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Officially diagnosed today

jennlove
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jennlove Rookie
jennlove
Posted

Hello!  I wanted to introduce myself and tell my journey to diagnosis to people who would understand.  My name is Jennifer and today, my doctor called to tell me my endoscopy biopsy confirmed celiac disease.  Today was also my first gluten free day.  My sister and I have combed through every gluten free section of every grocery in town lol. 
 

So about ten years ago, I went to the ER with terrible pain in my upper right abdomen.  I’ve been referring to it as my mystery side pain ever since.  I had a CT scan and I remember the ER doctor saying, your white blood cells are up so you have something but we don’t know what.  I had a gallbladder scan, bloodwork, more imaging.  Nothing.  The doctors just kinda went ¯\_(ツ)_/¯.  Every so often I’d again ask about the pain but was just giving acid reflux medicine.  I should mention I’m fat and I think I was diagnosed as “fat probs.”  
 

Earlier this year I had a terrible episode of side pain and diarrhea except this time it progressed to nausea too.  I almost threw up so I thought, ugh let’s try this again.  My PCP, who had not been confronted with this yet so she hadn’t dismissed me yet, sent me to a gastro doc she knew in medical school.  First visit, he redoes my gallbladder scan since it had been 6 years ago.  He does bloodwork.  Second visit, nothing shows up but he <hears> me say I get sick when I eat.  He <heard> me and immediately suggested a celiac antibodies blood test as well as some other tests.  
 

I really didn’t expect the test to come back positive.  I thought it was…I don’t know.  Maybe I was crazy and would never have any answer for this pain.  
 
But my antibodies came back 34.85 on a 0-4.99 is normal scale.  He called me himself at 7:45PM to tell me about the results.  He ordered an urgent endoscopy which I had 3 days later.  This guy is my superhero.  He also said when I got to the hospital that he was going to “see if my gut looks like an ice skating rink” lmao.

Apparently it did.  The results confirmed the bloodwork and now I have a new normal.  But I also have an answer and hope of relief.  I feel like that episode of the Golden Girls where Dorothy finds out she has chronic fatigue symptoms after her doctors kept dismissing her.  I don’t want a disease but at least I have understanding now and a way to begin healing.  
 

The timing is great by the way.  Vacation out of state next week hah.  I’m taking a load of gluten-free snacks and reading up on local restaurants.   My sister has been a rockstar.  I live with her and she cooks most of our food.  She’s thrown out everything gluten and is going to replace all the wooden cookware.  Tonight she made gluten-free cornbread for us.  I’d be lost without her help.  
 

Anyway I guess I wanted to record how I feel and share it with others who have the condition.  Here’s to healing!  

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trents Grand Master
trents
Posted

Welcome to the forum, @jennlove! The sense of relief you are experiencing is palpable in your narrative. I just want to make you aware that there is somewhere between a 10% and almost a 50% chance that your first degree relatives have or will develop active celiac disease. First degree relatives are defined as parents, siblings and offspring. Older studies pegged the likelihood at about 10% but a couple of newer and larger studies (one by the Mayo Clinic) found the likelihood to be well over 40% when they actually tested the first degree relatives of those having been diagnosed with celiac disease by biopsy. Many of most of them were very much caught by surprise because they were no experiencing classic symptoms. We now know that many celiacs are the "silent" type. That is, they are largely asymptomatic for years until the damage to the villous lining of the small bowel becomes severe. So, you might want to encourage your first degree relatives to at least get the blood antibody testing done.

jennlove Rookie
jennlove
Posted
  • Author
8 hours ago, trents said:

Welcome to the forum, @jennlove! The sense of relief you are experiencing is palpable in your narrative. I just want to make you aware that there is somewhere between a 10% and almost a 50% chance that your first degree relatives have or will develop active celiac disease. First degree relatives are defined as parents, siblings and offspring. Older studies pegged the likelihood at about 10% but a couple of newer and larger studies (one by the Mayo Clinic) found the likelihood to be well over 40% when they actually tested the first degree relatives of those having been diagnosed with celiac disease by biopsy. Many of most of them were very much caught by surprise because they were no experiencing classic symptoms. We now know that many celiacs are the "silent" type. That is, they are largely asymptomatic for years until the damage to the villous lining of the small bowel becomes severe. So, you might want to encourage your first degree relatives to at least get the blood antibody testing done.

Don’t get me wrong, I’m also blown away by hard much change I need to make lol.  But yes I’m relieved it’s something and I’m not crazy!  Thanks for the tip, we had read the same thing here and there so my sister is getting the blood test today.  I’ll work on my other relatives to encourage them to get tested too!

trents Grand Master
trents
Posted

 

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