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.
I have had digestive problems since High School and Drs never have been able to determine anything. I did have my gallbladder removed a few years ago, and over the past 5 – 6 years I have been more allergic to wheat items (whole wheat pasta, certain beers, etc.) with sneezing, and wheezing. Eliminated wheat which alleviated the allergic reaction but not gluten and continued to have digestive problems (rumbles, diarrhea, bloating, cramping, and flatulance (arrgghh)) Not an easy thing to deal with daily when meeting with clients. I have to excuse myself to the restroom quite often. They must think I have the world’s smallest bladder. Anyhow, decided two weeks ago to go gluten free and each day I have felt better (amazing actually!). In the middle of my personal test I chose to visit my Doctor and get the panel done at my request. I recently had bloodwork done a few months ago and was advised that I had a Vitamin D deficiency. This all started to make sense to me as I had begun researching various websites regarding Gluten Intolerance and Celiac. Additionally I must mention that my mother has Crohn’s Disease. Something also that is hereditary. I advised the Doctor that I had begun a GF diet and she said that it should not effect the test panel. In reading many sites, it seems that going GF may indeed effect the panel, but not sure if I have been GF long enough to reflect. Still waiting for the results of the test and like the other comment, part of me is hoping that it is positive as it will certainly provide me with an answer at last, but nonetheless, I do feel a lot better, and isn’t that the most important? Going GF is going to be difficult, but have recently purchased some cookbooks to aid me in this.
Does your site have a contact page? I’m having problems locating it but, I’d like
to shoot you an email. I’ve got some suggestions for your blog you might be interested in hearing. Either way, great site and I look forward to seeing it expand over time.
My daughter has had stomache problems since birth (ie vomiting diareah gas bloating pain etc.) I have taken ehr to doctors for years she has had so many tests. She was diagnosed as a failure to thrive baby until she was 2 when she started wanting to eat and eat. She got a stomach ache and thought she was hungry she got hungry very easy didnt seem to get full like she should and gained weight without being able to lose unless she was sick for an extended period of time. Recently she was sick down in bed with alot of crying and pain for 2 months the Dr had me put her on a Gluten Free diet and she has been refered to a Pediatric Gastro. She has been on the diet for 2 weeks and it is amazing how much difference it is already making. She is not having as much pain not as gassy the bloating has gone down ALOT and she is happier then I have seen her in a long time. She is still getting frequent (almost daily) stomach aches and diarea but it is not constant and not as bad she isnt vomitting so much and is doing well with it. She will not eat anything without knowing it doesnt have glutten in it. She is 7 and will actually bring me something she wants and ask me to check it to make sure it doesnt have glutten. When she heard her grandma and I talking about the possiblity of the gastro wanting her to eat gluten again for a while for the testing she cried and said she wouldnt eat it. She says she doesnt want the “tummy aches”. How am I supposed to make her suffer that way? I cant!!!!
Shawna- That’s a common theme. No one who sees an improvement wants to go back. There are advantages to finding out if she has celiac disease though. Both perspectives are listed above. Best wishes to you and her in any case. So glad to hear she’s finding a little relief. ~nancy
I have struggled with my weight all my life, though I’m not obese (I could lose 20 pounds at the moment). I’m just through menopause and of course that makes things worse. Last year I went on Alli and managed to lose about 15 pounds, to my delight, but then it went off the market (and the weight crept back on). When it came back on the market, I started using it again, but it wasn’t helping at all this time, and I felt lousier and lousier. I had an ultrasound this week to check my ovaries (as all my symptoms pointed at ovarian cancer) but was cleared, and it was after that that a little online research pulled the concept of “glutens” into view. This makes perfect sense, now, my brother who is 55 is gluten-free because of his health issues, and it just never occurred to me until reading up on celiac disease. I’ve started gluten-free today, and am struggling with the concept of all that good stuff I have to forego, but I figure eating healthier will help, and if this turns things around for me, I’m all for it. I imagine I’ll spend a lot of time on this site trying to figure out how to cope, learning what to buy and cook. It’s nice to have this resource, and also to understand how many people have been dealing with this.
Hey Julie! Thanks for sharing. I’m so glad you’ve been cleared from cancer! Best wishes with your new way of eating, but you don’t have to forgo anything good! Really. Keep looking around and feel free to post questions on the facebook pag for answers, or use the contact form to contact me directly. There’s lots of help around! ~nancy
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I wanted to ask if there are draw backs to the hole family going gluten free? Why is it important to get a diagnosis? I can’t tell from reading all this information why anyone would go spend a couple of thousand dollars on tests when you can just eat different food. I can’t find anything a doctor can do besides tell you what not to eat. I also couldn’t find why children shouldn’t go gluten free except they will miss out on vitamin B. I would like to know if there are real concerns! Please advise.
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