dhalek & MrsD
 

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

keep us posted....
 

It would be very interesting if this were the case.

Mite be? But.....please, please please..
 

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! :hug::hug:'s - j

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.

Please keep us posted...
 

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!

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.

I'd keep a journal...
 

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.
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?

Can say thank you enough...
 

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!

these are not iron tests...
 

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.

not disputing, just brainstorming
 

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! :D

The MCV is 4 pts below the upper range... given that tests are not always 100% accurate... you are close.

Please read these 16 facts:
http://www.ironoverload.org/facts.html
Some hemachromatosis patients are LOW in hemoglobin.
Some are normal. Iron in the blood cells does not reflect iron deposited in tissues. In fact elevated iron shown in a typical CBC may indicate polycythemia vera...which is too many red blood cells.

These are the diagnostic tests:
http://www.ironoverload.org/diagnosis.html

If TIBC and transferritin are elevated then they do the DNA tests.
Notice the % of Irish descent listed.

Still brainstorming...
 

The only thing that gives me pause about the iron overload is the fact that I've had the hyperpigmentation for @20 years. Having it that long something should have showed up in my labs by now - either very low hemoglobin/hematocrit, or very high and I should have shown a marked vitamin b-12 deficiency from everything I've read.

And, I remember the day it all appeared. It was after being in the sun all day at my uncle's lake. To this day they get darker in the sun, and fade in the winter.

The other skin lesions on my torso showed up a few years ago, shortly after the first asthma attack.

My mother has a cousin with polycythemia vera, and I've looked into that as well, but my liver enzymes are always within range. The fact that hot showers cause the itch and welts/hives/lesions is what made me consider it, but extreme temp changes can also cause that reaction in mastocytosis. The hives with itch also appear when I over heat and sweat...

It could also just be something more simple like Lupus! But, my hands, face and feet don't get the itch/hives, which is also common in mastocytosis - it "generally" doesn't effect those.

Just speculating though. As I said, only a doctor can really tell me.

Still waiting for those punch biopsy results. Wondering if they may offer insight.

Thanks once again!

Fabry's is also a consideration??

cyclelops,
I just read up on that. I don't have papules, mine are flat, unless they get irritated which makes me scratch them, then they become almost like a hive. I also don't have problems with my eyes other than aging. Plus, my urine protein test was "within range".

Thanks for that though. Anything I can research and give my doc is helpful!:)

also check out
 

Carcinoid syndrome:

http://emedicine.medscape.com/article/282515-overview

flushing/wheezing/ GI cramping/diarrhea... are some signs.
Many times people live with this for years until it spreads to the liver and the flushing/wheezing become severe.

This is a slow progressive cancer. You can have it for decades.

A 24 hr urine collection test for serotonin is done. But there are some blood tests too I believe now.

You can have multiple problems too. Perhaps not all of your
symptoms are connected to one thing only.

Thanks for this. I'll read up on it!

You are a very valuable resource! I do appreciate all your input!

The tests to look for gluten sensitivity and celiac disease are:

antigliadin IgA, IgG (indicates gluten sensitivity)
anti-tTG (anti-tissue transglutaminase indicates celiac disease/ villous atrophy)
Total IgA (to rule out IgA deficiency which can false negatives)

A skin biopsy of the tissue surrounding a lesion is how Dermatitis Herpetiformis is diagnosed (there would be IgA deposits in surrounding areas), but because gluten sensitivity can cause a huge array of skin rashes that aren't technically DH... the blood tests are also in order to look for the antibodies associated with gluten sensitivity. Here are some more pics of DH... there can be wide variance of lesions, not alway blistering, etc. Take the time to look through them, some examples are mild, some are severe. Typically, itching is present... but even if without itching, I'd rule out gluten sensitivity.

http://www.lib.uiowa.edu/hardin/Md/d...etiformis.html
http://www.csaceliacs.org/dh_symptoms.php

Here is a sampling of some other skin conditions associated with gluten sensitivity; it is notorious for causing all sorts of rashes from a to z. It can cause rashes other than DH.
http://jccglutenfree.googlepages.com...skinconditions

I hope you will follow up on this possibility.

I also found ...
 

I also found an interesting rash that appears on people who are
niacin deficient.

This happens on sun exposed skin, and is called pellegra. It varies from mild to severe. In the mild forms it is often misdiagnosed.

It can happen in people who have Carcinoid syndrome.

When actual pellagra is not present, there are still rashes called pellagroid.
from http://www.ncbi.nlm.nih.gov/pubmed/15798565

If you search "pellagroid" you will find more on Google.
The rash of pellagra is triggered by UV exposure.

Thanks again for your help!
 

I will definatley look into these as well. I just sent you a PM before I saw this response.
I must not be understanding my labs. I thought the following were for the celiac antibodies?
MPA Serum IgG - 978 (717-1411 mg/dL)
MPA Serum IgA - 108 (78-391 mg/dL)
MPA Serum IgM - 110 (53-334 mg/dL)
Or are they for something else? This was the first time I was tested for them, so they are rather new to me.

As for Celiac's, in your opinion, what if I tried a gluten free diet for about a week?

I've been trying to keep a log/journal and not taking any Benadryl to get a more acurate idea. The itch seems to be rather cyclical. 4 days of itching, followed by a 2 day no-itch period, regaurdless of what I eat or don't eat. Don't know if that means anything or not.

Going gluten free is going to need more than a week.

Months is more like it.

After looking at your lesions I'd suggest a dermatologist to rule out scabies or other types of lesions that can be treated.
Scabies is a mite that is very very itchy.
I recall a funny story (not funny to the teller, but still illustrates how scabies can be hard to identify).
A colleague of mine took her son to the doctor for an ear infection. In passing, he said... BTW your son has scabies!
The boy and my friend never even noticed it. And she was very embarrassed!

Some people are very allergic to the mite, and develop all sorts of secondary lesions/hives which cloud the original infection. Sometimes there are just a few mites in one location and the rest is a body response, to that.
http://www.webmd.com/skin-problems-a...abies-symptoms

The rashes from gluten also itch alot too.

Some people with gluten intolerance never get the rashes. Others seem to get them easily. There is a large range of variability in expression of rashes with people.

Also another thing that can cause hives/itching, is Candida infection.
This may be vaginal, chronic. And/or in the GI tract due to previous antibiotic use. This should be evaluated too, since treatment improves it.

And you can have mixed issues, with each clouding the other.
Not everything shows up on tests.
Sometimes tests are just unique to you. I have elevated sed rates, and alkaline phosphatase, but no other immune markers.
And don't know why either. And for YEARS, for example.

dmouse--
 

--I don't think those test you listed are celiac related (the tipoff to me is that celiac antibodies normally do not have any Immunoglobulin M activity, only Immunoglobulin A and G).

The typical celiac panel measures tranglutaminase IgA, anti-gliadin IgA, and antig-gliadin IgG. Savvy docs may also order the anti-endomyesial antibody and do a total IgA suvery, as there are people with hereditary low levels of IgA which can skew the results of other IgA testing.

From what I know, I think those MPA tests are for anti-myeloperoxidase antibodies, often found in microscopic angiitis, a small vessel form of autoimmune vasculitis, often associated with other vascular/connective tissue disorders (and any of these disorders can have neuropathy as a secondary effect):


http://www.med.unc.edu/medicine/web/...sculitides.htm

http://www.specialtylabs.com/books/display.asp?id=47

so...
 

so it follows that if you want testing to confirm gluten intolerance, you cannot start gluten free until after the testing.

If you are gluten intolerant that gliadin peptide remains in the body for a while wreaking havoc.

That is why it takes months for improvements to show up.

I was thinking I need to try and get in to dermatology. I think that since I have chronic itch, they may consider it medically necessary... that's why I've been taking photos. It would be just my luck I go to the appointment and have no lesions or itch! Photos are a back-up.
Funny thing is, I've mentioned this itch to all three of my docs, and not one looked at my skin!

Thanks again for all the info!:)

I've been thinking too that there is more than one thing going on... it's not uncommon if you have one autoimmune, you most likely develop more...

Vasculitis
 

This is an index of some of the rashes of vasculitis, with photo's: http://www.dermnet.com/moduleIndex.cfm?moduleID=22 Vasculitis can be caused by any number of autoimmune issues. Sjogren's is one, so is RA. The neuropathy can cause the itching feeling too. When my neuropathy is bad the itching is intense.

Billye