The Journey to My Celiac Diagnosis

Hi everyone! I hope you’re having a great week so far. I got my official biopsy results and diagnosis today, so I figured I would sit down and write a blog post about my journey.

For about 2 years now, I’ve been experiencing a lot of new health problems, from migraines and alternating constipation and diarrhea to even these weird bumps on my upper arms. Now I cannot prove that all of these things were caused by Celiac Disease, but it is definitely possible that they are. I’m really just going to focus on the GI symptoms that I’ve seen over the past few years.

I’ve experienced a lot of bloating, diarrhea, constipation, nausea, gas, and severe abdominal cramps and pains. Along with that, if I had a really fatty meal, my stool would turn a yellowish color. Honestly, I’ve been so busy that I wasn’t concerned with getting it checked out because I self-diagnosed it as alternating IBS. However, it appears that ignoring the problem for 2 years did way more damage than it did good (duh!).

Honestly though, I was never really able to find a trigger food. At least not that I could tell. Part of that is probably because gluten was in almost every meal that I consumed. Finally, I decided that I had enough and decided to make an appointment with a gastroenterologist.

Flash forward to early December, I met virtually with a gastroenterology PA, who recommended that I get a celiac panel and an inflammatory marker panel drawn from my blood and return a stool sample for testing.

The celiac panel (IgA and Tissue Transglutaminase IgA) was positive and so was the inflammatory marker panel (CRP and ESR). That was the first clue that I had something inflammatory going on and that specifically, it had something to do with gluten.

Moving on to my stool sample, they were measuring inflammation in my bowels by looking at the calprotectin level in the stool. This level for me was slightly elevated (upper limit of normal), but not concerning to my provider. Therefore, I likely do not have inflammatory bowel disease (IBD). We decided to then move forward with an upper endoscopy to confirm suspicions of Celiac Disease.

Prepping for that procedure was pretty painless. Luckily, I was able to get in to have that procedure done about a week after I found out the results of my bloodwork. So on December 17th, I went in to the gastroenterology clinic to have my procedure.

Of course, I had to go in 3 days ahead of time to get a pre-procedure COVID test, which was negative. I was instructed to continue to eat gluten in my diet from the time of positive celiac panel results to the time of the endoscopy. This was to make sure that everything was inflamed and that it was pretty clear whether or not I had Celiac Disease.

I got there an hour before the scheduled surgery time, and I had to go through the pre-operation paperwork and prepare my IV for analgesia drug delivery. The endoscopy was pretty quick and painless. It lasted ~15 minutes and the only pain I really had afterwards was a minor sore throat and bruising at the site of IV insertion. They looked around the first part of my small intestines and took 4-6 samples to biopsy. Anywho, the surgeon told us after the procedure (in the hour of post-surgical waiting) that my small intestines (specifically the duodenum) were very inflamed and had damage consistent with Celiac Disease, but that I would get the biopsy results in 10-14 days to confirm.

The surgeon recommended that I go ahead and start eating Gluten-Free because even if I don’t have Celiac Disease, I have a gluten sensitivity or intolerance.

Six days after the surgery, I got the results of my biopsies and they confirmed that I do in fact have Celiac Disease and must adhere to a 100% Gluten-Free diet. Luckily, I had already been living the Gluten-Free lifestyle for almost a week at this point.

Now that I’m a diagnosed Celiac, I can start my new journey to becoming healthier and get to feeling better.

I just want to say how thankful I’ve been for all of the support I’ve had in just the past week. I know I’ll continue to receive support, and I’ll be here to help anyone else that is trying to go Gluten-Free.

Even though I would rather not have this diagnosis, I’m planning to use it as a tool to help others who need someone to talk to.

Stay Golden,

Emily