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Mother of Jibril

Member Since 04 Oct 2008
Offline Last Active Aug 19 2010 06:25 PM

Topics I've Started

Mast Cell Activation Disorder

28 November 2009 - 06:43 AM

Hi everyone,

The last time I was here (about six months ago) I was struggling to figure out some ongoing health problems... abdominal pain, nausea, diarrhea, joint pain, headaches, chronically dry eyes, episodes of anaphylaxis, a weird skin rash, etc... After extensive testing to rule out other things (I saw two allergists, four primary care doctors, a dermatologist, rheumatologist, endocrinologist, immunologist, gastroenterologist, opthamologist, and two gynecologists), my doctors and I are finally confidant that I have <drumroll please> mast cell activation disorder (MCAD):


The symptoms and treatment are the same as for someone who has mastocytosis (too many mast cells, which protect your body from bacteria and viruses but also cause acute allergic reactions), but my mast cells just trigger very easily. I still don't know exactly why... I'll probably never know... but in my case this appears to be a systemic (body-wide) autoimmune disorder. All kinds of things will set me off... hot showers, hot drinks, cheese, leftovers with meat, exercise... and gluten (whether in the form of celiac disease or NCGS) is a known trigger for a lot of people with mast cell disorders!

So... I feel like I made a really smart decision more than a year ago when I decided stop eating gluten :) Thanks to anyone who remembers me... I use the tips I learned here ALL THE TIME.

Restaurant Dining

04 June 2009 - 07:40 PM

This morning I found out that my son is officially allergic to peanuts <_< I just wanted to share an idea I got from "The Complete Peanut Allergy Handbook"...

"If someone ever makes a mistake and, for example, a salad comes out with nuts [croutons!] on top, you may well not feel comfortable eating anything in that restaurant. But if you decide that you are going to stay and eat, instead of sending the salad back, you should say to the server, 'We just talked about making sure there would not be any nuts in my food, and here are nuts . I'm going to hold on to this dish. I need to have a new one made that you can assure me does not have peanuts in it.' The reason for holding on to that dish is that there have been reactions from the restaurant staff just removing whatever the person is allergic to, and thinking that is good enough, even though small amounts of the offending food remain. Just picking off the nuts or taking off the top layer is obviously not good enough."

I thought that was really smart! Don't let the waiter disappear with your salad so he/she can just pick off the croutons and bring it back to your table... hang on to the evidence ;)

Elevated 5-hiaa

19 May 2009 - 02:58 PM

Today I found out I have another autoimmune disorder... my immune system has been making antibodies to the IgE receptors on my mast cells, tricking them into releasing their contents. The symptoms are the same as any severe allergic reaction (hives, dizziness, vomiting, etc...), but the reaction is not caused by an external substance. Interesting. I'm actually happy to know... too bad there's no cure. At least people sometimes go into remission ;)

Anyway... I have a question. I'd be so grateful if anyone has any ideas about this! Today I also got the results of a 24-hour urine test for 5-HIAA (which is a metabolite of serotonin). A normal level at the lab that did my test is under 6.0. A "high" result (above 25) is diagnostic for carcinoid tumors, a slow-growing tumor in your digestive system that gives off serotonin (NOT a good thing to have). My level was 8.4. So... probably not carcinoid... but my allergist wants me to repeat the test. I've been reading that one cause for a "false positive" (elevated, but not carcinoid) is celiac disease and other malabsorption syndromes like Whipple's disease, tropical sprue, etc...

Does anyone know anything about this? :blink: I've read that people with untreated celiac can have 5-HIAA levels between 11 and 25... I've been off gluten nine months.

Interesting Gi Appointment Today

11 May 2009 - 04:17 PM

I've been having mild abdominal pain for over a year. Some things have helped (like the gluten-free diet!), but my allergist was running out of answers... so she referred me to a gastroenterologist. Fine by me. I probably should have seen one a long time ago.

Anyway... I thought for sure he was going to tell me "IBS" and blow me off. Instead, he wanted to run a genetic test for HLA-DQ. I showed him my results from Enterolab and he said, "Wow... they're not usually this detailed. It's just positive or negative for DQ2/DQ8. What is this DQ3,3?" I ended up explaining that B*0302 is DQ8 and B*0301 is DQ7... so that means I'm positive for DQ8. Yay for all the reading I've done on Wikipedia! ;) (BTW... he didn't question the validity of Enterolab, just the interpretation about "gluten sensitivity.")

It's too late to do a biopsy for celiac disease... I've been on a strict gluten-free diet since August... but he wants to do an endscopy to check for mastocytosis (too many mast cells). This is GREAT... I've been having problems with anaphylactic reactions and my new allergist has narrowed the problem down to either idiopathic anaphylaxis or mastocytosis.

My question... how long does an endoscopy take? They're not giving me general anaesthesia... just an IV sedative. My appointment is scheduled for 10:30am.

Antigliadin Iga

26 March 2009 - 02:39 PM

I stopped eating gluten in August 2008... WOW. What a huge improvement. Unfortunately, my allergist didn't tell me to get a celiac panel before I stopped eating gluten. By the time I realized that I should be tested I have already been off gluten for six weeks and the panel came back negative.

EMA negative
TtG IgA <1 (normal is <3)
Total IgA 310 (normal is 70-400)

Two weeks ago my allergist ordered a new celiac panel. I was kind of surprised since I've been gluten-free for the last seven months. I figured... oh well. Let's see what the test shows. The good thing is that this celiac panel included ALL the appropriate tests.

Antigliadin IgA 9.4 (normal is 0-10)
Antigliadin IgG <1.2 (normal is 0-10)
TtG IgA <1 (normal is <3)
TtG IgG 3 (normal is 0-5)
EMA negative
Total IgA 365 (normal is 70-400)

Keep in mind... these are the results after I've been off gluten (very, very strictly) for SEVEN MONTHS. Makes me wonder how high my antigliaden IgA was before I started the diet! I found an article from Scott Adams about the different components of the blood test... he says that in people with normal total IgA (like me), a positive antigliadin IgA is 97% specific for celiac disease.


I also found the arguments in this article very interesting. It would be stupid to wait for a heart attack before trying to prevent one... why should a gluten-sensitive person wait to develop full-blown celiac disease before going on a gluten-free diet?? :rolleyes: I feel grateful not to have MORE damage than what I already have.


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