Gluten Free For 6 Years- Retest Came Back Negative

[Manda Herndon]

Hi! This is my first online post ever. I am in need of some help. I was diagnosed with celiac disease when I was a senior in high school (about 7 years ago) and I have been gluten free for 6 solid years.

I went to get retested about 2 years ago- the Dr. only did a blood test and he told me it came back negative. I did some research which let me know that a blood test would come back negative if I had no gluten in my system bc my insides were calm. False negative - makes sense.

Well just a couple of months ago I went to a different Dr - he did a flex sig and something else and checked my insides. He also said the tests came back negative for celiac disease. Buuutttt - once again I didn't have any gluten in my system. Could that affect the tests? I've been gluten free for 6 years.

I had a slip up about a few months ago and ate some gluten and it felt like I was being stabbed in the stomach all over again. Also had the major lower back and stomach pains that I used to get before I was diagnosed. That makes me think I still have it.

I guess I just have tons of questions. I'm married now and we're thinking about having a baby in about a year. If I don't have celiac disease I'd love to get super healthy by eating a well balanced diet and incorporating wheat back in it. But I'm not even sure if that's necessary. I'm even thinking about going on a mission trip soon and it would be a lot easier I'm sure if I didn't need my gluten free food.

Please help. Any advice is appreciated.

Thanks!!

[dilettantesteph]

Once you have celiac, you always have celiac. It isn't outgrown. The tests look for response to gluten. If you aren't eating any gluten, they will be negative even if you have celiac disease. You can get a balanced diet without eating wheat. Wheat was developed relatively late in the evolution of man. We don't need it. You can eat other grains.

[mushroom]

Yep. The negative test shows you are doing a good job of avoiding gluten

[kareng]

To add to the other posters: The negative endoscopy means you have healed you intestines. If you start eating gluten, you will damage it again. It may take a year or 2 to have a lot of damage but you wouldn't want that. Also, if your pregnant, the antibodies that attack your intestines when you eat gluten, could attack the baby or the placenta.

[cassP]

ditto. you were diagnosed with celiac, you are a celiac. the recent negative tests show that you have healed your villi and are not actively producing antibodies.

like said above- you can still eat the food pyramid/carb heavy if you like- just without gluten.

[GlutenFreeManna]

yep, I agree with what everyone else has said. Just to add to it, once you are diagnosed, doctors often retest as a measure of how well you are avoiding gluten. If it come back negative after you have been eating gluten free that means you are doing a good job avoiding it. Also, just the fact that you said you felt sick from ingesting some gluten on accident means that you still react and will make yourself very sick again if you go back to eating it. I know "healthy" can be a confusing concept when the world is saying you have to eat whole wheat things, but in the case of diagnosed celiac you need to avoid wheat (and rye and barley) to be healthy and especially to have healthy pregnancy. You can eat lots of other whole grains like brown rice, quinoa (if it agrees with you), flax, buckwheat, corn (grits, polenta), etc if you want to have a more whole grain diet.

[Reba32]

You have Celiac disease. Eating wheat is not part of a healthy diet for you. And I would even argue that it is not needed by the general population either. It is more than possible to have a "healthy diet" that does not contain grains.

[T.H.]

Just out of curiosity - why were you tested again? And did the doctor who was testing you know you had a positive test previously when he tested? There should be no reason for either of them to be checking to see if you have celiac disease with a positive diagnosis already. It's not a disease like chicken pox that you 'get over.'

It's more... It's kind of like being born deaf and having the doctor check to make sure you're still deaf a few years later. Some things are simply part of us.

Right now, my doctor gives me the blood test to make SURE it's coming back negative, so he can check that going gluten free is working. Sounds like it's doing well for you if it's negative. That's a good thing.

Regarding the diet and having a baby? A gluten free diet is not inherently healthy or unhealthy for a normal person. Wheat ain't a required food group, you know? But for a celiac, a gluten free diet is the ONLY healthy diet for you (sorry for the mission trip. It's not gonna be easy. Although maybe you'll luck out and it'll be one of the island countries where no one eats wheat. ). But back to the pregnancy: if you have celiac disease, pregnancy is the time you want to be really strict about staying away from gluten. If you eat gluten while you are pregnant, you could be putting the baby at serious risk. Many women suffer miscarriages when they get pregnant and have undiagnosed celiac disease, because the body can't absorb enough nutrients to support both mommy and baby. Definitely something to completely avoid.