Mold, Interrupted: My "Celiac" Diagnosis

As some of you might have noticed, my blogging hasn't been as frequent as it usually is. This is because I've been sick literally since for 4 and 1/2 months. It all started with a round of bronchitis towards the end of February with about one week of reprieve only to get sick again... and again... and again. I was having really bad asthma issues and felt like I was constantly gasping for air. I've grown up with asthma so I know how my body feels when I am wheezing or have bronchitis, but this was different. I felt like someone was sitting on my chest 24/7. My nose was bleeding, my lungs were hurting, and my body was aching. I was just a mess.

First, I went to my doctor and was treated for bronchitis. I was back two weeks later and was treated for allergies. I went back again and was given another round of allergy meds and still had no relief so I was sent to a pulmonologist. When I made this appointment, I started freaking out. By now it was the end of March and I was scheduled to go to Prague in 2 1/2 weeks. The lung doctor scheduled me for a breathing test and my first round of lung x-rays. He also prescribed me with some heavy medications including a COPD-inhaler, a nasal inhaler, and another round of antibiotics. The breathing test and lung x-rays came back all clear. Another week and a half went by and I went back to the pulmonologist in tears asking for some relief. He put me on even more inhalers, allergy medications, and acid reflux medications and said "Take it easy in the Czech Republic." Ok, easier said than done.

At this point, I was beyond frustrated, upset, and just so confused why I couldn't get better or get a clear diagnosis. I was told I had bronchitis, allergies, pneumonia, acid reflux, and anxiety. I had absolutely no voice because the inhalers were making me hoarser than I had ever been in my life. It wasn’t sexy hoarse, it was 2-pack-a-day smokers hoarse. I couldn't work out, couldn't sleep, and was crying all the time because I just felt so sick and had no answers. I was about to get on a plane to Eastern Europe by myself and I was afraid I was going to wind up in a Czech hospital. Needless to say, I was scared.

I got to Prague and strangely I started feeling better for the first time in months. By the third day, my wheezing was subsiding and I wasn't gasping for air on an hourly basis. I was going over and over in my head about what it could be. Was it the stress of life in New York City that was making me sick? Was it something I was eating at home? Was it the construction in my apartment building??

Wait, what? Rewind. Construction started in January. I got sick in February. My landlord flooded my kitchen and bathroom in mid-February because he was too cheap to hire a plumber and he is dumber than dirt. Then, I came home to my entire apartment covered INSIDE with soot from construction at the end of February and again in March... it was starting to come together, my apartment was making me sick!

Another week in Prague and I took myself off one of the three inhalers I was on because it was irritating my throat that badly. I got home from Prague on a Thursday, had another bloody nose and pseudo-asthma attack on Friday morning, and made an emergency appointment with an allergist on Monday.

When I walked into the allergist office on April 25th he wouldn't let me talk to him for more than five minutes because I was wheezing so badly. He said "You are in distress!" I said "YES" and he hooked me up to a nebulizer for my first asthma treatment in over a year. For me, this is the only way I get instant relief. In the 15+ years I've had asthma, this was less than my tenth time of having an inhaled treatment. As my heart rate went up and my breathing started getting clearer, I asked him what was going on. He said we will find out and he gave me another 3 medications and a new inhaler. He told me that my hoarseness was from the larger particles of the inhalers and he freaked me out by asking me why I had taken all of the medicines I did to date. I said "I need to feel better and nothing was helping." I left with another script for lung x-rays (my 2nd round) and hope that the treatment would do the job. It didn't. I was back in the office for another emergency visit that Thursday and he said "one more visit and you are going to the hospital." Again, I left the doctor’s office in tears.

At the 2nd allergist visit, he did a skin test for everything under the sun. Guess what? I am allergic to everything! If you have ever had the skin test you know it is miserable. They are pricking you with allergens to see how you react and you cannot scratch anything. My skin was swelling up immediately. I was digging my nails into the palm of my hand so hard to avoid scratching that I wound up making my palms bleed. I noticed one section of my arm was swelling over my watch band. Another part on the inside of my elbow was a hive bigger than my elbow itself. This was serious.

The doctor came in and was surprised, telling me I was highly allergic. DUH! He also took out his smartphone and started documenting my skin reactions with his camera. He said that he hadn't seen anything like this before, especially with the molds.

MOLD?!?

I stopped him right there and started telling him about all of the construction going on in my building and the suspicious spots I saw under the sink. He said my building probably had black mold somewhere and this might be what is causing all of my problems. He wrote up scripts for extensive blood work including testing for mold. He then slathered me up with some mega cortisone lotion, gave me predinose for the muscle pulls in my chest from the wheezing and coughing, gave me even more inhalers and pills, and sent me on my way.

I went for blood work 5 days later and almost passed out from the number of vials they took from me. When I asked the woman what she was testing for, she said EVERYTHING! I would need to wait one more week to get my results so I left and made plans to not be in my apartment for the weekend.

A week later, I got my results. I was "off the charts" with extremely toxic levels of mold in my blood stream. I asked the doctor how this could happen and he said "You are living in a very toxic environment. If you weren't exposed to mold on a daily basis, your levels would be at zero." I lost it at the doctor's office. This was the first time someone was telling me to my face that my home of six years was making me sick. On the flip side, I was somewhat relieved to learn what was causing my illness. I asked the doctor what my next steps are and he said "Get your landlord to fix the problem or MOVE!"

I left the office feeling completely defeated. I love(d) my apartment. It was the first place I moved to on my own and I had made it my home over the past six years. I had to come to terms with the past four months being hell because of my home. I cried the whole way back to work and then it hit me.

THIS WAS MY CELIAC DIAGNOSIS.

I was diagnosed in 1981 with Celiac Disease. I was just shy of turning three years old and I remember none of this tumultuous time in my life. I was just too young and it is probably for the best that I cannot remember anything. My parents went from doctor to doctor for six months before anyone even hinted at Celiac. I know this is a short diagnosis as compared to the average diagnosis of 11 years, but when you have a small child it can seem like an eternity.

Here I am at 33, going to five different doctors, being on a whopping 14 different medications, getting x-rays twice, getting a breathing test, but all to no avail. As a blogger and the leader of the NYC Celiac Meetup group, I know all too well the hell you can go through to have someone diagnosis you with Celiac Disease. Well, I honestly felt like my life since February was hell and was all too similar to friends of mine that were looking for a Celiac diagnosis for months and even years. No doctors had answers for me and I was still sick. The similarities of my mold story to many of the Celiac stories were crazy and now I could relate to what friends went through to get a diagnosis.

Once I was told that I had toxic mold in my system, I had to come to terms with moving. I spoke to my landlord and he turned into a monster. He said I was a liar, I was crazy, and there was no mold in the building. When I showed him three obvious places, he said it was water damage. I don't know about you, but to me where there is water damage there is mold. I spoke to him once, twice, and a then a final third time. I gave him the benefit of the doubt that he would fix it. I caught him in lies and I was told the construction was to resolve the leaks from the brickwork outside the building. (Another clue that there was water issues with the building.) After three conversations, I finally called the NYC Department of Housing Preservation and Development to file a formal complaint. Interestingly, the landlord hired his friend before the complaint was issued to do an air quality test in my apartment. This was another lie I caught him in, but I won't even go there. But the air quality test didn't prove anything, nor would he give me a copy of this test. Something was fishy!

After almost 3 weeks and one failed attempt to inspect my unit (turns out the landlord denied them access for the first inspection!), the HPD inspector came to my apartment. The inspection was horrible. The landlord's father followed me and the inspector around the entire time. He kept telling me over and over that I was a liar and I should just move out. They left, I cried, the landlord showed up and started screaming at me again, and then I went to work. Another day of tears and wheezing.

By this time, I had already started the painful process of searching for another apartment in my neighborhood. I knew I wanted something close to the train, big enough for my stuff, bright, and most importantly mold-free. My arduous apartment search is a whole story in itself but let’s just say Astoria brokers suck and people live like pigs in my area. After meeting more than 20 brokers and seeing more than 40 apartments, I finally found one that was well-maintained and clean. I started the paperwork, handed over way too much money (broker fees in NYC are outrageous), and began packing up six years worth of stuff.

One week before my move, I found that the city inspector ruled in my favor that there was mold in my unit! This was a personal triumph. Even though there is a documented report of the mold and two additional violations were issued for my unit, the landlord denies there is a problem. WTF? Moving day was bittersweet because I really did love that apartment. With the landlord standing in my doorway while the hourly-paid movers are trying to get out made me realize it was beyond time for me to go. He had ample opportunity to fix the problem and he did not. I am not sad that I will never have to deal with that a$$hole again.

I have now been in my new building for 8 days. I’m not feeling physically better yet, but the allergist told me it will take time to heal and rid my body of the toxins. It is hard to say whether or not I will have any residual health problems due to the black mold, so only time will tell. The numbness in my feet has sort of subsided but the wheezing has not. I do feel better mentally, although I have one more encounter with the old landlord tonight to return my keys. I’m bringing someone with me in order to hopefully avoid confrontation.

As with a diagnosis of Celiac, I must accept that I will not heal overnight. I need to give my body time to heal and try to do things that will make me healthier. As soon as I can breathe unassisted (no daily inhalers) I am going back to the gym and getting back on my bike. By this time of the summer, I would have already completed more than 200 miles on my bike and I miss it dearly. I also signed up for Bikram yoga to get my body and my mind back into shape. Black mold is no joke and I realize how being sick for so long has basically put my life on hold. I have no energy and I am always feeling ill so my social life has really suffered. Add on top of being sick the stress of dealing with an ignorant landlord who refuses to help his tenants and I realize how harmful my living situation has been for the past few months.

I’m on the mend, ready to get my life back, and hoping for a much healthier summer.