It is May now (where does the time go?) which is also Celiac Awareness Month! A good friend and avid reader of the blog suggested that I do a case study about her medical history and ultimate diagnosis of celiac disease. Celiac disease in adults can present as a myriad of symptoms and is often not diagnosed, or is misdiagnosed as anemia or chronic fatigue syndrome. The subject is an active female, born in 1975, living 5400 feet above sea level. Her answers are unedited, but I did add in some occasional linking to help explain things, two of which are affiliate links. I highly recommend you read the celiac article before reading this one.
Q: Briefly describe your symptoms leading up to the discovery of celiac disease diagnosis.
Most of my symptoms are inflammation related and started a long time ago.
- Acne – bad as a teenager, but never got better. Still doing treatments (like accutane and acupuncture) in my 30’s.
- Gum disease – first told my gums were in pretty bad shape when I was 28. Did a hard core scaling treatment, was very careful with my brushing and flossing and even coming in to the dentist 4 times a year, my gums never were great.
- Heart Palpitations – started mid-twenties. Noticed my heart seem to stutter. Eventually wore a 24-hour Holter monitor and was told I had premature ventricular contractions and that it was not something I needed to worry about.
- Exercise induced asthma and hayfever – just general autoimmune symptoms
- Iron – the big one. I was first told I was anemic in my first pregnancy–when I was 26. Very common, took an iron supplement. Later, I started training for triathlons. I was frustrated that I was working really hard, but seemed to be getting tired, not stronger. I had my blood tested and my ferritin level was 12. This is tricky, because the healthy range for women is 12-100. But it is commonly accepted that for a female athlete at altitude, 50-80 is the ideal range. So when I was 34, a sports medicine doctor gave me iron intravenously. No one thought much of my iron being low, and I am a menstruating women who had 2 kids. There’s also some research that women runners lose iron through broken capillaries in their feet and gut. The sports medicine doctor did not think to check anything. I had this procedure done in 2009, and again in 2013. In 2013, a doctor should have definitely questioned why I was not retaining iron.
Here’s the kicker – in 2014 I was starting to feel like my iron was off. At my physical I asked my doctor to check my ferritin again (this is actually not something in the regular CBC panel and at least at my office I need to request it). The test results came back, “Your ferritin levels are normal.” The results I was sent did not have a number on it. Only this year (2017) did I find out my levels were 17. That means that in 2 years I dropped from 54 to 17. Something is not right!!!!
In October 2016 I had another physical and again thought my iron must be low. I was feeling tired a lot, my training didn’t seem to be improving, and my heart palpitations were getting worse. This time, my hematocrit was actually flagged as low in my CBC–meaning I was actually anemic, and my ferritin was 15. I went back to the sports medicine office to inquire about another infusion. The doctor that had given me my first two had left the practice, so I saw another doctor. She was the first one to ask, “Has anyone ever figured out why you aren’t absorbing iron?” So before she recommended an infusion, she ordered more blood work, including a celiac panel “just to rule that out.” I was completely flabbergasted when the test came back positive. And then, since we knew why my iron is low, I got another infusion and felt better almost immediately. Having low iron is weird–it creeps up on you very slowly and you forget what normal felt like. But once you get iron in your system you feel better very fast.
The symptom I did not have was GI (gastrointestinal) issues (though once I stopped eating gluten, I could see that I had been gassy/bloated at the end of the day). Well, that’s not exactly true. Starting at age 18, I started getting very bad stomach aches when I ate broccoli. Then bananas. Then avocados. I just learned to avoid those foods, but gluten did not give my stomach aches. I’m still not sure what about these foods disagrees with me, but I do think it’s related to gut damage.
Q: When were you finally diagnosed?
My first blood test came back positive at the beginning of December 2016. I immediately asked my regular primary care physician to do another blood test, I was really hoping for a lab error. When that came back positive, I had an endoscopy, which did show significant intestinal damage due to celiac.
Q: Do you think a stressful event triggered your disease? If so, can you pinpoint the event?
I don’t. I’m pretty sure I have the gene pairing that 98% of celiacs do (I didn’t have the test done, but my son did and he has them). There can be 3 triggers–emotional/stress, illness/viral infection, or something environmental like mold exposure. I’m guessing I started having symptoms in my early teens and was probably triggered by illness.
Q: I imagine you have had to drastically alter your diet and cooking. Do you miss anything in particular or have you discovered any new and exciting foods?
The first drastic thing I had to do was read EVERY SINGLE LABEL. Gluten is in some weird stuff, like some mustards. And regular oats are not gluten free because they are grown in fields that are crop rotated with wheat. I also avoid anything that is produced on the same machines as wheat, which is more than you would think. Especially things like nuts seem to have a high chance of cross contamination, so I order nuts online now. I just removed gluten from my diet for 2 months, and I could eat just about anything as long as it was made with gluten free substitutes.
Then in February 2017 I started working with a Integrative Medicine doctor. He recommended that I try an AIP (auto-immune protocol) diet. The theory is that you remove all common allergens out of your diet for 3 weeks, then add them back in in a systematic way to see if you have any reactions. I didn’t do the full diet, but I did remove alcohol, caffeine, sugar, dairy, all grains, legumes, nightshades, corn, and soy. This diet made plain old gluten-free seem like a piece of gluten free cake. I’m still adding food back in. When I added black beans back, I found out that they make me really gassy, but if I soak canned beans over night with some apple cider vinegar and salt, I can eat them. I’m still trying to figure out how I do with nightshades (tomatoes, potatoes, and peppers). They seem to really affect my sleep, but I’m taking them out and then adding them back in to make sure it’s not something else like hormones. The Integrative Medicine doctor also ran some more blood work and found that I am cross-reactive to dairy and buckwheat. There are compounds in those food that are close enough to gluten that my body produces antibodies to them even though it’s not gluten. I’ll be off dairy for at least 6 months to give my system a chance to heal, then I can see if I can eat it again.
So now I have cooked almost everything I’ve eaten for the last 75 days from scratch. There is no more spontaneity. I have to plan every meal, and if I’m leaving the house for more than 2 hours I have to pack food. There’s not anything I miss too much other than more variety and I have found lots of new and exciting foods. I didn’t eat much sweet potatoes before and now I eat them every day. I figured out kale chips are super easy to make and way cheaper than those snack packs you can buy at Starbucks. I’m ok without coffee, I drink decaf tea now. And I’ll get back to alcohol at some point. Right now the concern is that it’s high in sugar and I’m trying to make it as easy as possible for my gut to heal. My food world will drastically improve if I figure out whether or not I can include tomatoes and peppers.
Q: Looking back, how long do you think celiac disease was affecting your daily life before you got diagnosed?
I was suffering from borderline malnutrition. In addition to low iron, my D and B vitamins were also low. Just missing basic nutrients was making me not feel great. And my constant inflammation was certainly not healthy and is linked to heart disease and cancer. I wasn’t nearly as sick as some celiacs get before a diagnosis, but it’s not like things were going to get any better on their own either.
Q: What is the strangest thing you have had to avoid due to gluten content? Medicines, beer, toothpaste, whatever…
I do double check the internet before I take any medication. Regular advil is ok but the liquigels are not. I did check my toothpaste and it’s fine (Tom’s of Maine (affiliate)). I changed my shampoo and threw away some hair product. It’s not like I’d react through skin contact (some people do) but rather I didn’t want to worry about if I had touched my hair and then washed my hands. Of course 99% of beer is out, but there are some craft breweries than brew with millet and sorghum to create gluten free beers. I have to be careful with mixed drinks because sometimes they have malt flavoring. I usually stick with things like vodka and cranberry, just 2 ingredients. I got rid of some of my kitchen accessories that I wasn’t sure could be completely cleaned, plastic things and wooden spoons. My house is mostly gluten free, we don’t cook anything with gluten because the risk of getting it all over the kitchen is too great. But things like pizza and donuts for the family come in occasionally. The weirdest thing is not kissing my husband after he’s eaten gluten.
Q: Do you have any products, resources, or treatments that you have found particularly helpful to fellow sufferers of celiac disease?
The first website I found, glutendude.com was extremely helpful.
Jennifer’s Way by Jennifer Esposito (affiliate)
Q: Had you experimented with gluten free diets before diagnosis?
Actually, yes. When my oldest was a baby, he was extremely colicky. His pediatrician thought that maybe he had celiac and it was easier for me (breastfeeding) to go gluten free than to do an endoscopy on him. I was gluten free for about 4 months and didn’t notice a change in myself or him. I wasn’t nearly as careful as I am now, and was eating things like oatmeal so it’s possible I wasn’t gluten free enough to see a difference.
Q: How long did it take for you to feel more normal after beginning gluten free diet?
Again, I didn’t feel terrible before. Within the first week I noticed I wasn’t bloated in the evenings. My acne flared up a little. I recently had a month free of acne, but as I added more food back in my diet it came back. It’s going to take some time to let the inflammation cool down.
Q: Does anyone else in your family have celiac disease?
Both my parents got tested after I found out and both are negative. I had one of my sons tested–he has the genes but is not showing antibodies. This is something he’ll have to always monitor. Like you said earlier, it does take a trigger to start the autoimmune response. I’ll have my other son tested at his next physical.
Q: Do you have any particular advice you want to pass along to someone that might have been in your shoes decoding your medical mystery?
I guess keep listening to your gut (ha ha). If you feel like something is off, keep asking questions. The hard thing for me was I would never have suspected celiac either.
Q: Anything else?
One of the hardest things about having celiac is people not understanding that I’m not overreacting when I’m so careful about my food. It takes a very tiny amount of gluten (one crumb is enough) to start the autoimmune reaction and antibody production, and when that happens it can last up to 6 months, even if there’s not another gluten exposure. And it’s the autoimmune reaction that destroyed the villi in my small intestine. So no, it’s not like I’ll just have a little stomach ache and then be fine.
The other take away that I really want people to know is that doctors, at least my doctors, didn’t think to test for celiac because I didn’t have stomach issues.
Fascinating–I had no idea that one crumb (or kissing your husband) can set you back six months! Thanks so much for sharing!
Do you have an interesting case study that could be helpful to other readers? Email me at [email protected]
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