Wednesday, October 26, 2011

Explaining Evelyn: Part 1 - How We Got the Diagnosis of Celiac Disease

I can't tell you how many emails and messages I have typed out to friends, family, and random strangers desperate for help or answers explaining how we came to discover that Evelyn has Celiac Disease.  I love helping people and answering these questions.  I really do.  But typing it over and over does get a bit tedious and I have two crazies running around my house to tend to.  So this post is a long time in coming.

Evelyn was a plump baby.  She was 7 lbs. at birth, 12 lbs. at 2 months, and 14 lbs. at 4 months.  Growing was not an issue for her.  Me consuming dairy would upset her tummy, but otherwise she was happy and healthy.

Clearly, gaining weight was not a problem area.

This didn't last long though.  We introduced solid food around 7 months, and by 9 months she started having problems.  Her first signs were that she stopped gaining weight and her poop never got normal.  This is going to be more graphic than you probably care to read over your breakfast, but I get asked to clarify what I mean by normal, so here goes.  We cloth diaper.  You can't throw solid food poop in your washing machine, you have to plop it in the toilet.  When kiddos first start solid food, that's a messy proposition.  I have a spatula in the bathroom reserved for this purpose only.  After a few months though, their poop should get more solid and be able to just be shaken off into the toilet.  This NEVER happened with Evelyn.  Ever.  Yuck.

We still thought that dairy may be the issue, but weren't really sure.

She was also a horrible sleeper.  Horrible.  She was up multiple times a night, every night.

Evelyn around 18 months, considerable loss of chunk-ola-ness.

On a trip up to Iowa when Evelyn was around 18 months old is when the real search began.  I knew something was off.  Most people tried to convince me otherwise because I was an obsessive new mom and was presumably over reacting.  I also hadn't gotten to sleep through the night on a regular basis for a year and a half, so there is some delirium to be considered too.  But, I KNEW something was not right with my babe. 

She broke out in a HORRIBLE blistering rash.  She could hardly sit.  I thought it was the diapers because at that time was when the whole Pampers Dry Max mess was going on.  Looking back, it wasn't the diapers.  On this trip was the first time I let her have processed wheat products.  White bread.  Pancakes.  Etc.  Before then, at home, she had only had grain products from whole wheat that I had ground myself.  I know, if you didn't think I was a crazy crunchy lady before, I officially labeled myself now.  Moving on...

When we got back home, the rash started to heal, but was still not pretty.  So I took her to our naturopath to have her look at it and figure out what to do.  She looked at it and said, that's food related.  I figured it might be dairy since she had also drank milk on this trip and we don't at home usually and because that had been an issue for her in the past.  So we had a ALCAT food sensitivities test done.  It came back with a TON of foods on it (no dairy though).  I was supposed to take her off of almost everything she ever ate.  That lasted all of 2 weeks and then my poor little skinny babe needed more food.  So we started putting foods back in with no reaction.  The only food that for sure gave us a reaction was sunflower.  So we kept her off that, but returned to eating everything else normally.  We returned to only letting her eat fresh ground wheat products though.

We then took her to our regular doctor and had an allergy panel done.  It came back without the slightest trace of any allergies.  Not even remotely elevated levels of antibodies.  I figured that dairy would show up on there and that was where the rash was maybe from.  So now we were confused.  Maybe it was the diapers???

Then came one Sunday at church.  We always had her bring her own snack to church.  This Sunday though she got a hold of another child's goldfish cracker.  Later that day the rash returned. 

Sad, sad, blistery rash.  :(

Along with the rash came some extreme Evelyn symptoms.  No sleep.  Crazy, crazy meltdowns over EVERYTHING.  Sobbing over everything you told her to do.  I have video of her thrashing around on the floor completely out of control after a gluten exposure screaming at the top of her lungs and being totally unresponsive to any attempts to calm her down.  This was happening multiple times a day and for hours (literally) in the middle of the night.

We now assumed that gluten was the culprit.  And sure enough, every time she got gluten exposure, she got the rash.  So we stopped feeding her gluten, obviously.  But, I'm an obsessive researcher and wanted to figure out why gluten was giving her such a horrible rash.  And why once she was off of it she started gaining weight, as in a POUND A MONTH!

Insert really poorly made graph of Evelyn's weight, but you get the idea.

This led me to pictures of dermatitis herpepteformis.  This is essentially a rash that is caused by gluten that is only present in people who have Celiac Disease.  It only shows up in about 10% of Celiaces though.  NOT a diagnosis I wanted, but one that I felt we needed to explore since Celiac Disease is a whole different ballgame than a gluten sensitivity.  

I can't get it to not be this weird size, but here's what she looked like at about 22 months.  Skinny limbs, bloated belly. 

So we had some genetic testing done when she was 27ish months old (I know, I hate when people use months after the age of 2, but it makes it easier to think in months with this stuff for me) and found out that Evelyn does in fact carry the Celiac gene.  Now, gene does not equal Celiac disease.  It just means you have the ability to develop Celiac Disease.

So we found a pediatric gastroenterologist at our local children's hospital who specializes in Celiac Disease.  We hauled ourselves in there with growth charts, pictures of rashes, food logs...the whole spiel.  
Now, let me backtrack with a little info.  The gold standard of diagnosing Celiac Disease goes something like this.
  • Show symptoms
  • Have blood test done to test for TtG antibodies
  • If antibodies are present then eat gluten every day for 6-8 weeks
  • Go under general anesthesia and have a scope and biopsy done of your intestines
  • Look for damage in the biopsy to positively diagnose with Celiac
She looked at the pictures and the data and said, I think she has Celiac.   She had three different dermatologists look at: a pediatric dermatologist at the hospital, the head of dermatology for the affliated adult hospital, and the top dermatologist in the country who deals with dermatitis herpeteformis.  They all independently came back with the answer that the rash they were looking at was indeed DH.  Because of this, her recommendation was to NOT do the extensive testing and put such a tiny body through all that. 

So with that, we had our diagnosis.

When I have a chance...Part 2 - How our lives changed and what it means for our family


  1. Thank you for posting this. I suffer from Gluten Intolerance. I can have it but in small non GMO amounts. I have an 8 year old aspie and we are going to be gluten free again after the 1st of the year. Thank you.

  2. Thanks for sharing. My son (4 yrs old in a few days) has been having behavior issues with major meltdowns. And now is having almost daily throwing up (usually in the morning or at night) and major stinky gas and bloating. My dr feels he might have a gluton sensitivity but after doing some reading I am going to ask for the blood test because I feel celiac is a different ball game them 'just' a sensitivity.


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