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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,953
    • Most Online (within 30 mins)
      7,748

    ramonaja
    Newest Member
    ramonaja
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.