Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

My Dermatologist Made Me Cry


Laurad-

Recommended Posts

Laurad- Apprentice

I really hate to write unfriendly things about people online, but I'd like to warn anyone in Colorado about my dermatologist so that they won't go through the same thing I did...

I've gone to Dr. Barbara Reed a couple of times over the past few years because she is a really highly regarded dermatologist in Denver. She's always been very nice and she clearly knows her stuff, but I went to her last week and at the end of my appointment I mentioned that I was diagnosed with celiac disease last year and I was wondering if she knew of any good face lotions that are gluten-free. Instead of just saying that she didn't know of any off the top of her head, her whole demeaner changed and she said "you aren't eating it" in a snide tone. Taken aback, I stammered something about how it could still make its way into my mouth and I'd rather be safe than sorry. She responded by launching into a 10 minute story about how one of her friends had stayed with her for a while and the friend was on a really restrictive diet but it turned out to not be celiac disease at all, and I should really just be listening to my body and not worrying about labels. At this point, I was on the verge of tears so I didn't respond, and luckily I made it to my car before I started sobbing.

The fact that a medical professional who knows nothing about my horrible medical history (other than that I get the occasional zit) could make such off-base, blanket statements in such a condescending manner makes me want to throw up. Why do so many doctors turn nasty at the first mention of celiac disease?


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



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

Oh, I'm so sorry you had to experience that. She must be related tot he dermatologist I saw, who said my rash didn't LOOK like DH (he saw it a month after I'd been put on prednisone, and it was practically gone) and that my bloodwork was NORMAL (the IgG was off the charts).

Since you did like her beforehand, you might try writing her a letter explaining how you feel and why. Be as nice and non-confrontational as you can while still explaining accurately why you felt so awful. You could explain that many celiacs who have DH DO react to products with wheat germ oil and oats. You might also throw in some links, especially to the recent University of Chicago study.

Your writing to her may or may not save the good relationship you used to have. But, more importantly, it will make you feel better AND it will educate her for the future. She might even resent what you have to say--but she won't soon forget it!

{{{HUGS}}}

quantumsugar Apprentice

I don't understand why some people are so defensive about Celiac disease... it's so weird.

I agree that you should write a letter if you feel able to. That experience sounds terrible (and I'm so sorry)... it may be one of those things where she doesn't realize how incredibly hurtful that was, and she is un-educated about Celiac disease. Taking a bit of time to calmly explain what you've been through and why her words were so bad could really help her (to not suck so much).

missy'smom Collaborator

That's aweful! How insensitive! Sounds like she took out her frustation with the friend on you. She's shown you her true colors. I've run into people like that. I'm a very forgiving person but I wouldn't go back.

rez Apprentice

I think doctors sometimes feel on the defensive because they are caught off guard. They really don't know much about Celiac and it would be best if they left it at that. Maybe that office has a manager that you could write to or maybe you could send her some literature. It's so frustrating!! So sorry you had to be in such a unfortunate situation.

tarnalberry Community Regular

sounds like she had a bad experience with her friend, and was forcing that onto you. totally unprofessional. I'm sorry. :(

Rusla Enthusiast

She sounds like the dermatologist that diagnosed me, after I forced him to do it.


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



Celiac.com Sponsor (A8-M):



Michi8 Contributor

Is she related to the first dermatologist I saw? Is it something with that profession that attracts people with horrible beside manners?

I'm so sorry you had to experience such disrespect. :( Personally, I don't know that I'd bother writing a letter...I'd just look for a different dermatologist.

Michelle

hathor Contributor

How unfortunate. Some people just don't want to admit that they don't know something. Rather than do that, they will either be insistent that they do know something they really don't or will deny that it is worth knowing at all.

Betty in Texas Newbie

I am so sorry this happen to you they get defensive because they don't know any thing about this disease and don't care to learn they think there's not much money to be made in celiac because if you eat right you might get well . I went to a butt dr. and she said I read here that you have celiac how did they dg you and I told her blood and biospy says it is a hard disease to dg so you can't eat fish I wanted to laugh in her face yes I can eat fish I cant eat gluten and left it at that because she wanted to change the subject and I sure you all have been through this .

Jestgar Rising Star

FISH!?!?!? :blink::lol:

kbtoyssni Contributor

Fish?? Gosh, that's a new one! My dermatologist's nurse also gave me the "well, it only matters if you ingest it" to which I replied "well, if I get it on my hands and then touch something in my kitchen..." She told me that I should be washing my hands after applying... Which is good advice, but we'd just discussed how I touch my face way too much and I need to stop that so obviously it can still get on my hands after washing them.

I wish I knew exactly how they were going to attack so I could be ready with a response. I'm ready with responses for most comments, but if they rephrase the comment a bit, I get all flustered and confused trying to reply again.

hathor Contributor

That must be the special kind of fish that vegetarians are always assured that they surely must be eating :rolleyes: Next time someone says that, I'll just tell them I'm gluten intolerant :lol:

Kary Newbie
I've gone to Dr. Barbara Reed a couple of times over the past few years because she is a really highly regarded dermatologist in Denver. She's always been very nice and she clearly knows her stuff, but I went to her last week and at the end of my appointment I mentioned that I was diagnosed with celiac disease last year and I was wondering if she knew of any good face lotions that are gluten-free. Instead of just saying that she didn't know of any off the top of her head, her whole demeaner changed and she said "you aren't eating it" in a snide tone.

I'm sorry you had such a bad experience. The comment that "you aren't eating it" is ignorant. I wasn't snacking out of my cat's litterbox but it was making me sick (100% wheat litter) I was also getting rashes on the underside of my forearms where the cats walk on the armrests of my desk chair. I've also had a scaly rash on my scalp for a long time that has about gone away since switching out hair and makeup products that had wheat germ oil/gluten products in them. I've had bad skin since I was a teen. Being gluten-free for a few months and using different skin care products has given me clear skin for the first time ever and I've tried everything including prescription treatments. I'm using MyChelle products now. I tried their sample pack and fell in love with it. There are several good lotions available depending on your skin type. I get it locally but here is their site if you are interested www.mychelleusa.com

Oh, and I'm new, hi. :) Not sure if there is an official intro somewhere, this thread just made me bold enough to post. I'm really happy to find so much good info and discussion. Thank you.

Lizzz88 Rookie
I really hate to write unfriendly things about people online, but I'd like to warn anyone in Colorado about my dermatologist so that they won't go through the same thing I did...

I've gone to Dr. Barbara Reed a couple of times over the past few years because she is a really highly regarded dermatologist in Denver. She's always been very nice and she clearly knows her stuff, but I went to her last week and at the end of my appointment I mentioned that I was diagnosed with celiac disease last year and I was wondering if she knew of any good face lotions that are gluten-free. Instead of just saying that she didn't know of any off the top of her head, her whole demeaner changed and she said "you aren't eating it" in a snide tone. Taken aback, I stammered something about how it could still make its way into my mouth and I'd rather be safe than sorry. She responded by launching into a 10 minute story about how one of her friends had stayed with her for a while and the friend was on a really restrictive diet but it turned out to not be celiac disease at all, and I should really just be listening to my body and not worrying about labels. At this point, I was on the verge of tears so I didn't respond, and luckily I made it to my car before I started sobbing.

The fact that a medical professional who knows nothing about my horrible medical history (other than that I get the occasional zit) could make such off-base, blanket statements in such a condescending manner makes me want to throw up. Why do so many doctors turn nasty at the first mention of celiac disease?

That's so horrible! I'm so sorry she did that to you! My boyfriend made me feel stupid because I was mentioning that I needed to check if my contact solution was gluten free and he made a similar comment as your doctor. I broke things off with him because I don't need someone making me feel that way. So you should break things off with your doctor! Hopefully you can find a more understand doctor and I can hopefully find a more understanding boyfriend!

Take care!

Sillyyakdidi Apprentice
I really hate to write unfriendly things about people online, but I'd like to warn anyone in Colorado about my dermatologist so that they won't go through the same thing I did...

I've gone to Dr. Barbara Reed a couple of times over the past few years because she is a really highly regarded dermatologist in Denver. She's always been very nice and she clearly knows her stuff, but I went to her last week and at the end of my appointment I mentioned that I was diagnosed with celiac disease last year and I was wondering if she knew of any good face lotions that are gluten-free. Instead of just saying that she didn't know of any off the top of her head, her whole demeaner changed and she said "you aren't eating it" in a snide tone. Taken aback, I stammered something about how it could still make its way into my mouth and I'd rather be safe than sorry. She responded by launching into a 10 minute story about how one of her friends had stayed with her for a while and the friend was on a really restrictive diet but it turned out to not be celiac disease at all, and I should really just be listening to my body and not worrying about labels. At this point, I was on the verge of tears so I didn't respond, and luckily I made it to my car before I started sobbing.

The fact that a medical professional who knows nothing about my horrible medical history (other than that I get the occasional zit) could make such off-base, blanket statements in such a condescending manner makes me want to throw up. Why do so many doctors turn nasty at the first mention of celiac disease?

i'm sorry your doctor was such a meanie! truth be told, ive had a few doctors that were real "winners" to put it nicely, get a new doctor, doctors are just like normal people, some of them are really rude, and some of them don't understand wtf celiac disease really is, and I dont have DH, but i've heard if its in lotions and products like that it can aggravate it, so im sorry you had a mean doctor!!!!

stef-the-kicking-cuty Enthusiast
I wasn't snacking out of my cat's litterbox but it was making me sick (100% wheat litter) I was also getting rashes on the underside of my forearms where the cats walk on the armrests of my desk chair.

OMG! OMG! That could be it. When a cat scratches me by accident I also get a real bad rash. Never knew, that cat litter had wheat in it. Duuuh :blink: ! And I was wondering the whole time, what in the world is at that cat's paw, that makes me react allergic???

Michi8 Contributor
OMG! OMG! That could be it. When a cat scratches me by accident I also get a real bad rash. Never knew, that cat litter had wheat in it. Duuuh :blink: ! And I was wondering the whole time, what in the world is at that cat's paw, that makes me react allergic???

You could be allergic to cat dander too...and more likely than a skin reaction to the cat litter. ;) I always get a rash and welts from cat scratches...that was my typical reaction to cats before my allergy got bad enough to cause asthma attacks.

Michelle

Kary Newbie
OMG! OMG! That could be it. When a cat scratches me by accident I also get a real bad rash. Never knew, that cat litter had wheat in it. Duuuh :blink: ! And I was wondering the whole time, what in the world is at that cat's paw, that makes me react allergic???

I don't know that all litters do but ours was an all natural 100% wheat litter called Wheat Scoop. You would think that would have registered with me as a problem but this is new and I was thinking more in terms of things I eat. I swapped it out for corn litter.

KristenQld Newbie

I've been in tears plenty. The looks on 'professionals' faces (pharamcy personnel, gp's, dermatologists) when I tell them "yep, tried it, yep, tried that too" and I mention the wheat in sorbolenes and the fact that it's in so much, well, lets just say I feel as though I'm the idiot!! How would I know! Funny, isn't it. There aren't too many people who know much about this disease and it's tragic the response from supposedly helpful people. If you can find yourself natural products that have a detailed ingredient listing, you'll get yourself sorted. I found a naturopath who makes up creams and an Australian based company who lists all ingredients in their natural body care range and it's fantastic. No rashes! Keep searching...there are helpful people out there! I'm in Australia, so I don't think it would suit you, recommending someone I know!

Laurad- Apprentice
If you can find yourself natural products that have a detailed ingredient listing, you'll get yourself sorted. I found a naturopath who makes up creams and an Australian based company who lists all ingredients in their natural body care range and it's fantastic. No rashes! Keep searching...there are helpful people out there! I'm in Australia, so I don't think it would suit you, recommending someone I know!

Too bad I'm not in Australia, because your cream-making naturopath sounds perfect!

Thanks to everyone for the advice! :)

  • 2 weeks later...
tummyache Newbie
I really hate to write unfriendly things about people online, but I'd like to warn anyone in Colorado about my dermatologist so that they won't go through the same thing I did...

I've gone to Dr. Barbara Reed a couple of times over the past few years because she is a really highly regarded dermatologist in Denver. She's always been very nice and she clearly knows her stuff, but I went to her last week and at the end of my appointment I mentioned that I was diagnosed with celiac disease last year and I was wondering if she knew of any good face lotions that are gluten-free. Instead of just saying that she didn't know of any off the top of her head, her whole demeaner changed and she said "you aren't eating it" in a snide tone. Taken aback, I stammered something about how it could still make its way into my mouth and I'd rather be safe than sorry. She responded by launching into a 10 minute story about how one of her friends had stayed with her for a while and the friend was on a really restrictive diet but it turned out to not be celiac disease at all, and I should really just be listening to my body and not worrying about labels. At this point, I was on the verge of tears so I didn't respond, and luckily I made it to my car before I started sobbing.

The fact that a medical professional who knows nothing about my horrible medical history (other than that I get the occasional zit) could make such off-base, blanket statements in such a condescending manner makes me want to throw up. Why do so many doctors turn nasty at the first mention of celiac disease?

I am going to be honest here and I hope I don't offend anyone. First of all, many doctors are not educated about Celiac. Secondly, when it is brought up to a doctor they immediately begin thinking, "hypochondriac." If it isn't "hypochondria" then it must be some sort of eating disorder. So, they try to disuey you from thinking you have some gluten intolerance problems. If you are a woman, they will immediately send you to the OB/GYN because it has to be some kind of reproductive problem. UGH!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,311
    • Most Online (within 30 mins)
      7,748

    SWilson
    Newest Member
    SWilson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
×
×
  • Create New...