Gut Instinct...Pun intended. Diagnoses Celiac's Disease.

Those who know me have no doubt heard this story however I just feel compelled to document it.

For all those times when you feel like life is truly impossible at the moment, for those days you sob because you cannot change things no matter how hard you want to, for all the times you scream and think that God doesn't hear you; this is a story for you. This is the story of acceptance and peace after feeling defeated and hopeless.

This is our story.

My son was suffering horrible stomach cramping. I took him to his doctor.  I love this woman and highly recommend her. She has such genuine love for her patients and wish that she wasn't only a pediatrician so that she could be my doctor too...but I digress. "Dr Natalie, Elijah is always complaining of stomach pains. I don't know what to do."

After checking out Elijah, my 9 year old son, she determined that his was full of crap. Literally. X-rays confirmed that my son was horribly backed up with constipation. We cleaned him out with Miralax in hopes that this would improve the stomach pains. He was regular for a short period of time and thankfully enjoyed the taste of prunes so getting him to eat those everyday with breakfast was not a fight. Still the pains worsened.

We went back on the Miralax regimen but the pains never ceased. People began telling me that he may be faking it. I just could not believe that. My son may whimper over every bump and bruise, but internal issues he has never cried about before. Elijah is on his 3rd set of tubes in his ears and he has never cried over the pain his ears must have suffered. He was the baby who was ill and would vomit but smile through it all. No. Something was not right. Mom was not going to give up on him - we were not going to back down on finding what was wrong.

I told Dr. Natalie that I feared I have given my son an ulcer. I meant it! Anyone who knows me knows I can really be a pain sometimes. When my blood pressure rises, no doubt those around me suffer too. I can be  nag, I admit it. I like things done my way most of the time. I am a single mom who stresses easily, works and does school full time, does not know how to relax, and have now given my son an ulcer because of it. I was absolutely sure of it. Dr. Natalie, knowing me as well as she has for the past 9 years did not readily dispute my claim although she did giggle and try to look at this all with her logical brain and not my emotionally charged irrational one.

She could tell I was worried about damaging my son who is as prone to anxiety as his mother and as a mother herself could relate to wanting answers. We were going to figure this out. I knew I had someone on my side who also was not going to give up. She gave me a referral for a pediatric gastro entomologist (I think that was his fancy title. We just called him the tummy doctor.) We were going to go ask him to perform a scope to determine does my son or does he not have an ulcer.

The Tummy Doctor was a cold man. I tried very hard to crack through that shell of his and got a few smiles and laughs out of him, but not many. He did not want to perform the endoscopy because he said the cause of the pain was constipation. I wanted to scream at him. I wanted to full blown pound my fists on the wall and throw the biggest fit he had ever seen from an adult. MY SON HAS BEEN SUFFERING FOR AT LEAST 3 MONTHS NOW! SCOPE HIM I AM BEGGING YOU! WE NEED ANSWERS! No. No need to do such evasive measures he tells us. Elijah is merely severely constipated. I did not believe him for a minute. I tried to act like I did but no way in hell did I believe this man and every ounce of confidence I had in him went down the toilet with my son's excrement after he made us do Magnesium Nitrate and Miralax for another month. Blood work showed no sign of celiacs, chron's disease or anything else that may cause such pains.

No reprieve from the pain. My son was cleaned out but still literally doubled over from the sheer pain of it all and I felt absolutely powerless to do anything about it.

The was only one day, for about 5 minutes I let myself think that maybe he really was faking it. He never complained about the pain around others - only to me. He never mentioned it to his dad or step mom. Could I have been so blind in my trust of my son to have been duped by this 9 year old?

Picking him up from school he said his stomach hurt really bad. I shook my head at him. "You're fine" I said "Come on." He turned white, leaned over and projectile vomited from the excruciating pain for 15 minutes right there in the gym. I ran to the bathroom to get him a wet towel to help make him feel better and could have wet that towel with my own tears. How could I have doubted him?!

No. We have to find the cause of this.

I charged him right back to that Tummy Doctor and said FIX THIS. SCOPE HIM!

Still tummy doctor said no need to scope. Let's do an ultrasound. I was so livid. I don't go around asking people to do horribly unthinkable things to my precious son. I understand that the endoscopy is evasive but I was absolutely positive it was the only way to discover what was truly wrong and that my son likely had an ulcer that I have caused. (I tend to be dramatic, I fully realize this.)

The ultrasound was a couple weeks later. Results another week or two after that. Other than a slightly enlarged uritor, nothing out of the ordinary and NOTHING found that would cause the amount of pain that he was experiencing.

Another couple weeks of my son being in intense pain before the doctor finally agreed to scope him.

My son had undergone surgery at 6 1/2 weeks old for an inguinal hernia, has had 3 operations for his tubes in his ears and now at 9 years old was about to go through an endoscopy. I was frantic about having made the right decision. If they found nothing I would have such guilt.

No ulcer found.

Guilt.

They decided to do a biopsy of his small intestine while they were in there. The tummy doctor said maybe there was something microscopic causing these pains.

Results were delivered to Dr. Natalie. Celiac's Disease. He had received a false negative in the blood work. My son would no longer be able to have gluten.

You have to understand that every meal of the day plus snacks involves gluten in my family. EVERY ONE. OK I said, the other things we enjoy for breakfast are eggs and cheese. Elijah loves omelets. Omelets it is. Omelets for every meal though? Oh how was I going to cook for my son? Normally with such news I would comfort him with ravioli. Shoot wait he can't have that!

"Ding Ding" The ice cream truck pulls around. Ice cream! He can have that! He runs down as I stand there like  proud mom watching from the 3rd floor as he makes a very grown up decision on what to get.

April 2011 after 6 months or more of pain, we had just gotten the call that day from Dr. Natalie's office. I had no clue what gluten was other than the nurse said to avoid wheat. We were going to do some research together, Elijah and I, while dinner was cooking. Whatever that was going to be.

We had a name now. We had questions! I had relief that my gut instinct was  on the money in pushing for that scope.

He runs up so excited and proud of his decision. "Mom I've always wanted to try this!" and shows me the malt cup he picked. I told him to put it in the freezer for after dinner.

We researched. NO MALT. He cried. I tried not to but as soon as he went to shower I bawled my eyes out. Called my mom and cried more. I told her about the giant list of things he can't have. The CAN'TS. Focusing on the negatives. The devastation of my son begging to have the Malt Cup and his sobbing as we threw it out together like a mini-funeral.

Elijah then had a blood rast test done. Celiacs are prone to other food allergies also. If we had to get used to a new diet, now was the time to find out other allergies before I messed up his diet any further.

Bad news - he seems to have elevated levels with dairy, eggs and hazelnuts.

WHAT DID WE DO TO DESERVE THIS?! I don't know that I have cried that hard in so long. Put a tube in him - I can't feed him! I felt utterly defeated.

Gluten Free Expo. My amazing parents joined Elijah and me as we were about to dive deep into the world of gluten free foods and seek out alternatives for the dairy and eggs that we were sorely missing. His dad, wife and daughter met us there. We had a support team. We were all in this together. I was surrounded by love...and personal despair.

I could not find anything that tasted like the food I was used to. Oh my poor baby - these foods without dairy or eggs and rice flour were nothing like the foods we were used to. How was I going to cook for my son? I can't do this. I kept thinking poor Elijah, poor me. We have to make this work but I was slipping into an awful depression and helplessness that I didn't know how to take care of this child that I had been blessed with.He deserved a better mom than I could be at that moment.

I didn't give up on him before but now I was.

Guilt. Shame. Disgust in myself. Anger. Outrage that I could give up on making this work. I needed to be strong for him, for us.

A couple of weeks after the Expo I was finally on the up spin again. I was going to make this work and today's visit to the allergist was going to confirm that I needed to embrace this new dietary lifestyle for my son's sake. I would no longer allow myself to think like he was deprived and we would try everything on the market until we found something that tasted just as good.

The put the grid of marker spots on his back and started the scratch test.

Yep. I was going to find recipes if I had to. We were going to figure out how to get that almond milk we tried to taste good to him. We would create enough awareness with our family and friends that he would not have to worry about being an outcast. We were going to figure out how to do this together.

Then a miracle happened. Just as I was trying to convince myself that this would be ok the Doctor comes in with the results.

He was NOT allergic to Hazlenuts.

He was NOT allergic to dairy.

He was NOT allergic to Eggs.

He was allergic to tree pollen...but Halleluiah my son was ONLY A CELIAC!

This we can do.

I called mom who cried tears of joy with me.

We giggled about how silly it was that we were happy he is only a Celiac.

We accepted this new lifestyle and embraced it far more than we did before. We had relief.

God had said, "oh you think Celiac's Disease is bad? Here try living without all these foods too. Could be worse right? Now don't you ever doubt your strength again. I only give you what you can handle. HE'S ONLY A CELIAC for goodness sake!"

We are truly blessed. Since finding out about the gluten free lifestyle and coming to meet so many people with such a variety of autoimmune diseases since then, we have been able to share our story and hopefully inspire them out of a place of defeat and into that place of acceptance.

We have been through a huge surge of growth in a short 4 months that sometimes it feels as though we have been on this road for years trying to get to where we are right now. We have made the best of the hand we have been dealt and we continue to look for ways to help others who have been in the same position as us.

Courage is hanging in there despite what hurdles you face and tackling it head on. I was not courageous every step of our journey, but I don't think that we have to be 100% courageous 100% of the time. That's what God is there for. He is that tough love giving parent that says "I'll give you something to cry about" but lowers his hand when we realize the lesson to be learned.