Don't Know Where To Start Or What's Going On!

[Onlyjamielynn]

Hello! I'm new here but have been struggling for the last 7-8 months. Last June I dyed my hair and wound up getting a rash on my neck and back of my head. The same thing happened in the end of August. Labor Day weekend my boyfriend and I moved in together into a new place. Two weeks later we went on vacation. Two weeks after vacation I started getting a rash over the top part of my abdomen. It it her like crazy! I went to the er and they said I was having an allergic reaction. They didn't know from what. The put me on prednisone but that seemed to make me worse! Eventually it spread to my chest, arms and legs. After a few weeks it healed somewhat but the rash never fully went away. Every couple of weeks I wind up having assume break outs. It's terrible. All over my neck, back, arms, and legs. The itching is insane. I have told my boyfriend since we moved that I have felt so tired I could go to sleep as soon as I get home from work. I am literally drained for energy. I constantly just don't feel good. I have complained about joint pain a lot lately. Headaches and just constantly forgetting stuff. I had a massive hive reaction about three weeks ago. They gave me some steroid creams at the er and dermatologist office. Refused to do bloodwork or a biopsy. This week it was finally starting to simmer down. Last weekend at my parents I had been itch free. But I had a beer and not even half way through my stomach started hurting and my hives started acting up. This past Friday I came home from work and had a beer and again the hives started itching and became inflamed. I dyed my hair (only top half) and by Saturday I realized I was having a reaction to the hair dye. I started doing some research and saw that a lot of people who have hair dye also have celiacs. I then realized I react when I drink beer or wine but I don't if I drink captain Morgan which is gluten free. Also in January I started going to the gym and doing low carb. When I did low carb it was like the rash really really really simmered down. What are thoughts on this??? Could it be celiacs? I would upload pics of the rash if I could. But when I looked up celiacs disease rashes it looks identical to some of the images.

[kareng]

Hello! I'm new here but have been struggling for the last 7-8 months. Last June I dyed my hair and wound up getting a rash on my neck and back of my head. The same thing happened in the end of August. Labor Day weekend my boyfriend and I moved in together into a new place. Two weeks later we went on vacation. Two weeks after vacation I started getting a rash over the top part of my abdomen. It it her like crazy! I went to the er and they said I was having an allergic reaction. They didn't know from what. The put me on prednisone but that seemed to make me worse! Eventually it spread to my chest, arms and legs. After a few weeks it healed somewhat but the rash never fully went away. Every couple of weeks I wind up having assume break outs. It's terrible. All over my neck, back, arms, and legs. The itching is insane. I have told my boyfriend since we moved that I have felt so tired I could go to sleep as soon as I get home from work. I am literally drained for energy. I constantly just don't feel good. I have complained about joint pain a lot lately. Headaches and just constantly forgetting stuff. I had a massive hive reaction about three weeks ago. They gave me some steroid creams at the er and dermatologist office. Refused to do bloodwork or a biopsy. This week it was finally starting to simmer down. Last weekend at my parents I had been itch free. But I had a beer and not even half way through my stomach started hurting and my hives started acting up. This past Friday I came home from work and had a beer and again the hives started itching and became inflamed. I dyed my hair (only top half) and by Saturday I realized I was having a reaction to the hair dye. I started doing some research and saw that a lot of people who have hair dye also have celiacs. I then realized I react when I drink beer or wine but I don't if I drink captain Morgan which is gluten free. Also in January I started going to the gym and doing low carb. When I did low carb it was like the rash really really really simmered down. What are thoughts on this??? Could it be celiacs? I would upload pics of the rash if I could. But when I looked up celiacs disease rashes it looks identical to some of the images.

Yes...lots of people with Celiac dye their hair. Lots of people without Celiac dye their hair. If you meant " have a reaction to hair dye", it doesn't have anything to do with Celiac disease. There are people who are allergic to things in the hair dye, some have celiac & some don't.

Celiac isn't an allergy. Gluten must be ingested to start a reaction. Hives & topical reactions sound like an allergy.

[Onlyjamielynn]

I should have been more clear. When I looked into people having a ppd allergy there was a connection to thence celiacs disease. Also it is simply not just a reaction. It has been going on for 8 months. Nothing cures it. I've been on prednisone, antibiotics (different kinds), on a medication for mold (they were thinking it might be a mold problem in the home but that has been ruled out by bloodwork and home mold testing), numerous steroid creams. The only thing that ever settled it down what when I went low carb (essentially cutting out most foods that are wheat based!).

[Onlyjamielynn]

Also I realize celiac isn't an allergy. I never said it was. And gluten has been ingested. Which is why I'm questioning this. Especially since I have immediate reactions after ingesting certain items that are extremely high in gluten. Also if it was just an allergy I'm pretty sure that the steroids and allergy meds would have worked (Zyrtec, Allegra, hydroxyzine and the strongest hydrocortisone cream available by precription) .

[kareng]

Sounds like I am of no help here. Sorry to have made you angry.

[LauraTX]

 ....I started doing some research and saw that a lot of people who have hair dye also have celiacs. I then realized I react when I drink beer or wine but I don't if I drink captain Morgan which is gluten free. Also in January I started going to the gym and doing low carb. When I did low carb it was like the rash really really really simmered down. What are thoughts on this??? Could it be celiacs? I would upload pics of the rash if I could. But when I looked up celiacs disease rashes it looks identical to some of the images.

 

Just to poke at a few points here, beer generally contains gluten, but wine does not.  A low carb diet is not gluten free, and a gluten free diet is not low carb.  However, a low carb diet can result in a decreased intake of gluten, but since gluten is not exclusively in high carb foods, it won't do the trick if you have a problem with gluten. Were you also generally eating healthier and not consuming alcohol at this time?

 

If you feel like you may have celiac disease then you need to get in to see a GI doctor and get tested.  However, the symptoms you describe with reacting to hair dye have nothing to do with celiac disease if you have it as well.  A lot of people react to body products like PPD in hair dye, and some reactions can last a very long time, although it is rare.  (For those reading, PPD is a chemical common in hair dye that causes a lot of people problems.)  I would highly recommend being very careful of what products you use on your body.  Because you are having unexplained skin reactions to something, you may want to see an allergy specialist who can test for common skin allergies.

 

At the ER they are only going to do what is necessary to stabilize your condition.  If you do want to get tested for celiac disease, get in touch with your primary care doctor and ask for a referral to a GI doctor.  You can also make an appointment yourself, but some insurance plans will require a referral.  A lot of rashes will look very similar and I recommend not self diagnosing too quickly before you get further testing done by a GI and an Allergist.  

 

For celiac screening to be accurate, you need to be consuming gluten, so don't go on a gluten-free diet until after you are seen by a specialist.

[Onlyjamielynn]

Sorry I typed this late at night and after taking an anti itch medicine so some of it may not have made that much sense. Ok so when I did low carb I basically was only eating pure protein (mostly chicken) and natural veggies. That's when I noticed it clear up the most. It was almost gone. But then something's happened and I wound back to my regularly scheduled food and that's when it came back. As far as wine not having gluten that's not always the case. Gluten is introduced when theyake a flour paste to seal the casks. And it's also used as a refining product for the wine. With wine I don't break out every single glass every single time. And I don't break out with captain or a higher shelf vodka. Always with beer and occasionally with wine.

I'm not trying to be a jerk but I've done my run around with this for the past 7 months. I have no histories or illnesses. Prior to this I was going to the gym two times a day. Now I can barely get out of bed. I have never had any skin or allergy problems before. I mean I think I've only ever had a zit like five times in my life! I've been to both er, regular and specialty doctors. They all agree that the rash does not look like something like bed bugs or scabies. They all agree that it is not psoriasis or exzcema. Conclusive testing shows it's not any type of mold or anything encirowmtal in the home.

I am aware that PPD and celiacs are COMPLETELY DIFFERENT. However what I was saying is that after speaking with and reading a large number of people with PPD allergies also had celiacs. I know they are not related. But made me curious because I didn't have the rash or develop the allergy to hair dye until around the same time but then realized other things trigger the rash and the rash was clearing in its own when I went back to eating fresh protein and veggies.

[kareng]

Sorry I typed this late at night and after taking an anti itch medicine so some of it may not have made that much sense. Ok so when I did low carb I basically was only eating pure protein (mostly chicken) and natural veggies. That's when I noticed it clear up the most. It was almost gone. But then something's happened and I wound back to my regularly scheduled food and that's when it came back. As far as wine not having gluten that's not always the case. Gluten is introduced when theyake a flour paste to seal the casks. And it's also used as a refining product for the wine. With wine I don't break out every single glass every single time. And I don't break out with captain or a higher shelf vodka. Always with beer and occasionally with wine.

I'm not trying to be a jerk but I've done my run around with this for the past 7 months. I have no histories or illnesses. Prior to this I was going to the gym two times a day. Now I can barely get out of bed. I have never had any skin or allergy problems before. I mean I think I've only ever had a zit like five times in my life! I've been to both er, regular and specialty doctors. They all agree that the rash does not look like something like bed bugs or scabies. They all agree that it is not psoriasis or exzcema. Conclusive testing shows it's not any type of mold or anything encirowmtal in the home.

I am aware that PPD and celiacs are COMPLETELY DIFFERENT. However what I was saying is that after speaking with and reading a large number of people with PPD allergies also had celiacs. I know they are not related. But made me curious because I didn't have the rash or develop the allergy to hair dye until around the same time but then realized other things trigger the rash and the rash was clearing in its own when I went back to eating fresh protein and veggies.

I feel I must comment on incorrect facts. Wine is gluten free. Wheat is not added to wine. That seems to be a internet myth. This has been discussed here many times.

Not sure where you get your facts about the PPD allergies affecting Celiacs in a disproportionate way. But that is an allergy and, Celiac is not a skin contact allergy. I would love to see read the study that showed that because that sounds like an important thing to know.

You mentioned you had some skin reactions off and on but they became more continuous when you moved into a new place. They went away when you stayed elsewhere. I would think it was something in the new home.

If you want to find out if it is DH, go to a dermatologist and get the rash biopsied. Get a

Celiac blood panel. You have probably read this, but you need to be eating gluten to get an accurate test. It sounds like a horrible rash and I hope you figure it out.

[Onlyjamielynn]

Please let me clarify.  As far as the PPD allergy and Celiac’s, I am aware that PPD is an allergy and Celiac’s is not.  I know that they are completely different.  What I have been trying to state is that when I started looking into the PPD allergy a lot of people that had the PPD allergy also had Celiac’s disease.  I am not saying that PPD affects Celiacs in a disproportionate way.  The only thing I do know is that I have spoken to quite a few people with the PPD allergy also suffer from Celiac’s.  Which I know are two completely different things.  And yes I understand they may not have anything to do with one another.  When I spoke to some people about my issues, they guided me in the fact that I may want to inquire about Celiac due to the other issues.  Since they were people who had both and also knew people who suffered from both.   But I never claimed that because they had one they had the other.  Which is why I even came here seeking some sort of information.

 

As far as the home, we have never stayed away from the home.  And yes the rashes started after I moved into the home, however, I am not the only person in the home.  I have a 4 year old daughter in there and my boyfriend lives there as well.  Per the doctors if it was something in the home then I would not be the only person with it.  Especially if it was something like bed bugs or scabies.  Also, the items in the home, such as my bed, are my items.  I slept in that bed for two years (which was new) prior to moving and no issues.  We have been tested both by blood tests and a professional company coming out and surveying and doing their own testing in the home.  There are no environmental issues from the home at play.  Soaps, detergents, skin products, etc have not changed.  Yes after moving in we did go on vacation for a week.  That was last September.  A few weeks after returning from vacation is when the rashes started.  And while at some points they have simmered down, they have never completely gone away from the first day of initially having it.  The points when the rash has simmered down is when I cut out the breads, beer, pasta, etc.  I was mainly only eating chicken, beef and fresh veggies.  Which is another reason I became inquisitive on this. 

 

I basically went from a person who went to the gym sometimes twice a day, no skin rash or problems and feeling generally healthy prior to this to someone that is covered in insanely itchy rashes/hives, taking medications that do not help, feeling sick to my stomach more often than not, can hardly get out of bed some days and having joint pain.  And becoming frustrated with doctors and specialists when they tell you to try something for a couple of weeks and come back in a month and then do it all over again.  Acting like they are afraid to actually do a blood test or something.  I’m not trying to create a bunch of controversy, I’m just trying to find out what could be going on.

[notme]

well, if you hope to get an accurate test done for celiac, you have to continue eating gluten until testing is complete.  you could have celiac, you also could have something else.  there are plenty of symptoms for celiac (like 300) and many of them can be attributed to other disorders.  your doc could start with testing you for vitamin deficiencies and go from there.  he/she could at least do a complete work up on you for a starting point.  

[Fenrir]

Well, you seemed pretty set on the fact that it could be celiac disease. Not many of your symptoms fit Celiac disease but celiac disease is strange and sometimes presents differently. If you truly feel this is a possibilty, go see your Dr. and have a good celiac panel ordered.

 

Based on what you describe I think it is unlikely you have celiac disease but if it helps narrow down your opinion of what is wrong then maybe it would be worth it.

[nvsmom]

If you suspect your rash might be dermatitis herpetiformis, you might want to see a dermatologist about it. they can biopsy the area next to the rash and that will often diagnose celiac disease.  Most people go through the blood tests first as it is less invasive. Ask your doctor for these tests:

tTG IgA and tTG IgG

DGP IgA and DGP igG

EMA IgA

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

I would look into allergy testing too. An allergy specialist deals with the IgE part of our immune reaction whereas celiac disease affects the IgA and / or IgG parts of the immune system. If you have two parts (like celiac disease and an allergy) acting up at the same time, I can imagine it would be a maddening experience.

 

Best wishes.

[Onlyjamielynn]

Thank you. It is maddening because the doctors act like they don't want to do bloodwork or biopsy. Like I'm just supposed to keep taking all these meds and shoot in the dark and see which one sticks. Meanwhile my skin is completely destroyed and I just want to cry I look in the mirror everyday. But thank you for the information. I am contacting yet another doctor today. My feet and hands were itching bad and today part of my fingers seemed numb. While they have been tingly itching all day. Back to the drawing boards.

[Fenrir]

Thank you. It is maddening because the doctors act like they don't want to do bloodwork or biopsy. Like I'm just supposed to keep taking all these meds and shoot in the dark and see which one sticks. Meanwhile my skin is completely destroyed and I just want to cry I look in the mirror everyday. But thank you for the information. I am contacting yet another doctor today. My feet and hands were itching bad and today part of my fingers seemed numb. While they have been tingly itching all day. Back to the drawing boards.

Seems to me like what you are experience is more of an allergy situation, or another possible autoimmune disease. It sounds like your rash isn't always in the same spot and you can figure out what is causing it. This may sound stupid but have you tried changing soaps, laundry detergents...ect? It might be you are allergic to dyes....ect.

 

I would probably see if you can get some allergen testing done if you haven't already.

[Onlyjamielynn]

The rash is always in the same areas in the same type of pattern.  It always happens the same way.  it starts around the base of my hairline at the back of my neck, comes down and wraps around my neck to my chest.  My chest is usually the worst.  Then spreads to my stomach and on my arms and legs.  Never on the bottom of my feet, never on my face, never on the bottom of my hands, never in my armpits or private areas.  I asked the dermatologist about allergies and he was convinced that it is not an allergy.  All of my soaps, lotions and detergents are hypoallergenic mild items.  At one point in time a while back I was using a scented one and that's when I changed to the hypoallergenic items.  We also replaced out washing machine and dryer just to make sure the clothes were super clean and not being cleaned with old dirty water.  None, not one single of the allergy meds have helped.  Not zyrtec, allegra, prednisone, benadryl, hydrozyine.  

[Fenrir]

Well, then I would think it is probably some sort of autoimmune disease or anxiety. Anxiety can cause these sorts of unexplained skin conditions as well. If it is an autoimmune issue it can be very difficult to figure out which one.