Should I Get Tested for Celiac Before Going Gluten Free?
This information is not intended to give any recommendation, be medical advice or to replace the advice of any medical professional, but just to present differing points of view on this issue.
First of all, if you already know you have an auto-immune disorder, a wheat allergy, ADD, Autism, Migraines, or any other health issue that you feel may be helped by a Gluten Free Diet, then you have seen a medical professional and determined you do not have celiac disease, then this information doesn’t really apply to you. Do keep in mind, however, that many other auto-immune disorders are often related to celiac and may be an indicator to be tested for celiac as well.
If you think you may have celiac disease—
The question arises, however, when you have symptoms that are mysterious, or you have researched celiac and feel that you may have it, should you start a gluten free diet to see if you feel better, or should you see a health care professional and be tested first?
There are generally two points of view that show up among our Facebook friends. Here’s a summary of the comments I’ve heard from both sides of this subject, and some things you may want to consider before making your decision.
Point of View #1:
Yes you should be tested for celiac before going Gluten Free – and here are some reasons why:
- If you have celiac, once you begin a Gluten Free diet, your system begins to heal. If you choose to be tested after having been Gluten Free for a while, a false negative is likely since damage done by gluten is clearing up.
- Many people try the Gluten Free diet before they are tested for celiac, begin to feel much better, and then are hesitant to go back and begin eating gluten again in order to be tested.
- If you have celiac, you will need to be Gluten Free for life, but many other conditions and intolerances often accompany celiac, so if you don’t know if you have it, you may not have all the information needed for your healthiest lifestyle choices.
- If you have an official celiac diagnosis, you can receive some tax benefits in the US and Canada, and some other governmental benefits if you are a citizen of another country.
- It may be easier for your child to get accommodations from public schools if they have an official celiac diagnosis.
- Celiac is a hereditary condition, so it is very helpful information to pass along to your family members if you get an official diagnosis.
Helpful Resources:
- Celiac Disease Tests: Diagnosing Celiac Disease Requires Blood Tests and Biopsy by Nancy Lapid
- Symptoms of celiac disease and Who should be tested
University of Chicago Celiac Disease Center - Tax Deduction for Gluten-Free Foods as a Medical Expense for Diagnosed Celiacs Only by Scot Adams (This article is a few years old, but appears to still be accurate.)
Point of View #2
It’s not necessarily needed to be tested before going Gluten Free – and here are some reasons why:
- You should get off of gluten right away if it causes you or your child discomfort.
- You’ve already been gluten free for a while and feel much better. Does it really matter if you have celiac as long as you are planning to stay Gluten Free anyway?
- Many people are happy and healthy just figuring out what foods they react to and eliminating them. No diagnosis of any kind needed.
- If you write the diagnosis of Celiac on an insurance form, you are branded with a pre-existing condition, which in the current insurance climate, is still an issue.
- You are not ill, but have heard good things about what a Gluten Free diet may do for you, so you just want to give it a try.
Again- nothing here is a recommendation or advice. These are only reasons people have posted on our Facebook page to support their decision to be tested or not prior to beginning their Gluten Free lifestyle and to help you think through the issues before you try going Gluten Free.
Right now I cannot imagine adding gluten to my diet for 30 days in order to be tested. Before going GF, I was becoming afraid of going outside my house. It has taken over a year, but my confidence is slowly building and my life is close to “normal”. It would not be an easy decision to make. Thank you for the info.
Lynda- You’ve expressed exactly why it seems most people who have already been living gluten free often decide to forgo testing. Best to you in your decision-making!
I think adults can choose for themselves whether or not to be tested for celiac disease.
I think parents should have blood tests for their children and teens before the minor begins a GF diet. I believe this will be useful info for the child to have as they mature.
I took my daughter off of gluten for a month and she was feeling better. She ate it one day and was sick for four days. No testing needed!
Bear in mind those of you who chose to go GF without a proper Dr diagnosing it may have some serious consequences.
Celiac’s Disease and the glutens can damage your upper GI tract just for reference. Meaning your small intestines can have perforations and lacerations causing intenstinal bleeding.
Plus the stunted growth of children is just one of many results of being on a gluten diet when being allergic. It’s called “Failure to Thrive” in children and infants. It causes poor weight gain and their height can even be stunted too.
So, please go get a proper diagnosis if you can.
Melinda, just curious what the ‘serious consequences’ for adults if not getting tested can be?
Also, I was gluten-free and milk-free for a few months and felt better, then ate gluten + milk again (with supplements, and felt better), then stopped supplements and ate everything, now wondering if to get tested or not.. I’d have to wait 4+2 or 7+2 months or more to get tested.. I don’t want to be brain-foggy or bipolar-ish all that time!! How much gluten would I need to eat every day? Or could I just be gluten-free for three or six months (depends where I’d get tested), and then eat gluten for one month? It’s mind-boggling! not sure what to do!!
May re-post this at some forums..
If you and/or your children are already following a gluten-free diet, and don’t want to stop to be tested (an understandable point of view), you can still get the genetic test for the celiac genes instead of the antibody tests. The lovely thing about the genetic tests is that they can definitively rule out celiac, which the antibody tests can not.
Here is a link that discusses this issue in more depth.
After years of misery and the removal of my gallbladder, I finally heard of celiac disease and gluten sensitivities. I decided I would need to go gluten free too feel better. I tried it for 3 weeks and felt a huge difference. I had more energy and wasn’t getting sick as often. It was a complete turn around and never felt better. I did end up going back on gluten to get tested but ended up getting a negative result. I feel like I probably got a false negative. Ever since then I decided to go gluten free anyway. Since that decision I don’t get sick as nearly as much as I did. There are a times every once in a while that I do get sick but I think it is either from too much fat (because sometimes you don’t realize how much fat is in something, and without a gallbladder I process fat differently.) or on the rare occassion of cross contamination. I am still learning but have felt way better than I have in YEARS! I am so glad that no matter what the test said I have stuck with my gluten free decision. Sometimes it is really hard being a college student and not being able to have pizza with friends or the usual college stuff but at the same time I know that not only is it bad for my health (because of gluten as well as being full of fat/calories) I won’t risk gaining weight by eating junk that everyone else is eating.
Thanks for sharing your story, Heather!
I am new to this. I am scared, to be honest. I have a deep attachment to food and I really hope I can do this, because I need to. I got my blood tested for this yesterday and I’m waiting to hear results. I have had stomach issues since I was in high school and this past March I was diagnosed with Rheumatoid Arthritis. Part of hopes it’s positive, just because that would give me an answer. Part of me hopes it’s not, because I love bread. I bought my first loaf of gluten free bread today. I hope I love it.
I’m so glad to find this site!!!
Hi Teresa-
Glad you found us, too. If you need to/decide to be gluten free, you’ll get the hang of it. There are great replacements for anything you want to replace, and some of it, lots of it, you’d be better off without anyway. Take a look at the product review section for my favorite gluten free breads – much of it is not good, but much of it is great.
I don’t blame you for being anxious while you wait for your results. Many here can relate to your fears as well as your hopes.
Let us know how it turns out.