Checking in & question about low IgA...

[jme22]

Greetings PP veterans and newbies!

I feel like it's been forever since I posted, but life has been busy with a dad and dad-in-law both dealing with cancer. My FIL has late stage gastric cancer (although he is responding VERY well to chemo) and my dad has invasive bladder cancer. I'm the sole caregiver for my dad, who is 85, so my days are busy. Thank goodness I'm not working now (thank those pesky mast cells for that!) so I am available to take care of his needs. It's a difficult time, but my dad and I have forged a strong bond thanks in large part to his health issues. I guess it's the silver lining, if you will.

My life with a mast cell disorder continues to be one of ups and downs. With all that life has recently handed me, I have definitely experienced an upswing in symptoms. (D, C, bloating, cramping, itching, hives, skin dermatitis, arrythmia, fatigue, tremors,...) The difference from when I first started posting, is that I can now take the surge of symptoms in stride. (And understand WHY I have such a myriad of weird symptoms, seemingly unconnected.) MCAD is something that is a part of my daily life...I have accepted that fact. This isn't going to go away. I can reduce my symptoms through medication and lifestyle change, but I'll never be "my old self". I went through a lot of denial about this illness, but I've learned to accept it. It's a big part of me, but I try to not let it define me. It's not always easy as my symptoms are so unpredictable and identifying triggers is SO difficult. I think others with MCAD would probably agree that the business of living is a trigger for mast cell patients. Sounds dramatic, but it's accurate.

I take lots of meds to keep things under control, which is a drag, but a necessary evil. (Doctor finally let me have prednisone available at home so I can take it PRN for severe reactions.) The meds have greatly reduced the ER visits and severity of symptoms. On my "to do" list is to start taking oral ketotifen (not available in US) but I just have been too busy to get to the doctor and start that process. It's a vicious cycle; my symptoms have upsurged due to the stress of taking care of my dad, but taking care of my dad keeps me from having the time/energy to get to the doctor. :/

In addition to catching up with the board, I'm posting today on behalf of my 21 year old DD. Sadly, she has started having GI problems. In the past year, she noticed that she would have bouts of severe nausea in the evening. It passed so she didn't think too much about it. Now it's returned along with bloating, D, fatigue, two different episodes of unexplained vomiting, one of which was followed by her face being swollen the next day with a big red "slap" looking blotch on her face. Of course, she's freaking out that she has a mast cell problem. While that may be true, I think we need to rule in/out the other more obvious causes first. She went to our PCP who did the normal batch of blood work, testing for celiac, IBD, etc. Everything came back "normal", so the PCP said see an allergist. ????? In fact, her bloodwork was not normal. Her serum IgA was low...normal range 81 to 463 and hers was 63. I went through the PP archives and read about the potential implications for a low IgA. So, given the low IgA and ongoing symptoms, I'm going to take her to my gastro (who I adore, as he was the one who first identified my mast cell issues) and have him start the diagnostic process.

My question; is there anything else I should be considering given her symptoms and test results? DD has two cousins that have celiac (dx through biopsy); she has had a positive ANA in the past and then there's all my crazy immune related issues that I may have passed along. Poor girl. She just graduated college and started her first "real" job. She feels like she's dragging herself to work, feeling so poorly. Not the way a vibrant 21 year old should feel. Hate seeing her suffer but at least I have a list of great doctors to help her figure this out. (Another silver lining to having health issues, I guess.)

I hope everyone is well. Congrats to you Tex on getting the book published! Mary Beth, glad to hear your practice is going well...hope your symptoms are in check now.

I remain eternally grateful for the advice and kindness extended on this board. To the newbies...listen to the PP folks, they know what they are talking about...far more than most doctors!

Sending my best,

Julie

[tex]

Hi Julie,

I'm so sorry to hear of the cancer problems your father and father-in-law are dealing with, and all the extra work this has imposed upon you. It's not surprising that the high stress level has revived your symptoms. I'm assuming that you're already taking antihistamines, but of you're not, many members have found that antihistamines work almost as well as a corticosteroid for suppressing GI issues associated with mast cell disorders.

She went to our PCP who did the normal batch of blood work, testing for celiac, IBD, etc. Everything came back "normal", so the PCP said see an allergist.

Remember that with a low IgA level, the blood tests that your PCP used to screen for celiac disease will always return a false negative result — those tests are worthless in such situations. And even for someone who has a normal IgA level, the blood tests will not detect non-celiac gluten sensitivity, so for most people, there's not much point in wasting the time and money required to do those tests. Allergists virtually always make the same mistakes (by relying on unreliable blood tests), so if your GI specialist understands mast cell issues, he is probably a good bet for diagnosing her issues.

I hope that you can find some innovative ways to manage your stress, because IMO, that is the safest, and most effective way to prevent and manage all of the health problems that are caused by chronic stress in our lives.

Thank you for the kind words, and thank you for posting an update.

With all of the issues you are having to deal with, I hope that everything goes as smoothly as possible.



Tex

[Leah]

Hi Julie. I don't think I was on the board when you were first posting, but I am one here that has IgA deficiency. The thing is we didn't find out about it until I was producing almost none. It could be that she is just starting to produce less and will eventually produce a low enough level to get the doctors to pay attention. I would try to get into see an Endocronologist or immunologist ( I have both) to test all of her antibodies. When I had this done, two of my IgG levels turned out also very low. The thing with IgA deficiency is that it can lead to many autoimmune diseases. I am on my third. Has she gotten her thyroid levels checked? If it's not working correctly, it can mess up a lot of other hormone systems and make you very tired.

Good luck
Leah

[Gabes-Apg]

Julie
thanks for taking the time to check in
hugs

I continue to have niggly h2 type symptoms and to read your post and hear of your ups and downs, although it was sad to hear someone having these issues. there was the element of reassurance, what is happening is not all in my head persay
stress has been and still is my biggest enemy trigger wise.

the naseua that your DD is having sounds H1 - H2 type thing to me.
with the change of season here, nightime nausea and vomitting has returned. i started taking the antihistamines and voila - gone.