Thursday, September 12, 2013

Jack's Daddy has Celiac Disease Too

Jack and his Daddy, Jeff
This may be a long post...BUT all this information is important in the explanation of my husband's celiac disease diagnosis.

This is also a follow-up from a previous post:
Jack's Daddy is Homozygous & I'm...

Autoimmune diseases seem to run in our family. Jack's Daddy, Jeff, was diagnosed with sarcoidosis in February 2012 after 5 months of tests, xrays, MRI, biopsy, etc. His mother was also diagnosed with sarcoidosis about 5 years ago.

It's interesting to say the least. There's similarities to sarcoidosis and celiac disease in that they both can have a wide range of symptoms!

With all that said, here's how my husband was diagnosed with sarcoidosis...and then celiac disease.

We made a big move from Indiana to Tennessee in February 2011 for my husband's job and the stress of his over demanding job soon took it's toll.  In October 2011 my husband had random ankle swelling, one ankle worse than the other. By Thanksgiving his ankles became so swollen he could barely walk. We went to the ER and he was diagnosed with a possible tick bite or rheumatoid arthritis - they gave him an antibiotic in case of a tick bite and we left...

There was no improvement on the swelling, so Jeff visited his doctor who ran a couple of tests and put him on a small steroid dose. The steroids reduced the swelling significantly. He was then referred to a Rheumatologist and Orthopedic Surgeon. The Rheumatologist suggested possible gout or Sarcoidosis and the Orthopedic Surgeon suggested his feet where pretty messed up with the way God had made him!

To check to see if Sarcoidosis was a possibility, an xray was needed of Jeff's chest - with sarcoidosis, you have enlarged lymph nodes in the chest cavity.

Bunny Ears! My husband's little clone!
Well, Jeff's xray came back abnormal which lead to a MRI which then lead to a BIOPSY! Sarcoidosis and cancer mimic one another so a biopsy of the lymph nodes was needed.

After the biopsy and a 2 inch scar at the top of his chest just below his neck, Jeff was sent to a Pulmonologist who FINALLY diagnosed him with having Sarcoidosis.

Jeff was put on a steriod over a couple of months to shrink his lymph nodes. Basically the process was from October 2011 to June 2012 - from a possible tick bite to a biopsy.

Today, Jeff's Sarcoidosis is in remission. He may never have a flare up again.

NOW, this is where CELIAC DISEASE comes into play...  

My husband had a NEGATIVE celiac panel 4 years ago after Jack was diagnosed...which he truly was negative at the time.

Jeff began having more and more migraines, bloated stomach, fatigue and more visits to the bathroom. He wanted to see if he would feel better switching to a gluten-free diet. After 2 months of being gluten-free, I asked Jeff, "Do you feel a difference?" - My husband's response, "I think so..." Ok, I'll give him a little break...still a busy, busy man and just going along with work and raising 3 children...

So I said, "Jeff, I want you to go back to eating gluten and see if there's a difference and get tested for celiac disease. We need to know for sure. We need to take cross contamination seriously which you aren't doing now." So back to gluten he went. Within in a week, symptoms started coming back - migraines, more trips to the bathroom, etc.  Jeff said, "I can definitely tell a difference now."

I called to get him in to have a celiac panel done. The results came back in a few days with a POSITIVE EMA...unfortunately, they did not run a tTG-IgA antibody test which is a big indicator of celiac. So an appointment was made with a GI doctor and I mentioned this so they ran more blood work.  We found out yesterday that his tTG-IgA was POSITIVE as well.

We will not have an endoscopy done to confirm. In my opinion, I don't feel it is necessary and either does Dr. Alessio Fasano with the Center for Celiac Research at Massachusetts Hospital.

Dr. Fasano says you only need 4 out of the 5 factors to diagnosis celiac disease - here are the 5 factors:

With Jeff having 4 out of the 5 factors, and our son having celiac disease, an endoscopy is not needed to confirm diagnosis for us.

So what's next for Jack's Daddy?


We will go over a game plan this weekend - a list of foods he would like in the house, meals, lunch to take to work, etc. My husband's biggest challenge will be lunch. He eats out daily, so he will have to get creative and I'll help with left-overs and coming up with some other options. Let's be honest, he's going to be eating healthier too! Avoiding fast food at lunch, except for the occasional cheeseburger without the bun.

This is a blessing in disguise diagnosis...Jack now has someone very special to share his celiac/gluten-free journey with - his Daddy.

What I've learned/confirmed from my husband's celiac diagnosis:
  • You are your own ADVOCATE! What we heard from my husband's doctors - "You probably don't have it, you would have been diagnosed by now" and another saying, "Well, to me you have celiac disease with having the genes, it's just now clinical celiac." 
  • Just because you were negative at one time, doesn't mean it can't be positive later in life.
  • Celiac Disease doesn't discriminate - race, age, gender - if you have the genes, there's ALWAYS a possibility of it being triggered.
  • Family members should ALWAYS be tested.
Please share this post with others to encourage celiac disease testing, making sure an accurate celiac test is done and to raise awareness and ALWAYS follow your gut!


  1. Glad your husband has the diagnosis now and hope that going gluten free again will make him feel like a new man! So you all weren't tested when Jack was diagnosed? Since celiac is genetic, family members should always be tested to see if others have celiac. But it seems that it is rarely done. The standard thinking seems to be more like, we'll test if there are symptoms. However, most don't have symptoms (at least not ones they or their doctors are necessarily aware of as being associated with celiac). :-( You'll never know if your husband had celiac at that time--or I should say would have tested positive then, because testing is far from foolproof--but it could have saved him so many continued medical issues (that you've shared here) if he'd been diagnosed then and gone gluten free. We need to get more folks tested on a regular basis so we can get the diagnosis rate up.

    Thanks for sharing your family's story!

  2. We were all tested!! My husband's was negative at that time. I believe my husband was negative 4 yrs ago and his body when through quite a transition these past two years. Make sure to read my other post that I have linked to this! :)

  3. Hi Kelly! I'm so glad that you got to the bottom of all of this. As for the eating out daily --- if you made him a tupperware of last night's leftovers and threw in some fruit, would he eat it?
    We used to have problems with lunchtime stuff until I started forcing a made lunch on Adam.... and now the whole office eats together a homemade lunch! ;-)

    lots of hugs to you and your family. what an ordeal! I absolutely would have skipped the endoscopy, too. xoxo

  4. Thank you Stephanie! I'll definitely need some new slow cooker supper recipes! :)

  5. Hi there. I was diagnosed with Celiac Disease last year and we almost immediately had my children tested. My husband and I thought that our youngest son, who was 2 at the time, had problems with gluten so we thought for sure that Celiac Disease was the answer. We were completely wrong. My oldest son, who wasn't showing any symptoms, had active Celiac Disease (based on blood test only initially - biopsy came later). My youngest only has one of the genes for Celiac Disease. We plan on re-testing my youngest as he grows. Everyone in the family should get tested when someone is diagnosed with Celiac Disease!

    I know it sucks for your husband - as adults we've had a good portion of our lives to eat gluten and it feels overwhelming to suddenly have so many restrictions, e.g., your lunch dilemma. Thanks for sharing your story...

  6. This post was so informative - the path to diagnoses can be grueling. I hope your inspiring story helps others.

    Emine @ SprinJene