I love to share posts from other bloggers on my page and one of my favorite bloggers is the Gluten Dude. (http://glutendude.com/gluten-free-blog/) I enjoy his blogging style and I find that he has some very relevant posts to share. I recently came across this post from him and thought I would share it with you.
I am sure many of you can relate to this – having gone through numerous medical tests and consulted with countless “medical professionals” only to be sick, frustrated and broke until you were diagnosed with Celiac Disease or gluten intolerance. Suddenly there was an answer and perhaps even anger as to why it took so long to find the answer. This was the situation I found myself in and one line in this post completely resonated with me and I am sure you can identify with it as well. “I didn’t know how sick I was until I wasn’t sick anymore.”
Here is the complete story….
We’ve all had our dose of doctor horror stories. Heck…many of you shared your story right here.
While I’m grateful for the care I’ve received over the years for the myriad of my health issues and especially grateful for the care Mrs. Dude received this summer, there is still something just not right about our system.
Namely…we’re never told what anything costs. We just put our blind faith in our doctors, assume insurance will pick it up and hope for the best.
But sometimes that blows up in our face. Big time. Especially when a doctor prescribes solution after expensive solution when a simple celiac blood test was the answer all along.
Check out this email I received from a loving and frustrated mom. It’s long but stick with it. It’s worth the read…guaranteed…or your money back.
And I’m going to interject a few Dude Notes along the way.
Ok, so here goes! My 23 year old daughter was diagnosed with Celiac in January of this year after 4 1/2 months of tests and being horribly sick. Now without going through her entire life history I will just say that after getting this diagnosis we realized she has been sick her entire life; it just took a major life stressor to really make it rear its ugly head.
Dude Note: I’ve heard this from so many celiacs and I can relate myself. “I didn’t know how sick I was until I wasn’t sick anymore.” You just accept what you have as…normal.
It all began October 2013; she initially was just feeling sluggish. Now before I go too far let me explain. She is a very active 23 year old who works out several times a week, sometimes a day. She is a preschool teacher for 17 2-3 year olds (God bless her). She was a Sunday school teacher for 4-5 year olds and was planning her wedding. So she had a lot going on.It seemed like she would call me each day and say she just couldn’t understand why she was so tired. She felt she was getting plenty of sleep. I told her “hello you have a lot on your plate; of course you are tired.” (I felt guilty after we found out there really was a problem).
Then she would call me what seemed like every day with a new symptom. She complained of always feeling tired, shortness of breath, chest pain, pain in her extremities, severe headaches, brain fog, she was really irritable, she had really bad dry scalp, mouth sores, leg cramps, unexplained acne (uncommon for her), loss of appetite, mood swings, among many other things.
Dude Note: To this day, I am still amazed at the many ways celiac can manifest itself with such a variety of symptoms.
I took her to the Dr. because we have a strong family history of Thyroid disorders so I thought she should get tested. The Dr. was very concerned about the shortness of breath and immediately ordered a chest CT to check for blood clots in her lungs possibly caused by the birth control. Also my mother had a pulmonary embolism in January of 2013 causing her death.
Dude Note: This really hits home as I had multiple embolisms in both my lungs in 2008. Seeing that it’s the leading cause of instant death, I know how lucky I am to still be here.
The CT was negative. The Dr. did a full work up to which he said she has really low iron and was anemic but he wanted to run another iron related test. Her iron was dropping very quickly and in less than 5 days there was a major difference. My primary care Dr. was concerned but not nearly as much as I was so I reached out to a hematologist to have her seen. I took all the lab work results for him to see the changes in her blood iron levels. He was very concerned; he thought she was possibly bleeding internally. We have a very strong history of bowel disease on my side as well as my husbands so he ordered some stool cultures. The cultures were negative.But he felt the most important thing was to try to get her iron levels up first. Her iron, iron saturation levels as well as her ferritin levels were bottomed out and her TIBC was through the roof, and so he ordered IV Iron infusions. I won’t even go into how difficult that was. (Chronic problems with her veins). Anyway she had two. She didn’t feel better immediately and new symptoms were arriving daily. The doctors were confused they thought for sure these symptoms were not all related.
Dude Note: THIS is the point where celiac has to enter the minds of the doctor. We’ll get there. I think.
She wore a heart monitor for a week because of the severe chest pain and heart racing. That also proved to be normal. She had developed bladder incontinence (devastating her) so we went to the GYN who performed a pelvic and pressed on her bladder enough to cause her to wet herself and she couldn’t even feel the pressure. So the GYN immediately suggested an MRI of her brain to check for MS, because the bladder issue is a sign of that. It turned out negative.After numerous trips to doctors and emergency rooms and such I finally pushed the doctor to order a colonoscopy/endocopy. We couldn’t wait anymore. All test were inconclusive and she was getting worse by the day. One trip to the ER nearly resulted in me getting thrown out for telling off the doctor who insisted there was nothing wrong and that she looked perfectly normal.
Dude Note: How many times have we heard this? Effing doctors with a God complex. If they can’t find a diagnosis, it must be in the patient’s head. Don’t even get me started.
By that time she was not just pale she was gray, she looked like she was dying and I was scared to death. It seemed like no one believed her. When we got the results they showed that her villi were blunted, suggestive of Celiac like disease. The doctor followed up with a blood test that confirmed Celiac disease. Anything over 19 is positive and her result was 165. So we had an answer but the docs were sure the bladder issue was unrelated.However 3 days of no gluten and it completely corrected itself. And the two times she has gotten glutened that was the first symptom to come back. Upon finding your site I saw that celiac can cause bladder/cervical swelling and I showed the doctors; none of them have ever heard of that. It took a few months to get her feeling better but it has been a real eye opener. The gastroenterologist said celiac is something you are born with and I was just stunned.
Dude Note: To clarify…yes we can be born with the gene but it doesn’t mean you actually have celiac disease until it rears its ugly head.
My daughter had been sick off and on throughout her life and was always just diagnosed with whatever was symptom related. Milk allergy/Lactose intolerant, anemia supposedly from heavy menstrual cycles, Neuro Cardiac Syncope because of dizziness/fainting and collapsible episodes. She has ADD, and anxiety but she manages everything without medication. She takes prenatal vitamins every day (doc says they are best)…gluten free of course.It has truly been a very educational experience to go through this with my daughter. When she gets glutened, all her symptoms come back and can last as long as 2 weeks. I talk to everybody I know about our experience because had I not pushed and advocated for my daughter, the doctors may have treated her anemia and just thought everything else was in her head. I have shown your celiac symptoms chart
to all her doctors so that they can know how many symptoms can be related to this disease.
Thank you for everything you do Gluten Dude! It is appreciated more than you can ever know. We have now hit the 1 year mark of when this began. So far the iron infusion has held but the hematologist says she may require them throughout her life to maintain healthy levels. It was a frustrating situation to get the diagnosis and all the tests she went through was crazy. In four months, $24,000 worth or medical claims processed through my insurance company. All of which could have been avoided with a blood test and endoscopy.
It is great to see better education coming out about this disease but it definitely needs to continue, especially in the medical community.
Once again thank you for everything you do and your support for the Celiac community.
$24,000 when a simple celiac blood test would have done the trick.
That just ain’t right.