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Is Urine Histamine The Same As Urine Methyhistamine?


babettess
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I had a high level of histamine in my 24 hr. urine catch. Is that the same as methyhistamine? I read where a high level of methyhistamine can indicate Mastocystosis. Normal high level of histamine is like 50 and mine is 151. I have had a RAST test and it was normal. I'm not really allergic to anything other than penicillin, ceclor and ibuprofen. I can't tolerate dairy products but the RAST test says I'm not allergic to milk. Can I have mastocytosis but not really have allergies?? I don't really have any skin problems other than Rosacea. I do feel better after taking Benadryl or Atarax but I've always thought maybe they just calmed me down. My doctor at Cleveland Clinic told me to see an endo to have it checked out. Just wondering......

Thanks,

Babette

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Yes, they are the same and are indicative of either MCAD or mastocytosis. An endo is NOT the appropriate physician to sort this out. You need to see a MASTO specialist (specialized allergist/immunologist.) I'm sorry you received misinformation from CC. I have NO allergies. All of my RAST testing has been negative. Atarax and benadryl makes me feel better too.

Julie

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Hmmmm.... I was told by specialists at both Mayo in MN and Mayo in FL and Vanderbilt that these are NOT the same tests.

Histamine and methylhistamines tests are two seperate things. The agreed upon consensus I've heard is that when testing for MCAD histamine is not usually very reliable (it's not a very good or stable test) unless it is done right after an episode.

I've been told repeatedly that methylhistamine testing is the preferred test and much more reliable. (I believe they said it has something to do with the assay's used to process the labs).

When I was going thru the diagnostic process I was instructed to go to the ER immediately after an episode and be tested both for the histamine and tryptase and that it has to be done within 2 hours (preferably one).

For either case, there can be false positives and certain food and medications can also cause false positive results.

High histamine does not necessarily mean you have MCAD or mastocytosis; there are other diseases and conditions that can also be responsible and other things that would need to be ruled out.

I'm actually allergic to benadryl. I do get a lot of benefit from Chromolyn and Pepcid (h2) though.

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Here is a link that describes both the histamine and methylhistamine tests and what each might be indicative of:

http://www.cs.nsw.gov.au/csls/handbook/Fac...w.asp?Number=44

I know Dr. Castells prefers the methylhistamine test. Poohbear's right. Ideally, it should be done within a one-two hour period following anaphylaxis. Since I didn't have anaphylaxis while in Boston (Brigham and Women's), Dr. Castell's did a 24 hour urine catch on me.

Poohbear, I can't remember what your DX is re. all of this mast cell stuff. BUT, I just wanted to make you aware that Mayo does not recognize MCAD. Dr. Joseph Butterfield of Mayo is one of the leading masto researchers in the country and he calls the anaphylaxis that MCAD patients experience "spells." That term is regularly used by all Mayo allergist in medical research articles, etc. I came to learn this because my local allergist is from Mayo and has worked extensively with Dr. Butterfield. He described my symptoms as "SPELLS!!!" In the 21st century, I found that term archiac and a bit patronizing- like I was a helpless Victorian vixen having vapors :blink:

That being said, Dr. H has been very supportive of me since 2003. He has offered me excellent care and appropriate meds/nubulizers/epi-pens as I needed them- all without a DX.

I became frustrated as I was so dependent (for my life!) upon my meds without knowing WHY. That's when I sought a formal DX from a masto specialist at Brigham and Women's. When I returned home with the DX of Mast Cell Activation Disorder, my dear Dr. H was downright giddy. He was thrilled to see that other allergists/masto specialists at leading hospitals are recognizing and treating this condition (as was he) and have given it legitamacy with a name.

Poohbear, I just wanted you to put whatever DX/treatment plan you received from Mayo into context with the bigger picture of the evolution of this condition. MCAD is in it's infancy, and therefore considered controversial by many phyicians. Too many patients, suffering from MCAD are dismissed as having panic attacks, spells, etc. Some aren't as lucky as me and are also denied treatment.

"I'm actually allergic to benadryl. I do get a lot of benefit from Chromolyn and Pepcid (h2) though."

Cromolyn (or Gastrocrom) is a mast cell stabilizer. Some masto patients use this in addition to H-1 and H-2 blockers. There is no "one siz fits all" protocol for masto patients. Most of us come by our med regimens with a lot of trial and error and a helpful physician overseeing it all.

I am no expert with all of this, just a patient with my one story. I am sharing it with everyone in the hopes that it may help someone else.

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Mack's Mom, I had no problem at all with Mayo clinic (either location I went to) recognizing my MCAD. I saw Dr. Volcheck this past summer in MN who was wonderful to work with. Initially I was diagnosed back in 2004 with MCAD when they were still trying to even decide for certain what they would call this condition and what the criteria was going to be etc. etc.--that was through Mayo in FL and I saw a Dr. Gillham (who was also GREAT and validating and knowledgeable) and also Dr. Lee who was also wonderful.

So....if you ever need to find a Dr. through Mayo for this, look up one of the above. Hopefully now that you have a diagnosis and treatment plan you won't need them though!!

My histamine comes back elevated on 24 hr but not extremely high but after spells it is definately much higher. My situation is extremely complex though in that it looks like I am also dealing with neuroendocrine tumors so it greatly complicates treatment approaches.

LOL...I can related to your comment about "spells". Initially some Dr's may have been calling them that because they didn't have a definitive term until the last 4 years or so. I went to an endo last year that wrote "spells" under a diagnostic category and the check out clerk had a fit--she kept saying "What kind of spells?" I finally said code it as Autonomic crisis and that worked.

Yep....the meds are definately trial and error. I also have a long list of foods to avoid that seem to have made a big difference for me.

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Wow- that is so cool about your experience at Mayo! Would you mind if I shared it with an online Masto support group that I belong to? To my knowledge, no one there has had a good experience at Mayo. If they didn't meet the diagnostic criteria for mastocytosis, they were dismissed... Like you, I am very happy with my (former) Mayo allergist, even though he told me I was having SPELLS. He's always treated me appropriately, even though he didn't give my illness a name.

Do you get anaphylaxis? Are your meds controlling your symptoms- for the most part? Most importantly, has treating your MCAD improved your autonomic stuff?

Forgive all of my questions- happy to find a fellow sufferer :blink:

Julie

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Mack's Mom.....share away :blink: I've had both good and bad experiences at Mayo with certain physicians especially in the GI dept. but in the MCAD issue the three Dr's I saw were really good. I'm not sure if Dr. Lee is at the Jacksonville location anymore--he was originally in the pulmonary dept but the last time I tried to contact him I got no response and I see his name is "greyed" out now but the other two are still w/ Mayo (one in Jacksonville and one in MN).

Especially in MN if you go in with a ANS diagnosis already existing they know about the research/data on the connection between the two.(or at least Dr. Volcheck and his assistant were)

Do you get anaphylaxis? Are your meds controlling your symptoms- for the most part? Most importantly, has treating your MCAD improved your autonomic stuff?

I don't know how to answer your question about anaphylaxis because from what I've seen you post on it before that is not what any of my Dr's would have called anaphylaxis. I have had some anaphylaxis episodes in the past but those were true allergies and didn't appear to be MCAD related. I do get "autonomic crashes and varying degrees of respiratory problems" that have been labeled as MCAD triggered. My meds help some but I am far from controlled however, I have several rare conditions working and being triggered at the same time so my case is extremely rare. No, treating my MCAD has not improved my autonomic stuff (but again....that is probably because my root cause is coming from a rare condition).

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Hey Pooh-

Thank you for that permission. I will share the word about those docs as it's important to get the word out to those seeking help/MCAD DX. Unfortunately, many without true mastocytosis have not had good experiences at Mayo. I'm so glad you did. I have also met several folks with GI issues (mostly delayed motility) that also had poor experiences at Mayo. :( I think our Linda Joy initially got her MCAD DX from a Dr. Lee somewhere in Ohio- wonder if it's the same fellow you saw?

I'm sorry things aren't better controlled for you. My response to the MCAD regimen has been pretty miraculous. I keep waiting for the other shoe to drop. :blink: I agree, some of my "anaphylaxis" episodes have been far from traditional.....but so thankful that an epi seems to halt them. On my masto support group, I have met others with DXed MCAD that have similar episodes. Some doctors call them anaphylaxis, others call them anaphylactoid recations, and my allergist prefers "spells" :)

I, too, also have other weird stuff going on- connective tissue issues/super low IgG, etc.- don't think I've gotten to the bottom of things yet, but am so grateful to have a relief from symptoms with a MCAD regimen. I'd love to hear about your other rare stuff. PM me if you want.

Julie

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