Good morning. I found this site when I was diagnosed at the end of April with CVID, angio edema and now mast cell. In the past 3 months I found I do not tolerate my favorite foods. Not just bathroom issues anymore but full body itching that can last up to 24 hours. At my diagnosis, my new dr. said I should immediately go on a low-histamine diet. So we started on this food adventure. He brought a nutritionist to the team to help sort out this new food issue. I went on a very restricted elimination diet consisting of about 27 items. That was challenging. I also took the SIBO test to rule out hidden infection. When I started the re-introduction of food I had immediate histamine reactions. I am now sensitive to salicylate category foods. This category includes medications. My eye dr confirmed the mast cell. He suggested Zaditor eye drops which is now available over the counter. In addition to the H1 and H2 inhibitors, I take another prescription antihistamine when the full body waves of itching go on for hours. I keep a food log to track the foods and medications I respond to. I test each food 3 separate times to make sure that I am sensitive to it. I am hoping once I start IVIG I will be able to enjoy my favorite foods again. I was originally diagnosed with Immune deficiency IgG subclass 3 about 15-16 years ago. Went thru 3 yrs of antibiotic rotation and a variety of medicines that seemed to calm down the infections. The pulmonary dr. that was treating me changed to a different clinic. So I went back to my PCP. My PCP seemed to have forgotten about that diagnosis. I would hear: I don't know what is wrong with you! After years went by, I too forgot about the diagnosis. Back came the infections and then after 2 bouts of MRSA joint swelling started along with other mystery symptoms. Of course not much energy. So, no immune system treatments for years and years. In January we changed PCP. My new PCP sent me to her favorite rheumatoid doc that loves to figure out what is wrong with you. He told me in 9 minutes what was wrong, apparently he did a fellowship at the clinic I was treated at and worked under my old pulmonologist. He ordered blood tests and 2 weeks later confirmed CVID. I am 60 years old. My husband and I have walked this "sick" path together our entire lives. My new PCP and team of doctors have provided us with hope that I will be much better in a couple of months. Last Friday I received the dreaded letter from insurance. We immediately started the appeal.
Have you seen a nutritionist for your mast cell? With her guidance, we have adjusted our foods to only low salicylate category. I am slowly adding moderate and high salicylate foods to my diet.
After all we have been through we know the best is yet to come. I hope the same for you.
Thank you all for your general discussions. I am learning about IVIG and the symptoms to watch out for. Although this is not Grateful Friday, I am grateful for your site.

Hi Light and welcome to our little group.. I have been diagnosed with CVID for a year now...I also was diagnosed with hemochromatosis 10 years ago and my dr think something else is going on but, he isn't sure what.. he thinks maybe Lupus..I itch & have a rash, which comes & goes..This has been going on for about 8 years..I do have organ damage from the hemochromatosis, so wether it is from that or not I don't know..

I see a hematologist, a gastro, cardio, neurologist, and pulmonologist..

Good luck
Hugs
Cheryl

Dear VTLight,

I'm so sorry to hear about your situation - it's like hearing someone else describe my life.

I too have CVID and MCAS (Mast Cell Activation Disorder) - and my journey to a diagnosis lasted 8 years!

Frankly it's been hell and my heart goes out to you. I'm in the NY area and could recommend my doctor - but frankly she's been MIA of late and I too am looking for alternatives who have knowledge about both disorders.

My journey started years ago with gastrointestinal and inflammation issues (which in hindsight were my mast cells misbehaving). Doctors' early diagnosis were alternately menopause or irritable bowl syndrome. Ha!

Then I went through a really stressful period in my life and assume all the stress hormones (which were going full tilt for a few years) ravaged my immune system. This was then followed by an infection that was misdiagnosed for 4 months. Finally I was given an antibiotic that caused a rare reaction called "DRESS Syndrome". This was the nail in the coffin and it simply decimated my immune system and I was left on my couch for a year and half with all the doctors completely baffled and my body going into free fall.

I could not accept this as my new life and so started to do research online for all my symptoms - which were so varied, so weird and so numerous. Nothing made sense until one day I was at a friends house in tears because a quarter of my jaw had gone numb and my lower lip was swollen - prompted by nothing. She said, "Oh my God!!" I think you have a problem with your mast cells. - as the exact same thing had happened to a friend of hers.

And so I ended up at the specialist's office to confirm this. And so after seeing about 40 doctors - who alternately treated me like i was a child, on drugs, insane or straight out lying - she took one look at me and my list of symptoms and said yes, you have a mast cell problem. She also said she thought something else was wrong and after more precise blood work verified the CVID.

You pose the question as to what connects the 2 and I have no definitive answer for that other than to say that some 'event' can trigger both. For both of them it could be an illness, shock to the body (car crash/death in family) or a major encounter with something that is terribly toxic - solvents, etc.
And according to my immunologist, treatment for the CVID can help clear up the MCAS. The CVID would be your primary disease and the MCAS secondary - one piggy backing on the other.

The MCAS occurs when your mast cells respond to something they view as toxic. It doesn't have to literally be toxic, but your body's immune system sees it as toxic, and then because your immune system is impaired, it can't clear the toxins out. Often there's 2 responses - the initial one (think facial flushing, anaphylactic, etc.) vs. the second wave which can happen as much as 2 days later (stomach distress, joint or nerve pain). This is due to your innate / adaptive immune systems. So it's often impossible (from that perspective) to figure out what is the catalyst.

The reply from "stained GI" is on-point regarding diet modifications. Each one of us will have a particular/multiple weakness(es) - be it histamine or salicylates, etc. and it takes a lot of uncomfortable testing to figure out what your unique triggers might be.

For me, as I had the mast cell issue for quite a long time prior to the immune crash, I (after much trial and error) knew what I could or couldn't eat. Unfortunately this has gone tits-up with the Gammagard treatment I am currently receiving. Foods that were once safe are now not and vise-versa. For instance, now I can't eat any fruit - which used to be a staple. Unfortunately too I can't see any patterns or recognize any triggers in the foods (salicylates, gluten, etc.) that are adversely affecting me - meaning one day a food might be fine, then the next day it's not. It's crazy and I must admit wearing me down.

Ditto, the subQ Gammagard treatment I am receiving. I was initially prescribed 75 ml each week but could not tolerate it - I had too many side effects so my dosage was reduced to 50 ml per week. After 3 weeks the side effects tapered off and dare I say it - I felt great. The constant flu symptoms (chills, sweating, fever) disappeared and I was off the couch and functioning. This lasted for 3 weeks but unfortunately the flu-like symptoms returned and have persisted - cycling throughout the day. In turn, 2 weeks ago I started 50 ml each 5 days - which was my original prescribed amount. My fingers are crossed that my body will once again adapt and the medicine will once again kick in.

One big note regarding Gammagrad - is that since starting it my body has become even more super-sensitive. I can barely tolerate any medications - even those compounded and so no one can figure out a supplemental treatment for the MCAS. I've tried every HI/H2 drug, Quercitin, Vitamin C, and Chromalyn - all creating adverse/reverse reactions in my body - meaning they cause my mast cells to over-react instead of quelling the response. I'm trying Ketotifen next. The only two things I can tolerate now are Benadryl (liquid compounded version, which I take every night before bed) and a leukotriene receptor antagonist - Singulair which helps suppress the fallout from salicylates. But lately even the Singulair is triggering flu-like symptoms. It's crazy....

One thing I can suggest to you is to focus on beefing up your body's ability to detoxify. For example, B vitamins help but you need to be careful because if you take the wrong type - they can be detrimental. On this note I suggest you take the "23 and me" genetic test to see what gene abnormalities you might have. Often your body's inability to detoxify itself is due to a genetic issue. And this defective gene or genes can be 'turned on" - meaning you can have an abnormality and be healthy all your life or after some major occurrence (illness, crisis, encounter...) it can become problematic.

One example of this is the methylation cycle - the MTHFR gene abnormality that prohibits your body from correctly using certain B vitamins (which help to detoxify your body). Once you've done the '23 and me' testing, you'll clearly see what genes are problematic and be able to take the appropriate vitamins and supplements for your genetic makeup - helping your body properly process toxins out.

One example of this working in reverse - is that today's breakfast cereals and pastas are enriched with vitamin B9 (folic acid). if you have a MTHFR genetic abnormality the type of folic acid in these enriched foods could be causing you harm. And compromise your methylation cycle even further - thereby further impeding your body's ability to detoxify itself.

I'm eager to hear from others what their experiences have been - specifically:

- Does anyone have experience with Gammagard, where it works, then stopped working? Does this fallow period end and the benefits resume?

- Does anyone have flu-like symptoms every day?

- Does anyone sweat a lot / feel like they have a fever but have a low body temperature?

- Is anyone who's taking Gammagard have an increase in acid reflux?

- Do people find that regular exercise helps?

Thanks in advance.

Cheers-

Cindy

I've been reading with great interest about what everyone has posted. Mast cells is a new topic for me. I have been looking for an explanation for possible swelling in my body, more specifically, inside my skull, increasing my cerebral spinal fluid pressure. I guess this is another one to watch, long term.

I'm not on IVIG and my dr has no current plans to start me on it. Based on your advice, I wish I was. Flu like symptoms? I have headaches almost every day, as well as sore muscles and joints. My knee joints have been bothering me lately which is new. Usually it's just my hips and shoulders. I have gastro symptoms a LOT. I thought things were better until the last 2 weeks. Yep, I've been down for the count with stomach flu. I'm still in bed but have started to eat a little again. And now I'm getting a cold on top of it. I guess the season has officially begun.

My fever rarely goes up. I can count the times I've had a fever on one hand. More probable is that my temp goes down, around 97, when I'm sick or well. The dr's figure if no fever, no sick. I shiver and shake and can't get warm and always sleep with my dog under the covers. He's a furry hot water bottle that snuggles.

Exercise seems to make me much worse. If I'm feeling good I'll go out and do things, run errands, play with the dog outside, go out with a friend, and/or clean house. Any of those, it literally drains the life out of me and I'm back with a headache, exhaustion, a sinus infection or gastro problems, and in bed for who knows how long. My energy is saved for chores and necessary obligations only these days.

I didn't realize how pitiful that sounds until I typed it. I need to figure out a way to get a life, despite being sick.

you need a new doc. no fever = no immun my temp is at 95-97 even if I am real ill.
ivig for four years now
fever is not an indicator for us. If we had a fever we would have a fighting chance.

Thank you for this post. It has provided with new information to ask my immunologists. I have chronic "idiopathic" urticaria. I'm not a fan of the term idiopathic. I was told by two doctors that some people get hives and they never know why, so they just treat the symptoms. The immunologists thought that was ridiculous. He tested and dx me with hashimoto's, pustular psoriasis, and now CVID. I have gone gluten free for 1 month and was hoping to see some changes in my skin symptoms but haven't so far. I know it might take a few months. Perhaps it is mast cell related. He's willing to listen to me and doesn't judge, so I think I will ask about mast cells. I hope you get some answers. Keep us updated.

Thanks everyone for your comments.
Cindy thanks for sharing your experiences with MCAD. I can certainly relate in experiencing flu-like or hangover-like feeling perpetually for much of the last 2-3 yrs, including a headache and continuously feeling like I warm/had a fever, but didn't register by thermometer.

I'm waiting for an appointment in November with a Mast cell specialist in Boston after an abnormal bone marrow biopsy.
Of everything I've tried to improve my health, a hyper restricted diet has been even more beneficial than the IVIG infusions.
What's unusual, is that every couple of months I need to add more items to my restricted list. It presently contains wheat, dairy, eggs, soy, fish, shellfish, nuts, peanuts, sulfites, xanthum gum.
During a recent work up when they were testing for mast cell disorders and carcinoid tumors, I was also told to avoid bananas, avocados, pineapple, fruits, caffeine, and alcohol. Surprisingly, when I did this my headaches and pain significantly decreased within days. So I have continued this diet even after the testing was completed. My haematologist also suggested bottled water as our local water supply has chloramine added to it and she has seen some people who are sensitive to this. Even with all this restriction, my symptoms and energy can be random- but it is allowing me to function more than I've done in the last couple years. I've been told that stress, heat, vibration, emotional events and a multitude of other things can be triggers for the mast cells. I'm also sensitive to the contrast agents with MRI or CT scans and will have flu like symptoms for a day or two after imaging.

I'm waiting to see the specialist in Boston before beginning with any of the MCAD drug treatments as my local docs really have enough experience in this area to be too helpful as they just don't see enough people like me and we both want to make sure they haven't missed anything before I begin drugs that might mask symptoms.
I do hope that there will eventually be more answers and a closer return to my previous active life.
Thanks for sharing all your experiences related to this two issues.