19 replies to this topic

[Pigmi]

After six years of living with a unknown skin condition I was finally diagnoised with Celiac Disease and Dermatitis Herpetiformis. For years everytime I would have a bad skin break out and would go to the doctor, she would shrug her shoulders and send me home with some cream. After a year of going in and out of the doctors office with these spots, she suggested I see a Physiatrist.

There is a reason for this. You see at the same time the hunt for the reason of the rash was going on, I was also dealing with chronic pain from a car accident. She thought the rash anxiety related. I was desperate,so I made the appointment. I thought maybe that I might finally find out the reason for all of these sores and scabs I have been cursed with. Well, I was given the diagnosis of Self-Mutilation. I kept trying to explain the cycle in which this skin condition had, he didn't believe me. Now Self-Mutilation is on my medical record, I was the cause of these sores, I made them. I was put into the same catagory as a person that was into self cutting themselves.

Yes I scratch at them, but no I do not sit there and dig holes in my skin. Why would I purposely scar my face and body? I used to have perfect skin, I never even got pimples as a teen. I have always have had a rather light complextion, that scars easily. Now I can't go outside with a T-shirt on without people looking at my arms. It is like they do not want me to touch them...like I have poison ivy.

I then went to a dermatologist thinking ok, they will know what this is. I told him about my previous diagnosis of self-mutilation, in a joking matter. Like how silly was that. I am so stupid...they didn't even run any tests. They didn't say it out right but I think they were in agreement with the shrink and I was dismissed.

It gets worse, here comes the disturbing doctor visit. I found out my chronic pain was due to degenerative disc disease, which I was diagnosed with while this whole search for my skin problem was going on. I was put on morphine for the pain.

Now keep in mind Morphine use is now in my medical record. I can't remember what street drug causes skin lesions, crack or meth? or something like that. Now when I would go to the emergency room or to the Dr. for anything they would ask me what the "spots" (that is what I call them), were from. A few people even asked me to see my teeth. Seriously? Because I found out tooth decay is common with meth users.

This is the worst experience I have had so far. I go to the emergency room for a pain in my hip and I am treated like a drug addict. They put me into a closed door room and asked me, "what else I was there for?" I looked at ER Dr. and said I can not put pressure on my leg. He again asked me what else was I there for. I also repeated myself again. I was given an X-Ray and the Doctor came in and told me I had a bone spur on my hip. He then left the room no other conversation was had with him.

I guess a long story short, after five plus years of having undiagnosed Dermatitis Herpetiformis, I have finally been formally diagnosed by a different dermatologist. I am happy yet so mad at the same time. Years! years! Now I am scared for life. I have gone through hell and why. I have always had all the symptoms of Celiac Disease, yet I just found out about it. I just started my new gluten free diet. I am only two weeks in and my skin is clearing up already.

The point of my story is why was I treated this way? Is it because I have tattoos (which are totally messed up now) and peircings. Or is it because Gluten allergies are so often misdiagnosed?
Has anyone else had this problem? Are doctors not educated enough on this disorder? I just don't want to see anyone to have to go through the problems and discrimination that I had to go through.

[beachbirdie]

I am so sorry you have been through this hell.

To answer your questions, yes. Gluten intolerance/celiac diagnoses do not come easily, especially when a patient does not fit the "classic" mold.

It is also a grievous thing that emergency medicine providers will pre-judge you because of tattoos and piercings, the added info in your record adds to their prejudice. When they see people they think are drug seekers, they often don't take those people seriously.

It should be possible to go to someone and have the "self-mutilation" expunged from your record. What an idiot who did that one to you.

Wish I could offer more help on the morons who blew off your problems.

You do have the right to correct medical records. You can get a copy of the record, and write a letter outlining the reasons for the correction you desire. You might want to enlist a good, fair doc to help you with this. If they will not remove the damaging information, you can escalate it to your state medical board.

You can get some ideas on how to do this, Google "how to correct medical records" or something similar. You will find articles like this: http://patients.abou...owtocorrect.htm


The good thing is, you are finally doing better! That is really great news.

Good luck!

[1desperateladysaved]

Wow! What a story. Yes, a whole lot of us have been told it is all in your head, or everything tests out great...A whole lot of diagnosis are missed. Now it is revealed to you. Now, you can start getting well.

***

Diana

[squirmingitch]

What a nightmare you have been through! I'm so sorry to hear this & I know it pains you greatly. You have been grievously wronged.

I think Beachbirdie's suggestion for fixing y our med records would be a good thing & it would also help you to get some closure on that aspect of it too.

Unfortunately doctors are NOT educated enough on this disorder. Even GI's are not educated enough on this disorder. And then so many have no clue about dh. Most derms have no clue about dh. And this is also why it is very common that celiac & non celiac gluten intolerance are so often misdiagnosed. And yes, if you read here you will see that MANY have gone through the problems getting an answer to what was wrong with them. Quite a few have been very, very close to losing their lives.

If you have a facebook page you might help others by posting about celiac disease & dh.

Welcome to the board! And if you need any help we are here. Any questions, rants, raves, pity parties, & success stories are all welcome here.

[rosetapper23]

I'm so sorry to hear your story! And, yes, I was treated in a similar fashion. All the dermatologists with my HMO were in agreement: I simply had a bad case of acne (my DH is on my face and neck) that wouldn't respond to medication. I would sit in their offices and cry....and say, "But it itches and peels! And it's terribly painful and symmetrical. Does acne do that? NO!" Finally, I was told that I needed psychiatric help to deal with my inability to accept my "diagnosis." That did it! I told them they only offered that bit of advice because they were too incompetent to figure out what I actually had.

When I found out that I had DH, I sent a letter to all of those dermatologist explaining what I had, reminding them that I had been right the entire time, and that they had been dead wrong! I cc'd the administrative office of the HMO, but I never heard back from anyone.

Also, whenever I met people in law enforcement (parents of my children's friends, etc.), I was always treated like they suspected I was a meth addict because of my skin condition.

I'm so very glad that you finally have a diagnosis! Please consider writing all of those doctors who wasted your time and money and who were incompetent and lacked compassion for your medical condition. They need to be reminded that they don't know everything....and that they need to continue learning.

Lastly, yes, your tattoos and piercings may have contributed to their judgmental attitudes. My son (also a celiac) was attacked while walking from school to a nearby fastfood restaurant at lunch time and the attacker broke my son's nose. He was only 15 at the time, but because he dressed like a skateboarder, the surgeon we saw at the HMO treated him like a gang member. He denied him surgery to fix his nose and told him that he could just punch him on the other side to make it straight again. I don't have a lot of respect for doctors, in general.

I hope your health continues to improve!

[Hopeful1950]

Oh man. I wanted to scream after I read your story.

It took me 8 years to get diagnosed and I got blown off and told I 1) was a "picker", 2) I had "stress eczema 3) "neurotic excoriations". "Use this cream and stop scratching"....

All along I was seeing a good psych doc who kept telling me that they were full of bull and to keep trying. I found an allergist who was knowledgeable and he helped me. He was surprised at how I had been treated since it was obvious to him that I was blistering and THEN scratching.

And, by the way, opiates can make the itching worse. They can cause itching in people who don't normally have any skin problems. I was prescribed a short course of hydrocodone when I hurt my back a few years ago and my "spots" itched even worse. I know you have chronic pain so you might not have a way around it.

Just a side note about how they treated you at the hospital. Here's a good story. My husband recently had open heart surgery (5 by-passes). He was on the heart/lung pump for 6 1/2 hours. Apparently being on the pump that long can cause severe anxiety for a few weeks after. My brother (a doctor) told me to ask for some medication to calm him when they released him from the hospital. The hospitalist refused to give him anything stating "that's the kind of drug that is worth a lot on the street". I was shocked! I think they are just paranoid and ignorant. When I told the surgeon about it he was livid and heads rolled. So it's not just you who is getting treated this way.

Welcome. You'll get great info and support here. This forum helped me keep my sanity.

[shadowicewolf]

Oh hun

I've had a skin condition for a long time, that for whatever reason, acts similar to achne. Bumps with core like things that usually dissipear immedently afterwards. However, it also has a lovely ability to produce massive cyst like things that are right on the skin surface, bust, hurt, pus, etc. It doesn't matter how much i scrub, lotion, do, it remains the same. The doctors just shrug it off. I've tried antibiotic creams, pills, and whatnot, and it has yet to go away. They do not itch thankfully, but can be painful. It has also been seen on my upper legs and butt, but not as often. As a result, i have a lot of scars on my arms, some of which are rather big (biggest is the size of a quarter i think?), so i understand the tshirt thing (though since going gluten free the big ones have vanished :3, the little ones are still sorta there).

Hang in there This site is lovely for support and is one of the reasons i come back.

[Pigmi]

Thank you so much, I am so happy to find this forum. I guess the other day...yes I needed to rant. I am still a newbie when it comes to what I can eat and not eat. Sadly alot of items are hitting the garbage can. I know my taste buds will get used to the new food, but right now I am stuggling with finding food I like.

As far as records go, well I just saw a new phyciatrist last week and it just happens that his wife has been gluten intolerent for the last 10 years. So I finally have someone that believes and knows what I am and had gone through. I have my second meeting with him in two weeks, I will definately talk to him about getting my records changed. As far as the narcotics go, I am perminately black band in the state of Wisconsin. I really do not think there is much I can do in that department. I think if I would try to fight that it would make me look like that "drug-seeker". That is ok I guess, I am seeing a pain specialist now which provides me with pain medication. So, I can not accept any pain meds from any other location. It is a Major spot on my record, but I think I will have to live with it.

I just hope to see some improvement with other Celiac problems soon. Like my inabilty to absorb any of my medication. But I guess that can take quiet a few months. Now that this allergy is a real diagnosed problem and "not in my head" I can tell my story to all the doctors that once steroe-typed me. I just want to shake them and say have an open mind, do what you made that vow to do. Help people, Not Harm.

Seriously thank you and everyone, some times all we need is just a little understanding.

[Pigmi]

My problem is aren't the dermatologists supposed to be the ones to diagnose this skin issue? People pretty much have to self diagnose themselves Via the internet now a days. That is why I am so thank full for this site. I had to go to the doctor and say, I think I have a gluten issue because all the side affects I was having fit the bill. Now I just need to find out how to reduce the apperance of all the scaring which has been going on for the last seven years.

I am really sorry to hear about your son, I really would have lost it. I was in high school during the whole grunge era, before all the perscription drugs swaping and gangs problems. Then again I live in Green Bay WI, that ia as White Bread as you can get. Hell, we didn't even have the internet yet or cell phones. On thing I have learned during the time I was a manager at Hot Topic, was the more alternative kids that came in were the nices kids I had ever met. A lot would hang out in the store after school just because they got picked on if they hung out anywhere else. It made running the store a little harder but, I was a bit mom and manager. I knew all there names. So many times once parents got brave enough to actually go into the store, not hang out side the door, they found out we weren't so bad. Plus this is when we first opened and the store had a pretty dark look. Many customers would come up and tell me we have some of the nicest, most helpful employees.

I hope that, that experience hasn't kepted him down. Being pre-judged for what we look like has always and will probally will always be there. Just let him know there are also lots of people that are out there that don't judge the book by the cover. Doctors just need to figure that out.

[Pigmi]

Isn't it crazey that all of our skin issues can be caused by some thing so common. Everyonce in awhile I swear I had the same thing like when the first little pimple like bumps would appear I would try to pop them, who doesn't. Nothing would ever come out, but I swear to god it would make a crunch noise. That is when I knew it wasn't a normal pimple, and they would always scar no matter what I would use on my skin. I have used so much mederma. All I know is going gluten free has started my skin heal. I am thankful for this site and all the comments. I finally know I am not going insane. I might even be able to wear a sleeveless, anything again someday. Thanks for your help!

[shadowicewolf]

Isn't it crazey that all of our skin issues can be caused by some thing so common. Everyonce in awhile I swear I had the same thing like when the first little pimple like bumps would appear I would try to pop them, who doesn't. Nothing would ever come out, but I swear to god it would make a crunch noise. That is when I knew it wasn't a normal pimple, and they would always scar no matter what I would use on my skin. I have used so much mederma. All I know is going gluten free has started my skin heal. I am thankful for this site and all the comments. I finally know I am not going insane. I might even be able to wear a sleeveless, anything again someday. Thanks for your help!

Is it like a snapish type feeling? Mine do that, but still have cores part of the time.

[squirmingitch]

Here are some links for you. You may not be interested in all of them but they all contain good information. I'm glad you are healing but be aware that you can still have outbreaks at any time even gluten free (gluten-free) until all the antibodies get out of your skin which can take 2 years & even longer.
At this very moment I think the most important thing for you to read is the last link --- the Newbie 101. It will help immensely with getting this diet down pat. There is a massively steep learning curve to this diet. And WHOLE FOODS are the best thing for you for the next 4 months at least.


Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/


Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/


Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195


DH Photobank:

http://www.celiac.co...-dh-photo-bank/



Newbie 101 for celiacs

http://www.celiac.co...ewbie-info-101/

[Pigmi]

Is it like a snapish type feeling? Mine do that, but still have cores part of the time.

This is the ocd in me. I swear if you would remove the core, which you mention "I have always thought it might be the actual hair folical" the spot would be going away and healing up the next day. Have you also have found out that this was true?

[squirmingitch]

Pigmi, I wanted to talk to you also about your pain from the DJD (degenerative disc disease). I have been dx'd with this also. I have had less pain & fewer symptoms since going gluten-free. Gluten makes us hurt. it makes our bones & joints hurt. You may very well find that after going gluten-free you will need less pain meds or less strong pain meds. You may even find eventually that you won't need them at all. There are plenty of celiacs on this site who had horrible pain & have experienced great improvement on the gluten-free diet. Gluten affects our entire body. It affects our brain, gives us depression, affects us neurologically, affects our joints. I'm not saying you will wake up one day 2 months from now & be pain free but healing does happen. Healing takes time but it DOES happen.



Oh, & something I want to clear up. You call this a gluten allergy. Celiac is not an allergy --- not at all. It is an immune response. An auto immune disease. A far cry from an allergy. Just so you know.

[Pigmi]

Pigmi, I wanted to talk to you also about your pain from the DJD (degenerative disc disease). I have been dx'd with this also. I have had less pain & fewer symptoms since going gluten-free. Gluten makes us hurt. it makes our bones & joints hurt. You may very well find that after going gluten-free you will need less pain meds or less strong pain meds. You may even find eventually that you won't need them at all. There are plenty of celiacs on this site who had horrible pain & have experienced great improvement on the gluten-free diet. Gluten affects our entire body. It affects our brain, gives us depression, affects us neurologically, affects our joints. I'm not saying you will wake up one day 2 months from now & be pain free but healing does happen. Healing takes time but it DOES happen.



Oh, & something I want to clear up. You call this a gluten allergy. Celiac is not an allergy --- not at all. It is an immune response. An auto immune disease. A far cry from an allergy. Just so you know.

Pigmi, I wanted to talk to you also about your pain from the DJD (degenerative disc disease). I have been dx'd with this also. I have had less pain & fewer symptoms since going gluten-free. Gluten makes us hurt. it makes our bones & joints hurt. You may very well find that after going gluten-free you will need less pain meds or less strong pain meds.

I hope this gets to you, all of my responds have not been going to the actual person. Anyway, Did you find out that your meds started working better, the longer you were gluten free. For the last four years or so I have gone through a number of radio frequencys for my back. It kills the nerves that send the pain but they aren't a forever fix, the nerves do grow back. The burns stop the spasms that the degeneration causes in my back.

Right now I am on so "many" meds I want to say about 12 perscription and 15 suppliments. Many I have found out contain gluten, I found out. Some are for the pain but mostly I have a assortment for anxiety and depression. The problem I have had is my meds don't work the way I think they should. I am on the highest dose of everything. My insurance deductable is $2000 and I hit that two months ago. I can't afford to do this much longer. My hope is my meds will start to become more powerful and actually start working the way they are suppossed to. Then I hope I will be able to slowly get off some of them. My thyroid is also super underactive hoping that will also improve also.

I heard it might take awhile til I notice a difference, just my stomach is freaking out right now. Let's just say It has been over a week now since I have had a number 2. To much information right, sorry. Also thanks for the correction, This is just so new to me I forget what the terms are for what is actually going on. Off hand, when do you think you started to notice a difference in your mood and pain. I would love any personal advise or experiences from you. I need as much hope that I can get right now. I have been so bummed going through this food transition. Never realized I used food as a crutch for my depression until I couldn't have what I binged on anymore. Thank you so much!