Wondering what’s involved with the why & how behind getting screened & tested for celiac disease? Here’s what you need to know to help demystify the process you must take before going gluten-free for good!
Now that we know what celiac disease is, that it’s not a food allergy, and the symptoms, now it’s time to learn just why and how celiac disease screening and testing happens. The key here is BEFORE, I repeat, BEFORE you go gluten-free, the only way to ever know and get an accurate, credible, medical diagnosis is to get tested while gluten is still being consumed and possibly wreaking havoc on the system. If you start your gluten-free lifestyle before you get this diagnosis by a professional, forget about getting special accommodations when they are truly needed (i.e. in college, school, the workplace).
There are two essential parts to being tested. The first is Serologic Blood Panels, if those yield positive or questionable results, then the small intestinal biopsy will be performed to confirm a celiac diagnosis. After those two are run, it is beneficial to get the genetic test. This will not only confirm further for you, but also be good for your first degree family members (if they get tested as well) to see if they carry the “celiac genes” and then may want to get blood panels as well.
MY LATEST VIDEOSBelow is an in depth look and more information on these 3 tests that will be preformed by your doctor or gastroenterologist upon your urging or their recommendation:
Serologic Blood Tests: Indicates antibodies present in celiac disease as part of the IgA or IgG (immunoglobulin A/G) panel. If a patient has an IgA deficiency, (when IgA-EMA and IgA-tTG are negative and determined by the AGA test, but celiac disease is still strongly suspected), IgG panels can be run instead. For these panels you MUST be consuming gluten for anything to show up accurate. These test panels can vary from lab to lab as to which ones are run.
EMA (Anti-Endomysial) – Most accurate indicator of celiac disease (99%).
tTG (Anti-Tissue Transglutaminase) – This is an enzyme-linked test and may lead to better results in those with more damage and sensitivity, but is still a very accurate indicator of (93%).
DGP (Deamidated Gliadin Peptide) – This is the newest antibody test and research is still being done. Less is known about its accuracy and due to its cost, EMA and tTG are still run first, however this test is usually run if IgA deficiency is present.
Small Intestinal Biopsy: If the Serologic Blood Tests point to celiac disease in the patient, it is then typical and recommended to get a biopsy so the small intestine before any modifications to diet are made. The biopsy is a simple outpatient procedure done by your gastroenterologist. If damage is found, along with the positive blood tests, which on indicate the possibility of celiac, this will “confirm” the presence of a celiac disease and complete the diagnosis.
- If Dermatitis Herpetiformis is present on the patient (the skin manifestation of celiac disease), a biopsy of the skin can also be done.
Genetic Testing: There are two genes that are associated with celiac disease. You can either have one or both and they are HLA DQ2 and DQ8. However, 40% of people carry these genes so it DOES NOT mean that you have celiac disease nor will you ever develop it. Only about 1% of people do have true celiac disease, but of that 1%, they all carry one of both of the 2 genes. This test can be done via blood or saliva, after the 2 above tests have been run. The genetic test is helpful in screening the rest of a celiac’s family (first degree relatives) or as a last ditch effort if the suspected celiac patient is already on a gluten-free diet or the other blood tests and biopsy were not easily confirmed.
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So tell me:
+ What was your celiac testing like? I had the biopsy done first, then the blood panel!
+ Have you ever had genetic testing done? No, but I’m curious!
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+ https://celiac.org
+ http://www.niddk.nih.gov/
+ https://www.csaceliacs.org
Thanks so much for sharing this post! Very informative.
Glad to hear!
Very interesting information.
Hope you learned something!
My hubby was actually tested for celiac and they went straight to the small intestinal biopsy, no other tests were done first. I thought it was a little strange, but turns out he’s not celiac anyway (I feel like we’ll never figure out what the problem is :/). I had to learn about a lot of this when I was in school for nutrition, but some of this is new, it’s interesting to read. Thanks for sharing =)
Testing is all over the place and it really depends on who you doctor is…not good…it needs to be regulated :/
Such a helpful post and so very needed!
Thank you!
This is going to be really helpful to a lot of people! Great post! Glad I found this, I pinned it.
Fantastic! Thank you!
Thank you for sharing this great post!
Thanks!
I am gluten free, but not a true celiac. I had no idea how difficult it was to get the diagnosis. I am happy that the world is beginning to notice how difficult being a celiac can be and creating foods that do not contain gluten. For me it has been life changing and my health is so much better omitting gluten from my diet!
Sure.
So glad I found your blog! I recently discovered I have Celiacs. The doctor initially told me I was depressed.. lol yeah I was depressed because I felt terrible from having Celiacs! Look forward to follow your posts. 🙂
I’m glad you found me too!
I hope you’ll be feeling better soon on your new journey to health! Shoot me an email if you need any support! xoxo
It seems like genetic profiles are the future of medicine. Thanks for the list of tests, like you say some doctors don’t do them or they may even do the wrong ones. I guess they can’t be up on everything.
Celiac is still not taught fully in the professional field, sadly.
Hi Rebecca,
Thanks for providing this valuable information. There is a lot of confusion about Celiac Disease. Pinned & tweeted!
Yes there is!
One of mine get tested via blood test. Thankfully she did not have ciliac. I work with some kids who do, and it can be trickey. Evern the simplist of foods have gluten.
Well yea, haha, celiac disease is a severe autoimmune disease.
This is SUCH an important post as proper diagnosis really is essential – especially so you can make sure you don’t have another underlying condition you’re misdiagnosing as coeliac disease! (Plus, why would you want to go gluten free if you didn’t have to, haha!)
The gene testing was interesting for us as we found my sister and I both have one of each gene – meaning both of my parents are carriers! My sister doesn’t have active coeliac disease whilst I do and neither parent will get tested as they don’t want to know who’s “to blame” 😛
My brother exhibits signs of celiac, but I know he would never get tested…if he feel fine, he never will, but there are so many weird things that alarm me :/
This is so important! So many people are told even by doctors to go gluten free and see how they feel, without eliminating celiac first! Yay for educating! xo, Kristina
Yes! This is the #1 step (or few steps, haha!)
This is so helpful! Great info – I know when we thought Mr. Nomato was celiac and had to go through all of this, including the biopsy and scopes and everything. It’s hard to know where to start for sure! I always love your posts 🙂
Right? Sometimes you just have to blindly jump into testing to start somewhere when it comes to things like this!
I don’t think I have celiac so I’ve never been tested but I’ve had blood work done for other allergies. Never a biopsy though. Sounds intense!
It’s worth it to get accurate info!
I had gene testing way back when I was diagnosed (after the blood test and scope/biopsy). I forget the reasoning why because neither of my parents have had it done…I want them to!
Yea! I would be curious since there are SO many digestive related problems in my family…I would not be surprised!