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(hyper)eosinophilia and Mast cell activation

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Thinktank, Jul 17, 2013.

  1. Thinktank

    Thinktank Senior Member

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    Hey guys, does anyone know if there's a relationship between (hyper)eosinophilia and Mast cell disorders?

    I've been having eosinophilia for the last 6 months and i believe i have some kind of mast cell disorder. Last month i felt fine for a few days so i did a CBC to check if anything changed and surely the eosinophilic count was much lower. A few days later i started to feel bad again, did another CBC and eosinophils were up again.
    The last month my symptoms have become worse, i lost 4.5kg in 3 weeks (and i'm already severly underweight)!, i can feel the inflammation in my skin, my ears, nose and cheeks flush a bit.
    The attacks always happen after eating a meal and last from 1 to 3 hours. Heat seems to aggravate and trigger it as well.
    Other symptoms i'm experiencing:
    GI inflammation
    Joint pain
    Flushing
    Anxiety / panic attack after eating
    Fatigue
    Diahhrea
    Conjuncvitis / dry eyes
    Muscle wasting
    Just the feeling as if i'm going crazy / depersonalization, this comes and goes.

    I'm due for a colonoscopy next week and the GI doc wants to take some biopsies of the Ileum (nodular lymphoid hyperplasia) and colon (colitis, proctitis) . Should i ask them to check for mast cells in the biopsies if possible?

    I know about the tryptase and urinary histamine test.
    Which other tests can i do as well to check for mast cell disorder?
  2. camas

    camas Senior Member

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    Hi Thinktank,

    Apparently there is some kind of connection between mast cell and eosinophil-associated diseases. I don't really understand it, but have seem some people mention having been diagnosed with both.

    It would seem reasonable that you could ask that your biopsies be stained for mast cells assuming the pathologist knows which stains to use.

    I'm attaching Dr. Afrin's most recent paper that explains how biopsies should be stained and also which tests you can have to rule out mast cell disease. Good luck!

    Attached Files:

  3. Thinktank

    Thinktank Senior Member

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    camas,

    Thanks for the paper, i'll print it out for my doc.

    I did some more blood testing this week.
    Total IgE came back very high, Eosinophils and lymphocytes are still highly elevated as well is Eosinophil protein X from my CDSA stool test.

    High IgE count
    High Eosinophil protein X
    High Eosinophil + lymphocytes in CBC

    Maybe i have eosinophilic enteritis? Maybe the biopsies that will be taken from my ileum and colon will show eosinophilic infiltration. Maybe it has some kind of connection with mast cell disorders?

    This "disease" is getting more complex to solve by the day and it's freaking me out.
    Based on the findings above i'm going to give Daosin, ketotifen, Cromolyn and quercetin a try.
    camas likes this.
  4. camas

    camas Senior Member

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    @Thinktank,

    Please let us know how your testing goes. I hope it will give you some answers. Sending positive thoughts your way...
  5. charlie1

    charlie1

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    Camas, I think it was you who sent me a printable form of that (very long) paper! If it was, could you send to me again - shall I pm you my email address?
  6. charlie1

    charlie1

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    Got it. Thanks!
  7. Thinktank

    Thinktank Senior Member

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    Results of the capsulecamera (Pillcam) scopy, colonoscopy + biopsies and whole abdomen CT scan came back.

    Spleen + liver enlarged with cysts in both lobes, similar findings as with the MRI scan.

    Only 1 of the biopsies showed eosinophilic infiltration, will post the exact results of it later. No pathogens or organisms seen.

    So basicly my whole digestive system is inflamed with some erosive spots and ulcers. All the way from the throat to the rectum...
    My GI doc suspects or at least wants to rule out lymphoma before giving me the diagnosis of crohn's disease because my liver and spleen are enlarged. I've also seen a hematologist, he wants me to do a PET/CT scan and bone marrow biopsy to rule out lymphoma.
    I've asked him to check for mast cell abnormalities / CD25 or anything related to mast cell disorders in the bone marrow which he agreed upon to do.

    I'll probably have both procedures done early next week.

    Lately i have been getting these panic attacks or whatever you wanna call them with facial flushing and itchy ears, triggered by food, hot weather, hot showers and exercise.
    Instead of popping a xanax i tried cetirizine and sure enough it helped! The need for xanax has lessened since i've started 2 X 5mg cetirizine / day.
    I'm going to see the hematologist / immunologist again tomorrow to discuss my experience with cetirizine and other findings.
  8. camas

    camas Senior Member

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    Thinktank,

    Thanks for reporting in. Sorry to hear about your ulcerated digestive tract. Gosh, it sounds miserable. I hope they quickly rule out lymphoma. Have they considered Carcinoid syndrome which is another common cause of flushing? I'm really glad to hear the cetirizine is helping. Hope your appointment with the hematologist/immunologist is productive. Sending positive thoughts your way....
    Marlène likes this.
  9. Thinktank

    Thinktank Senior Member

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    camas, thanks for your kind words.
    I had the bone marrow biopsy done yesterday, 3 biopsies in total. They will check for signs of lymphoma but also mast cells, CD117 and a bunch of other things.The bone marrow biopsy was pretty painful though, but no pain no gain.

    I have the whole body PET/CT scan tomorrow and will receive the results of the biopsy and PET/CT on wednesday.
    I'm not too worried about lymphoma though but i do want a full checkup just to be sure.... most of my symptoms correlate with MCAS and also the fact that i get some relief from cetirizine (h1 antagonist) + xanax (mast cell stabilizer) makes me think it's all due to mast cells behaving badly (Waiting for results), an imbalanced immune system (proven), leaky gut (proven) and genetic predispositions (proven).

    By the way, thanks for the paper you gave me about MCAS! I printed it out for the professor in hematology i'm seeing. It also gave me a lot better understanding of the syndrome.

    Rant
    It's pretty amazing i get to have all these tests done in such a short timeframe here in Thailand. My symptoms have largely been ignored by specialists in my homecountry the Netherlands. I've got to know more about my health problems in 1 year by visiting the leading private hospital in Bangkok than my whole life in the Netherlands.
    Social healthcare with it's long waitlist pretty sucks if you need urgent care, now i can choose my own doctors and be taken care of the same day!
    The downside ofcourse is the price you have to pay for private care... But i prefer that than having to wait 2 months to see a "specialist" who sends me home with some aspirin and telling me it's all in my head.
    - End of rant.
    camas, merylg and Valentijn like this.
  10. camas

    camas Senior Member

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    Thinktank

    Three BMBs. Whew. Glad you got that over with first. The other tests should be a piece of cake. I'm glad you found the paper helpful. Yeah, if you're finding relief from an H1 blocker and mast cell stabilizer (I'm on a similar combination - zyrtec and klonopin) then it sure does point to MCAS. Thanks for keeping us all informed of your results!
  11. Thinktank

    Thinktank Senior Member

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    I had the PET/CT scan today and will receive the results on wednesday!

    I'll probably do a tryptase, n-methylhistamine, blood serum histamine and ImmunoCAP IgE allergen test later this week.
    Maybe also a prostaglandin D2 test just to be sure. I think that will pretty much show if i have MCAS or not!

    Too bad i forgot to ask my GI doc to check the ileum/colon biopsies for mast cells... because most of my symptoms are GI related and i don't know if mast cells always show up in bone marrow if they are involved in gastrointestinal inflammation.

    Does anyone know where to test for C-kit D816V mutation and JAK2 mutation V617F ?

    camas, i've been thinking about trying klonopin. Have you noticed any benefits in cognition? Like less brain fog, better concentration etc.
  12. Legendrew

    Legendrew Content team

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    Have they considered mastocytosis? It's quite rare in its systemic variant (especially so without the associated skin rash) but could explain some of your symptoms.
  13. camas

    camas Senior Member

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    I'd be really surprised if you couldn't ask your GI doc to check your biopsies for an over-proliferation of mast cells. At least here in the states they store the biopsies for quite some time.

    I believe they can test most any biopsy (skin, intestinal, bone) for mutations, but don't quote me on that. :)

    I'm not sure if klonopin helps my brain fog. I mostly noticed that my reactions to food and chemicals really calmed after I started using it. It also helps a bit with my energy.
  14. Thinktank

    Thinktank Senior Member

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    Back from the GI doc and hematologist.
    The good news is they have not found any abnormalities on the whole body PET/ct scan except minimal apical pleural thickening (scarring of the lungs, maybe that's why i've problems breathing) so lymphoma is ruled out for now. Also the bone marrow biopsy didn't show any abnormalities but the report mentions some atypical cells so the pathologist wants to stain the biopsies again. He says it's probably due to poor preparation?

    I have now been diagnosed with Crohn's disease, although the inflammation and ulceration is still very unspecific.
    Both the GI doc and hematologist suspect an abnormality in my immune system so they recommended me to see an immunologist. Will this ever end???
    For now i've been put on prednisolone, mesalazine, Pariet PPI blocker (will probably drop that and switch to an h2 antagonist), motilium (probably not going to use it) and xanax.

    Legendrew, The bone marrow biopsy didn't show any mast cell abnormalities. I still have to do some other tests to be sure.

    camas, i asked her today and she said the pathologist would notice the mast cells by microscopic examination if they were present. I have to read Afrin's paper again if GI biopsies need to be stained or not. The biopsies are stored for a while so staining is still possible if needed.
    camas, Waverunner and Valentijn like this.
  15. camas

    camas Senior Member

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    Thinktank,

    So glad to hear that lymphoma has been ruled out!

    Hope the meds help your inflammation and that the immunologist can get the bottom of what is causing the Crohn's. I can only imagine how sick you are of doctors and tests right about now.

    If your bone marrow showed a normal number of mast cells, then that rules out Mastocytosis (assuming your tryptase test comes back lower than 20), but you can still have MCAS assuming you are still trying to rule out that diagnosis.

    Some mast cell patients end up with COPD because of the inflammation in their lungs from excess prostaglandins, but I don't know if it leads to actual scarring. I've read that with mast cell treatment the COPD can be somewhat reversed.

    This is what Dr. Afrin has to say on detecting mast cells (the biopsies do need to be stained):
    Immunohistochemical studies should include at least CD117 staining, possibly also Giemsa, toluidine blue, and/or tryptase staining. Multi-color flow cytometric studies on fresh tissue should look for dual expression of CD117/CD25 or CD117/CD2 (occasionally triple expression of CD117/CD25/CD2, too, will be seen). Polymerase chain reaction testing for KIT mutations as commercially available (at least KIT-D816V) can be considered in old and fresh tissues.

    Thanks for letting us know how you are faring with all this testing. Hope you see the end of it soon.
  16. Thinktank

    Thinktank Senior Member

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    camas,

    The lab screwed up with the mast cell staining so i have to go back, this time with a truckload of papers instructing them HOW to stain and what to look for, bunch of amateurs.

    Even if it comes back negative i have decided to go and visit one of the leading specislists / clinics in MCAS. I know there's one in my homecountry but i've also read some good things about a specialist team in Spain?
    I prefer to have all the testing done again by a real specialist in MCAS / mastocytosis instead of this run-of-the-mill hematologist i'm seeing. He's a professor but in my opinion severely lacks knowledge about MCAS.
  17. camas

    camas Senior Member

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    This is a problem all over. The average pathologist doesn't know how to stain for mast cells. I think it's because Mastocytosis is so rare that most haven't even heard of it. A lot of people here end up having their biopsies sent to Mastocytosis Center at Brigham and Women’s Hospital. I hope you can find someone to properly stain your biopsies.
  18. Thinktank

    Thinktank Senior Member

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    I've made a some appointments next week with a few GI specialists and Allergists/immunologists that are probably more literate on the subject than the ones i've seen so far.

    The mesalamine and high dose prednisone i got for Crohn's disease is not helping much. Prednisone is an evil drug, a single high dose serving sends me right into psychosis so i've to spread it throughout the day. It may cool inflammation but does so by suppressing my already immune deficient state.... I'm going to taper off this stuff next week with or without approval of the "specialist".

    Still the most relief i've found is with Xanax (mast cell stabilizer) ketotifen (mast cell stabilizer) and zyrtec,zantac (h1 + h2 antagonists)
    As well as:
    - Eating foods low in histamine
    - No fermented foods! (Most fermented foods and yogurt cultures are high in probiotics that increase histamine and other biogenic amines, that's why i now react very badly to my homemade yogurt).
    - No slowcooking (no more broth, i noticed broth really messes me up due to high histamine!)
    - No leftovers
    - Avoid stress and UV light

    The panic attacks, anxiety and shortness of breath have lessened. The brain fog is still there though and some days are lived as a total unreal experience.

    I'm trying to come up with some kind of explanation to this sudden decline in health but it's so overwhelming, so many factors that come into play. But anyway, it all starts in the gut. My first priority is to heal my gut but to do so i have much more advanced testing to do.
  19. camas

    camas Senior Member

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    Thinktank

    I did not do at all well on prednisone either. They put me on it after I went through a couple of episodes of anaphylaxis, but it made me terribly ill. Took me a long time to taper off. Hope it goes quickly for you.

    We're following a similar protocol with drugs and diet, both. I'm so glad you are finding it helpful!

    I have a pressure/slow cooker. Made my boyfriend a slow cooked chili and couldn't resist having a few bites. Talk about a histamine stew! Burned and flushed for the rest of the evening. Won't be doing that again. On the flip side, I haven't had any problems with pressure cooked food, I'm assuming because there's less time for histamine to build up?

    I don't seem to have a problem with UV, but really have to avoid heat. We're having an unusually humid summer, so I've been stuck inside much more than usual.

    There are just so many triggers. Today I downloaded an app on my phone called MySymptoms. It lets you enter your daily food, drink, meds, exposures, stress, exercise, etc. and then all of your symptoms. Then it will create graphs to help you pinpoint triggers. I've just started, but I can see where it might be worthwhile.

    I wish you luck next week with the GI specialists and Allergists/Immunologists!
    Thinktank likes this.
  20. Thinktank

    Thinktank Senior Member

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    camas, Sorry to hear you didn't do well on prednisone either. What dosage did they put you on?
    I prefer to taper off rapidly by supporting the adrenal glands nutritionally to avoid a crash.

    Yes, thanks to the links mentioned in your signature i've found quite some relief. It all makes so much sense now.

    Slowcooking is delicious and a cornerstone in the GAPS/SCD diet which i followed for quite a while. I think the reason i can't tolerate it any longer is because of the mucosal damage. Heavy mucosal damage = less DAO in the gut.

    That app sounds interesting. I'll check it out.

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