Celiac Rant: How Dare We Not Listen to Our Doctor??


It’s no secret that I’m not a big fan of the medical community.

Yes, there are a lot of talented doctors out there.

But in addition to what I’ve experienced in my lifetime, I’ve heard horror story after horror story on this blog about people’s experiences with their doctors.

It ain’t pretty.

A lack of knowledge is one thing, but what galls me is the arrogance of some…ahem…”medical professionals”.

I remember many years ago I questioned a minor procedure a doctor insisted on doing on me.

I knew it wasn’t necessary and I also knew I had to pay for it. So I told him that I did not want the procedure.

He simply said if I was not going to listen to him, he would not treat me.

And then he walked out of the office.

That was over 20 years ago and it still sticks with me.

This leads me to today’s Celiac Rant-of-the-Day.


I’ve been trying to put this behind me, but it keeps making me mad…so I am going to rant a bit and let it go! Took my son with celiac to the emergency room last night because he was wheezing. He has asthma, but it has almost gone away since his celiac diagnosis -but this was fullblown wheezing and struggling for air.

They gave him some breathing stuff to calm his lungs down and then the nurse brought in this wonky looking pain medicine. I asked if it was gluten free (because my son has been glutened before by generic drugs) and she said “oh, I don’t know, I don’t know how you would find that out”.

Yeah, big clue that they have absolutely no idea. So I refused the drug – the last thing my son needed was severe stomach pain on top of the breathing issues.

Then the doctor came in and proceeded to give us a 15 minute lecture about how I need to trust more and my son needs to be less anxious – he even managed to quote Reagan in his little speech. I confronted him on the fact that this seemed to be about questioning the gluten, and he denied it, but you could tell by his “speech” that it was all about him feeling the need to get us sorted out.

Apparently if my son is just less anxious then everything will be fine.

This was my first run in with a medical person who had this opinion toward celiac, and I have huge compassion for those who have to deal with attitudes like this all the time.

A couple positives did come out of the night. I crossed that hospital off my list of places to take the kids if they are in need – I wouldn’t trust them not to give out gluten filled stuff. And my son at the end said “Mom – you were snappy – you yelled at him. Thanks.”

Good for our kids to see that we will fight for them. My only regret was being polite enough to let the guy finish his lecture-I should have walked out.

Thanks for letting me rant!

Need to Vent?

I hate celiac. You hate celiac. We all hate celiac.

With all that pent up anger, people need a place to vent.

Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away.

There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.

Email me your anonymous rant.

Don’t you feel better already??

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43 thoughts on “Celiac Rant: How Dare We Not Listen to Our Doctor??”

  1. Its the God complex. They think they know everything and then on top of that they are rude!! I’ve had my share of these people too.

    You’re an awesome mom! You did the right thing! Kudos for standing up for your child!

  2. I’m so sorry that you had a bad experience, it is especially sad because your child had to witness it. Did the doctor think that a lecture given to mom in front of your son would make him less anxious? Hopefully the doctor you deal with next time is more understanding. I had a great experience a few months ago when I went to the ER of my local small town hospital. I needed two medications and I was very nervous because I am allergic to many antibiotics in addition to worrying about them containing gluten. The nurse got on the computer that was located in my room and researched both meds right there in front of me, checking for gluten ingredients. I expected to be questioned and doubted when it came to the subject of gluten, but instead I was treated with care and dignity which made me feel much LESS anxious.

  3. Good for you for advocating for your child in front of him! Keep him healthy, safe and teach him it’s okay to stand up to medical “professionals”. Excellent parenting under a stressful and difficult sitation. Well done!!

  4. My PCP googled celiac disease right in front of me in the examination room. He had to read on what it was. I was shocked that he didn’t know. Do they not teach that in medical school? I am glad to report he is no longer my PCP.

    1. My mom’s an RN. She said she received about a day’s worth of info on nutrition and related disorders in nursing school. She had heard of Celiac, but didn’t know anything about it. Good grief, one day, no wonder the medical community is so out of touch.

    2. The ama/american medical association, does not train doctors correctly about allergies. If they did, it would take away from their business. People forget doctors are in a business to make money,
      not to heal. People forget doctors have a lot of student loans to pay back and they want to have nice things. There is 1% of doctors who don’t care about the money, but they still have a lot of loans to pay back and have to make a living.
      I have sensitivity to gluten and am off all 10 of my migraine medications. If I would have never tried the celiac diet, I would still be depenndent on a doctor: having to go for routine visits, the doc would still be prescribing medications.
      If I have to goto the doctor for a yearly routine physical,
      A lot, not all, but a lot of doctors will not write CELIAC OR WHEAT OR GLUTEN ALLERGY on my chart! If doctors don’t acknowledge the allergy, they believe it may go away.
      Our healthcare today: our doctors, nurse practioners, hospitals, and insurance companies are paid more money for more diagnosises a patient has. Sad but very true. When a doctor/np is paid a bonus on the level of care/# of diagnosis, it will incentivize them to prescribe more drugs to be able to add more diagnosises.
      If a doctor would appropriately test for food allergies then it would decrease the medications for probably every patient therefore decreasing the diagnosises and therefore decreasing a doctors pay.
      No doctor or any profession wants to decrease their pay.

  5. When I was a kid NOBODY (well, almost nobody) had a clue about Celiac. Especially my doctors. My mom read about Celiac in a magazine article written by Dr. Benjamin Spock when I was a very sick baby. The symptoms she saw matched exactly with what was written by Dr. Spock.

    She asked my pediatrician about the possibility of Celiac, and I’ll paraphrase what she was told, based on conversations with her. This would be in 1961. “Now, now, Celiac is only seen in third world children, you know, colored kids. White babies aren’t susceptible. So stop worrying your pretty little head about it and go home and enjoy being a mommy!”

    She gave me a rice formula which stopped the symptoms, and I got better. I stayed better until at the age of 14, I started having diarrhea a lot. By the time I was 16 I went into the hospital. By this point if I ate anything ten minutes later it had passed through undigested. My doctor (the one I pooed on, ha ha) had given up and told my mom he was going to take out my colon and leave me with an ostomy. Mom said “Hell NO!” and ten minutes later I was in the car heading home. Another doctor in another hospital did a biopsy and diagnosed Celiac. My mom then remembered the Dr. Spock article and became upset at herself, because she had figured it out already, but the patronizing pediatrician convinced her it wasn’t Celiac.

    Since then, I’ve had doctors suggest I try eating gluten to see if the Celiac had gone away. I’ve also been told I don’t look like a Celiac, whatever that means. So kudos to my mom for not letting my intestines get cut out. That would have really sucked.

    1. “Now, now, Celiac is only seen in third world children, you know, colored kids. White babies aren’t susceptible. So stop worrying your pretty little head about it and go home and enjoy being a mommy!”

      Holy crap!!!

      1. “Now, now, Celiac is only seen in third world children, you know, colored kids. White babies aren’t susceptible. So stop worrying your pretty little head about it and go home and enjoy being a mommy!”

        Ironic, since I know someone who was told by their doctor that they were “too brown” to have Celiac Disease. Apparently only white people get Celiac Disease. All of which we know to be completely false! Celiac doesn’t discriminate!

        1. There are no boundaries for this disease.

          “Celiac disease was most common in the Irish population, with about 1 in 300 people affected….1 in 2,000 Canadians, similar to the rates in Australia and New Zealand. We now know that celiac disease occurs in many as 1 in 100 people in nearly every country in Europe, including the Mediterranean region, as well as in North Africa and Asia from the Middle East to as far east as India

          ….. and in countries settled by migrants from countries where celiac disease occurs.”


          That ‘s us–the US! The biggest melting pot there is.

          European and Northern Africa–have the highest genetic prevalence.



          “The prevalence of CD disease in Middle Eastern and North
          Africa countries
          may be underestimated due to lack of awareness and low
          suspicion of the disease”


    2. Umm no stupid doctor. My grandmother was diagnosed with Celiac in the 60s and her doctor told her it was very common in europeans (she is irish).

    3. My G.I. doctor told me I was allergic to Sprue and to stay away from it. I asked him if there was a possibility of me having Celiac Disease. He said, “No, Black people don’t get Celiac.” I lost so much weight in 2 months my pants would fall down. I ended up needing a cane to walk very short distances and my nerve and joint pain was almost unbearable. Thank goodness a doctor in the UK diagnosed me with Celiac and after dietary changes, I no longer feel like I am dying. I call most doctors ” untrained professionals”. Thank goodness you found out!

  6. Are you actually telling me that the doctor refused to look up whether your sons pain medicine ws GF or not? OMG! And NO I am not referring to that a$$hole doctor! I would have said, Excuse me, but do you have internet access? I could take care of that in about 2 seconds!!!!!”. Good lord…these people are supposed to be healthcare professions? Your son had to suffer because they were too freakin’ lazy to look it up? You should have asked the “Doctor” if he would like nice teaspoon of rat poison in the coffee cup that I’m sure he was carrying around with him! You need to write a very long and candid letter to the president of that hospital ASAP and get that balloon headed jerk OUT OF THERE!!!!! I am soooo sorry that you had to go through that bull $hit!!!!

  7. You should have left the title as You Are Not God. I tell you, this mindset is so pervasive, and not just in regard to food allergies. When we were going thru infertitly we had to change doctors several times till we found a lady who listened has a compassionate staff and is open about treatments and such. The lesson here is that no matter what the medical condition, you have to be your own best advocate and stand up for yourself. I would make it a point to inform the hospital about this doctor’s rude bedside manner. If the boy had been gultened, do they not realize that is grounds for a malpractice lawsuit? The hospital surely wants to avoid those?!

  8. While it was a horrible experience, I agree with everyone else – having your son see you stand up for him and for what is right was the best outcome ever!

  9. I’m so sorry this happened. I wish it didn’t but I think it is all too common. I recently moved back to where I’d lived previously (pre-diagnosis) and happily tripped off to my beloved pharmacy to get some Rx filled. The pharmacist and pharmacist tech didn’t know anything about Celiac Disease, weren’t willing to flag my file with the gluten ‘allergy’ label and weren’t willing to provide me the phone # of manufacturer and lot numbers on meds to confirm the GF status. They looked at me like I was speaking a foreign language when I brought this all up?!?! I can’t be the only Celiac patient in this metropolitan area, gesh. Went down the street to another pharmacy where as soon as I mentioned it the tech said, “Oh, we have to flag your file”and then proceeded to ask about other allergies, etc. Guess who’s getting my business?!?! I’m just hopeful that as more people are properly diagnosed we’ll be heard better by those in the medical profession. My PCP is not informed about Celiac but he is more than happy to order any blood tests I ask for and refer me for anything required, I just had a bone density scan. I’d love it if he was knowledgable but at least he isn’t a hindrance to my regaining my health!

  10. I’ve had my share of problematic, egocentric and ignorant doctors. From the first GI who diagnosed me with Celiac Disease (which was correct) but telling me I could cheat whenever I felt like it. Then another GI who told me that I had “mild Celiac Disease” and that my Celiac Disease support group was filled with “paranoid” people. Then ANOTHER GI who told me that I was being “paranoid” and that I needed “psychiatric evaluation.” And my general doctor who told me that some of these health problems might be “psychological.” Well, it turned out after all these doctors said these things that my antibodies were still very elevated and I was very ill. But I had to be making it all up, right? I’m just one of those “hysterical, paranoid” types. And I think it’s even worse for women to be taken seriously. I finally have a great GI but wow, did I have to jump through hoops to get there!

    1. During my three year odyssey of diagosis hell I was asked several times what kind of drugs I was doing, was I having problems in school, had I seen a psychiatrist yet and other nonesense. The worst was my own dad saying I was sick because I was a ‘pantywaist’ and wanted attention, and that it was all in my head. My poor mom and idiot dad fought constantly that entire time and divorced two years after the diagnosis.

      1. Ugh…sorry David. I’ve said it before and I’ll keep saying it I’m sure…I simply don’t understand people.

  11. Good for you! Your son is very lucky to have you as a mom.

    I was in the ER in May, b/c of getting glutened, and the nurse did not know what celiac disease was. How do you find out if a drug may indeed have gluten in it? Every co. I have questioned so far says something like this: “we don’t put gluten in it, but we do not test for it and we have all different suppliers.” How can you make a decision based on an answer like that?

    anyone know of an asthma inhaler that does not contain gluten, I got horrible gut problems with Asmanex. I can use albuterol without any problems but I was looking for an inhaler that is not a “rescue inhaler.”

    Why are they putting gluten in prescription meds anyway? Going to the dr. today b/c I think the medicine I am on (a beta blocker) is causing the asthma. If it’s not one thing it is another!

    And David, geez you have been thru it…I can’t imagine what you and your mom had to endure with the unsupportive dad. At least you had your mom. Mom’s are awesome!! I miss mine so much, I know she had undiagnosed celiac disease. no doubt in my mind, I wish I had been diagnosed sooner, b/c she may still be here, she ended up with carcinoid cancer, (a gut cancer) and I believe she got it from undiagnosed celiac! no studies to collaborate my theory, I just know it.

    IH and I have talked about how long it took us to get a diagnosis, 25 years for her and 30 for me…..it is unbelievable.

    1. “If it’s not one thing it is another”

      And that, Aloha, is the thing with celiac that people just don’t get. It’s not just a damn tummy ache that we deal with. It’s a slew of related problems. Meanwhile, Mrs. Dude just wants the guy she married back.

      Yeah…I’m a bit angry. Five years in and I swear it’s getting harder, not easier. WTF??

  12. Mom,

    You did the right thing. Bravo!! Gluten often hides in medications, but drug companies (like TEVA pharmaceuticals) are working towards using corn starch as the filler instead (not great news for corn allergy sufferers, however). There are valid, up to date lists of GF medications and if the nurse or doctor had just googled it, in three minutes they would have had the answer

    I have so many arrogant doctor stories, replies that would make you wince and say “what a jerk!” but the worst ones happened before my DX. I was so desperate to have some relief from the nerve/joint/bone pain– so I saw several rheumies and neuros and a pain management doctor –all with the empathy of a rock. “First do no harm”? Yeah, right!

    Maybe these will help you see that you are not alone, you did the right thing to question him and BOO! on any doc who plays the “I know best ” card. A few from my collection:

    (1) March 2008 The rheumy examines me, cannot explain the burning skin or tight, weakened muscles and loss of muscle mass at all and when I ask him, “Since there are no medications that are helping, only causing horrible side effects, do you think if I were to use any supplements that reduce inflammation that it would help in any way?”

    He replied with a mocking laugh: “Well, sweetheart, if you throw enough sh-t against the wall, eventually something might stick.”

    (2) June 2008 The PM doctor looks at my spine films, barks “You have the spine of a 22 year old. It’s not your spine.” (I actually have osteopenia and several degenerating discs–but apparently, he cannot see them? The spine/ortho guys saw them plain as day)

    I ask tearfully: “Then why am I unable to walk, sit, stand or lie down, turn my neck or lift things without excruciating pain?”

    He says: “You probably have that fibromyalgia thing, even though I do not believe it even exists”.

    He goes on:” I can’t help you. You need to do some yoga or take stress reduction classes. Why are you crying?”

    Me: “I am in pain 24/7, I cannot sleep. It hurts just to lay down… and honestly, my father just died.”

    Him, standing up, signaling we are done now…” Oh, well, you are just grieving. I know, I also have a background in psychology. You need to relax, take some anti-depressants and chill out. I can’t help you. I shoot up necks for a living.” He left the room.

    Hubs wanted to punch his lights out.

    (3) Nov. 2009 Another rheumy with a major god-complex tells me I need to take methotrexate ( an anti-cancer drug often used to treat RA) because he believes I have “undifferentiated spondyloarthropy” even though I do not have the markers for the disease. : I am so desperate, I consider it. I do have OA, so I thought maybe he knows better. But when I question him about the potential side effects of the drug, stating first “with all due respect….”he gets red-faced and yells at me “Well, that is NOT respectful at all. Are you questioning my 35 years experience? Do you think I would risk my reputation and give you something that would harm you? Do you know who I am???”

    I never returned.

    (4)Dec. 2009 A woman doctor-PCP –comes highly recommended to me– takes my health history reads it, says the first doc I mentioned is the “best” and the third is a “quack”. When I mention the burning pain I have, she says “You are just stressed” and writes a script for an anti-depressant, tells me to “relax, girlfriend”, and come back in six months.

    I ask:”but what about all the symptoms I told you about–the fatigue, my hair falling out, the constant abdominal pain, shortness of breath, diarrhea/constipation”?

    She snarks back: “Well I can’t solve all your problems for you!!!. C’mon, time to go. I have other patients”

    I wanted to punch her lights out.

    (5) Jan. 2010 I see an integrative MD for 9 months. When I ask him repeatedly about my hair failing out, he laughed and said, perhaps I was “jealous and I wanted to be like him”—referring to my hubs’ bald head!

    About the continuing severe pain, numbness, tingling, burning and gait/ataxia issues, brain fog I had, despite all kinds of therapeutic treatments I paid for at his clinic–acupuncture, massage,supplements? (but balked at chelation treatments)
    He said I needed to do volunteer work “to get my mind off the pain.”
    I could not even tie my own shoes or dress myself at the time. Turns out, I had dislocated SI joints, sacroillitis, piriformis syndrome, pelvic floor dysfunction, osteopenia, hypocalcemia, pudendal nerve entrapment, small nerve fiber neuropathy and L1-L2 nerve impingement.
    and finally….regarding the IgG food antibodies testing he did while I was already gluten-free because I was trying it to see if it would help?
    He insisted to hubs and me–when I asked if it would affect the results –he said REPEATEDLY–

    “Oh, that will not affect the results of the test whatsoever. Those tests are accurate!!!”
    He told me it was perfectly safe to eat gluten. Just avoid soy because I had an intolerance to that.
    Give it a few months and I would be right as rain.

    I did that for another 9 months, going downhill so fast I nearly died.

    HE administered the test incorrectly!

    (6) Jan. 2010 A nurse practitioner in my former GI’s office barked at me “It’s not gluten! You do not have celiac sprue! you can eat gluten! He went down there last year (he did an endoscopy) and you are fine. You just have GERD! and IBS and probably fibro. Take the anti-depressants. Those are good drugs for fibro and take the Citrucel, carafate, and PPIs…. and take the methotrexate, too.
    Everyone is trying to help you but you don’t take the drugs or listen to our advice. ”

    I threw all the scripts in the wastebasket and never went back.

    Well, as it turns out, “he”–the famous GI doc I saw for 12 years and who knew about my 90 lb. decline, labeling me “anorexic”–me, who was overweight for 10 years?— never did the biopsy when he was “down there”! He screwed up royally. And I am not the only patient, I have come to learn.

    Hubs and I–and my new GI doctor— want to kill him.

    (7)the Neuro in 2009 who said emphatically, the burning, numbness, poor reflexes, muscle mass loss, ataxia and loss of memory were not a “neurological issue because my EMGs and Brain MRI were okay”…and I MUST go back to the rheumatologist and take the medications because if I keep “doc shopping” then I look like I am searching for drugs. (me, who does not take them because my gut is so raw?).

    sigh…..there are several more, including a doctor in NJ who told me he would cure my pain because he “is the best”…(he did not and he is not)…

    ….but I am pooped from typing so long. 🙂

    And people wonder why I have trust issues with doctors

    1. IrishHeart…. I was reading this “About the continuing severe pain, numbness, tingling, burning and gait/ataxia issues, brain fog I had”…. I was diagnosed in May. I have weird tingling going on all the time. The pain, I do experience when I know I’ve been glutened… but what’s the deal with the tingling? As I’m typing I have one small weird spot on my back tingling. Sometimes 1 toe will go numb or half my foot. I always thought it was a pinched nerved, but it seems as of late that it’s getting worse. My doctor’s here are worthless. I keep telling my husband that I either want to go down to Scottsdale to the Mayo clinic or come up with the funds to go to Chicago. I’m ready to feel better. I’m not very old (okay, my daughter thinks I’m old), but I’m only 33. I shouldn’t have weird nerve pain and my back hurting all the time, should I? Is that related to the Celiacs?

      1. Tingling and nerve pain (parasthesia) is often associated with celiac. It is usually in the legs, feet and hands, but can be throughout the trunk and spine. I had it everywhere. I still have some burning, but it has tamped down quite a bit.

        It is a result of malabsorption and serious vitamin and mineral deficiencies, particularly a vitamin B-12 and/or folate deficiency.

        The nerve pain seems to take the longest to resolve (from the reports of those who have had it and according to my GI doc who consulted 2 Neurologists on my behalf.)

        Yours will likely resolve, but follow -up care with a doctor who will monitor your vitamin ans iron levels— is a good idea.

        Some celiacs have small fiber neuropathy (as I did) which explains why it did not show up on EMGs.





        Hope this helps!

        1. Thanks! Yes, to the malabsorption. Last I heard, I had nonexistent levels of certain vitamins (which made my pcp call me while on a business trip and told me to find the nearest pharmacy immediately e.g. vitamin b-1 and something else… I can’t remember) and low levels of others (e.g. iron and a few others). I haven’t been back for a follow-up because it seems so pointless. Right now, I’m just taking it a day at a time and dealing. Thanks for the resources.

      2. Bethanne,

        I also had a circular area in my back get pins and needles, then lose sensation(over time). A massage therapist working on my back told me the muscles in that zone felt, “mushy”. After being gluten-free for a while this went away, and that section was the same as the rest of my back. Now I’ve had a tingly feeling for the last few days in one of my big toes and I have no idea what’s going on!

    2. Geez Louise..what the hell?!? That’s unreal. What is it with the high and mighty attitudes so many docs seem to have?

      Maybe I should change my title to Doctors and the God Complex.

      1. I work with surgeons, and the younger ones, seems to me, and this is purely anecdotal, are much more grounded than the older ones, though there are exceptions where this is reversed. Sometimes Celiac comes up during surgery, like for diverticulitis or bowel inflammation, and the younger docs know all about Celiac. But surgeons generally are not diagnosticians, and the problems I and most of ya’ll have had troubles with are in the initial diagnosis and sometimes with follow up.

        The docs with the God complex nobody likes, not even other doctors, nurses or techs. Their ego’s over ride their abilities to empathize with patients, and I honestly think some of them are somewhat pathological regarding the inability to relate to what someone with a chronic illness, regardless of what that illness is goes through day to day, year to year. I often want to ask “why did you become a doctor” to some of them because they seem more concerned with politics and the stock market than their patients.

        I wish I could actually answer the question about why some of them get the God complex, but I can only guess that those doctors are as sick psychologically as we are physically, and they go undiagnosed.

    3. Wow, your experience closely mirrors mine….. in addition to being labeled a malingerer, as there was obviously nothing wrong with me and it was all an act….
      Negligence, and malpractice, you bet. Happens all the time.

  13. Doctors? Don’t get me started… but they’re not all bad. I feel there is a knee-jerk reaction in the medical industry to cling stubbornly to “Western” medicine; because that what they know. It’s what was taught. Change is scary and I think we’re on the cusp of realizing, as a society, that pills can’t fix everything.

    Hospitals? Even worse. Last year I was in one of our city’s premier hospitals. It is nationally ranked and known as one of the best facilities in the country in numerous specialties. They were more bumbling with my dietary needs than a teenager at a drive-thru window. Sure, they could do gluten free, but I would get my meal hour(s) late and sometimes with toast! That was after I clarified that I did not need a bland diet. Luckily my support system kept me supplied in gluten free foods that I could eat.

    I love this mom. And I love the kid that calls her ‘snappy’! I love that everytime we stand up for someone with celiac disease, awareness increases. Change is happening and this mama bear is leading the way!

  14. Thanks for this!

    I spent over 13 years under the care of a doctor who got very insulted if I dare challenge his opinions.

    Throughout my teen years, I suffered from painful joints/muscles, numbness/tingling, stomach pains, and inability to gain weight. It became so concerning that I pleaded with him for help and was only looked at as if I were crazy. My mom could see I was suffering and challenged him on his diagnosis of ” anxiety.” He retorted, ” There is NOTHING wrong with her. She needs some anxiety medication, to eat more, and a good massage. The tummy ache? It’s just A LITTLE TUMMY ACHE! If you don’t agree with me and don’t like my medical opinion, you can go elsewhere.”

    well, that LITTLE TUMMY ACHE turned out to be Celiac disease! I went 6 more years destroying my body without even realizing. I experienced worsening symptoms of iritis ( temporarily lost sight in my left eye) Dermititis herpetiformis rash, chronic bruising, impaired swallowing reflex, gasping for air, extreme weight loss from 125 pounds down to 100 pounds in 1.5 months, dark circles under eyes, brittle hair/nails, excruciating stomach pain, etc and chronic sinus infections.

    The doctor was finally fed up and told me I looked anorexic and ” needed to eat more.” He put me on a high powered antibiotic which unknown to me, would later come with a black box warning. As soon as a I took the drug, it was like a bomb went off in my body. I would wake up and have the pain of having my arms sawed off. Every nerve and muscle in my body was on fire. Muscle twitching, spasms, more weight loss, heavy night sweats. I thought I was dying. In fact, I was; slowly but surely.

    The only one in the medical community who helped me, turned out to be the eye doctor who saw me for the iritis. He told me that iritis is seen in people with auto-immune disorders and that i had a diseased system.

    I went back to my M.D and told him I had a diseased system and he LAUGHED AND LAUGHED AND LAUGHED. Needless to say, I never returned.

    Where I got help? I got under chiropractic care and my chiropractor had 30 plus years experience specifically in nutrition and digestive disorders.

    Incidentally, I would go on a trip to an institute of health, where I was off gluten for 2 weeks. All of my symptoms vanished. But as soon as I returned home, my symptoms came back again! I told my chiropractic doctor.

    He told me he suspected celiac disease. He turned out to be right. I got blood tests and it was confirmed, along with confirmation of dermatitis herpetiformis through skin biopsy. My chiropractor is the one who affirmed me. The first person to tell me I wasn’t crazy!!

    Oddly enough, my younger sister still goes to my old MD. She began having symptoms and was told by the Dr. ” oh, you have celiac disease. The results came in last year. The nurse practitioner didn’t tell you?” LOLOL I’m only laughing at how horribly ridiculous it all is.

    Thanks for letting me vent.

    1. ” oh, you have celiac disease. The results came in last year. The nurse practitioner didn’t tell you?”

      Sue this guy. Take him for all he has. This is criminal.

    2. I just read this and Irish Heart beat me to it! I would definitely start with filing a complaint, and/or get a good lawyer. ridiculous.

    3. Holy crap I want to punch this guy. I have to agree with Irish and Aloha. There’s negligence and then there’s what happened to you. Doctors CANNOT treat their patients this way.

  15. Coming late to the party, I know, but I keep reading all these horror stories, and keep thinking how lucky I was.

    Four years ago I had a very stressful time at work, which triggered a severe bout of GIRD. My GP put me on the list for an endoscopy, did a quick heliobacter test (negative), and meantime tried out a number of reflux control drugs to get me settled.

    A few weeks later, I go in for my procedure and come out the other end with the GE specialist looking over me and telling me “nope, no ulcer, but I decided to go a little lower, and did you know you have coeliac disease?”

    Back to my GP, who promptly referred me for a bone density scan, an appointment with a dietician, and a referral to the Coeliac Society.

    I now have a scan every two years, and a blood work check every year.

    And all on the public health system here in Australia.

    I treasure my GP, as you can imagine.

    As an added fortunate circumstance, I have a number of friends with CD, and/or a number of food allergies and/or intolerances, so I was well prepared for what I needed to do.

    1. That’s awesome RDM. Not the diagnosis of course but that you seemed to fall in with the right medical professionals.

      And all of this with a public health system, which so many here seem to think would be the end of civilization.

  16. I know this is an older discussion. But I just have to tell mine. The GI who diagnosed me actually told me, “If you need to lose 5 pounds, you can always eat gluten for a week or two.”
    REALLY, just lose some weight.
    Now where could the general public have gotten the idea that gluten free is for weight loss???? I just can’t imagine……..
    I’d LOL if it was in any way funny.

  17. I got this web page from my pal who informed me regarding this site and now this time I am visiting this site and reading very informative posts at this place.|

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Who I am. And who I'm not.

Who I am. And who I'm not.

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

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

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