If you read the list of celiac symptoms and think that maybe celiac was you’re problem, you might be tempted to just avoid gluten for a few weeks and see if it makes you feel better.
It might initially seem easier to do this than to go to the doctor and try to get them to test you, but it’s so important to actually be tested for celiac and know for sure.
Should I get tested for Celiac? What’s the point?
YES you should. Don’t drop gluten just yet! Get tested first – and you need to still be eating gluten for the blood test to be effective. It seems counterproductive to keep eating gluten when you pretty much know it’s whats causing you problems, but it is important to get the right diagnosis here.
I figured out that gluten was what was giving me problems so I stopped eating it then went to the doctor to be tested, only to be told I had to go back eating gluten for 2 weeks to take the blood test. That was the hardest two weeks of my life, being in pain, knowing what was causing it and still having to consume it!
Before giving up gluten, it’s very important to be tested for celiac disease, gluten sensitivity or allergy. There are a few reasons.
- Not all people with celiac feel better after removing gluten right away, so that’s not a good indicator. I didn’t. I actually felt worse.
- It’s really hard to go 100% gluten-free, so you might not be doing it right anyway.
- It’s important to know so you are aware of the long-term implications of “cheating” or still being glutened if you are a celiac (and reduce the temptation to cheat!).
- So you can monitor your condition, monitor nutritional deficiencies, monitor the healing of your intestines and look for signs of other autoimmune conditions
- Celiac is a GENETIC condition. A person with celiac’s first degree relatives (parents, siblings, children) have about a 10% chance of having the disease (interestingly, identical twins have a 70% chance). It’s important to know so you can recommend family get tested if they show symptoms and to have your children (or future children) tested (the genetic test for celiac is good for testing children without unnecessarily exposing them to gluten).
- So you know that you have leaky gut (if you have celiac you have leaky gut) and that you have to heal the leaky gut. (PS. if you have other digestive issues, then leaky gut is the likely root cause also).
And it starts with just a simple blood test.
Many doctors are still not very aware of the range of symptoms that celiac disease can present with. They aren’t given too much training on celiac (although this may change with the increasing numbers of celiac) and there are no drugs to treat or cure celiac so pharmaceutical companies have no interest in ‘educating’ doctors about it (pharmaceutical companies trying to sell products educating doctors is ridiculous and insane, but it’s how it works).
The average time it takes to be given a proper diagnosis of celiac is four years, during which time the disease can progress and lead to the more serious consequences of the disease. So not wasting time is important.
As is an all too common story with people these days, I was given the run around by doctors for years with different tests and procedures before finally I figured out bread was causing an immediate pain reaction in my body and I demanded to be tested for celiac. It took me about four years to be properly diagnosed.
I was lucky that I had that immediate and strong response to bread so that I knew to demand the test and that my doctor complied with it, but you’re symptoms might not be as straight-forward as mine.
If you want to be tested but you’re doctor has assured you that you don’t have it, put your foot down or find a new doctor.
I recommend you take back ownership of your health, and understand that doctors don’t know everything and they certainly don’t have the answers to everything – they are a PARTNER in your health and not someone to be put on a pedestal that we bow down too.
YOU are the biggest advocate for your own health, so stand up for what you want to happen.
And whether you have celiac or not, if you suspect it get tested and rule it out.
Having the initial blood work and/or biopsy can act as a baseline for future checkups and will show whether the gluten-free diet has been successful or not. If the follow ups show positive results after having been negative previously, it will indicate that you’ve been accidentally ingesting gluten. This is especially important if you are one of the rare celiacs who don’t have any symptoms after being glutened. The biopsy results can also show whether your intestinal villi are healing nicely too.
All of that said, I completely respect and honour your decision to be tested or not as all of our circumstances are unique and we must do what’s right for us. After having the blood work done, I decided against having the biopsy for a few reasons. First I had only recently had another invasive procedure done (a laparoscopy) and the procedure was much worse than they told me it would be, it was very painful and took me awhile to recover.
Secondly, I was pretty had it with doctors by this point and just didn’t want to be around them more than I had to be. Thirdly, I was worried seeing the extent of damage to my intestines would make me more depressed and hopeless than I already felt, and I was sure the damage was pretty bad based on how I was feeling. Looking back, I do think having the biopsy done would have been a good idea, just so I could gauge how I am healing.
How do I know if I have celiac disease?
If you’re like me you may have suffered many years of unexplainable symptoms, without finding a root cause. Check out the extensive list of celiac symptoms here and see if they are what you are experiencing.
Celiac disease can affect almost any area of the body, so the symptoms for celiac are widespread and can often look like other conditions. The symptoms can occur sporadically, constantly or after ingesting gluten (minutes, hours or days later). Some people with celiac present no symptoms at all, leading to many undiagnosed celiacs (it’s estimated there are around 330,000 undiagnosed in Australia alone) – but remember they will still risk suffering the long-term effects.
What are the tests?
There are several tests to determine if you have celiac disease.
The first test that will be done is a simple blood test by your doctor or naturopath to see whether you have higher-than-normal level of certain antibodies in your blood (this is why you still need to be eating gluten to take this test) and this test is quite accurate. You must be eating gluten for this to be accurate!
The Tissue Transglutaminase Antibodies (tTG-IgA) blood test is the most sensitive and commonly used test, and is about 90% – 98% accurate. It can sometimes produce false negatives, if you believe that’s the case with you ask your doctor for the other celiac blood tests, the genetic test or insist on getting a biopsy done. You can read this article here about the tests accuracy.
If the blood test is positive, it’s likely that you’re doctor will want to do a small bowel biopsy (endoscopy) to confirm the diagnosis. It’s an outpatient procedure that requires some anaesthesia. A scope is inserted into your mouth and passed down into the small intestines, where the doctor will have a clear view of your intestines and will take several small biopsy samples.
These samples are studied to see if there is any damage to the intestines and the extent of the damage. Certain indicators like damaged villi will be used to form an accurate diagnosis.
The endoscopy can also sometimes produce a false-negative result, as sometimes they can biopsy an area that doesn’t have damage.
Getting these initial tests done established a good baseline so at your regular checkups you can see whether the gluten-free diet has been successful and your intestines are healing. If your blood tests are still coming back positive for gluten antibodies, it could suggest that you are inadvertently being glutened. If you’re sure your diet is 100% gluten-free, this could suggest cross reaction.