To A Newly Diagnosed Celiac, part three

Hey, it's me again! It's been six months since the last letter, and I've changed a lot. Well, maybe not that much. I'm still Robynne, and I'm still a celiac. I think I've come to a place of understanding and acceptance, but I also think I was pretty much in the same place six months ago.

In the last six months, I have had several friends tell me they are now gluten-free.

One of those friends went to the doctor and had a celiac test done. When it came back negative, she tried eating gluten-free anyways, and feels infinitely better. She cheats here and there, because she can get away with it. I'm totally okay with this. In fact, more power to her! If eating gluten-free makes you feel better, awesome! You don't have to be a celiac to share my food.

The second of those friends felt sick for awhile and starting researching what it might be. After some trial and error, she settled on eliminating gluten. I have a couple of problems with this. First of all, self-diagnosis is never a good idea. No matter how simple a change you make, deciding what's wrong with you without consulting a doctor is a bad idea. Second of all, she could have celiac disease and not know.

The third friend told me that she went to her doctor, who advised her to try eating gluten-free and see what that did. Now, at least this isn't self-diagnosis, but I still have a problem with it. You see, the test for celiac disease requires that you be eating gluten. They say you should be eating a normal amount of gluten every day for six to eight weeks in order to take the celiac test. If you feel a lot better eating gluten-free, you're not going to want to eat gluten for nearly two months just for a simple blood test.

So what's the big deal? Why is the celiac test so necessary?

The difference between eating gluten-free and having celiac disease:

Celiac disease is an autoimmune disorder that causes one's antibodies to attack one's intestines when gluten is introduced.

Gluten intolerance is not a specific diagnosis, so I can't say exactly what causes it, but it is essentially a reaction to gluten that makes one feel unwell. For each person, "unwell" may mean different things, and the level of gluten that causes a reaction may vary.

A celiac cannot risk any amount of contamination, whether or not they have a reaction to it. The smallest amount of gluten could cause damage, even if it doesn't make you sick.

Someone who is intolerant to gluten can risk contamination, and even cheat when they want to. The only thing they are risking is the way they will feel later.

(These are really just my opinions and views. You can read more here.)

The point is that it is really important to get a diagnosis, if there is one to get. (One of my favourite books talks about this at length.)

So here's my recommendation, which honestly has come from the recommendations of all of my favourite celiac bloggers. If you are feeling unwell, if you think gluten might be a problem, go to your doctor. They might suggest other things, they might even find something else that's wrong. But ask them for a celiac blood test. Not all doctors are experts on celiac disease. A lot of doctors have never really dealt with it. So ask your doctor to be tested for celiac disease. Here in Canada, the test doesn't cost you a dollar. It's a quick blood test, so it's practically painless. It doesn't hurt to have it done, and the second that they get your blood out of your body, you can start eating gluten-free. The test will probably take two weeks to come back, so in that time, you can try eating as gluten-free as possible. That way, if you are a celiac, you've lessened the shock a little bit, and if you aren't, you might know now if gluten is a problem for you or not.

I guess this isn't aimed at "newly diagnosed" as much as "soon-to-be diagnosed", but if you are currently eating gluten-free and have never been tested for celiac, please please please get tested. You will never regret it, you may regret not getting it done.

I guess that's all for now. Good luck on whatever journey you're on, and always feel free to reach out to me. I may not know exactly what you're going through, but I know what I went through.

All my love,


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