In my last blog post, I believe I mentioned a random diagnosis of Celiac disease. Hang tight, this tale is a long and winding road!
This all began last February, when I hurt the top of my foot and didn’t know how it happened.
Tests and Treatments
After a couple of weeks of limping around, I finally went to the doctor, who did an x-ray. There was nothing on the x-ray that indicated why the top of my foot was hurting, but it did show that my fifth metatarsal had been broken and was almost healed. I thought that was odd, since I had no pain at all in that area. I didn’t recall anything happening to my foot that would cause a bone to break, so the doctor insisted on a DEXA scan.
For those unfamiliar with that procedure, it’s a bone density test. I have had them before and was told years ago I have osteopenia, which is the predecessor of Osteoporosis. One thing to note about these scans – you are supposed to always have the scan at the same facility because every machine reads differently. The only way health professionals can tell if the bone density has changed is by measuring it on the same machine as there is apparently no way to perform a universal calibration/baseline across all machines. My baseline scan and next scans took place on a machine in AZ. No changes. Now, on a different machine in NY, I am diagnosed with osteoporosis – but just in one hip.
My doctor immediately prescribed Fosamax – which is a terrible drug! She also referred me to an endocrinologist because I am too young to have osteoporosis. I took the Fosamax for 9 weeks while waiting to see the endocrinologist. I was miserable the entire time I took the medicine. I stopped taking it because it made me so sick.
I finally got in to see the endocrinologist, who ordered blood tests, told me Fosamax was not the right medicine for me, and prescribed a one-time infusion of some other osteoporosis drug. I agreed to the infusion after some research. Ya’ll – none of these osteoporosis medications are good. From all the research out there, weight training and extra calcium are your best bet for rebuilding healthy bone mass.
I didn’t have any side effects from the infusion and finally felt normal again. I was doing weight training several times a week and feeling like my typical energetic self.
Then, the endocrinologist called and said my blood tests came back with two Celiac markers. Wait- what? Celiac? How is that possible? I don’t have, and have never had, ANY Celiac symptoms!
Wait. Celiac?
According to the Celiac Disease Foundation, these are the most common symptoms for adults: abdominal pain, chronic bloating and gas, cognitive impairment, chronic constipation or diarrhea, depression and anxiety, fatigue, headaches or migraines, iron-deficiency anemia, itchy, blistery skin rash (dermatitis herpetiformis), joint pain, missed periods, mouth ulcers and canker sores, nausea and vomiting, osteoporosis and osteomalacia, peripheral neuropathy, reduced functioning of the spleen, and weight loss.
The only symptom I have is osteoporosis. Regardless of having no other symptoms, I was referred to a gastroenterologist. While waiting two months to get in to see the gastro doc, I drastically reduced my gluten intake. I didn’t eat any wheat, barley, or rye, and only chose gluten-free items from menus. For the first few weeks, the new diet really messed up my gut, but then it leveled out a bit. The only upside was I lost some weight.
When I went to see the gastro, she wanted me to have an endoscopy. I declined the test, because at this point, after my experimentation with gluten-free options, I still don’t believe I have Celiac. She suggested I have a simple blood test to see if I have the Celiac gene. She said if I don’t have the gene, I can’t possibly have Celiac. Okay, I agreed, thinking I was going to lay this nonsense to rest.
I had the blood test, and while waiting for the results (it took about 6 weeks) I resumed my normal diet, with the exception of limiting wheat. I felt amazing! Full of energy, mentally sharp, sleeping well, good skin, all the things that made me feel healthy. My Mom came to visit, everything was good.
Finally in November I got the results of the blood test. Dammit – I have the gene. So short of the endoscopy, I have a positive Celiac diagnosis.
So, in early December, I cut all gluten out of my diet. I mean everything. I even made my own bread. And gawd, gluten free bread is not at all satisfying. It falls apart so badly that you might as well not even bother.
And then, after 2 weeks of being completely gluten-free, my gut rebelled. And after 2 months, it is still rebelling. I feel like crap all the time. I am exhausted. I can’t manage to lift weights for more than 10 minutes at a time. I am not sleeping. My skin is dull and dry. I itch. I have lost 20 pounds. Some days I have to cancel plans so I can stay close to a bathroom. I have never felt worse in my entire life! Basically, since cutting out all gluten I now have almost EVERY symptom of Celiac. How is this even possible?
I see the gastro again at the end of this month ( that was the first available apt.). I’m not sure what good it will do, but I will see what they have to say. My very unhappy gut is still telling me that I do not have Celiac. But whatever, I just want to feel human again.
Thanks for letting me vent!