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Mast Cell Diagnosis?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Answers2013, May 25, 2013.

  1. Answers2013

    Answers2013

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    Hello

    For 8 months I've struggled with a range of health issues with literally every kind of test revealing no diagnosis (range of bloods, xrays, ultrasounds, CTs etc). The range of symptoms are those which I've read are associated with mast cell issues. The specialists have concluded it must be a chronic fatigue/post viral fatigue issue purely because nothing else could be identified. Ironically fatigue is not one of my main symptoms.

    Some of my symptoms have stayed the same for 8 months, whereas others have come and gone over time, or change in their severity. I probably feel the best I have in months and months, which I'm happy about, but I'm 'not the same' compared to before this all started.

    About 6 weeks ago I had a tryptase test (taken on a day where I felt well) and the result as encouraging (it was only 3 which is VERY low). I just got my results for a 24 hour urine methyl histamine test which I had taken around 2 weeks ago and the result was above the normal range, but not by much (the result was 2.1 and I understand the upper limit of the normal range is normally around 1.5 or 1.8).

    I'm now waiting to see a specialist but my question is, does the low tryptase definitely rule out mastocytosis, and combined with the slightly elevated methyl histamine result, does this suggest that if anything, it would most likely be a mast cell activation issue?

    I've had a RAST test for Inhaled Allergens and Staple Food Mix and this test did not reveal any allergies. Since becoming unwell, I've been diagnosed with gastritis, reflux, low vitamin d, high cholesterol and calcium levels in my blood, even though I don't have a high calcium diet. My unerstanding is these are all commonly associated with mast cell issues.

    I did read that slightly high methyl histamine can sometimes occur in a 'healthy' person, however given my other symptoms (I can list them if anyone is curious or thinks it may help the community), it makes me think there has to be a connection.
     
  2. Valentijn

    Valentijn Activity Level: 3

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    I don't know anything about mast cell disorders, but "fatigue" isn't a main symptom for a lot of ME/CFS patients. That it's the defining feature is a myth perpetuated by 1) the Oxford and Fukuda definitions, and 2) the CDC opting to rename ME as "chronic fatigue syndrome". The "Canadian Consensus Criteria" and "International Consensus Criteria" are both much more appropriate for diagnosing ME/CFS.

    But basically the most unique characteristic of ME/CFS is Post-Exertional Malaise (PEM). This involves getting quite sick 24 hours or so after "too much" exertion - whatever that is for each patient. The symptoms of PEM resemble the flu - exhaustion, full body-ache (not just muscles that were "overused"), and exacerbation of any other symptoms.
     
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  3. Answers2013

    Answers2013

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    Hi Valentijn

    Thanks for the detailed reply. I'm trying to work out whether it's a CFS/ME thing, or whether it's more a mast cell issue. Most of my earlier symptoms have settled down, but do CFS/ME people often get mouth sores, swollen pale tongue with teeth marks, burning mouth/tongue, tinitus and if anything, perhaps 'more energy' (e.g. I now fall asleep much later than I did before becoming unwell, and I also wake up much earlier, and when I wake I'm usually wide awake whereas I previously would go to sleep earlier and sleep for longer without interruption). The other symptom that remains is the regular small burps which I never had before becoming unwell. It's like my whole gi/digestive system is out of disturbed.

    Admittedly if I do try to go for a run or exert myself, I do have sore leg muscles for several days later (which I never used to), but I think mast cell issues can cause that too? (Any input from MC expects is appreciated).

    When I was extremely unwell several months ago, I had many more symptoms and they were more bothersome than those I currently deal with.
     
  4. Valentijn

    Valentijn Activity Level: 3

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    The mouth symptoms do sound unusual. But sleep problems are very very common - a lot of us end up with various problems that cause a "wired" feeling. In my case it's due to excess glutamate and goes away if I take N-acetylcysteine to bring it down.

    GI problems are also very common. Dunno about burps specifically though.

    Sore legs were my first noticeable symptom. PEM can be hard to notice due to the delay (you might feel completely normal after the exertion until it hits 24 hours later).

    Another problem is that a lot of ME patients end up with opportunistic infections - which might cause a ton of additional symptoms that aren't a common part of ME/CFS.
     
  5. camas

    camas Senior Member

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    Answers2013

    A low tryptase with elevated methyl histamine would point toward MCAS rather than Mastocytosis. The tryptase test an indication of how many mast cells you have, so in your case there is not an over-proliferation. An elevated methyl histamine points to over activated mast cells (MCAS).

    The allergy testing I had done in the past always came up negative, too. I also have the swollen, burning tongue and tinnitus. Daily Zyrtec and avoiding high histamine foods has taken away all of the burning tongue, some of the swelling, and a little of the tinnitus.

    You might find Dr. Afrin's latest paper of help (see link in my signature). If you'd like a printable copy of this just PM me your e-mail address. Glad you are feeling better and hope that your doctors will be able to figure out what's going on.
     

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