When You Have Celiac Disease & Things Don’t Get Better

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When you have celiac disease & things don't get better

Originally when I was diagnosed with celiac disease (over 3 years ago), I thought I had the answer to all my problems.  Finally, everything that was bothering me would be able to heal and go away.  Right?

Wrong.  That’s not what happened.

I was very diligent in following a “Gluten Free” diet to the point of annoyance to everyone around me.  I did not cheat EVER.  Eating gluten was not worth sacrificing my recovery.  I had been sick long enough. I just wanted to get back to feeling healthy and strong again.

But 18 months passed, and strictly following the “Gluten Free” diet did not resolve my problems. 

I still had a laundry list of symptoms.  I still felt fatigue, bloating, body aches, depressed.  I would still get migraines and yeast infections (once every 4-6 weeks – which was just awesome!).  My sleep was restless.  My skin felt as though it had a film of foreign residue on it no matter how many times I washed it.  My body felt like it belonged to someone else.

I would hear and read story after story of all these other people who were diagnosed with celiac disease.  They would start a “Gluten-Free” diet and then they would feel dramatically different.  Like the clouds and haze before them had been lifted.  They all felt amazingly better.

What the heck? Was I the exception to the rule? Why didn’t I feel amazing when I went gluten-free? 

My doctor said to be patient.  She said that the average healing process for someone with celiac disease could be anywhere from 2-5 years to recover.  According to an article on Verywell.com, a study by the Mayo Clinic in Minnesota followed 241 adults who had been diagnosed with celiac disease and then followed up with a biopsy.  Of those 241 adults, after two years, only “about one-third had intestinal villi that had recovered fully.  After five years, about two-thirds had fully recovered intestinal villi.”

All I could think was that’s a LONG F#@%’ing TIME.

I was and still am so desperate to feel better.  I want my body back.  I want my health back.

When researching online and in books reasons for why I wasn’t improving (or feeling amazing like those other celiacs), I a book by Peter H.R. Green, M.D. and Rory Jones, M.S. called Celiac Disease: A Hidden Epidemic.  In this book, they state,

“Not everyone gets well rapidly.  Some patients are simply slow responders and require months (or more) to see an improvement.  Medically, the time frame hinges on the nature, severity, and duration of symptoms prior to diagnosis.  It is also impacted by a number of ancillary conditions that may complicate the process.”

The book also included a list for the following reasons for why someone does not get better following a “Gluten-Free” diet:

  1. You are still getting gluten
  2. The ongoing inflammatory process
  3. You have a common associated condition that also requires treatment
  4. There is something else medically wrong
  5. You have true refractory sprue
  6. You were given the wrong diagnosis and do not have celiac disease

Come to find out over the next year through a number of blood tests and test kits, Celiac disease didn’t just wreak havoc on my intestinal wall; it created a number of additional conditions.  So far, I have been diagnosed with a lengthy list of food sensitivities, Adrenal Fatigue, Hypothyroidism, SIBO, and Candida.  Yay me!

For right now, the worst part is that I am not even sure if this is everything going on inside my body, and if I have even begun the healing process yet.  Is it 2-5 years from now?  At this point, all I know is that until I resolved the additional conditions that celiac disease has helped to create in my body, I am not going to heal or recover.

Everything in our bodies needs our digestive system to work properly in order to function properly.  When our digestive system is compromised, everything in our bodies is affected and can manifest itself in a multitude of different ways.  It’s the same reason why celiac disease has over 300 symptoms.

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