Are Blood Tests Inhibiting Your Celiac Diagnosis?
I sat across from my doctor shaking my head in utter disbelief. Throughout our conversation I kept thinking about the incredible statistic I read in Peter Green’s book: as of 2006 (when the book came out) it took an average of 9 years for a person to get a celiac diagnosis. I was just beginning to understand how that could be possible.
For 6 months I have been having stomach problems. My doctor diagnosed me with irritable bowel syndrome, gave me some pills, and told me that I need to find a way to relieve my stress. I agreed that I was stressed out, but most of my stress was related to these stomach issues! I suggested that she send me for an endoscopy. My daughter is a celiac, I have been underweight my whole life, I have recently developed lactose intolerance, and I have lost six pounds over the last six months (that might not sound like much to some, but I am very underweight as it is)!
She refused. She felt that an endoscopy was invasive and because my serology (blood tests) was negative an endoscopy was not warranted. I pointed out that 10%-20% of people with negative blood tests are actually celiacs. She agreed, but wouldn’t budge. She said that I am very stressed out and that must be the cause of my irritable bowel syndrome. I pointed out that 37% of celiacs have irritable bowel syndrome. She nodded her head in agreement but refused to budge. I sighed and left her office. I knew what I had to do…I just didn’t want to do it.
My cousin is a gastroenterologist. I didn’t want to call him because I had bothered him enough over the last few weeks, but my doctor left me no choice. So two days after my meeting with my doctor I dialed his cell phone. I apologized for being his most annoying cousin and told him my tale of sorrow. He didn’t even flinch (at least I don’t think he did, we were on the phone so I couldn’t see him.). “Sure, I’ll give you an endoscopy,” he said. “Really?” “Absolutely, I think that it is a very reasonable thing to do,” he explained. So did I.
Blood tests are an important screening tool for a celiac diagnosis. The problem occurs when doctors become so reliant on these tests that they can’t see past them. They are not 100% accurate and doctors need to keep that in mind when they are treating possible celiacs.
My endoscopy is scheduled for this coming Tuesday. I’ll keep you informed.
9 Responsesto “Are Blood Tests Inhibiting Your Celiac Diagnosis?”
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It took me 14 years to get diagnosed from when I was diagnosed with Irritable bowel. I had symptoms from High School (extremely underweight to the point people thought anorexia). Finally found a doc that listened (military system)and did eveything necessary to try to find out. March 2008, diagnosis and no longer feeling crazy!! Glad you have a cousin that can give you an endoscopy. I didn’t. I even had the dermatitis herpeteformis (eczema related to Celiac) and the dermo said no way the food was linked to the eczema. MORON!!
UGH! It’s so funny when doctors behave like that!
I have the opposite problem…I tested positive but my daughter had negative results. She actually seems to be much more sensitive and react much more dramatically to gluten. Go figure. We just changed her diet anyway and he is feeling great now. I’m a big proponent of going with your instincts no matter what experts say.
Getting an endoscopy is reasonable, absolutely. I got one, and it turned out I had ulcers, something I never would have guessed. But even if it comes out ok, irritable bowel can be related to gluten. Gluten can really mess up your gut, even if you don’t have the auto-immune disorder called celiac. Keeping a food diary can help you pinpoint what, exactly, your gut doesn’t like.
One thing that really helps calm the gut though, is konjac. Sprinkle 1/4 tsp on your meal: you’ll digest your food better and your gut will feel much better. It also comes in pills as “PGX” … it’s sold as a weight-loss aid but it only works that way if you are overweight.
Hope the endoscopy goes well for you. Please remember gluten can still be a problem even when blood and biopsy are “negative”. Non-celiac gluten sensitivity is very real – just not well studied. Gluten affects us in so many ways other than villous damage. A good resource is The Gluten File. It is a collection of abstracts and articles about getting diagnosed, related diseases and nutritional deficiencies. http://jccglutenfree.googlepages.com/
Well wishes
I’m glad you’re getting the test buy my doc only took two samples during the biopsy. Luckily they both showed “significant” damage but afterwards Dr. Rudert (celiac expert in Atlanta who is not my doctor) explained that 6-8 samples are needed for correct results! Most docs still take only two. Good luck!
I could’nt agree more. It certainly took me more than 9 yrs. to be diagnosed. Like you it started out with blood tests, barium enema’s (yuk) and finally an exploratoy operation. Still no results, the fact that they didn’t find cancer they were happy with the results. BUT I wasn’t, I was still sick and hospilized and it was our daughter who got in touch with the hospital dietican to come speak to me and she told me to ask the Dr. if I was tested for Celiac as like she said, Dr’s do not want to be told what to do. She suggested that go through the back door and she was right. Finallly a biopsy was ordered and sure enough – Celiac disease. A Dr. told me later that barium enemas are only 50% accurate. Great news after I had 3 of them.
HI,
Check out http://www.theglutensyndrome.net
We’ve been through this. What is important to understand is that:
1.Gluten can break up into more pieces than they have tests for, so if your antibody tests are negative it could easily be that they didn’t check for the pieces you have. A well run positive antibody test is conclusive. A negative test is NEVER conclusive, and very often misleadingly false negative. Not all gluten syndrome reactions involve elevated tTG either.
2. The damage done by gluten might injure tissue almost anywhere in the body. Once in a while it injures intestinal villi and then they catch it and take you off gluten. More often than not, the damage is somewhere else beside the villi, so the endoscopy shows healthy villi, even if they do plenty of samples to catch patchiness, etc. Plain and simple the damage may be to the nerves in the gut, or to the heart, pancreas, joints, liver, thyroid, you name it, but NOT the villi. One or 2 in 100 have villi damage, but depending on the researcher you talk to, 10-50% + of folks may actually be reacting to gluten.
Check out the science on the website. I hope for your sake that if you are in fact reacting to gluten that you have villi damage since you worked so hard to get the biopsy. But don’t be surprised if it is also negative. And don’t be thrown off by it. You may have nerve damage or damage to some other tissue in the gut or somewhere else in the body.
If you wish you may contact me at info@glutensensitivity.net for moreexplanation. This is complicated and important.
Thank you all for your responses. I’ll keep in mind that these endoscopies on our villi are not always accurate because the doctor might have focused on the wrong villi. I also now know that the disease might not be focusing on my villi at all, in which case the endoscopy won’t tell me a thing. You have all been very helpful and supportive and it really helps to have a community behind you. I’ll keep you informed about the results of the endoscopy.
Julie
Hi Julie,
Thanks for posting this. I look forward to hearing the results of your endoscopy.
Best Wishes,
Ron