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Symptoms Related to MCAD? (Read 4166 times)
CindyP
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Symptoms Related to MCAD?
03/07/16 at 06:19:50
 
I realize that a long list of symptoms can indicated several different disorders, OR they could collectively indicate MCAD.  For years I've looked at my symptoms individually and treated them as separate issues.  After learning about MCAD, I came to the conclusion that collectively the symptoms could very well point to MCAD.  Because of the difficulties involved in finding/seeing a doctor that specializes in MCAD, I was hoping those who've experienced this first hand would help me.  In short, would you have come to same conclusion I've reached, and why or why not?

Out of the symptom list from http://www.mastocytosis.ca/signs.html, these are ones that apply to me.

KNOWN TRIGGERS:
"shortness of breath, chest pain, unexplained medication reactions"
Aspirin and all NSAIDs cause asthmatic reactions within 15-20 minutes.  Results when tested for aspirin allergy came back normal.

"anaphylactoid reactions, skin feels on fire, swelling & inflammation"
Alcohol is the only trigger that causes a typical anaphylactoid reaction.  Regardless of whether it's wine, liquor, or Nyquil...it's definitely the alcohol and not another ingredient.

"diarrhea, vomiting, nausea, difficulty with foods, gastrointestinal pain, bloating, liver pain"
I've identified the foods that trigger these reactions (like food poisoning - severe and quick onset) to be high salicylate foods.  As long as I don't "fill the bucket", these reactions are kept under control.

"persistent fatigue, joint, bone pain, persistent diarrhea"
Gluten free diet eliminated these symptoms.  I once cheated and within 30 minutes felt drugged...I couldn't stay awake and was woozy.  After sleeping a few hours I was better.

"headaches, scents/odors/chemical reactions, shortness of breath"
Very strong scents may trigger a headache or asthmatic reaction.  Certain scents even if they aren't strong, may trigger these reactions, too.  I suspect salicylates are in these scents.

UNEXPLAINED SYMPTOMS:
"skin rash, itching"
Itchy rash on back on my neck gradually worsened and spread across shoulders.  Lasted for 6 months until I began Zyrtec and Famotidine per GP's suggestion.  (Zantac caused nausea and liver pain, so switched to famotidine.) Some opiod drugs cause itching all over.

"persistant fatigue, vertigo, unexplained anxiety, cognitive impairment, unexplained weakness"
These symptoms came on strong soon after a short round of Prednisone prescribed for leg pain.  I took the drug as prescribed and didn't stop abruptly.  It seemed to wreak havoc with my HPA axis.  After several months under the supervision of an alternative doctor, nutritional supplements have improved these symptoms.

"flushing, headaches, persistent body/tissue pain"
I can't identify a trigger for these ongoing symptoms.  
The flushing seems to be mainly in the evening after eating dinner.  My face, especially my nose, will be very hot and red.  I don't sweat when this happens and am not hot overall.  It lasts for about an hour.  
Headaches are random also.  They can last several days.  Sometimes they become extremely intense.  My GP has prescribed Vicodin for them, but I only take it as a last resort.
The persistent pain is my worst symptom and has debilitated me for the last 8 months.  It came on suddenly after physical stressors, followed by emotional stressors.  I've since come to realize that stressors of any kind definitely increase my pain.

"sinus problems, recurring infections, enlarged lymph nodes"
I've had issues with each of these symptoms in the past, but not currently.  

NOT LISTED ON MASTO WEBSITE:
Heart Palpitations (EKG & Holter Monitor results normal)
Pre-Hypertension BP (Monitoring at home, results are normal.  Usually elevated at doctor's office)
Orthostatic Hypotension (Alternative doc checks regularly. Improvements since beginning nutritional supplements, although still not normal results)

NORMAL TEST RESULTS:
Auto-immune diseases
Arthritis
Thyroid
Low Vitamin D (1st test low.  2nd test normal)
Aspirin Sensitivity (How can this be NORMAL when I definitely react to all Aspirin/NSAIDs???)

ALLERGY TEST RESULTS:
(I've yet to get a copy of results, so I don't know actual values.  This is just per phone conversation with nurse.)
Wheat, Corn, Summer Squashes, Tomatoes, Strawberries....Mostly High Salicylate Foods
Nothing tested so high that it raised real concern.  The allergist simply offered to arrange allergy shots if symptoms of hives, sinus troubles or asthma were problematic.

So, from your experiences, am I on the right track? Undecided
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CindyP
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Re: Symptoms Related to MCAD?
Reply #1 - 03/07/16 at 08:00:05
 
I'm sorry to add more to an already too long post.  But this may be significant.

I just received results from allergist.  The foods I listed above were all low level allergies, with the exception of summer squash which was moderate.  
Environmental allergens were higher, but nothing more than a level 3.
The IGE results were NORMAL.

C1 Inhibitor was 43 (Normal Range 21-39)  I know results below normal can indicate Lupus.  But I'm still trying to figure out what above normal results would indicate.  

The test for "Uticaria Inducing Activity" was NORMAL.  (The itchy rash was not completely gone when this test was done.)  The notes with it says results above normal range "suggests the presence of basophil stimulating antibodies (or other serum factors)."  

Does any of this information rule out MCAD?
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Joan
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Re: Symptoms Related to MCAD?
Reply #2 - 03/07/16 at 18:57:24
 
Some mast cell experts will talk on the phone with your doctor and review your case, testing, and symptoms and make recommendations for medicating, additional testing, etc. That might be a good way for you to get a diagnosis if you have a doc who is willing to make contact on your behalf.
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Joan
 
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