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Sarah's Story


Sarah's Story

I began to have noticeable symptoms when I was in college. I lived in the dorms on campus & I was having fun, but I was so tired all the time. I would just go back to my room and sleep any chance I got. I would sleep 12-14 hours straight if I wasn't woken up. I saw the doctor about it and I was told it was stress and depression, and that it would pass. I was getting married that summer and I was taking a heavy class load and working, so I thought that sounded reasonable, so I let it be. That fall, after the wedding, I took a really light class load and generally took it easy. However, I was still exhausted. About this time I started having pain in my joints. I saw the doctor again and again they told me it was depression and that sometimes depression can cause achiness. However, at that time, I didn't feel depressed, so it didn't make sense to me that I had depression. My doctor ran a few blood tests, and just referred me to a therapist.

That spring I began having pain in my stomach. It felt like hunger pains, but they didn't go away when I ate. The only thing that made it feel better was ice cream, so I ate a lot of it. I saw the doctor again, and she gave me antacids and told me to take them for a month and then come back. The antacids only made it worse. She switched my antacid and it still didn't work, so she sent me to a gastroenterologist (GI doc). The GI doc switched my antacid again. The stomach pain kept getting worse and I began having problems with diarrhea/constipation (alternating), and nausea. The GI doc did a bunch of tests: I had an endoscopy, a barium swallow, a CT scan, and numerous blood tests, all of which showed nothing. He did a HIDA scan of my gall bladder, which showed that my gall bladder wasn't working properly (it was slow). I didn't have gall stones, but the doctor thought that maybe taking my gall bladder out would solve the issue. By this time I was getting to the point where I could barely go to school or work. I was sick all the time and I was incredibly exhausted. So, I had the surgery.

After the surgery pain subsided, I still had the stomach pain, the diarrhea/constipation, and I started vomiting when I ate. Not every time, but occasionally. It felt just like morning sickness did when I was pregnant, except that my joints ached, my stomach hurt and I had diarrhea/constipation. I just never felt good. I talked to the GI doc, who said that my stomach pains were phantom pains and that my body just didn't realize that the gall bladder was gone and to give it more time. He said that the rest could be depression. That was plausible, because by this time I was depressed for real. I gave it two months before I went in again. At that point I was starting to lose weight. By the time I got diagnosed, I had lost 35 lbs (and I was not overweight to begin with). Thirty of those pounds were lost in a 2 month period.

The GI doc started doing tests again, but nothing showed up. Finally, he said he'd do a test for a "rare disease" called Celiac Sprue. I researched it, and after poking around on the internet, I was sure that I had it. The blood test was positive, so I went in for my 3rd endoscopy to get biopsied. The biopsy was negative. I was really upset, because I was sure that was it, and I just wanted to know what was wrong -it's scary not knowing. The doctor started doing more tests. He found that I had developed gastroparesis, which is when your stomach doesn't empty properly. Usually it's caused by Diabetes (which I don't have, but many Celiacs do), but it can also be caused by Thyroid Disease or by damage to the nerves in your GI tract. He tested me for Thyroid Disease, which was positive, and prescribed meds for that. I also began having problems with numbness and pins and needles feelings in my hands and feet. He found a vitamin B12 deficiency that had caused Peripheral Neuropathy (nerve damage). However, after treating me for all three of those things, I still wasn't improving as much as he expected.

Now my GI doc thought it was weird that I had a negative biopsy with a positive blood test, so he called a colleague of his who specialized in diagnosing Celiac. He found out that he hadn't done the biopsy correctly. So, I went in again for my 4th endoscopy and he tried one more time, this time taking multiple samples in the right place. And, lo and behold, the biopsy was positive!

I was not crazy, I was not dying, and I was not making it up. I had Celiac Disease. I went on the gluten free diet and improved right away. I wasn't back to "normal" for about a year and a half, but I improved after only a few weeks on the diet. I had regular B-12 injections for almost a year, but I don't need them anymore. I also had several other vitamin deficiencies that I no longer have. I was also diagnosed with allergies to other foods. As I have healed, most of my food allergies have gone away. I still can't handle casein (dairy), though. I still take thyroid hormones and probably always will.

My GI doctor couldn't believe I was diagnosed with all of that all at once. But that's what Celiac Disease does - it just messes up your whole system. He apologized for not taking me seriously right away. My whole ordeal took 2 years from the time I first went to the doctor for fatigue until I was diagnosed. That's relatively quick compared to others out there. But it still shouldn't have taken that long. Doctors need to know that Celiac Disease is not a rare condition, so that people don't suffer needlessly.

Does this story sound similar to your or a family members? You might have celiac disease. Find out now, take our celiac disease symptoms checklist.

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