9 replies to this topic

[MitziG]

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.

[Gemini]

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! 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!

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

[MitziG]

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]

Oh my word.

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

[Aprilelayne]

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]

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]

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.

[MitziG]

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]

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.

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]

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-