Possible False Negative Test?

[cassthedancer]

Hi! I was tested for Celiac about a year ago, and got a negative result. Before that, I had been in and out of the doctor's office for a couple other different things. I had been having stomach pain for a while, and was tested for appendicitis. During the required blood tests, the doctor found that I was very, very anemic. Also, it turned out that the stomach pain was being caused by various ovarian cysts. I was put on iron supplements for the anemia and birth control pills to control the cysts. However, I was still having stomach pain, and my hemoglobin and ferratin levels weren't returning to normal. My doctor tested for celiac disease after about six months of this. The test came back negative.

Now, a year later, I am still on high-dosage iron pills and birth control. The doctor says that the anemia is from my heavy periods, but if that was the case, I would think that my lighter periods (due to the birth control) would help my anemia. I believe that the pill is helping the ovarian cyst pain, but I still have random stomach pains. I'm always tired, and I sometimes feel like I'm going to throw up. There are some days when I just can't eat. Another thing that makes me think celiac is a possibility is that five members of my family have autoimmune diseases. (Crohns, ITP, rheumatoid arthritis, autoimmune hepititis, psoratic arthritis.)

So, I'm basically asking if I should be retested. I have to get my blood drawn anyways thanks to the anemia, and with the relatively high false negative rate, I was wondering if it was even possible that I got a false-negative test result.

Sorry for such a huge post... it's been an interesting year and a half. :/ Thank you for reading!

[Marilyn R]

Hi! I was tested for Celiac about a year ago, and got a negative result. Before that, I had been in and out of the doctor's office for a couple other different things. I had been having stomach pain for a while, and was tested for appendicitis. During the required blood tests, the doctor found that I was very, very anemic. Also, it turned out that the stomach pain was being caused by various ovarian cysts. I was put on iron supplements for the anemia and birth control pills to control the cysts. However, I was still having stomach pain, and my hemoglobin and ferratin levels weren't returning to normal. My doctor tested for celiac disease after about six months of this. The test came back negative.

Now, a year later, I am still on high-dosage iron pills and birth control. The doctor says that the anemia is from my heavy periods, but if that was the case, I would think that my lighter periods (due to the birth control) would help my anemia. I believe that the pill is helping the ovarian cyst pain, but I still have random stomach pains. I'm always tired, and I sometimes feel like I'm going to throw up. There are some days when I just can't eat. Another thing that makes me think celiac is a possibility is that five members of my family have autoimmune diseases. (Crohns, ITP, rheumatoid arthritis, autoimmune hepititis, psoratic arthritis.)

So, I'm basically asking if I should be retested. I have to get my blood drawn anyways thanks to the anemia, and with the relatively high false negative rate, I was wondering if it was even possible that I got a false-negative test result.

Sorry for such a huge post... it's been an interesting year and a half. :/ Thank you for reading!

Hi cassthedancer and welcome!

You have quite a few indicators of celiac disease (at least four, five with family history). I'd get retested, and if the results were negative, I'd give gluten-free a whirl.

Wish I had way back when...versus letting my diet snap me practically lifeless. (Dumb thing I did even when symptomatic because doctors didn't tell me what to do.)

[Skylark]

Retesting can't hurt and absolutely try the diet once you're done with the testing. There are plenty of folks who get very sick from gluten and never have any sort of positive lab test or biopsy.

[cassthedancer]

Thanks to both of you! I guess I just needed some reassurance before I asked the doc to retest.

[Jenniferxgfx]

I've been anemic off and on forever. The hematologist said it was either gyn or GI in nature... The gyn said it was heavy periods but that didn't explain my anemia when I was on bc before! The funny part is that when my iron went up with IV infusions, my periods got heavier and more regular! Anemic again, my periods stop almost totally. I really think my lousy periods are a result of malnutrition.

Now I'm going the GI route and have a biopsy in a month. I'm mad I didn't do this sooner. I had a ttg test that was negative 2 yrs ago, and I didn't question it or go gluten-free because my GP insisted ttg was "accurate enough." Sadly, this is the best doc I've ever had.

Anyhow, retesting can't hurt if you're in a position to do it, but I think regardless, it can't hurt to try gluten-free life you know? That's where I'm at, anyway.