Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Do Not Try To Teach Me About Celiac Doc!


MitziG

Recommended Posts

MitziG Enthusiast

Took my DD to a dermatologist yesterday as she has now developed a true sun allergy (hives) in response to sunlight. Got on the celiac topic and he tried to explain to me how celiac is a "gluten allergy." So I explained to him that actually it is an autoimmune disorder. He gave me his gracious condescending "I went to medical school" face and said "No, there isn't anything auto-immune about it. Auto immune diseases are like lupus."

Seriously all I could do to not tell him he is an idiot. So I explain very clearly with my best "too bad you didn't learn anything in medical school" face...that since my children and I all live with this disease, we are very well versed in what it is and isn't, and that it most definitely IS an autoimmune disorder as gluten stimulates the immune system to attack the lining of the intestines and continued exposure to gluten frequently precipitates the development of OTHER auto immune disorders. Like Lupus.

So then he decides to test me...."So I suppose you already had her ANA tested?" Waiting for me to go, "huh"

Argh. "Yes. The celiac specialist she sees already checked for lupus as soon as the sun sensitivity showed up. "

So then he asks her if she is into the vampire genre cuz gow cool would that be since she now has to live in the dark?

Moron. I only went there hoping to get maybe some great rx sunscreen or something.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Gemini Experienced

Took my DD to a dermatologist yesterday as she has now developed a true sun allergy (hives) in response to sunlight. Got on the celiac topic and he tried to explain to me how celiac is a "gluten allergy." So I explained to him that actually it is an autoimmune disorder. He gave me his gracious condescending "I went to medical school" face and said "No, there isn't anything auto-immune about it. Auto immune diseases are like lupus."

Seriously all I could do to not tell him he is an idiot. So I explain very clearly with my best "too bad you didn't learn anything in medical school" face...that since my children and I all live with this disease, we are very well versed in what it is and isn't, and that it most definitely IS an autoimmune disorder as gluten stimulates the immune system to attack the lining of the intestines and continued exposure to gluten frequently precipitates the development of OTHER auto immune disorders. Like Lupus.

So then he decides to test me...."So I suppose you already had her ANA tested?" Waiting for me to go, "huh"

Argh. "Yes. The celiac specialist she sees already checked for lupus as soon as the sun sensitivity showed up. "

So then he asks her if she is into the vampire genre cuz gow cool would that be since she now has to live in the dark?

Moron. I only went there hoping to get maybe some great rx sunscreen or something.

I am totally impressed that your didn't chew this idiot a new bum hole or something! :angry: Isn't it comforting to know and instills all kinds of trust when a person who has supposedly graduated from med school doesn't know that Celiac is an AI disease?

I have seen too many of these kinds of doctors and I still do not trust the medical profession farther than I can throw a stick...and I can't throw very far! :lol:

I would have asked for my 5 minutes back......

MitziG Enthusiast

I know! It was a total waste of time. I mean, I would think a man who should be familiar with DH would at least know the basics of celiac. I feel sorry for his DH patients who are probably being treated for who knows what else.

Sadly, I had already used Dr Google and knew as much about my daughters condition, solar uticaria with co-existing polymorphic light eruption. But I was hoping he knew more. I mean, it is kind of pathetic when a few hours of internet research can make you as well versed as a doctor on a particular disease. I WANTED him to tell me something I didn't know! I wanted him to tell me something that could help her, not...."hope you think Twilight is cool."

Poor kid. She has enough to deal with. Fortunately the celiac specialist she saw is more on the ball and isn't willing to say just yet that she has to live with this. She is a believer in hidden food sensitivities causing a host of weird reactions, and is trying to help us find out if that is the case at least. And she is ruling out other AI issues. Nice to have someone willing to look at the WHOLE picture for once instead of saying, well...this is a GI issue, and that is a skin issue...so clearly they are not related.

pricklypear1971 Community Regular

Oh my word.

Not only was he untrained, uninformed, and willfully ignorant...he's also an ass.

Aprilelayne Newbie

Oh my word.

Not only was he untrained, uninformed, and willfully ignorant...he's also an ass.

I don't know if I could have controlled my 'mama-bear' instincts to smart off at him and his arrogance.

Nobody should talk down or insult you and your child who live with this daily.

MitziG Enthusiast

Just confirms that feeling that if the average layperson could run their own lab work and write their own RX, we could save awhole l9ot of time, suffering and $! Most of us here only need doctors for the legal legwork- we do a much better job of diagnosing and treating ourselves!

ndw3363 Contributor

If one more doctor tells me that my skin issues can't POSSIBLY be caused by diet, I'll scream. Food allergies/intolerances cause depression, anxiety, arthritis? You don't say! (insert sarcasm here)

I really wish the medical community would catch up - my friends are getting tired of complaining of their symptoms and hearing me say things like "ya know, I bet if you changed your diet, that would stop" - I'm not trying to sound like a know it all to them, but no one is teaching that what you put in your mouth has everything to do with your health (hey that rhymes a bit) :-) At the first sign of feeling "off" anymore, I first try to remember what I ate during the week - only if I did NOTHING different do I start to consider going to a doctor. I understand it's more difficult with children - they can't tell you their every symptom and you have to be more careful with what you just let them ride out.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

I will say this for him- he had a sense of humor. After telling him how she got celiac from me, but skin issues from dad, who has palmar psoriasis and alopecia areata and keratosis pilaris, my daughter quipped that she really hit "the genetic jackpot." I thought he was going to wet himself laughing.

I always tell her that at least we gave her "pretty genes" too. Cuz if she is going to be sick at least she still looks good. ;)

IrishHeart Veteran

I always tell her that at least we gave her "pretty genes" too. Cuz if she is going to be sick at least she still looks good. ;)

I am going to tell myself this from now on!!! thanks, Mitzi. :D

and as far as the doc not knowing celiac disease is an AI disease?..well, after all I have been through with doctors through the years, this neither surprises me nor even angers me....it just makes me want to weep for anyone who has deal with this guy in the future.

I talked with my GI about this topic on Wednesday at my check-up. Why are so many docs so ignorant about celiac disease--even ones in the Gastro specialty? He shook his head and expressed his outrage. He is as frustrated and angered as we are by it all.

Here's to self-advocacy (it saved

so many of our lives) and good for you, Momma for taking care of business ;)

shadowicewolf Proficient

My doctor is on the same boat (its just an allergy O.o). She is really good with all other things (shes the one that found out my gallbladder was dying), but..... dang it.... When i first met her and told her about it shes like "i don't know much about it so i won't say anything". Go back in the next visit its a "its just an allergy".

-sigh-

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.