Sunday, January 27, 2013

Hyperemesis and Celiac Disease: the 1%


I am the 1%.

No, not the Occupy Wallstreet 1%.

The 1% of the population (or less) that has Hyperemesis Gravidarum (HG).
The 1% of the population (or more) that has Gluten Intolerance/Celiac Disease.

The odds aren't likely that I would have both of the two rarest diseases in America (according to every doctor who has no idea how to treat me for either). If I were part of the 1% who control 43% of all the money in the United States, perhaps I could find the help I need to survive being part of these other 1% demographics.  But, unfortunately for me being part of the 99% in terms of finances, not only does insurance not cover almost every test I need, but I'm the theoretical patient only heard about in textbooks. There is not a single bit of research up to date that links gluten to HG, however, according to Kimber MacGibbon, co-founder of the Hyperemesis Research Foundation (HER), women who have HG reveal some interesting correlations and connections. Not only do women who have HG have limited diets (i.e. have allergies and can't tolerate wheat or other foods), but cytokins are increased in the blood of these women. Cytokins are also elevated when gluten is ingested by someone with Celiac disease.

Some facts about Gluten Allergy:

  • Gluten Allergy is not the same as Celiac Disease.
    • Celiac Disease may show up more easily on a blood test, but allergy has to be genetically screened for, from a DNA sample.
    • Gluten Allergy doesn't produce the same exact symptoms that Celiac tests can pick up, but still leaves the sufferer extremely sick.
  • As with any allergy, Gluten Allergy causes your stomach to be "off" when you ingest gluten and results in leaking proteins from many foods which creates an allergic reaction (i.e. Leaky Gut Syndrome).
  • While only 1% of the population in the U.S. has Celiac Disease, an estimated 20% of the population has gluten issues and 97% of people who have gluten intolerance of any kind don't know it!
  • People with gluten allergy often have an allergy to corn as both corn and gluten follow the same metabolic pathways in the body. 
  • There is also a correlation between casein, sugar and other foods and gluten being intolerable by people with gluten allergy.
  • Gluten triggers MANY autoimmune issues within the body, including asthma, Rheumatoid arthritis and autistic symptoms (i.e. Autism, Asperger's), but there isn't enough data from studies. 
Quick Facts about Hyperemesis Gravidarum:
  • It's not a Harry Potter Spell. It's extremely severe morning sickness that sends you to the hospital because you dehydrate and can't keep down liquid.
  • In most mothers who have HG, their children have eczema, asthma and other allergies. 
    • Patients with Gluten Intolerance or Celiac disease also are co-morbid with these allergies which are also defined as (genetic) immune issues.
I've had gluten issues since I was born, but was misdiagnosed for almost 18 years of my life. I was told I had lactose intolerance, bi-polar disorder, depression, Asperger's Syndrome, ADHD, ADD and a plethora of other issues which specialists tried to unsuccessfully medicate me for as a child. Finally, when I became my own advocate at 18 and got off the chemical cocktail my doctor's insisted on, even my suspected Autistic and Learning Disability symptoms were reversed and, eventually with the help of therapy, eliminated. My stomach pain dissipated and my energy and ability to think clearly were unbelievably improved. Doctors wanted to say it was because I became an adult and magically "grew out of it" and told me it was all in my head when I had pain or thinking issues for several days because I was accidently "glutened."

 For the next 7 months, I will be dedicating the rest of my pregnancy to documenting my gluten free pregnancy journey and Hyperemesis in hopes of helping anyone else who has issues with either. 


Anonymous said...
Wednesday, December 18, 2013

I hit those odds, too! Just thought I would let you know you aren't alone.

Anonymous said...
Sunday, March 30, 2014

Me, too.

Anonymous said...
Wednesday, April 08, 2015

You are not alone. I had HG will all my pregnancies. Only just recently did I get diagnosed with Celiac. I hope the gluten free diet helps with the HG. I am curious because would like to have another baby.

Anonymous said...
Tuesday, April 28, 2015

I've got the same thing going on! Ugh, it makes me hate doctors for all the years spent medicating a misdiagnosis on the celiac disease.

Laura Tingley
Monday, May 04, 2015

I was recently diagnosed with celiac disease. With the only pregnancy I've ever had, I was diagnosed with HG. Unfortunately, I was too sick to carry the baby without dying and have suffered the loss ever since. It's nice to know I'm not alone in being a medical catastrophe.

Anonymous said...
Monday, September 28, 2015

Amazing! Over the last 5 years I've had 2.3 hyperemesis pregnancies. My youngest is almost 2 and I've been unwell for a while. I just thought it was post-HG issues affecting me. But have recently found that eliminating gluten has greatly helped.

Tuesday, May 31, 2016

And I have an HG baby and I think I have leaky gut...

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