My “stomach troubles” started when I was a little girl. I have so many memories of horrible stomach pain and boughts of diarrhea. My issues seemed to get worse the older I got and I was told I had Irritable Bowel Syndrome (IBS). Throughout high school and college I would have extreme swings in symptoms, calling it all IBS and attributing it to stress and the busy lifestyle of a student. This pattern continued into my marriage and even after having my children. I was on different prescriptions for acid reducers and tried to be careful of what I ate, trying not to trigger the symptoms. It was in recent years that I started having extreme pain on my upper left side and my symptoms seemed worse. I was miserable. Always having some sort of discomfort whether it be nausea, diarrhea or constipation. On top of the stomach and intestinal problems, I was having a lot of skin irritations. Rashes and flaky skin on my hands, face and various spots on my body. I was also having major mood swings and boughts of depression. Headaches were another big issue for me. I had been to many doctors, had various tests and multiple rounds of blood tests. On paper, I was a very healthy person – but I felt HORRIBLE.
It was a Sunday morning and I woke up feeling pretty good! Better than I had in days or weeks. I grabbed a quick whole wheat bagel for breakfast before church and before it was time to leave, I felt completely awful again. Something clicked and I told my husband that I was going to go off wheat/gluten and see what would happen. By Tuesday, I felt like a new person! I had an immediate response of eliminating gluten from my diet and had a week of feeling the best I had in months. I was totally surprised and quite overwhelmed. My mind started spinning of all the foods I wouldn’t be able to eat and HOW WAS I GOING TO DO THIS LONGTERM? AH!
I made an appointment with my Doctor to see about having the celiac bloodwork panel done. Of course, I had to go back on gluten for at least a few weeks before I could have the test. I was dreading it. The only positive I saw was that it was Thanksgiving week and if there was a week to have no dietary restrictions, this was it! So, back on gluten I went. I finally went in for the screening, going back off gluten that very day after my blood was drawn. My doctor had explained that the bloodwork was just a first step, a step that can come back with unconclusive results, and that the true test for Celiac was the upper endoscopy with biopsy. So, when my labwork came back and the Celiac panel was normal, I wasn’t surprised. I did have a Vitamin D deficiency, which can be a result of Celiac. My Doctor referred me to a GI Doctor to discuss the upper endoscopy. I decided at that point that the test was going to cost more than I wanted to spend and that I was at peace with just sticking with a gluten free diet. I’d consider the test down the road if it seemed necessary.
I have been completely gluten free since January of 2011. Since that time, I have seen a GI doctor (different than my first referral) and have reviewed my many lab results and discussing in depth my symptoms. Since I started experimenting with a gluten free diet, my Uncle (my Mother’s brother) has been diagnosed with Non-hodgkins lymphoma, which began in his stomach. My Grandmother (my Mother’s Mom) died from this disease and had years of “stomach troubles” without ever being tested for Celiac or wheat sensitivites. They didn’t do that 25+ years ago! The pattern of cancer in my immediate bloodline has raised flags to her. Also to my surprise, she noticed a pattern of elevated liver levels and explained that can also be a sign of Celiac. Your liver can function incorrectly because of the strain that gluten puts on your body. We reran bloodwork since I had been living gluten free for months and surprise – my liver levels are completely back to normal. It seems that being gluten free is doing by body good! My GI Doctor would like to see me have the biopsy’s done so we can have a concrete diagnosis. I do see the benefit of knowing for sure if I do in fact have Celiac. It’s quite a difference to just get a stomachache from something and to have an auto-immune disease that requires a complete lifestyle change. I also feel it’s important to know for my children’s sake.
So, at this time, I believe that I do have Celiac disease, it is just unconfirmed by the biopsies. I am leaning towards having the test and just need to decide when I can afford to be back on gluten and possibly feeling awful for a minimum of 3 weeks. If it can work out, I hope to do all of this sometime this summer.
Are any of you on a similar journey? I’d love to hear from you! Are you considering having the biopsies done? Be in touch!