ALCAT results... & our 3 year ride

Since Josh was less than a year old, we have been watching his health.  He went from a plump happy baby to a fussy, crying, upset child who wasn't gaining adequate weight.  At his 9 month, 12 month and 15 month appointment his weight was dropping off it's 50-75th percentile curve.  He was increasingly more tired, more cranky and unsettled and his diapers... ick.

So not a happy camper.

At 15 months old, I took matters into my own hands and called a pediatric allergist.  They got me in right away and ran a few tests on Josh: blood draw, skin test, & patch test.  A few weeks and several lengthy appointments later we discovered that all the tests came back normal except for the blood work.  Josh was officially not allergic to anything.  An allergy affects multiple systems in the body and sends out IgE antibodies out when the allergic substance is present... think breathing, hive, life threatening reactions.  Allergies are immediate.  That wasn't Josh... which is good! However...  Josh was severely anemic and his blood came back as having "malabsorbtion."  His intestines were not adequately absorbing the nutrients it needed to grow and thrive.  Something was wrong with Josh's digestive system.  ::ding ding ding::  That sounded about right so off we went to a pediatric gastroenterologist (GI), the allergist would do us no more good, but they were a huge help in getting the ball rolling.  Josh's problem was gut related, not blood/histamine related.

At 18 months we were able to get into a pediatric gastroenterologist: Dr. H.  I don't even remember all the details now, but test after test after test was ordered.  Dr. H originally thought Josh had 1 of a few genetic disorders.  Scary ones (Cystic Fibrosis  Swatchman Diamond Syndrome, etc).  So we went to the hospital several times to have tests and blood draws performed.  Poked and prodded Josh was.  Test after test (All of which happened while I had a newborn Elizabeth.  Talk about stress.) Result: NORMAL.  Every.single.test.was.normal.  That should have been a relief, but I knew something was wrong with my baby: not gaining adequate weight which dropped his growth curve repeatedly, yucky diapers, change in temperament to an extremely fussy child.  Something.was.wrong.

Dr. H at that point said it must be a milk protein allergy.  Everything with milk, butter, cream, whey, and casein needed to be avoided completely.  Read every label.  No milk can be consumed.  So I ventured into the world of "dairy free."  Cheese was pretty much not able to be substituted... cow milk turned to almond milk... the snack aisle was narrowed to the few that contained no milk ingredients... a butter substitute was found and the love of coconut oil began... eating out was first met with googling ingredients... birthday parties entailed me bringing a Joshie-cupcake or cookie... and label after label was read before consumption.

For the last 3 years this has been our reality.  The beauty in it was that his anemia cleared up.  His weight stabilized.   His stools slowly got better.  His temperament... meh... I'm still working on that.  Josh is just not a very happy child, and because of the temperament and that fact that he's still tiny despite "holding his curve" on the charts, I pulled out gluten about a year ago.  Thus began a whole other set of substitutions and food swaps and elimination   That satisfied me for a time, but...

The mommy radar still went off again and again.  Something is wrong with Josh.  WHAT is wrong with Josh?  I get glimpses to who I think is the real Josh (a sensitive, kind, quieter, sweet boy) and then there is this extremely sad, sensitive, crying child who inhabits my house daily.

In the back of my head I knew I needed to do something, but I didn't know what.  Every visit at the pediatric GI doctor, just seemed like a chat "Hm, ok, his weight is holding at 10th percentile.  Same with his height.  Looks good.  Keep going with the no dairy." ("Oh and you owe me $200 for that chat we just had." Blarg!) The GI ran out of tests and the scary symptoms went away, but that intuition thing in the back of my head just would.not.quit.

Finally a few weeks ago we decided to pull the trigger on a test that I've known about for the last 2 years.  It felt like time to again take Josh's care into our own care and pursue one more test.  It is called the ALCAT Test (Antigen Leukocyte Cellular Antibody Test).  http://www.alcat.com/thetechnology.html   Since Josh's reactions to milk were not hive or breathing related, he technically is not allergic to anything (thus not needing the allergist)... the ALCAT gives you a clear cut answer to what foods you are intolerant of: which foods your body reacts to over time: gut/digestive related.  An intolerance deals with digestive issues, fatigue (Josh was SUPER tired as a 1 year old... still naps at 4), and behavior issues.  The ALCAT basically watches your while blood cell reaction to certain foods.  The panel we chose to get was a 50 food panel test.

The problem: $300 out of pocket.  Ouch.

It was finally time though.  We needed to do it.  We needed to know what foods Josh *really* can't have.

I contacted a lab, ordered the ALCAT.  A blood draw kit arrived at the house.  A blood draw team came to do the draw.  They took 4 tubes of blood and Josh did great!  The blood was to be analyzed against the 50 most common foods.  And then, we waited.

Anxiously waited.

What would the test say?  Is Josh still allergic to milk?  Is Josh allergic to wheat?  Is there some other food that we missed completely?

Tonight... I got the results.  Opening the email, I was nervous.  We would finally have ANSWERS. Concrete answers.  In writing, answers.  For 3 years we never really had answers.  We never knew for sure what was wrong with Josh.  A piece of the puzzle has been missing, even though taking out milk cleared up some symptoms.  I was almost hesitant to click the link.  Unsure as to what was on the other side.  Good news or bad.  It felt weird to be at a point where we were going to be told what foods Josh's body can't handle... for real.

::click::

::enter password::

::sweats::

::peeks with 1 eye::

::STUNNED::

::breathes::

Severely allergic to: NOTHING.  Wow.  Ok, moving on.  

Wait, where is milk and wheat.  ::looks::  Cow's milk and, wait for it, wheat are BOTH on the green column   Green = OK to eat!  Even better... check out the blue blocks:  "You have no reaction to Gluten."  Say what?! "You have no reaction to Casein." (protein in cow milk).  ::FLOORED::  He outgrew his milk intolerance!

So Josh is not severely allergic to ANYTHING and he is NOT allergic/intolerant to milk or wheat.  HOLY FRIGGIN SMOKES! 

Now, before we jump for joy: He is moderately intolerant of bananas and mustard.  Easily avoided though, no? Don't feed Josh bananas or mustard or things containing either. Easy. 

He has a whole list of mild intolerences. He should avoid black pepper, cauliflower, cinnamon, orange, soybean, yellow squash, string beans, sweet potatoes, tomatoes, turkey, and white potatoes if at all possible.  Too much of those things and his system will get sick, weak, or be open for infection (weakened immune system because his system is busy using it's white cells to combat the food, ignoring the actual invader).  

From what I read, it's "ok" for him to have one of those foods on a given day, but then he should definitely avoid that food again for 3 days to let his system rest and not overload it.  It'll take a bit of mindful effort but isn't impossible.  Quite frankly, it's soooooo much easier than looking out for hidden milk and avoiding wheat.

That's a lot to swallow, especially the allowed milk and wheat!  Where do we go from here?

Now we slowly add back in gluten and milk.  He sometimes has gluten anyway (because I am a lazy gluten avoider at times), but he hasn't had any milk in 3 years. So that will be baby steps... for him and for me.  Slowly though, we will work towards him having a "normal" diet with both of those foods.  I can whip up normal cookies and muffins.  I can let Josh eat a cupcake at a birthday party.  We can go to a diner!  That is something we haven't done since Josh was diagnosed because in a diner, you it's a lot harder to avoid allergens (usually we google restaurants before we go to see what doesn't have milk).  Josh can eat a grilled cheese!  I feel like the world opened up for us.

On the flip side, we need to memorize the other intolerant foods and start avoiding them, being mindful that if he has one, it must be avoided for days afterward.

I plan to write a list of the "no" foods and stay away from them for Josh. Bananas and mustard will go on the "you don't eat those EVER" list and the mild intolerant foods will be a "avoid it if you can, let your system rest after you do" list.  The tricky one is black pepper (I love me some pepper), cinnamon (baked in stuff), tomato (::sigh:: pizza and spaghetti)  and soy.  Soy is quite literally in EVERYTHING.  All the other foods are pretty easy to avoid.  So soy is the one I will have to watch for a hidden reaction because although Josh never ever eats soy alone, it's in almost every processed good.  All the other items are pretty easily avoided as they are "whole foods" and not bits that are worked into many foods.  

So we shift gears and we rejoice in possibly leaving food allergy (ok, not allergy... intolerance) world behind and entering Josh in a more normal pattern of eating.  Because I have fought so hard for Josh over the last 3+ years, I won't be able to be lax about the foods that he is intolerant of, in some way, shape, or form.  I get very "mama bear"-ish when it comes to Josh.  I'm protective of him.  I've put too much work into him, darn it!  So I'll be careful about Josh having tomatoes (man he loves ketchup), or cinnamon or oranges.  I'll avoid those foods if at all possible, but I won't have to analyze everything he eats.  I will be able to relax.  And Josh, he will be able to EAT!  We got all of this information 3 days ago and this morning I made waffles with.... milk and regular flour!  So nice.  Josh can eat like a normal person.  If you have been around me at meal times with Josh: playdates, parties, etc: You've gotten a glimpse at the struggle it is to feed Josh and make him still feel normal.  I can move on from that.  You have no idea how good that feels.  Yes, I will avoid the foods on his list, but we all would have foods on our moderate or mild categories.  Everyone.  Everyone would, so really, Josh is normal.  He has foods to avoid, but he's not severely intolerant to anything.  Praise God. :)  His milk allergy has been outgrown. Wheat apparently never was an issue.  Bananas were/are.... who knew. ;) 

Time will tell if Josh's temperament mellows (that would be quite the feat).  Time will tell if Josh's weight starts to climb, but for now, I'm at peace.  I feel like after a 3 year battle, we have answers.  

That feels good.  Josh is normal.  Normal feels pretty sweet right now. :) 

Thanks for hanging on to this medical ride, Josh.  You are a trouper little man.  It's paid off.