During Celiac Disease Awareness Month, I created a series of images you can share during this month and throughout the year. I attend medical conferences, work with top non-profits and the best and largest gluten-free magazine in the country. And it’s scary – there is way too much misinformation out there about celiac disease, and I feel like it’s my job to correct it when I see it. It doesn’t make me the most loved person during this month, but it’s something I feel very strongly about.
This has to be one of the most frustrating parts of my job. Correcting misinformation from uneducated doctors and online “experts.” And telling people that the celiac blood test is just a screener. There are too many false positives and false negatives from the blood test alone to use as a diagnostic tool currently. It needs to be used as a screener. The gold standard is an endoscopy. Remember, both the blood test and an endoscopy need to be done while eating a gluten FULL diet for accuracy. Just the facts ma’am
Gluten-Free 101: Dining Out. Always ask about how foods are prepared – fryer, grill top, pan – ask them to be prepared separately and safely! With a fryer, make sure they have a dedicated gluten-free fryer!
People always say “but I don’t need a diagnosis” but they don’t sit through all the medical conferences I do with top doctors. They tell me stories of people that thought they were #celiac but actually had colitis, microscopic colitis, crohns disease, ulcerative colitis or IBS or something really crazy! So important to get diagnosed so a GI can monitor your health and see improvement. Also, get a bone density scan and nutritional deficiency panel! Also, having a diagnosed #autoimmune disease means you’re more apt to acquire other autoimmune diseases! So many reasons why to get diagnosed and proper follow up care.
Tagged: #CDAM17, celiac, celiac disease
My favorite is…”Celiac, it’s not like you can die from that” or better yet “You are so lucky, is that how you stay so thin!”.
I have suspected my husband to be Celiac for a long time, we have been gluten free for about two years now and have learned a lot the hard way. I decided even though it is obvious that when he eats gluten the symptoms begin nearly immediately, I decided it was important to get a diagnosis to know if we need to be more extreme and get all news pots and pans etc. because he seems to get glutenized about every two months. We had researched a lot about the blood testing and went to the Dr wanting DNA testing to start with because we knew everything said he would have to eat gluten for weeks before getting the blood test to make it accurate. But he gets so horribly sick we didn’t want to put him through that. So the dr says he is going to start with blood work because that is what the GI will want. We asked about how it won’t be accurate without eating gluten and he said no, it will be able to detect it. I went home and researched more. I feel so angry that this Dr had us do a blood test that is $1300 that from my research appears to be a complete waste of money because I’m sure it will come back with a false negative because he is not eating gluten. Can you help me understand? I want to go back in and ask to not have to pay for this blood test which was ill advised by the doctor who doesn’t seem to know what he is talking about.
Yes, that’s absurd that the doctor did a blood test while he was not eating gluten. 🙁