Elevated CU index - Autoimmune Mast Cell Disease?

[maggie3]

My new immunologist had me do a test recently called a CU index. I had an elevated result with autoantibodies against IgE.

More info on CU index if interested https://www.viracor-eurofins.com/test-menu/2103-cu-index/

From what I understand, the CU index is done for patients with chronic urticaria (hives) and when elevated it means that there is an autoimmune basis for their disease (rather than the hives being idiopathic). My immunologist explained that because my test came back with positive autoantibodies against IgE, it means that my body is producing antibodies that are attacking the IgE receptors on my mast cells, thus aggravating them and causing the release of histamines, etc...

I do not have hives but rather my symptoms seem to match up much more with someone who has a mast cell disorder: severe fatigue, puffiness/swelling/pressure, nausea (with and without vomiting), bloating, headaches, dermatographism, flushing of skin, dry itchy skin, rashes, . I have never had anaphylaxis.

When I read about people with Mast Cell Disorders, they talk a lot about the importance of finding the underlying cause of the disease. So I am confused as to whether the autoimmune piece for me is the underlying cause of if there is something else that is going unaddressed. I did test positive for giardia about a year and a half ago (which could have been the trigger for all of this) but I have had no improvement in symptoms since treating it- basically i still feel really horrible all the time.

My current treatment plan that i started the last 1-2 months: xolair injections, h1/h2 blockers daily (zyrtec, pepcid), histamine blockers when eating, and modified low histamine diet. I am also discussing trying low dose naltrexone with my PCP. These are all new things I have started recently so have not noticed any improvement in symptoms at this point but am desperate to feel even slightly better.

Does anyone else have experience with having an elevated CU index? Do you have other conditions or are aware of an underlying cause? What does your treatment protocol look like? Just asking for anyones experience or input

 

[Hd-x]

When I read about people with Mast Cell Disorders, they talk a lot about the importance of finding the underlying cause of the disease.

It depends on the kind off MCAD,
a secondary MCA always has an underlying cause, but an ideopatic and exspecially a primary MCA (=Kit mutation) is genetic related, the reasons for this are unknown, so there is no sense in such a case to search for reasons - you can still take necessary drugs and try to avoid any triggers that further worsens the condition.

My current treatment plan that i started the last 1-2 months: xolair injections, h1/h2 blockers daily (zyrtec, pepcid), histamine blockers when eating, and modified low histamine diet.

If someone has MCAS it is difficult to find drugs that work.
In my case still Cyproheptadin helped (a very old Antihistaminika/Serotonine antagonist) + Ester C chelated Quercitin , PPI, Mizell Curcumin (+ some other stuff) + a mastcell IL8 damping Benzo
Usually, not drugs that Dr. first (line) consider.

I am not sure about LDN as immune system modulation drug and their impact on MCAD,
usually strong immune system boosting drugs can worsen MCAD.
However, if there is any kind off MCAD, it can usually be detected by testing Tryptase, Leukotriene, Heparine, Histamine, Prostanglandine D2, Chromogranin A and so on.

 

[maggie3]

Hmm, yes that is interesting. None of those drugs are ones that I have really even come across through my reading or heard any of my doctors mention.

I think what makes my situation confusing is that technically what I have is called "autoimmune chronic urticaria" but I do not have chronic urticaria. My symptoms really fall under a Mast Cell Disorder diagnoses, which makes sense because my antibodies are attacking the receptors on my Mast Cells thus aggravating them. The LDN has come into the picture because of the autoimmune aspect of this and general low wbw and platelet counts but to your point, because of the Mast Cell aspect, I could potentially respond negatively.

I am continually working with my immunologist to do testing of various Mast Cell mediators but so far have only done Tryptase, Chromogranin A, and 24hr N-methylhistamine, all which have come back within normal.

@Hd-x do you experience fatigue and GI issues due to your MCAS? And if so have you found any treatment that has helped with either of those symptoms?

 

[Hd-x]

Those drugs are known for treating MCAD, they are just not first line drugs.
First line (may vary on country and their clinics):
H1 Antihistaminka 3 or 4th Gen
H2 Antihistaminika
Chromolyn acid
Leukotriene inhibitor (Montekulast)
Mastcell damping Benzo (Diazepam or Rohypnol)
An overview off all known drugs that can inhibit mastellmediator stuff, you will find in the Afrin MCAS PDF paper.

do you experience fatigue and GI issues due to your MCAS?

I have fatigue and PEM, but this may be CFS related.
GI issues: IBS, nausea, cramps, vomit, Briden subileus
Most off the GI issues are gone or a lot better since I am on MCAS drug regime.

 

[Dufresne]

It's amazing how much better one can feel while successfully treating MCAS. Strangely the only things that have really helped me in this regard have been wormwood, perilla leaf, and palmitoylethanolamide (PEA). The first two stopped working long ago after being effective for a while. The PEA is a recent discovery and has been immensely helpful over the last couple months. High dose vitamin C helped for a few days, and then stopped. Quercetin did jack shit for me.

 

[Hd-x]

I was first sceptical about my MCAS diagnoses, because the doctors had not ruled out other diseases.
Otherwise I had higher Tryptase, Leukotriene and so on, so yes I have for sure MCAS - nevertheless other diseases normally have to been ruled out, just to be sure if someone has ideopatic or still secondary MCA.

However, the doctos put me just on their "first-line" drug regime (Fexofenadin, Ranititin, Chromolyn, DAO)
Those drugs did just nothing for me and my MCAS still further worsened.
I started at last my own MCAS drug regime and it works wonder,
Still IGG2 / Leukotriene remained somewhat high, but my Tryptase, increased Cytokine (IL4, IL8 and so on) went into normal ref. ranges, also my TH2 shift and the toxic granula in my blood is history.
I would call it a full success, because the drugs I use have fairly little side effects and not much concerns to use the stuff in the long run/term.

Quercetin did jack shit for me.

I was also the first time moaning around that this herbal stuff shit didnt work until I figured out that it really has something to do with the kind off Quercetin formulation. Raw Quercetin (most products just contain raw powder) cant really work, because Quercetin has pretty bad bioavailability.
I opend times ago a topic about it, but seems noone here knowns anything closer about it:
https://forums.phoenixrising.me/thr...vailability-and-different-formulations.78979/
Well, if you look at the graphics, you will see that from 500mg unchelated Quercetin pills just only 5ng/ml enter the blood stream whereas still 250mg chelated (phytosome) Quercetin results in 100ng/ml (!)

Only chelated Quercetin formulations (same for curcumin like Mizell or liposomal) have the necessary biovialibly to work for MCAS ( not that common cheap raw stuff you find elsewhere )

It's amazing how much better one can feel while successfully treating MCAS.

Treating MCAS can make a major difference and uplift IBS, Food allergies, Fibromyalgia + some ME/CFS related problems, because MCAS drugs usually help to stop that chronic inflammation, so in return it did have benefits for FMS/CFS as well.

 

[Dufresne]

@Hd-x

I think this is the one I tried;
https://www.herbesthealth.com/produ...9&utm_source=google&utm_medium=smart_campaign

It's supposed to be more bioavailable, but who knows?

I listened to a T C Theoharides interview the other night and he stated the quercetin in his product, Neuroprotek, is only there to make the luteolin more absorbable. I don't recall his explanation for this off hand but I think it pertained to the quercetin being used as a decoy. Crazy, eh? It was in the betterhealthguy interview.

It's also stated in the following article:
https://www.mastcellmaster.com/clinical-studies/Autism-NeuroProtek-IJIP6-7-2012.pdf

I'm not saying it's not helpful, just that there might be much better interventions.

 

[mrmichaelfreedmen]

I was first sceptical about my MCAS diagnoses, because the doctors had not ruled out other diseases.
Otherwise I had higher Tryptase, Leukotriene and so on, so yes I have for sure MCAS - nevertheless other diseases normally have to been ruled out, just to be sure if someone has ideopatic or still secondary MCA.

However, the doctos put me just on their "first-line" drug regime (Fexofenadin, Ranititin, Chromolyn, DAO)
Those drugs did just nothing for me and my MCAS still further worsened.
I started at last my own MCAS drug regime and it works wonder,
Still IGG2 / Leukotriene remained somewhat high, but my Tryptase, increased Cytokine (IL4, IL8 and so on) went into normal ref. ranges, also my TH2 shift and the toxic granula in my blood is history.
I would call it a full success, because the drugs I use have fairly little side effects and not much concerns to use the stuff in the long run/term.


I was also the first time moaning around that this herbal stuff shit didnt work until I figured out that it really has something to do with the kind off Quercetin formulation. Raw Quercetin (most products just contain raw powder) cant really work, because Quercetin has pretty bad bioavailability.
I opend times ago a topic about it, but seems noone here knowns anything closer about it:
https://forums.phoenixrising.me/thr...vailability-and-different-formulations.78979/
Well, if you look at the graphics, you will see that from 500mg unchelated Quercetin pills just only 5ng/ml enter the blood stream whereas still 250mg chelated (phytosome) Quercetin results in 100ng/ml (!)

Only chelated Quercetin formulations (same for curcumin like Mizell or liposomal) have the necessary biovialibly to work for MCAS ( not that common cheap raw stuff you find elsewhere )


Treating MCAS can make a major difference and uplift IBS, Food allergies, Fibromyalgia + some ME/CFS related problems, because MCAS drugs usually help to stop that chronic inflammation, so in return it did have benefits for FMS/CFS as well.

@Hd-x have found SAME! Only phytosome Quercetin works for MCAS. The combo Quercetin/Bromelain is also junk.