This is my amazing family who has been incredibly supportive on my gluten-free journey!
Here is my gluten-free story complete with my crazy diagnosis, adjustment period, sensitivity level, and additional information regarding the hereditary nature of celiac disease. Thank you for visiting my site, hopefully you will find helpful and healing information if you are recently diagnosed or if you are suffering from many of the symptoms or related conditions which can be affected by simply eating gluten.
Diagnosis
Early in 2011, I discovered that I had Celiac disease at the age of 33. I later learned that I’ve had the symptoms all my life but didn’t know they were related or what was causing them. I’ve had lots of doctors prescribe me lots of different medications to treat each symptom…separately, or they’d merely say “that’s just your normal.”
One morning I woke up early with what I thought was a bad stomach flu. My husband had gone to work, the kids were all at school and I stayed in bed. I continued to get violently sick and seemed to be running to the bathroom at increasing intervals. Only about an hour after my husband had left for work I noticed, in a daze, that the toilet was completely filled with blood. Not anything like I had ever seen before. I called him to come home and take me to the hospital. By the time he made it home and I made it to the hospital I was so weak I couldn’t walk. As they were checking me in I had to go to the bathroom again and this time I passed out. I was extremely close to having a blood transfusion but luckily we had gotten to the hospital just in time. Long story short, I ended up in ICU for almost a week, but they still didn’t know what was wrong with me.
After a couple of months, many blood tests and worthless prescriptions, we finally got a hint into the problem. One of my blood tests came back way out of the normal range. There is a screening test they can do for Celiac Disease, but keep in mind it is only a screening and not how they diagnose Celiac. The screening tests your TTG IgA. Normal range for TTG IgA is below 20, mine was 145! Once they received this outrageous number the GI doctor told me he didn’t even have to perform the endoscopy to know the outcome but he did anyway since this is the only way to officially diagnose Celiac. Also, it is worth mention, that if you are not currently eating foods containing gluten all the tests will come back negative.
Adjustment
Once I finally knew what had been making me sick my whole life I had to figure out how to stop eating it. Unfortunately my doctor was of no help, saying “you could probably eat just a little bit of soy sauce and be ok.” Yeah right! I was also referred to a nutritionist who sadly didn’t know anything about Celiac. As I sat in her office I felt completely helpless as I realized this lady who was supposed to be educated on nutrition knew nothing more than I did about being completely gluten free. She had a couple books on her shelf and she had a packet of information for the Celiac Disease Foundation, but every question I asked her she went directly to the internet to find the answer. I’m sorry, but I can do that and I haven’t had any additional training. It’s been a few years though since I was diagnosed, hopefully doctors and nutritionists are better educated on Celiac disease by now.
Feeling like I had lost a part of myself I stood one night in front of the kitchen sink trying to do dishes as I burst into an intense, shuddering sob. Now mind you this took me by surprise, I am normally a very happy person! I felt like I could never make cookies for my family again, or yummy, moist zucchini bread. At this point I had tried a few gluten free cookies and quick breads from the store or that other gluten free friends had made for me. Most of them were incredibly dry and crumbly and they tasted…gluten free, nothing like the moist cookies and breads I had made before.
I remember the lost and overwhelmed feelings I had at the beginning of my gluten free journey which is why I wanted to share everything that I have found and learned over the last decade with you. If you are just starting your switch to gluten free foods please remember that you don’t have to give up everything, you just have to find it again in your new gluten free realm.
Sensitivity
I am so sensitive to gluten that I cannot even touch it. When I was first diagnosed I didn’t know how serious my allergy was. I was still making two meals, one for me and one for the rest of my family. One day, about a month after my diagnosis, I made regular bread for my family and when my husband came home he exclaimed “what happened to you!” My face was all red and bumpy…as it had been so much in the past, but after being gluten free for even a short while it had cleared up. Apparently I couldn’t make bread anymore.
At that point my friends had a “Gluten Party” for me where they all brought a gluten free item for my pantry and in return I gave away all my food that contained gluten. Now mind you, I grew up in a rural town in Hawaii so when we went to the store we would stock up. That has stuck with me into adulthood so I had enough food in my pantry to feed my family for probably a year if we were careful! There was a lot of food to clear out!
Over the course of yet another year we figured out that I couldn’t even walk on it. My sister-in-law’s house still had goldfish crumbs all over the floor (as did mine before we got rid of all the gluten in the house) and after taking my shoes off, being in their house, but not eating anything, I would still get sick. So eventually I tried leaving my shoes on, or bringing a house pair, I still didn’t eat anything, and low and behold…I didn’t get sick! We tested it several more times after that, sometimes I’d leave my shoes on, other times I’d take them off. I got sick every time I didn’t wear my shoes! That’s when I fully realized I couldn’t even touch it!
Hereditary
As you may or may not realize, celiac disease is hereditary. After I was diagnosed it took us another year to finally realize that 2 of my 3 kids were also affected by gluten. The first to be taken off of it was my youngest who was in preschool at the time. We were camping with cousins about 6 months after my diagnosis and I realized that he was unusually sick the entire time we were camping! I finally realized at the end of the 4 day trip that he was eating all of their snack food and thus getting sick. As soon as we took him off gluten he stopped getting sick and felt so much better.
My oldest son, who was in 3rd grade at the time, continued eating gluten for almost another 6 months. I finally realized that he was getting sick and wasn’t telling me. I told him he needed to stop eating gluten, which he did at home, but he would cheat at school when other kids brought in birthday treats. After a couple months of being mostly gluten free, he realized that every time he cheated he would feel awful and get sick. He made the decision to go completely gluten free and has never turned back! Through the remainder of his elementary school years when kids brought in treats he would tell me when he got home and would be given an equivalent gluten free treat. My youngest just had a package of Mi-Del “oreos” stored with his teacher which she gave to him as a substitute.
My daughter seems to be fine so far. She loves to go to her cousin’s and friends’ houses to load up on gluten. She may be fine right now but she is aware that at any point in her life it could be triggered. Someone can have celiac and it can either be in remission or just not yet triggered. When looking back on my life I had all the symptoms as a child but in my teen years I seemed to get better. I was able to eat pizza and other things without getting a horrible tummy ache. It is actually quite common for celiac to go into remission during the teen years. After my third child was born I was noticeably sick with most of the common symptoms of gluten intolerance, although I didn’t recognize it at the time, it sort of snuck up on me until it got really bad. We later realized it was likely his birth that triggered my celiac out of remission.
You should know that I did have all my kids take the blood test screening and they all came back negative, well within the normal range. It is only through trial and error that we discovered they too have an allergy. Their tests probably came back negative because I didn’t have any glutenous food to give them before their tests. Also, like I mentioned earlier, the only true way to diagnose celiac is with an endoscopy which they don’t like to perform on kids. Since I know I have an allergy and I know it is hereditary we decided it wasn’t worth making them eat gluten and get sick just to have a positive test result.
UPDATE: Since originally posting this my sister has discovered that she too cannot eat gluten. She has not been officially diagnosed but doesn’t really see the point. She knows it is hereditary and feels better without it. On the other side of the family my husband’s cousin was officially diagnosed as well. Her major symptoms were not gut related but centered more on depression, anxiety and skin issues. Please look at the symptoms page and see how many health issues you may have that just might clear up if you adopt a strict gluten-free diet. It’s better than taking pills or developing other serious health conditions.
