliac disease. No wonder people don’t get it!!!

        Karen
        Australia

        Reply
  3. 3

    Hap

    As Dude said, “What saddens me is how little faith so many must have in our medical community that they are asking a blogger for this kind of help.” AMEN to this statement and everything else Dude said. I also agree with Dustin and Susan above.

    It’s funny/ironic/great (choose your own adjective) that Dustin, Susan and I are commenting on Dude’s blog after midnight and for me after 3 am (and I’m not supposed to be here for my eyesight), but just more examples of our allegiance to Dude and this wonderful community he’s created and nurtured here. I thought I would see what was happening here because of a conversation I was part of yesterday that fits perfectly with this blog post while I try to get sleepy again.

    While I was waiting in radiology for my wife, a doctor, repeat a Doctor, sat next to me. This doctor relayed the YEARS & 4 doctors it took for his wife to receive her Parkinson’s Disease Dx last week. Her symptoms were persistently worsening until the correct Dx was finally established. The good Dr’s comment was, “most Drs today are trained to fit the mold, which is set in stone by the drug companies, of how to Dx and treat with medication in cookie cutter style and they are too afraid of being wrong, ostracized and/or sued for malpractice to deviate from the norm to take a chance of breaking the mold and thinking outside the restrictive box when necessary for some patients.” My Dad’s cardiologist recently said, “most people want instant symptom relief by medication and many patients are not dedicated enough to find/deal with the root cause of their medical problems without medication.” I personally don’t like treating myself with medication and I agree with these Doctors because it took Jennifer E on a TV show on Fox News to provide the info for me to begin my personal CD Dx process that ultimately cost $20,000 and involved 5 doctors and searching for many years. And my doctors cared very much and were doing their best, but some diseases are difficult to Dx and take time to figure out. Again, how very important Dude’s (and everyone else’s) educational CD advocacy is.

    Sooooooo Dude you are correct as usual. These seekers above may be very sick and need qualified professional medical help ASAP. As very optimistic about life as I am, CD caused me to suffer from intense suicidal thoughts over a fairly long period of time when I was my sickest. My doctors (and I) found this hard to believe because they’ve known me for so long. I’ve told them when their patients tell them this symptom to take it very seriously along with other CD symptoms. As my body and mind have recovered by being strictly free of gluten during the last 20 months, this symptom is almost non-existent; however, I’ve had 2 friends (1 with terminal brain cancer and one with what he felt was a hopeless personal situation) commit suicide during the last year. As a result of my CD, I didn’t agree with but can empathize with and understand their final decisions more than I ever could have before. As you’ve said many times Dude and IH recently, HOPE is critical to our daily survival. Dude, this Blog and this Community give people HOPE when they can’t find hope elsewhere sometimes.

    Dude, I agree you do not and cannot give medical advice; however, until most of the medical community catches up to the rational informed bloggers and the GF media firestorm continues to burn itself out, you and this very vital informed empathetic Community provide education and hope and are an integral part of the CD Dx process and much needed critical support after the CD Dx. Keep up the life saving work!

    Sooooo I’ve got 2 more 90 minute sleep cycles ahead before I wake up again …. here’s HOPING for a beautiful day today and a healthier tomorrow for everyone!

    Hap

    Reply
    1. 3.1

      Gluten Dude

      Well said Hap. Even more impressive considering it was written at 3 in the morning ;)

      Reply
  4. 4

    Terry J. Wood

    I’ve had people ask me for medical advice at adoption community events. They do this because their own doctors have given up and/or told them that “it’s all in your head”. Sadly some doctors say this when they really mean “I have no idea what’s wrong with you.”

    Like you, I’m not a physician and I don’t give medical advice. I share my experience and I think that’s what helps most. I share the hope that someone can find a doctor that can help.

    I do listen to their story and then I offer them the names and phone numbers of the doctors who helped me.

    Reply
    1. 4.1

      Gluten Dude

      You’re a good man Charlie Brown.

      Reply
  5. 5

    Melissa

    GD,

    Great post. It’s so important to be EXTREMELY clear about what the role of blogger/advocate means. You did that and you might have to do it on a regular basis (as a blog post, not just a disclaimer). A diagnosis (whatever that may be), medical advice, supplement suggestions, drug interactions, mental health concerns, etc. all need to be directed to a medical professional. And in some of these cases you profile, ASAP.

    I’m with you on this, my heart goes out to the folks who are desperately searching for answers. There are good docs and health care professionals out there. Unfortunately, they’re often hard to find.

    Thanks so much for your good humor and support for our community. Sending special love and healing mojo to Mrs. Dude.

    Melissa

    Reply
    1. 5.1

      Gluten Dude

      Many thanks Melissa. I’m having my lawyers write up a disclaimer as I type. Wait…I don’t have a lawyer ;)

      Reply
      1. 5.1.1

        Melissa

        I’ll send you a copy of my disclaimer. You can use that one. Let me know if you need some help.

        Oh, wait, I’m not a lawyer.

        BUT, I have to be very careful in my line of work, so disclaimers are part of my business.

        Onward…
        Melissa

        Reply
  6. 6

    Sue in Alberta

    I can’t say it any better than previously stated (Hap nailed it in the middle of the night, for cryin’ out loud). It’s so tough to muster the energy to wade into the “system” and get help when you’re sick BUT you must. Everything you’re living with is real and don’t let anyone tell you differently.
    It’s so isolating to be sick and scared with no apparent end in sight and I’m sorry you’re there. Make concise notes (symptoms and such) and start from there TODAY. One step at a time, Folks. Stay the course because you deserve good health.

    Reply
  7. 7

    BB

    It makes me deeply heartsick for the individuals out there who have lost faith in their medical providers or do not have the ability to find high quality care. But I’m also concerned for the section of society who don’t know how to advocate for themselves to their practitioners. Feeling ill is an emotional issue but being able to accurately and effectively communicate your symptoms to your physician is important as well. We need to educate ourselves less on the internet and what may be happening to us, and what really is happening and how to tell our doctors this and demand attention and care we deserve. Sometimes I just think we get a little dramatic and that’s a turn off to our providers.

    Reply
  8. 8

    Kara@kompromisedkitchen.com

    Step one: Doctor – daignosis. Step two: GD.com – ranting and encouragement. Done! :)

    Reply
  9. 9

    Lima Bean

    There are so many people calling themselves “doctor” these days – maybe you could call yourself a “Certified Doctor of Internet Blogging”? I’ll charge you $1500 and give you an email that you can print out that says you are certified.

    Reply
    1. 9.1

      Gluten Dude

      Deal…as long as I can pay you in installments. Was thinking one dollar a year for 1500 years.

      Reply
        1. 9.1.1.1

          IrishHeart

          lol Gloria…oh, he may be that all right.

          Reply
  10. 10

    Dawn K.

    After the ordeal we went through with our daughter I can understand the logic. Its really hard to trust a doctor after so many failed us . Our experience was ” pills and bills” ..we were looking for a reason or cause of her symptoms , medical team was quick to prescribe a pill and hand us a bill. I think you are a great listener , Gluten Dude ! Do you take Blue Cross insurance ? Kidding !! Lol

    Reply
  11. 11

    IrishHeart

    This may be long. Please bear with me. :)

    Anytime in the past few years when you have posted one of those “I am not feeling right, what else can it be?” questions, you know I cringe because everyone wants to give advice. It’s human nature to want to help. But that advice ranges from the practical to the outright bizarre. No one should supplement without knowing what their needs are.. No one should spend a fortune on various test kits that are not even valid and do not “diagnose” a darn thing. No one should omit food proteins that are nutritionally sound and beneficial just because some blogger or commenter said “these foods act just like gluten and will harm you!”.

    So much misinformation circulating! Makes me crazy.

    And you and I have discussed this ad nauseum: we’re not doctors and even if we were, no doctor worth his salt would ever, ever diagnose someone over the internet. That’s just malpractice waiting to happen.

    I always temper my thoughts with IMHO and I always urge people to seek medical help. No matter how many times you are disappointed by a doctor, you still need a medical doctor to run tests to get to the bottom of your health issues. Not a chiropractor, not an acupuncturist, not a dentist. This is not easy for me to say with so much conviction. My journey with the medical community—AMA and alternative– was a waste of over $30K …and so many years of my life…. as I went down the tubes. I was the one to figure out it was celiac, but I needed my GI doctor to help establish the diagnosis, give me good follow up care, trouble shoot other symptoms with further tests and help me with my recovery.

    I bring all my concerns to him and if he doesn’t know the answer, he consults others (neurologists, etc) on my behalf. And I am keeping this wonderful man as my GI doc (for now anyway) even though I moved 1300 miles away. I am not breaking in a new one. lol He and I have a bond now.

    I found him by asking fellow celiacs who they trusted and I have sent several more to him.

    I should be the first one saying “doctors suck”, but it’s just not true.

    There ARE good doctors out there. Make a list of your symptoms, write down any questions you have. Be assertive, not aggressive or demanding, but be firm. Don’t leave the office until you have the answers you want. Always get copies of your test results and find a doctor who is willing to work with you.Ask local celiac support groups who their medical advisor is. Keep pursuing what may still be going on inside your body so you can get well. I had to do serious rehab for my muscles, for example, so I got some PT and an MT and a physio trainer and I work hard to get well. I used to just do everything a doctor said and it got me into a fine mess.
    Now, I question everything.:)

    Be your own vocal self- advocate: It’s the only way you’ll ever be taken seriously and it’s the only way you can get back to the business of living..

    IMHO :)

    Reply
    1. 11.1

      Hap

      IH, fine advice from the voice of experience!
      ———-
      “There are three kinds of men. The ones that learn by readin’. The few who learn by observation.
      The rest of them have to pee on the electric fence for themselves.”
      — Will Rogers

      Reply
      1. 11.1.1

        IrishHeart

        “No one can give you better advice than yourself.”
        –Cicero

        and he also said:

        “If you have a garden and a library, you have everything you need”

        Must be so cool to be able to just spit out quotable quotes like that…:)

        Reply
        1. 11.1.1.1

          Gluten Dude

          When I try to spit a quote out like that, usually just spit comes out ;)

          Reply
          1. 11.1.1.1.1

            IrishHeart

            well, you really have to be dead as a doornail for a while before anyone realizes how quotable you really are anyway. Cicero’s friends were not very impressed at all by what he spit out. They thought it was all endless drivel. Told him to “shut it”, gave him noogies, wedgies and such….had no idea how clever he really was…

            :)

            Reply
            1. Gloria @ glutenfreepoodlehome

              Be careful about reading health books. You may die of a misprint. Mark Twain

              Reply
              1. IrishHeart

                my new fave;

                “Don’t believe everything you read on the internet”-Abe Lincoln

                and his picture is right with it. lol

                Reply
  12. 12

    dee

    Very sad state of medical affairs indeed. Can’t imagine anyone asking a blogger (even one as good as you, GD) for a diagnosis, but definitely understand how hard it is to find a doctor who listens, number one, but also who knows all the symptoms related to having CD, sometimes even after having gone gluten free. I hope by continuing to be members of great Celiac support communities, like this one here, they will get pointed in the direction of decent medical care. I also hope they learn how important it is to become an advocate for themselves. I’ve often thought how cruel it seems that a sick person has to fight so hard to get the care they need, but, sadly, that is just how it is for many of us.

    Reply
  13. 13

    John

    GD: “What saddens me is how little faith so many must have in our medical community that they are asking a blogger for this kind of help.”

    Wow, the timing of this is so eerie with this news story I just saw this morning:

    http://www.ctvnews.ca/canada/incompetent-ottawa-doctor-agrees-to-never-practice-medicine-again-1.1931448

    And yes, this was a GI specialist. Yikes.

    Reply
    1. 13.1

      Gluten Dude

      Why isn’t she in prison?

      Reply
  14. 14

    Sour Melissa

    After over a year of being gluten-free and feeling amazing, I started to feel exhausted, achy, and foggy again. I looked for hidden sources of gluten everywhere, trying to come up with anything that might be a problem. About two weeks ago, I found myself in the ER for the first time in years for severe abdominal pain. After two pelvic exams, one CT scan, and more poking and prodding than I’d like to think about right now (and I’m a massage therapist), I still have no idea what’s causing my symptoms. I’m having to trust a doctor again after years of having to be 100% in charge of my own health. The dreaded colonoscopy is set for two and a half weeks away. I’m just hoping I’ll get some sort of answer.

    Reply
  15. 15

    Erin Smith

    Perfect title. In my case, because I lead a support group, people think I have medical experience. I always point them to a doctor first.

    Reply
  16. 16

    cathy

    I live in NC. Home to some of the best hospitals in the world and I cannot find a Celiac specialist. My GI is so behind on things he told me exhaustion, hunger, brain fog, etc that I’ve been experiencing has nothing to do with CD. The only thing (according to him) that has anything to do with CD is GI issues. I wanted to cry. Everyone in my support group is at a loss on where to go. I finally decided after 30 years of being told by doctors that nothing is wrong with me I’m not going to any more docs that know partial info. So I’m going to NY in a month to see Dr. Green. It is such BS that doctors in our country do not get it. If my doc knew anything he would have written me out of work for the first month or two while I detoxed. Now I’m in big trouble with work. All because I was a zombie for a few months.

    Reply
  17. 17

    Chris

    I am a physician and love reading your blog also. I know it puts you in a tough spot but people respect you and your opinion.

    For patients, there are guidelines published recently on celiac disease by Joe Murray and Alberto Rubio-Tapia by the American College of Gastroenterology. If your doctor has not read it, share it. And if he or she is not receptive to reading it, would suggest moving on to someone else . Also there is an organization just formed recently…for professionals interested in celiac disease…www.nasscd.org. The organization is working also to issue more guidelines to help doctors.

    From a doctor’s perspective, most of us were not educated about celiac disease.I unfortunately too have seen many patients who have suffered for years without a diagnosis. I really don’t remember being taught much about celiac during med school..other than it was a rare disease affecting kids and caused malabsorption. The landmark studies using TTG serology came out around 2002 showing how common celiac disease was. I learned about taking care of patients by reading and learning from experienced colleagues. Though it is so common….still recent medical students or graduates still don’t seem to be getting that much more education on the disease. We need to change this.
    Lastly…my bias also is that patients need to see an expert dietitian not just a doctor.
    None of us has all the answers. We should keep an open mind. Don’t get discouraged with all of us. I do believe doctors in general do want to take care of their patients and make them feel better. We just are often crushed for time, are constantly learning, and are human and make mistakes like everybody else.

    Reply
    1. 17.1

      IrishHeart

      This is exactly what my former GI doc said to me, Chris when I kept insisting to him it might be celiac.

      He said “that’s a rare childhood disease of malabsorption. You don’t have that.!!” (and he did not say” and because you’re fat ” although it was implied because at the time, I was overweight and bloated with edema) When my weight plummeted 90 lbs. and my hair fell out and I had neuropathy, etc. he called me “anorexic”
      on medical reports.

      My new GI –very celiac savvy but only because he really had no choice because he had so many patients coming in with celiac–agrees with you. CD is not really taught in medical school and
      he actually loves it when I bring HIM Pub Med articles to read.
      He simply does not have time to find them himself.

      I have tried to keep in mind that “doctors are human and make mistakes”, but it does not really give me–or anyone else I know who suffered for years–the time and money and jobs and spouses we all lost back. This happened because so many of those docs were too lazy to follow through and get to the root of the problem. They symptom- treat and this is what keeps people sick and incapacitated. I try to practice forgiveness, even for my former PCP doctor who watched me going downhill for 3+ years as he scratched his head in confusion sending me to dozens of specialists. I nearly died and my brain was fried. The kicker? his own children have celiac, but he claimed he ‘did not know how it manifests in adults”.

      You , however, sound like you’re pretty well informed. Thank you. :)

      Reply
  18. 18

    Chris

    Irish Heart…agreed it does not give you or anyone else anything for the years they suffered and things lost. It is terrible and I don’t mean to minimize it all.
    I do think there is a role for intervention in medical education however. Perhaps a campaign to increase celiac disease education in medical school via contacting leaders in curriculum? Also for organizations like American College of Physicians to include more on the disease…Hard part is..many MDs may not attend these conferences. For the GI Boards…most celiac patients would be happy to know celiac disease is a popular topic..the basics at least.

    Reply
    1. 18.1

      Hap

      Chris, thanks for your kind concern & comments!

      AGREED: “None of us has all the answers. We should keep an open mind. Don’t get discouraged with all of us. I do believe doctors in general do want to take care of their patients and make them feel better. We just are often crushed for time, are constantly learning, and are human and make mistakes like everybody else.” I have some great Drs who really do care, but who have only so many hrs in the day with so many patients & govt regulations.

      I easily remember some of my Torts exams from law school & the Bar Exam 30 yrs ago this month. So now that I’ve endured CD, related cancer & retina falling apart from CD, I would enjoy writing a bit for the GI Boards’ popular CD topic for the benefit of our future physicians and their patients.

      My young GI Dr is a keeper. My nurse practitioner asked whether I minded seeing a young doc and I said happily. My NP added, since I had cancer at the time, “that’s good, you know some of the older ones figure you’re going to die of something anyway so they might not be as diligent as a younger one finding something difficult to Dx.” 20 months later I’m GF and cancer free!

      Thanks again for your caring & concern. Keep on faithfully “practicing” and I may award you the “John C Neill Award”, a very caring neurosurgeon who just retired 6/30/2014 with a story for another day.

      Best regards,
      Hap

      Reply
  19. 19

    dee

    One of the biggest issues we have right now, in my opinion, is there is no pharmaceutical to help control this disease and, just from my 30 some odd years of trying to figure out what was wrong, I came to the conclusion that if there is no pill to fix it, most doctors are not taught about it and really can’t spend time learning about it. And that seems to have gotten worse since the insurance industry took over healthcare. But the other issue is that the disease has so many different manifestations. There is no “set” of symptoms required to make a diagnosis. Not all Celiacs are wasting away to nothing, as IH pointed out. At one point, I was almost 100 pounds overweight. Of course, my thyroid had been nuked and I wasn’t able to use the replaced thyroid hormone they gave me, but every doctor I went to blamed every symptom I had on my “needing to push myself away from the table” or the fact that I just “needed to go on the duct tape diet”. Real words from real “doctors” with MD behind their names. I never ate a lot of food, because eating food made me sick. And I was extremely physically active, in spite of how crappy I always felt. Yes, there needs to be more awareness in the medical profession, but until the medical profession gets that we aren’t hypochondriacs just because they don’t know what is physically wrong with us, I fear that awareness is far off. Wish there were more docs like you, Chris, but sadly there aren’t.

    Reply
  20. 20

    Kevin Kenny

    Wow, some wild stories. After being diagnosed with celiac disease and ulcerative colitis and crohns disease, I learned that gluten is everywhere meaning toothpaste, shampoo, lotions and of course many foods and snacks you would not think of like licorice and so forth.

    First thing I learned was that if you are gluten free and then eat something with gluten (let’s assume it was accidental) it takes your body 6 weeks to recover from this one incident. Think about that. So if one cheats say once a month then eats properly, you never really get to heal properly and will have signs and symptoms along the way.

    One key thing to do when going off the normal processed foods is to take many vitamins as the disease interferes with the ability to absorb the nutrients we all need. That could explain the “foggy head” or why one is “tired all of the time”.

    Just remember that gluten is poison to our bodies and should be eliminated at all costs. When it doubt, do not eat it. Two minutes of pleasure (say having a slice of pizza) is not worth being down for the count for a week, a month or at times several months.

    Good luck!
    Kevin

    Reply
  21. 21

    Becky

    I feel so bad for these folks! I live in a large city with plenty of health care options, I am assertive and optimistic, and I went undiagnosed for way too long! I saw two different gastroenterologists on my city’s “best of” list; one told me I had “non-typical IBS” and one that it was stress/all in my head. In other words, they had no idea what was causing my symptoms and didn’t care to find out. I was given an IBS drug that made everything worse, and my refusal to take it resulted in the doctor saying I “wanted to be sick.” Nice. Needless to say, I never went back to him. Neither doctor ever mentioned celiac or gluten intolerance (or any other food intolerance). After I self-diagnosed from the internet and went to the doctor who is the advisor to the local celiac support group, she said, before any testing, “it is clear just from your medical records and what you were telling the doctors that you cannot eat gluten.” I think the advice of finding a doctor who works with a celiac support group is good.

    Reply
    1. 21.1

      Robin

      It isn’t only Celiac patients who need to wade through acquiring medical self-education. This is my second autoimmune disorder. A very caring doc told me with my original (rare) dx, that we as patients should specialize in whatever disorder we have, and that we should! because a specialist is a generally a one-system expert; very few have the luxury of being one-disorder experts. Autoimmune problems are so difficult because they are often multi-systemic and really require a team approach, which isn’t how medicine here is set up. You need to vote yourself team captain and researcher-in-chief. It’s not fair, we should not have to what with being so sick, but ultimately we owe it to ourselves.

      Reply

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