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Monday, June 27, 2011
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.


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.


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.

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Blogger Kristina said...

I am really glad you found what was making you so ill. No apartment is worth that hell. I went through a similar black-mold and bat poop situation in a leaky roof several years ago. I had less trouble getting out, because of previous allergy tests proving that I could not live in such a place, but the landlord was a similar jerk, and I lost books, clothing and a lot of time to all the damage.

Here's hoping your new apt soon starts to feel like home and your body gets to enjoy it too!

Blogger jdhs223 said...

I'm so sorry about all this, I'm one of those who had a similar nightmare before my Celiac diagnosis.

I'm sure you just want to put all this behind you and focus on getting better and settling into your new living space, but maybe since the city already ruled in your favor and you have a doctor backing you up with objective evidence of serious effects, it wouldn't take TOO much of your time and hassle to get your landlord to reimburse you at least for your out of pocket medical costs and moving expenses? I'm not a lawyer, but it sounds like any reasonable judge or arbiter would find him liable for at least that much, if not up to quite a bit more than that for "pain and suffering". I'd think the city would have some sort of structure in place to deal with landlord/tenant disputes that would preclude the necessity of hiring an expensive private lawyer to recoup at least the tangible monetary losses... well I'd hope so.

Wow, Erin. I think I might have met you when you were right in the middle of all of this. I had no idea you were in such a bad spot! I'm so glad you got answers, and that you know what you have to do to get better. The parallels to a celiac diagnosis are eerily familiar - and disturbing. So glad you're getting well!


Blogger The Celiac Diva said...

Giiiiiirl, you never gave up! I admire that so much, I really enjoyed reading your post and getting to hear about where you've been emotionally and physically this spring and wow, SO glad that chapter of your life finished- cause WOW- what a year!! LOVED hanging with you tonight, you keep trucking and be patient with your body as it goes to bat for you in the healing process. Thanks for sharing your heart and your story, we, your loyal fans ;) - totally get your journey and I'm SO thankful you know what's wrong, what a gift. Now go rest!!! Hugs- Lauren-Lucille

Anonymous Tiffany said...


What a horrible situation that you had to go through! I'm glad you figured out what was going on, but sorry it took a trip around the globe for that to happen. The more I learn about mainstream doctors in the U.S., the more skeptical I am that they can figure out what's really going on with their patient's health. The reality is that the insurance companies are in charge of the care we get - or are denied - not the doctors. I know several MD's that don't accept insurance. They all say that the only way they can treat patients to the best of their availability is to sidestep working with insurance companies. There are certainly wonderful doctors that accept insurance, but I would say they are more the exception in our area, at least. It's seriously a shame that we have such an broken medical industry in this country.

So, kudos to you for taking control of your own health and not giving up until you found the answers you needed! I'm sure it was a shock to have to move, but you will come to love your new place, too!

Take care and I wish you a full recovery so you can get back to your bike and the other things you love doing!

Blogger Unknown said...

Wow what an incredible story. Glad you are in a new mold free home. CRAZY. Of course, I am obsessed with medical mysteries tales and I am dying to know who your doctors are etc. Looking forward to catching up in the fall. I had my own crazy health stuff this spring too. Kind of ignoring it while on vacation but it definitely was a crazy spring.

Blogger Unknown said...

Thank you all for your amazing words. I am settling into my new apartment and starting to slowly feel better physically, but mentally feel so much better now that I am not living in a toxic environment with a horrible landlord anymore.

Today, I rode a 25+ mile bike ride. The longest ride in a year. It was a HUGE accomplishment.

Blogger Meara said...

Question: I am not diagnosed celiac, but have been told to follow the diet due to my colorectal history and problems. Recently, my cabin community suffered a major forest fire, within a mile of our cabin. 3x I have been there I have major symptoms return. Finally, I asked my GI Dr. and she said there are soot toxins that people like me and my children are sensitive to and that I cannot go there again until I get the place cleaned hazmat style; which the insurance company won't approve for another 6 months so I have the luxury of paying for a place that can't be used.

In all your research, have you found the name of soot toxin causing migraines in children and adults as well as diarreah? I have these symptoms for 6 days for 2 days of being in the cabin, and cannot heal until I am away for it for a long time. I'm curious if it is carbon monoxide? What is this toxin and how do I find out more? I have a call in to the Dr. of course as well.

Anonymous Laura said...

HI Erin,
This is a great post and I'm so glad I came across it. I experienced a very similar situation in my health for 4 months with toxic mold in my house. I hopped around from countless doctors and allergists, only to be repeatedly told the cure for my problems would be to take an antidepressant. My body was doing things that were off the charts! Low body temp, blue hands, brain fog, fatigue, hair falling out, mouth sores, etc. I said, "how does depression cause my base body temperature to be so much lower than normal and my gums go bleed?!". Still, they said it was in my head. Long story short, after much detective work and tips from friends, I came to the realization that there was mold in my bathroom. Started feeling better after 3 days of not using that bathroom and went off the inhalers and asthma meds, but after a couple of months I still wasn't 100%. Kept doing my research because I felt that the doctors would continue to miss whatever was going in with me, so I became my own detective. I stopped eating glutten because many of my remaining symptoms correlated with things I was reading about on the internet on gluten intolerance or celiac. So I tried cutting out the gluten to see what would happen and after 2 weeks, I was completely back to my normal self. Turns out I had been sensitive to gluten for several years ( since the birth of my 3rd child was when some of those symptoms started to appear) but had no idea about it. I thought I was just kind of an "inflamed" person on the insides. After 3 months of living strictly gluten free I went for celiac testing and found that I do carry one of the genes for celiac. But I never continued on to get an intestinal biopsy because I can't bear the idea of eating 4 slices of bread for several weeks or months in order to get a diagnosis. Could you imagine?! So now I live strictly gluten free and loving it, and I am mold-free as well. I can't believe I experienced both of these issues at the same time and no doctor was able to point to either one of them. It was all personal detective work and pointers from friends. I feel better than I can remember ever feeling in many many years, and am completely back to my old self. It feels so great!! Thank you for your post. I didn't know there was another mold/gluten person out there with an experience so similar to my own.

Blogger Unknown said...

Hello. I have the same health situation, as I live in a damp old caravan (for now). My advice is to take jatoba tincture (i tried and I think it works but you need to take it for long) and kolorex. A strong treatment of air with ozone (for a couple of hours) with you on a walk will remove at least for a period the mold, and also the humidity must be low. I'm not tested for celiac, but my mental clarity is better when I'm off gluten , I feel next day the consequences

Blogger Mila Rad said...

***However, remediating a black mold situation with a landlord like that, even court ordered' never removes all the mycotoxins, and is more stressful than it is worth. Health is worth more.

Blogger Mila Rad said...

Your story sounds so much like mine, it gave me chills. I had the same symptoms, and the NYC medical merry-go-round that doesn't understand mold biotoxin illness is astonishing. My city inspector was paid off to give me a smoke alarm citation, when there was visible mold, so there's a criminal element. I've been out for two years, after leaving everything porous, all books, couches, pillows, book cases and bed behind and soaking most clothes in ammonia (because the poisonous mycotoxins that mold emits, lingers). Finally getting my health back after mountains of supplements, dietary changes, infrared saunas, CSM and glutathione IVs. Mold is hell. My hope is that one day, allowing mold to take hold of a building (NYC or anywhere) becomes a federal offense.

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