Dermatologist Was Mean, Made Me Cry...

[Raven815]

Hi everyone,

I am so happy I found you guys and this forum. I am new here, but not new to celiac. My Mother was diagnosed about 30 years ago. She has been trying to convince me all of this time that I also have celiac, but I never believed her. Well, I believe her now. Here is my story:

About two month ago I broke out in this terrible rash on my arms, breasts, and upper and lower stomach. Home remedies did not work and it only got worse. I decided to go to the doctor because I couldn't take the unbearable itchiness and scratching myself bloody anymore. I thought it was from a new laundry detergent my hubby just bought. My doctor put me on a steroid pack, OTC cream, and Benadryl. It seemed to be getting better and then when I stopped everything it came back 10X worse. After a very high gluten menu for Mother's day, it got even worse. I finally started researching on the computer and I decided that I probably had DH.

So, I decided to bypass my regular MD and go straight to a derm. She walked in and immediately decided that I could not have DH because it wasn't in the spots on my body it should be. I had educated myself so much, that I knew to expect this reaction. I proceeded to tell her that my Mother has "dx'd" celiac, and it IS genetic. I also have Hashimoto, diabetes, MS, liver issues,allergies, and heart disease (triple bypass at 42 yrs. old). She said none of that meant anything (do you believe it?) and the fact that I don't have gastric problems and am quite overweight means that there is no way I can have celiac disease. I think my chin was on the floor at that point. I told her that my Mother had been to celiac specialists that told her you could be asymptomatic and still have the disease. Everything i told her about celiac disease and DH, she said I was wrong and shouldn't believe everything I read on the internet. I asked her if she thought that the info i was getting on celiac.com was wrong. She got so angry that she started to walk out and said she would not treat me and I should go elsewhere. She also said she refused to treat me for DH, when she didn't believe I had it. That's when I started to sob and say I couldn't take the intense itching and sleep loss anymore. I told her that if she would at least biopsy me, I wouldn't argue with her anymore. She had the nerve to ask me what I was going to do if the test came back negative. i wanted so badly to ask her what she would do if it came back positive, but I didn't want to make her angrier and have her possibly sabotage the test somehow. She also said that it is virtually impossible to go 100% gluten-free, so I shouldn't even try.

So, she did the biopsy and walked out on me w/o another word. I left some paperwork I had brought w/ me in the office, hoping she would read it and maybe educate herself so the next person looking for help would not have to endure what I did. I'm sure she threw it out.

I have been gluten-free since last Sunday, and the rash feels better already. I'm going to act as if, because I am finally convinced I need to do this to save my life. My Mother has been very strictly gluten-free since diagnosed, but she is now dying from Cirrhosis (she doesn't drink, they believe it is from the celiac).

Thanks for being here, Laura <3

[Takala]

Please get the test results in writing from this doctor's office when they come back, instead of just accepting the nurse's message over the telephone.

She can do the biopsy in the wrong way to sabotage it, and then you have a negative result which validates her initial assessment.

Also, take pictures of your rash, while you still have it.

You are going to be very, very nice to her until you get what you paid for, which is the results of a medical test to see what is causing your rash.

Positive is your answer. Negative is ??? -

Then, you will have a choice, if you still have The Rash, you can go to a different doctor and get it biopsied, or you can go gluten free. (If Mom is celiac, you've got some of her genes....) I suspect you will be highly motivated to stick to a gluten free diet, and be successful at it, those of us who were the sickest, and who can actually SEE and FEEL an improvement or physical result quickly are going to be good at this. A biopsy for DH must take the sample from the area right next to the lesion, not from it, itself.

A person who is carrying the genes, can develop celiac or celiac related DH at any time during their lives. There is a lot of stuff from the NIH and PubMed and various professional medical journals and celiac research departments at major medical universities on the internet, pity that 'the google' is broken for her right now.

There really are a few fruitcakes and mentally challenged doctors out there, I ran into one trying to get diagnosed who was withholding test results, and then lying about what the scans said. I will never have my "official diagnosis," but she will never have her reputation after that. My PCP (who did see the test results and was gobsmacked about the whole thing) is just happy I am not now constantly SICK all the time after 9 years of diet change.

If you think she is a real menace (you end up with a positive biopsy, but she's still not cooperating about how a gluten free diet is the treatment) there are various state and insurance entities you can report her behavior to, but GET TEST RESULTS FIRST and document everything.

[ravenwoodglass]

Unfortunately there are all too many doctors like this one. It sounds like you know what you need to do which is to become strictly gluten free. I hope you heal quickly and welcome to the board. If you do feel you need an official diagnosis keep eating gluten and ask your GP for a lab slip for a celiac panel. Also you mention you have MS. Did they do a spinal tap to diagnose? If not you may actually have gluten ataxia and may get some relief of those symptoms after you have been gluten free for a while.

[squirmingitch]

Please get the test results in writing from this doctor's office when they come back, instead of just accepting the nurse's message over the telephone.

She can do the biopsy in the wrong way to sabotage it, and then you have a negative result which validates her initial assessment.

Also, take pictures of your rash, while you still have it.

You are going to be very, very nice to her until you get what you paid for, which is the results of a medical test to see what is causing your rash.

Positive is your answer. Negative is ??? -

Then, you will have a choice, if you still have The Rash, you can go to a different doctor and get it biopsied, or you can go gluten free. (If Mom is celiac, you've got some of her genes....) I suspect you will be highly motivated to stick to a gluten free diet, and be successful at it, those of us who were the sickest, and who can actually SEE and FEEL an improvement or physical result quickly are going to be good at this. A biopsy for DH must take the sample from the area right next to the lesion, not from it, itself.

A person who is carrying the genes, can develop celiac or celiac related DH at any time during their lives. There is a lot of stuff from the NIH and PubMed and various professional medical journals and celiac research departments at major medical universities on the internet, pity that 'the google' is broken for her right now.

There really are a few fruitcakes and mentally challenged doctors out there, I ran into one trying to get diagnosed who was withholding test results, and then lying about what the scans said. I will never have my "official diagnosis," but she will never have her reputation after that. My PCP (who did see the test results and was gobsmacked about the whole thing) is just happy I am not now constantly SICK all the time after 9 years of diet change.

If you think she is a real menace (you end up with a positive biopsy, but she's still not cooperating about how a gluten free diet is the treatment) there are various state and insurance entities you can report her behavior to, but GET TEST RESULTS FIRST and document everything.

I couldn't have said it any better!

[eatmeat4good]

It makes me soooo angry to read this. I'm sorry you had that experience. I was treated that way too, only I didn't know I had DH...or about Celiac...I just really wanted a biopsy...to find out what was going on. THe derms I saw...said you have neurotic excoriation and you need to stop picking on your skin. I was furious.... another insisted it was acne...it just doesn't make sense that they are not diagnosing this disease or even trying. Sorry I don't have great advice for you, but your post struck a nerve, and now my nerves work because I am gluten free.! I wish they would stop saying it is impossible to go 100% gluten free, I have heard that too.

I was horrified by the treatment I got from dermatologists.

I am horrified reading the treatment you got.

I am horrified by the number of undiagnosed DH pateints who were, are, and will be, getting the same ignorant treatment by dermatologists with their head in the sand. Wow.

People really have got to diagnose themselves when it comes to Celiac.

Thank God you got the biopsy....I was never able to convince anyone to do it.

I wish something could be done to educate dermatologists about DH.

So much suffering could be alleviated by a little education/knowledge about DH ,and effort on the part of dermatologists.

It just makes me sick.

[Raven815]

Thanks everyone. You don't know how much better I feel after having found you all. Even though I was devastated yesterday, today I feel kind of triumphant, since i was able to convince her to do the biopsy, regardless. I watched carefully where she did it, and she said she has experience with DH, so I think we're OK with that. Now I have to wait about 3-4 weeks for the results, since they had to send them out to U of I to get done. Hopefully, that means they will do it right.

RavenWoodGlass, I got my MS diagnosis through an MRI. It's weird, though, because after I was diagnosed, I have never had any issues with it. Years later, my neurologist was wondering if I ever really had it. I have never heard of gluten ataxia. i am going to look this up right away. You all are making me so happy and I am learning so much. BTW, I am ALSO on meds for depression AND anxiety. It is all starting to make so much sense.

Thank you, thank you, Laura <3

[squirmingitch]

Laura, I have been here over 6 months and am still learning. I recently learned that schizophrenia has it's connection to celiac disease also. Another piece of the puzzle drops into place for me. My brother had schizophrenia. AND he had symptoms of celiac disease but no one connected the dots at the time. Then by the time he was on meds, all the symptoms were blamed on the meds. I can only wonder now what his life would have been like IF ONLY........

Keep reading posts on here. That will be your best teacher.

[GFinDC]

Hashimoto's is more common in celiacs. If you search the forum for Hashimoto's you will find lots of threads about it. Being heavy is not a criteria for excluding celiac. Many of the old stereoptypes about celiac are slowly being turned over including the weight one. The truth is celiac hasn't been well studied until recently and the medical establishment just made lots of assumptions about it. Not all of them have gotten past those bad assumptions though.

You may need to decide to go gluten-free without a solid diagnosis as the testing is not perfect. Many people seem to "flunk" the tests but their health improves on the gluten-free diet anyway. So it is a real good idea to try the gluten-free diet for 6 months or so regardless of what the tests say. If you have symptoms that improve on the gluten-free diet it is best to stay off gluten.

You could also try to find a different doctor with a more open mind. There is a doctors thread on the forum with suggestions for some areas. There are also celiac support groups in many areas and their members may have doctor recommendations too. The CSA (Celiac Sprue Association) is one.

[Di2011]

I was overweight my whole life. Always been an itchy scratchy person, GI and nerve problems got pretty bad before gluten free. In hindsight I think I was lucky that I couldn't afford specialists. I've managed to avoid all the incidents that have upset you so. I am now comfortable with the fact that I'll be undiagnosed for life. It takes a bit of quiet contemplation to get there though.

100% gluten free is easy, cheap and healthy if you do it right. Be strict, lots of fresh food and minimise your gluten free processed foods. My grocery shopping is easier/quicker and grocery bills have actually lowered. No more wandering up and down all the aisles

[ravenwoodglass]

Thanks everyone. You don't know how much better I feel after having found you all. Even though I was devastated yesterday, today I feel kind of triumphant, since i was able to convince her to do the biopsy, regardless. I watched carefully where she did it, and she said she has experience with DH, so I think we're OK with that. Now I have to wait about 3-4 weeks for the results, since they had to send them out to U of I to get done. Hopefully, that means they will do it right.

RavenWoodGlass, I got my MS diagnosis through an MRI. It's weird, though, because after I was diagnosed, I have never had any issues with it. Years later, my neurologist was wondering if I ever really had it. I have never heard of gluten ataxia. i am going to look this up right away. You all are making me so happy and I am learning so much. BTW, I am ALSO on meds for depression AND anxiety. It is all starting to make so much sense.

Thank you, thank you, Laura <3

They should have done a spinal tap afterwards to check for the debris found in the spinal fluid with MS. Celiac disease can cause bright spots called UBOs or unidentified bright objects on a brain MRI. However the debris found on the spinal with MS will not be there. Neuros in this country are woefully unaware that those bright spots are diagnostic of celiac antibodies that are attacking the brain. I also suffered with depression and anxiety pregluten free. Meds actually made me worse or were unaffective. Within a very short time gluten free my depression lifted only to reappear when glutened. My anxiety didn't improve but I have PTSD. Many do see the anxiety get better. Talk to your doctor after you have been gluten free for a bit as you may start absorbing your meds better and may need to have dosages adjusted or you may have those issues resolve and be able to taper off the meds. Just don't stop them without your doctor's guidance and do make sure anything you are taking is gluten-free. My antianxiety med is not gluten free in name brand but is in generic form so you don't know unless things are checked.

[dani nero]

Doctors.. Many of them are actually a menace to society. Sorry you have to cross paths with one of them :-(

[dilettantesteph]

Wouldn't it be great if we all had microscopes in our eyes?

I think that doctors act that way to cover up their ignorance.

[Raven815]

Hi everyone,

Sorry I haven't replied, but I've been absolutely miserable with this rash. I've only been sleeping at night for 3-4 hours, then waking up extremely itchy again. It has also spread to my back, legs, butt, and sides. But, on a positive note, I have been VERY strictly gluten-free for 1 1/2 weeks now and my arms are starting to clear up (where this all started). So, it makes me feel some hope. I'm still anxious for the results of my biopsy. It would be nice to get a dx, but as far as I'm concerned, I have it.

[Darn210]

Hi Laura, sorry to hear your rash is keeping you from getting a good night's sleep. Glad to hear your arms are clearing up.

I just wanted to throw in that you should look for a couple of other items to limit if you are a DH'er (that's Dermatitis Herpetiformis'er NOT Designated Hitter ) I know that some people need to go low iodine and low SALS . . . at least while they are in an active DH flare. I personally, don't know much about this, but maybe some of the DH'ers will jump in and refer you to some good background info...or...just keep reading posts in this forum.

Good Luck. I hope things clear up for you quickly.

[Raven815]

Thanks Darn210,

I tend to agree with you. Acxtually, this past weekend, I ate a lot of soy. I am a vegetarian, so I do eat tofu and such. I had tofu for two meals, a soybean snack, and some gluten-free soy sauce. It seemed to inflame my DH on the second day. So, I'm going to stay away from soy for awhile and then re-introduce it in a few weeks.

I just looked up the low-iodine diet. I already don't eat dairy (except cheese) and eggs. Soy is on the list and I should have no problem avoiding the legumes they suggest. The hard part will be salt. I use sea salt. Should I not use salt at all or just very little? I do have Hashimoto's and I am on Synthroid.

I am loving all of this advice and knowledge. Keep it coming, my new best friends!

Laura <3

[mushroom]

So far as I know, sea salt is okay; it is table salt that has iodine added to it.

[eatmeat4good]

I feel for you.

It took me over a year to heal my DH.

I kept wanting to eat eggs but absolutely could not. Iodine content I guess.

You can use salt. But do not use sea salt, or iodized salt. Some people say sea salt is ok, but Peter Greene says anything from the sea contains iodine..I found I could not use it. It caused as bad a reaction as if I had eaten shellfish. There is such a thing as plain salt. It is sold right next to iodized salt and is called Plain Salt...with a statement usually that this salt does not supply iodide..a necessary ingredient for health. That's ok to use and won't flare your rash. However, your thyroid medications contain iodine...so it will be difficult to limit iodine since you are taking it for your thyroid.

As for the pain, there are products with benzocaine that halt the burning stinging itching of DH.

Look for Bactine spray.

Walgreens Pain Relieving Ointment

Some have used Ora Jel.

Solarcaine.

Anything with benzocaine topical will work.

Ask your pharmacist to help you.

There is a prescription Lidocaine ointment, but it was very expensive and didn't work any better than the over the counter things.

Wet tea bags take the sting out for a while too.

Nothing works for very long...but these things will get you some temporary relief so you can sleep a little and not scratch.

I had DH on my face so the ointment worked best, but bactine spray can be sprayed on your hand and applied to areas you don't want to spray.

I hope you find relief.

Check vitamins for iodine. You may be getting dosed with too much iodine regularly. I had to find vitamins without iodine. It made a world of difference to minimize the iodine.

Even canned goods contain iodine...due to the metals I guess. I had to stop using them...but it was sooooo worth it.

You will need your medication, but you can limit the other doses of iodine and hopefully your rash will calm down.

[squirmingitch]

Raven, you can eat salt. Just make sure it is non-iodized salt. There is some back & forth on the subject of weather sea salt contains iodine with some sources saying no & some saying yes. So when in doubt...... I just get non-iodized salt.

BTW, many celiacs can not tolerate soy. I am one of those. Who knows if we will ever get soy back but that remains to be seen in a challenge way on down the line time wise. personally, I can live without it. I doubt I will even bother to do a challenge of soy.

Sals ---- here are some links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Some things you can try for the itching. And as everyone is an individual... what works for one may not work for another so you will have to experiment & see what works best for you. My hubs also has dh (yes, really!) & we found out the difference in people as well as the specific way the dh presents & what relieves the itch for each of us. I use orajel & it stops the itch dead! But it's greasy & you don't want to really slather it all over your body or in your hair for lesions in your scalp for obvious reasons. Now, for hubs --- Vanicream works great --- stops the itch! Vanicream does nothing for the itch with me. Go figure. I use it when my rash is on the way out & those little scabs act like sandpaper & irritate especially when clothing touches them. Both hubs & I recently discovered what works for both of us is CVS's copycat of Caladryl (the pink stuff) --- it's labeled Calamine Plus Itch Relief. That, I can put on my scalp & at least my hair doesn't get greasy. It's good too for coating down with before bed & let it dry before putting nightgown on or crawling between the sheets.

Other things to try:

ice packs

vaseline

witch hazel

And see, you've already gotten your dx -- 1 1/2 weeks gluten-free & your arms are clearing up. If it wasn't dh then that wouldn't happen.

[Raven815]

Thanks so much, everyone. I am willing to do ANYTHING to make this rash go away. I already eat pretty healthy since going veggie two years ago, so a lot of this stuff will not be a problem.

Thanks for all of the anti-itch suggestions. I think it's time to send hubby back to the drug store. I have been using anti-itch cream during the day and cortizone cream at night. One thing that has been working very well for me is this body wash I found at Trader Joe's. It is called "Tea Tree Tingle" w/ peppermint, tea tree, and eucalyptus. I wet down a washcloth and then drizzle this on it. I squeeze it to distribute, but leave it pretty wet. I then fold it and stick it in the freezer. OMG, it feels like heaven when I wipe myself down with it. It seems to take the itch away for quite awhile.

Love this forum and love you guys, Laura

[jeanzdyn]

Too much of anything can be a bad idea... I seem to go on 'binges' too, where I eat a lot of one food type and later have bad symptoms.

I have experienced severe itching, but no rash or any visible signs of the itch --except the scratch marks. The only doctor I ever talked to who even believed me was the gastro-enterologist who did my colonscopy. I figured out, about 2 years before my celiac diagnosis, that if I avoided wheat the itching went away. So, the diagnosis of celiac disease was not a complete surprise to me.

Anyway, I am really sorry that your itching is keeping you from getting a good night sleep (I sure know what that is like from the itching.) And I am sorry that the dermatologist you saw is such an asshat.

I hope that you find relief from the itching and that you find other doctors who are not so close-minded as to think they can learn nothing from their patients!

you will find a lot of support and advice from the folks here at the forum, so you have come to the right place.

welcome, from a recently diagnosed 'celiac'

[squirmingitch]

We are all wishing you a great night of uninterrupted blissful sleep!

[ncallier]

We are all wishing you a great night of uninterrupted blissful sleep!

I also wish you a great night's sleep; please wish me one, too. I am in the same boat as you and have been trying to maintain a strictly gluten free diet since the last of Feb. - the first of Mar. My rash wakes me up nightly with horrible itching and pain.

In many ways, it seems that my symptoms have worsened, especially peripheral neuropathy and this rash. I have been unable to find a dr. who would biopsy my rash--gastrointerologist thinks it is DH but won't treat it; endocrinologist thinks it is ezcema but wants a dermatologist to treat; dermatologist has been on maternity leave since April and will be untll October. (OMG!! I was lucky to get to take my 6 weeks of leave that I had saved with each of mine!! Yes, I know; sour grapes!! LOL)

I really don't know what to do or whom to see. I am ready to get well.

I also had drs. who wanted to dismiss my celiac disease because I am overweight. As per my most recent blood tests, my iron levels are okay, but my red blood cells are way low. The endo said this was "puzzling" but offered no advice. He also did not do a vitamin k test and acted as though I had grown horns when I asked if he had and if he would. even though I have broken capillaries over ~ 1/2 of my body. I have been anemic most of my adult life and was even referred to a hemotologist even though the referral got lost and I never got an appt. I do drink a good amount of red wine, which could possibly explain the iron levels being near normal.

Does anyone have advice????

[JaneWhoLovesRain]

Raven, I'm sorry to read all that you are going through. I'm in a similar boat, trying to get answers but getting nowhere. I had a visit with a very mean dermatologist today, but not quite as mean as yours.

Your symptoms and history are very suggestive of DH, I don't know why your doctor had to be such a jerk about it.

I can't add any advice to all that has already been given to you other than to say the only thing that gave me any relief was the generic brand of the anti-histamine loratidine (sp?). My rash is just about gone but when it was there it was the worst rash and itching an d prickling I have ever had in my life, unbearable. As some areas slowly cleared up, new spots would emerge, always bilateral.

Hugs to you, Jane

[Raven815]

Thanks Jane! My heart is full. I don't feel so alone in all of this and that makes a huge difference.

Laura

[squirmingitch]

I also wish you a great night's sleep; please wish me one, too. I am in the same boat as you and have been trying to maintain a strictly gluten free diet since the last of Feb. - the first of Mar. My rash wakes me up nightly with horrible itching and pain.

In many ways, it seems that my symptoms have worsened, especially peripheral neuropathy and this rash. I have been unable to find a dr. who would biopsy my rash--gastrointerologist thinks it is DH but won't treat it; endocrinologist thinks it is ezcema but wants a dermatologist to treat; dermatologist has been on maternity leave since April and will be untll October. (OMG!! I was lucky to get to take my 6 weeks of leave that I had saved with each of mine!! Yes, I know; sour grapes!! LOL)

I really don't know what to do or whom to see. I am ready to get well.

I also had drs. who wanted to dismiss my celiac disease because I am overweight. As per my most recent blood tests, my iron levels are okay, but my red blood cells are way low. The endo said this was "puzzling" but offered no advice. He also did not do a vitamin k test and acted as though I had grown horns when I asked if he had and if he would. even though I have broken capillaries over ~ 1/2 of my body. I have been anemic most of my adult life and was even referred to a hemotologist even though the referral got lost and I never got an appt. I do drink a good amount of red wine, which could possibly explain the iron levels being near normal.

Does anyone have advice????

Why do you want a doctor's dx of your dh? From what I understand, you have been diagnosed with celiac disease. So I don't understand why you feel it necessary to get an official dx of dh.

You have been gluten-free for 2 months now. Even if you found a great derm well versed in dh then a biopsy would likely turn up negative. You need to be consuming gluten for the best chance of a positive biopsy.

If you have celiac disease & an intensely itchy rash that is worst at night then it's pretty much assured it's dh.