Mr. C brain dump

 

This is how I picture Mr. C. (That's how I refer to my Celiacs)

I get mad when people try to explain to me why I got sick or what I should have done differently. I'm sure that over time and likely when I'm feeling better, I will not get mad and will be able to talk more freely.

Today, I'm going to talk about my Celiacs diagnosis. 

First of all, Celiacs is an auto-immune disease that people are genetically pre-disposed to having. I did not do anything to cause this. 

It is NOT a flare up. It is not an allergy or dietary fad. I get VERY SICK when I eat gluten containing items and serious damage has been caused to my intenstines which causes a whole host of problems. I get sick when there is cross contamination, meaning that my meal did not contain any gluten but a plate or knife or something else touched my food.

This is from celiac.org

When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.

Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease.

Celiac disease can develop at any age after people start eating foods or medicines that contain gluten. Left untreated, celiac disease can lead to additional serious health problems.

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FOR YEARS, I have googled my symptoms only to come up empty handed. This is normal. On average, a person with celiacs is misdiagnosed for 6-10 YEARS before they get a proper diagnosis.

For reals, I am NOT blaming doctors. It is a combination of issues. 

#1 A person can be asymptomatic for many years before having problems.

#2 The symptoms can start slowly. This is what happened to me. I can, now, look back as far as 2012 and see that my symptoms were starting. But they were so few and far between that it wasn't anything that I would have even brought up to a doctor. However, the damage to my insides had already started. 

#3 When there is no history of celiacs, there is no reason to do a test. It is very likely that others in my family have/had it and didn't know. My family is so large and spread out, anyone could have anything, and no one would necessarily know. 

#4 When I started googling my symptoms, NOTHING came up. NOTHING. Dr. Google isn't a good place for medical advice, right? BUT, my blood tests were all coming back normal. I was trying to find out what was wrong with me. So, I could only assume that I was ok....until I found out I wasn't. 

#5 Even today, with a diagnosis that showed my numbers to be at the very top of the scale, I STILL don't have many of the symptoms that many celiacs have. 

I did not get a test until my hematologist told me that my body's ability to absorb iron was dropping at an alarming rate. She recommended a celiac test because that is the #1 symptom of Celiacs.

I'm writing this today to tell you 

I DIDN'T DO ANYTHING WRONG. This is a genetic issue that I have had my entire life.

THE DOCTORS DIDN'T DO ANYTHING WRONG.

This has been incredibly difficult and probably the most emotionally challenging thing that I have been through.

Unless you have this, you have no idea what it's like to be out all day, get hungry, and realize YOU CAN'T JUST GO GET A PIZZA or grab something fast. You have NO IDEA what it is like to worry about cross contamination. 

I know that pretty much everyone who is reading this, isn't blaming me or doctors or anything. I needed a place to vent. That's all.

I'm feeling better, physically, now. It's going to take me time to get over some of the emotional hurdles. The other day, Mr. T and I were talking, and I told him, "it's one thing to be gluten free by choice. If you decide you want pizza, you can go get pizza. I can't. It's so hard. I have to meal plan like never before, and things will STILL happen that cause me issues."

I don't particularly care what people think, in general, but I'm not in a place where I can deal with it right now. I *will* be, but I'm not right now. 

In the meantime, I'm still trying to get answers on other issues. Dealing with referrals and insurance has been an absolute nightmare. There will be more down the road....you lucky readers. 

All I ask is that you listen without judgement....it's that walk a mile in a person's shoes thing. 

Remember me?

Hi,

I don't know if you remember me. I'm Tea.

I used to do a lot of races: running, triathlon, open water swimming, etc. I (seemingly) had endless energy. I could train hard 12-15 hours a week, run a business, and take care of things around the house (since I worked from home) and on and on and on. 

Everything changed in 2018. Looking back now, I realize that's when I can actually pinpoint my health issues starting. At the time, I was going through the worst year of my life and peri-menopause, and all of my symptoms pointed to those 2 things. Bloodwork always came back normal. I thought, I'd just ride out the storm.

I went from killing races in 2017 to not being able to complete workouts, being fatigued, having really bad stomach problems and an extreme hunger that I've never had before. I was also not myself. I was irritable, likely because I was in pain. This is when the weight started coming on. The brain fog was so bad that someone could tell me something in the morning, and two hours later, I couldn't remember it.

When 2019 rolled around, the big stresses were almost all wrapped. I wasn't feeling any better. Again, I thought, perimenpause, and maybe stress it just taking longer to go away, especially at the level I had.

Of course, 2020 hits. I started noticing and increase in symptoms, and they were happening more frequently. Seriously, in 2020, there was no way in hell, I was going to the doctor unless I was literally dying. Besides every.single.time., my bloodwork comes back normal. That's not exactly dying, right?

Over those 2 years, I gained an enormous amount of weight. ENORMOUS. None of it could be explained away by COVID-baking. Maybe 10lbs, but we're talking 50lb weight gain.

Early in 2021, I started working with Dina (world famous Dietitian :) ), and someone that I trusted. At the end of the program, 3 months, I hadn't lost a single bit of weight. At that time, Dina recommended that I get my thyroid tested. 

Unfortunately, my health broke down even further. At that time, I had to address what I could. I was having MASSIVE bleeding. Hey, perimenopause bleeding is bad, but this was a new level. My cycle was 14 days, and I was bleeding like someone cut an artery for 18 days. 

THIS WAS URGENT. Thyroid has to wait. I need help NOW. 

Unfortunately, it is not easy to get in with doctors in this post covid year. Between my initial visit, biopsy, ultrasound, blood work, the entire process took 2 months.

Again, everything came back normal.

But, I KNEW I was NOT normal. I'm not the same person I was 3 years ago.

At this point, things went downhill quickly. I got to the point where I couldn't go up a flight of stairs without having to sit down at the top.

I couldn't walk a half mile. When I went to the grocery store, I would have to sit in my car to recover. I was cold all the time. In 90 degrees, I was in a heavy coat. 

My stomach issues were getting worse. I wasn't sleeping.

I decided to try a different primary care doctor. (Mr. Tea's doctor). 

The day I saw her, I did a brain dump. Every single thing, even if it seemed insignificant, I told her. I also told her about my experience with Dina and that Dina recommended I get my thyroid tested. In the examine, she said that my thyroid also felt a bit enlarged, so she was going to order an ultrasound.

Of course, my blood panel came back pretty normal; other than low iron. My thyroid tests came back as normal, except that I tested positive for thyroid antibodies (a normal test would have been negative).

When I got my blood tests back, I broke down crying. I didn't WANT something to be wrong. BUT there IS something wrong with me, and no one can figure out what it is. I can't even go to the store without being completely wiped out, among other problems.

I was at a level of hopelessness that I've never felt before.

I told my PCP this. She sent me to a hematologist for more in depth testing. She also referred me to and endocrinologist and ordered an ultrasound for my thyroid.

Every single doctor I saw, I started with the same thing, "There is something wrong with me. I'm not the same person I was in 2017".

If you've ever had to deal with referrals and insurance and all that shit, it's a long slow process. It feels even longer when you're in pain and just want some answers. At this point, ANY ANSWERS. I just needed to hear that there was something that could be done.

Enter the hematologist.

The greatest doctor I have EVER met in my entire life. First of all, she was hilarious. I haven't laughed in a long time. 

Most importantly, she didn't look at my symptoms as individual events. She was the first doctor to look at everything and start putting the pieces together, everything; even the intense menstrual bleeding.

The first thing she noticed was that I was told I had low iron (which is true), the more concerning an urgent situation was that my iron continually dropped over the 3 current blood panels, and my tests are showing that my body's ability to absorb iron is dropping at an alarming rate.

She told me if this had gone on much longer, I would have needed a blood transfusion. She ordered Iron, IV infusions. 1x per week for 2 weeks then every 3 months for a year.

Then she said the magical words, "The more concerning question is WHY is this happening?"

Among other things, low iron absorption can be caused by celiacs and given the digestive problems, she ordered a celiacs panel.

PRAISE HEYZEUS. SOMEONE IS GOING BEYOND MY SYMPTOMS.

More bloodwork. This time also being tested for Celiacs. (And of course, another referral to a gastroentologist).

This time my blood tests came back showing the iron trend continuing. 

We are still working with the insurance company on the IV infusions because I need someone sitting behind a desk to determine the appropriate level of care.....not my doctor.

But, I digress.

At least, I'm making progress. 

I now know that I have anemia, and I was diagnosed with celiacs.

CELIACS. Let that sink in. I have NO ONE in my family who has celiacs. NOT ONE PERSON. I turn 54 this month. 

Since I got the results, I've been on that gluten-free life. It's easy when I'm home. But it's harder when I'm out. 

I can't even tell you how much better I feel just addressing that issue. I accidentally had one small taste of something the other day, and I was miserable for the rest of the day. Avoiding those foods is easy when they make me so sick. 

(BTW: the extreme hunger could have been caused by the celiacs. My body wasn't absorbing nutrients, so my brain was saying "send more food", which I obliged).

In the meantime, I still have my thyroid issue. I had the ultrasound and found out that I have a ginormous nodule on my thyroid, which is weird because looking at me, you can't even see it. But it's huge, it has taken over my entire right side of my thyroid.

Now, I'm going in for a biopsy (on Wednesday of this week). 

I'm not terribly worried about it. Whether it's cancer or not, the treatment is the same: rip that sucker out and go on hormones the rest of my life. (Ok, I know there are other types of thyroid cancer that are WAY more serious, but they are also even more rare. And really, I don't have a family history of thyroid cancer).

Of course, the question I have asked myself is why did everything hit in 2018? I'll never know for sure, but I *do* think it had to do with the level of stress that I was going through at the time and the fact that I am perimenopausal. As I've learned, thyroid issues in women can be exacerbated perimenopause.

Also, all these issues is like a chicken and egg thing. Did thyroid problems cause celiacs which cause the anemia? Did celiacs cause everything? At this point, the order of events doesn't matter.

I have a bunch of appointments still to come, and I have bunch more to figure out. The waiting is hard, but it is what it is at this point.

Biopsy, follow up with endocrinologists.

And more appoints with the gastro to do a biopsy on my small intestine to find out how much damage there is. 

Then of course, also, on going appointments with the hematologist.

Even with all of that, I feel like I'm on a path to treatment now. I never would have seen any of this coming, but here we are.

Feeling more positive, I signed up for a 5k. It's Dec 5th. I am hoping to be strong enough to walk it. It feels like an enormous goal since I can't even walk a mile right now. But, there's always another race. 

If you've made it to the end, I'm actually pretty impressed. I think I just needed to dump all this out there. Maybe it's a good way to document my progress as time goes on. Maybe it will be cathartic for me.

Also, I realize that I've probably been pretty vague about symptoms or appointments, but this was just a brain dump. I've had to tell my story over and over so many times. I actually have text messages to myself, so I can remember what I've said and so I don't leave out anything.