[dmouse]

Thanks to everyone, but especially you two, pushing me to look further, I may have found out what is wrong with me!
Mastocytosis
Here's the web address to the explanation of it if anyone is interested.
http://www.aafp.org/afp/990600ap/3047.html

[mrsD]

It would be very interesting if this were the case.

[dahlek]

don't put all your hopes into this one basket? Tho, I hope it is something readily treatable.
Bodies, as you are continuing to learn, are very complex things? They make computers seem simple and stupid by comparison.
Don't you LOOOVE ALL THOSE BIG, FAT WORDS? It does get you an education in doc-speak tho, doesn't it?
Keep learning, but I advise you to go slowly...as there is soo much to asorb and digest [pardon any puns here] with all you have to process into sense for you! Docs don't have the self-interest in this all that you have, and never forget that.
Hugs and hope and good things and soon! 's - j

[dmouse]

don't put all your hopes into this one basket

Lets just say I'm cautiously hopeful! I was convinced it was thyroid before and was proved wrong.
What caught my eye and caused me to research more was the comment that after an attack, the person is left feeling lethargic. I've noticed and mentioned to my hubby how the itch comes and goes, lasts anywhere from 1-4 days and when it stops, I'm extremely fatigued. I've been bringing up this itch to the docs and not one has even looked at my skin since 2005. This just seems to tie all my symptoms together. I'm going to get an appointment with a dermatologist soon as they are the ones to diagnose
that disorder.

I'll keep you posted.

[mrsD]

The incidence of mastocytosis is 1:1000 to 1:8000.

Compare to hemochromatosis and gluten intolerance which is
1:300 or so. The numbers for gluten intolerance have changed radically in the last decade. They may be reported as more rare still in some monographs.

The rash seen with gluten intolerance is similar to mastocytosis.
http://www.aafp.org/afp/980301ap/pruessn.html
gluten intolerance is a significant cause of neuro symptoms, like PN.
One may have gluten intolerance and not be a true celiac. It is thought to be
acquired during life, with exposure to gluten. There is one study implicating
NSAIDs as causative agents in allowing gluten peptides to cross the GI mucosa
and begin the allergic responses. Interest and incidence of gluten intolerance has
paced the OTC status of NSAIDs and hence their huge use.

Hemachromatosis:
http://www.aafp.org/afp/20020301/853.html

I have only had 2 patients with mastocytosis in 40 yrs.

I am very curious as to how this turns out for you.

Good luck!

[dmouse]

Looked at both articles you posted. Thanks for the info. My labs for iron are all within normal ranges, so I'm thinking it's not hemachromatosis, and my lesions look nothing like those in celiac's. Here is a link to my actual skin photos: http://dnhatch.tripod.com/skin/

There is a photo of my arm lesions, but they are faded at the moment. I managed to find a photo of urticaria pigmentosa which is posted as well and looks EXACTLY like mine when it's inflamed and is what started me down this path of research. Add all this to the fact that I developed an allergic asthma out of no where about 9-10 years ago. I was sitting in a computer class at college and just all of the sudden, I could hardly breath. My hubby and I were just dating at the time, he came and picked me up and took me to the docs. That's when I found out it was allergic asthma. I had never had asthma in my life prior to that! I've also had a chronic "runny nose" for as long as I can remember. The acid reflux, I've had a problem with it since I was in High School. The skin lesions developed around the same time as the asthma, but the itch wasn't as bad back then. That has progressed over the years. About 4 years ago, is when it started getting bothersome enough to have to take Benadryl at night so the itch wouldn't wake me up.

Most often this disorder isn't picked up in labs, at least from what I've read about it. And not sure if it's relevant or not, but my monocytes are always slightly elevated, since 2002, and my basophils (at least the last 2) where at the top: my level 1.0 (ref range 0-1%) during fasting blood labs Sept 08 & Dec 08.

Again, I realize I could be way off base, but it does warrent investigation. I know it is rather rare - considered an orphan disease - but my mother has a history of having high histamine levels and I just read something on high histamine that said a quick home test is to take 50 mg. niacin and if you get a flush from such a low dose, you have high histamin. I've never been able to take niacin, since I was a kid - the flush is too uncomfortable. Tried it again in my early 30's and couldn't.

I may be wrong, but in the event I'm right, and the potential to have an anaphylactic reaction - I have to get it at the very least ruled out.

Thanks again for your valuable input.

added info I also have symptoms of what could be an adrenaline response to a histamine release. Sparodic heart palipitations, racing pulse, shakes followed by a headache - these happen together. I've also noticed on the nights I don't have to take Benadryl (no itch) I don't sleep well. My brain seems over active and won't shut down. Excessive histamine can also explain the dips I get in BP. Sometimes my BP is normal ranges 100's over 70's and the neuro ruled out POTS.

[mrsD]

and would start to find the trigger(s).

That bronzing on the back seems different from the red lesions, which seem more like bug bites. They have "centers", but that could be from the scratching.

The tests you posted? Are those the ones you refer to as normal for iron? You didn't have the specific ones that show iron accumulation, TIBC and transferritin. Most people with hemachromatosis do not show anything grossly abnormal on regular iron tests.

Labs 12/02/08
Test – my value - (ref value)

WBC - 8.4 (4.0-11.0 k/uL)
RBC - 4.59 (4.2-5.4 M/uL)
HGB - 15.1 (12.0-16.0 g/dL)
HCT - 44.1 (37-47%)
MCV - 96.1 (80-100 fL)
MCH - 32.9 (27-34 pG)
MCHC - 34.2 (32-36 g/dL)
PLT - 235 (150-400 k/uL)
RDW-CV - 12.6 (11.7-15.0%)
MPV - 11.6 (H) (7.3-11.1 fL)

Neutrophil - 58.7 (40-70%)
Abs Neutrophil - 9.93 (1.8-7.7 K/uL)
Lymphocyte - 28.6 (22-44%)
Abs Lymphocyte - 2.40 (1.0-4.0 k/uL)
Monocyte - 7.9 (H) (0-7.0%)
Abs Monocyte - .66 (0-.08 K/uL)
Eosinophil - 3.8 (0-4%)
Abs Eosinophil - .32 (0-0.4 k/uL)
Basophil - 1.0 (0-1%)
Abs Basophil - .08 (0-0.2 K/uL)

more reading for dermatitis herpetiformis:
http://emedicine.medscape.com/article/1062640-overview

When you go for your evaluation, they will ask you about triggers so it is best to start now and make a little history.
When you get the itching, what happened before, how long it lasts, etc.

Alot of people have flushing from niacin. I do. It doesn't mean you have mastocytosis. There is a place that does work with high histamine people, histadelia. There are supplements used
to correct it or make it less intense. Histadelia is not recognized by all doctors.
http://www.drkaslow.com/html/histadelia.html

Dr. Walsh and the Pfeiffer Institute are the major sources of information on histadelia.

Many things can give confusing rashes. I have attacks of a severe blistering at our vacation home. Mostly on my arms.
but one year it was so terrible..on my legs and hands too.
So I sent an email to a research biologist at a major University, thinking it was zebra mussels(these spawn in the summer and are new to us). We bathe in the lake because we live on an island with no power, etc.
It turns out that only during about 2 weeks of the summer does this happen. Otherwise I can go out in the sun with no problem and have always tanned easily with no burn.
This professor said he thought is was the algae bloom. These microscopic cells end up on the skin, and combined with UV radiation, cause a UV dependent contact dermatitis. My husband and son don't get this, only me.
So, I stay out of the water for the last part of June and early July and bingo...no blistering stinging horrible reaction. It took several years to pin it down.

I share this to show, that it is very hard to pin down skin reactions. If you turn out to have mastocytosis, you may also need to consult an allergist.

You can become resistant to Benadryl. People who use it for sleep can become used to it. Have you tried melatonin?

[dmouse]

I hope you understand that I'm not discounting your suggestions. I will definatley bring all this to the attention of the dermatologist.

Here are the values for the Iron and Celiac's I've mentioned:

MPA Serum IgG - 978 (717-1411 mg/dL)
MPA Serum IgA - 108 (78-391 mg/dL)
MPA Serum IgM - 110 (53-334 mg/dL)
MPA Serum Kappa - 786 (534-1267 mg/dL)
MPA Serum Lambda - 464 (253-653 mg/dL)
MPA Kappa/Lambda Ratio - 1.69 (1-3)

The brownish spots on my torso only inflame when I scratch, and yes, the redness is from scratching myself raw - those are spots of blood. I have noticed a pattern of itchiness first, and the scratching brings the "rash", which I am fully aware can happen without the disorder but might be Darier's sign. Hot showers will net the same result. The itch will last anywhere from 1-4 days, after which I'm exhausted. edit: None of my lesions are blister like. They appear hive like.
The hyperpigmentation on my back has been there since I was @12-13yrs old and I don't know if its related to all this or not. It's just in my photo collection for reference.
I try to not take the Benadryl often, and when I do, the lowest dose, and mostly at bedtime, but as I mentioned, if I'm not itching, I won't take it. The most I've taken is 4 days in a row, with a pause of at least 2 days.

I realize this is all speculation and only a doctor can confirm or rule it out.
I will start a food/symptom journal, thanks for that advice!

[mrsD]

these are immune markers.

Don't underestimate a journal. It will really help with the diagnosis and speed treatment in the right direction.

Your CBCs are pretty normal for a woman. Many women would be lower in red cells. Many women still having periods show lower results.
You are almost out of range for MCV --this is a beginning marker for B12 deficiency. But your serum B12 is not really low. Some doctors ignore MCV commonly, unless there are other frank signs of anemia.

[dmouse]

My mistake. Everytime I did a search, I typed Serum IgG or Serum IgM. It was the word serum that kept showing up as tests for iron. The IgG is to look for celiac's? At least that's what I've read.

I did find info that says the HGB and HCT would indicate high or low iron and mine are within normal ranges. If that means anything.

I'm not understanding how you say my MCV is almost out of range? It looks to be almost smack in the middle at 96.1. Am I missing something here?

Again, just kinda brainstorming with all this. The more info I have, the better my chances of getting a diagnosis.

Please, keep the info coming!