Dermographism and now diarrhea?!

Dyannie · 04-26-2005, 09:13 PM

Hi, I'm a newbie here and I have been reading your posts for the last two weeks now. I must say some of you really know your stuff.
I was wondering if anyone has diarrhea or intenstinal symptoms along with hives or dermographism.
I have had the dermographism and hives for the last 5 years and now the last 6 months all this intestinal symptoms that go up and down in severity.
I"m on Zyrtec and Zantac, Claritin and SIngulair and Nasonex. I finally saw an allergist this year after the zyrtec/Zantac stopped holding off the dermographism...I have a positive ANA and positive thyroid auto antibodies but my thyroid levels are normal. She prescribed the singulair and upped my antihistimes with claritin in the AM. She referred me to ruemie who sent me to a gastroenterologist who basically said I had mastocytosis. He did an endoscope and just phoned me that it was normal and no mastocytosis or crohn's..so now he wants to do a colonoscopy. I am under the conclusion that this is all pointless, and I'm getting very frustrated at all of this.
Curious if anyone has any insight into all of this...I would most appreciate any info.
Thanks, Dyannie

tip2mol · 04-28-2005, 09:50 AM

Hi,

It was highly suspected that I had mastocytosis also. It turned out that I did not. There is only one surefire way to diagnosis this and that is with a biopsy. There are two forms of mastocytosis. The first on (the most common) is the skin presentation with skin lesions. They can do a scraping of these lesions and see if there are clusters of mast cells present in them.
The second is the systemic version of mastocytosis which doesn't always have the skin lesions with it. It can have the horrendous allergic problems with it- including the dermatographism and the stomach problems with severe diarrhea. I had these symptoms and had an extremely high- prostaglandin D2 level which is an indicator of mastocytosis, however this level should be high along with the tryptase level. My tryptase level was never above normal.
They did a bone marrow biopsy and noted that I had a larger number of mast cells present in the bone marrow- but they were not clumped together as they should be with mastocytosis. It turned out that I was having severe allergic reactions to an allergen that I was allergic to (dust mites above all things).
If they have not run a Prostaglandin D2 level or a tryptase level on you- then they should. The Prostaglandin D2 level is done by doing a 24 hour urine collection. The tryptase level is done by drawing a small tube of blood.
I know how incredibly frustrating all of this is. I had a multitude of other symptoms also and it took a wonderful allergist and a referral to a major research hospital to finally find out the extent of my problems - a severe allergic condition and then also 3 months later (still having horrendous dizzy spells but some of the other problems were better(not gone though)) I was diagnosed with Meniere's Disease (aflliction of the inner ear causing severe vertigo/dizziness spells, nausea/vomiting with the severe spells, ringing and pressure in the affected ear, some hearing loss and then some accompanying anxiety.
I wish you the best of luck with getting a quicker diagnosis.
Hang in There!

Dyannie · 04-28-2005, 01:45 PM

Hi,
I had to say thank you for the information....I did have the tryptase blood work and it came back normal but I have never heard them mention the Prostagladlin test , I will definitely inquire about having this done. I am so tired of all of this...If I could ask...how did you find out it was dust mites?
I don't know if I could be suffering from this too.
Thanks again,
Dyannie

tip2mol · 04-28-2005, 02:46 PM

I found out through allergy testing. (The skin testing). The blood testing (twice over) was negative for any allergies. They tried to get me off of the antihistamines (both Zantac and Zyrtec) for 7 days to skin test me here in Tulsa- but I ended up in the hospital due to the reactions I was having. I was finally sent to a research hospital in Colorado. It was very unusual that I didn't have bad reactions when they took me off of the antihistamines. As a matter of fact- I was off of them 10 days and did not have any flushing, any episodes of the dumping diarrhea or any throat constriction. When they did the skin testing, I had a huge reaction to both types of dust mites. The research physician then made the comment to me "That explains why you are doing ok here off of the antihistamines" I questioningly said "It does?" She replied "Yes, our humidity here in Colorado is so low that it doesn't support the overgrowth of dust mite"- Well ours here in Oklahoma does. We had to do huge home modifications. Still there is no way to get completely away from them. I am doing better most of the time with the allergies- but it leaves me quite confined to our home. I can only tolerate being outside of our home environment for a few hours at a time- and not everyday. The severe dizziness spells are still there, but that is due to my developing the inner ear condition of Meniere's. I wouldn't worry greatly about mastocytosis-since the elevation in tryptase levels is the biggest indicator of that disease process. It does sound as if you are having allergic reactions to something though. I would encourage you to have skin allergy testing from a good allergist. It was also discovered that I have a pretty big allergy to chocolate (go figure-my favorite), oats, mustard, oranges and walnuts. This was only after a second round of allergy testing after the GI doctor discovered that I had developed gastritis (an inflammation of the stomach lining). It has been like a dominoe effect. I have to be real careful with anything I do.
It is a whole new lifestyle that I am not completely used to yet.
Please keep me updated on how you are doing and what you find out. I spent 8 months wondering if I was going to even see another Christmas with my husband and son. My systemic reactions left me weak and my blood pressure had even dropped as low as 56/34(which is lower than some of the hospice patients that I had seen that were close to death). I was horribly frightened. The scariest thing- is not knowing what is wrong.
Please take care

Johnsternow · 05-28-2005, 06:44 PM

LOW TRYPTASE LEVELS MEAN NOTHING!!! #1 they can go down to normal if mass cells are inactive and not triggered. #2 MOST labs don’t know how to properly test for Tryptase. There are 2 types of tests for this. This site won’t let me leave sites but check on a Dr Schwartz I think is his name. He is the originator of this test I think. He is also one of the leading researcher specialists on Mastocytosis. I believe the real Tryptase test needed to be done is called a Beta Tryptase test. A regular tryptase test to help diagnose this is USELESS!!! That is why it is only one POSSIBLE test used to determine this disease and by NO WAY should be used to rule out having the disease from it’s results.