6 years ago, my mother-in-law almost died of celiac, literally, the doctor told her that if they didn’t find out the cause of her illness soon, she would die. She should have been around 145 lbs. but only weighing 95 lbs she looked like a skeleton. She was only 50 but looked 80, seriously. Anyway, she was finally diagnosed with celiac only after my husband finding a doctor who took her seriously. For once in her life she is healthy and feeling great.

Bear with me, this is the foreground.

Last year I gave birth to my first son, something was terribly wrong with him, he was born very small and no fat on his body. He was overall very happy during the day but at night, he would roll around in pain and would scream. None of the Peds took me seriously, they all took me for the nervous first time mom and said he was fine. Same with everybody else that I would talk to.

After talking to someone about food allergies, it finally hit me, I realized that it could be Gluten. As soon as I stopped eating Gluten (breastfed) he was 90% better. Then I went off casein and he was a 100%. I actually have people that have told me that I should have him tested, which would mean that he would have to go back on gluten for 4-6 weeks. Anyone that says that has never had a child with it or ever experienced it violently before. My son may never be tested for celiac. I’ll leave it up to him when he gets older he can decide. But it seems really obvious to me and I don’t have anything to prove to you celiac snobs anyway.

Let me add one thing about a month ago, my mom talked me into going to see an allergist and they decided to do the blood test for gluten and dairy. Even after I told him that I follow a strict diet and that he probably wouldn’t show anything in his blood stream, the doctor said that the tests were really good and that if he has EVER been exposed that the anti-bodies should be there. Both tests came back negative, and he told me to start him slowly back on each separately, when I asked him if he could still be allergic he said yes and started saying the opposite of what he said in his office. (by the way my son was violently ill after trying it again) My point is that there are not a lot of doctors out there that know what they are talking about.

One thing that people don’t realize as some have touched on is that if you don’t have extreme intestinal damage then even that test can come back inconclusive. My mother-in-laws first blood test came back neg. intestinal exam positive and then another blood test came back pos.

Same with my sister-in-law blood test pos. intestinal came back inconclusive.

(p.s. their whole family has had major digestion issues and finally a few of them are starting to go on the diet to see great results.) Sometimes you are forced to self-diagnose and still be celiac. I know my son is because his grandmother suffers from the same thing and almost all of her descendants and siblings including my husband.

My personal opinion is that if someone in your family has it, and others have had major digestion issues their whole life and don’t know what is wrong with them then they all probably have it. There is a total of 9 people in my husbands family fortunately 5 of them have went gluten free and now say that their life is completely changed.

Sorry for the long post, I just don’t know what people expect, I’m not going to put my 18 month old son through the tests or put him back on something that causes him to scream in pain.

Also, my son had huge rashes, blood in stool and diareaha that looked like neon-green slime. Still no one thought anything wrong.

Sometimes you have to take things into your own hands and be an advocate for your own health diagnosed or undiagnosed, I am compassionate for people and very happy when someone finds relief, especially if they have been treated the way me and my family have been by doctors and other people.

I updated the list to clarify. Thanks for your contribution!!

I only got diagnosed early because I educated myself, and was willing and able to pay for the testing myself. If I hadn’t, I’d be marginalized by the CD community as not a “real” celiac.

I know, I know, Celiacs want to distance themselves from nuts who vaguely avoid gluten because it’s “healthier” and have no idea what it is. But as far as I’m concerned, If someone’s health noticeably improves on a strict GF diet, it’s not only uncharitable but ignorant to assume it’s simply a placebo effect. With 95% of celiacs undiagnosed, maybe, just maybe, they were actually an undiagnosed celiac to start with … (and of course, that % is a lot higher, if you consider that the current diagnostic criteria are way too narrow.)

It would be more helpful for us to advocate on behalf of the whole gluten-ill community, rather than make Celiac a clique.