Dx 3 Years Ago

[LoveIsntMade]

I was diagnosed through a positive blood test with celiac disease 3 years ago. As soon as I found out, I went strictly gluten free. I didn't notice a change in anything, and still never have. My Dr. says he tested me because I grew up with depression and somewhat irregular periods.

Even when I've accidentally ingested gluten, since I went gluten-free, I still have had no symptoms. It's very difficult coming to this place now, 3 years later, doubting if my celiac disease diagnoses was right. I wish I had done the biopsy but I didn't, and I suppose it's water under the bridge now.

I'm lost on what I should do. Go back to gluten and be re-tested? Stay gluten-free? I'm only 21. I don't hate the gluten-free lifestyle at all, but the cost of it alone is enough to make me want a 100% answer if I'm going to remain gluten-free for the rest of my life.

Any suggestions?

[ang1e0251]

So many of us wish we could experience the good health you do. You know I've read many posters who tested negative on blood but still had celiac disease. I've never read one say their blood work was positive but they didn't have celiac disease. I think your blood test was conclusive.

It must be terribly hard to be asymptomatic and not question the reality of celiac disease. But the problem is you don't have a little window into your insides. You don't how how gluten can silently hurt you. I have heard of folks who were asymptomatic and very suddenly had very serious illnesses. It just built up silently until it burst out into big problems.

Please don't compromise your future health with your doubts. Maybe genetic testing would help you to see your vulnerability and help your unease.

[shirleyujest]

This is a tough problem and I can relate to your wanting to know 100%. It is expensive and a pain on the behind to be on the diet if you don't need to be. First, a couple questions which are just to get you thinking about what's really going on. If I'm reading you right, you still have depression and irregular periods? Have you had any follow up testing, e.g. hormone levels, to determine why? It seems like testing for vitamin deficiencies might make sense, as would doing a food challenge thing to see if you are having a reaction to some other item like soy etc. Also if you're not currently exercising that's a great way to boost the mood as you know.

All labs make mistakes so of course it's possible you had a false positive. The problem here is if you just resume eating gluten and don't re-test you could be doing, as you know, enormous damage to your system. And if you want to have children someday this could be compromised.

I like Ang1e's idea to test for the gene. Or you could go back on g for 3 months or whatever your doctor recommends, with the goal of having an endoscopy.

If I were in your shoes I would not go back to a regular diet indefinitely without looking back, but then I don't hear you say you're planning to do that.

Good luck, and let us know what happens.

[LoveIsntMade]

Both of my parents have been tested negative for celiac disease. I'm glad they don't have it, but that was just another reason for me to be skeptical.

The depression, yes, I still am on anti-depressants for it.

My periods are regular now.

As far as vitamins, my Dr. has me on: fish oil, magnesium, vitamin d, twice a day multi and zinc. I don't think I could stand to take more than that. I had blood work done a month ago and everything came back normal.

One of the hardest parts for me I think, is that I have yet to meet or even hear of someone else with absolutely no symptoms of celiac disease who has been diagnosed.

[tarnalberry]

If you look up the NIH's conference on celiac disease, and read their material, you'll find that even medical studies have shown that rather a lot of people are asymptomatic celiacs. Well, asymptomatic in that they don't think anything is wrong, but not asymptomatic if you kept them eating gluten for their life - significant internal damage is done.

There are plenty here on the board that are asymptomatic as well - some who were asymptomatic for a long time while gluten free, and eventually found they weren't so asymptomatic, some who really still don't feel symptoms when glutened. It's harder, in those cases, I think, to stay gluten free - because then you're not listening to your body, but rather a test. On the other hand, I might argue, just how closely do we really regularly listen to our body? If it was only whispering uncomfortable things at you now and again, would you hear it and recognize it as symptoms?

[shirleyujest]

Both of my parents have been tested negative for celiac disease. I'm glad they don't have it, but that was just another reason for me to be skeptical.

The depression, yes, I still am on anti-depressants for it.

My periods are regular now.

As far as vitamins, my Dr. has me on: fish oil, magnesium, vitamin d, twice a day multi and zinc. I don't think I could stand to take more than that. I had blood work done a month ago and everything came back normal.

One of the hardest parts for me I think, is that I have yet to meet or even hear of someone else with absolutely no symptoms of celiac disease who has been diagnosed.

Well your periods being normal is pretty significant esp. if you want to have kids someday (given celiac disease's impact on women's fertility). It sounds like you're very disciplined with the diet and supplements, and I know discipline feels like a yoke sometimes.

As to examples of asymptomatic celiac disease... There are quite a few of us on the boards who had no symptoms for a long time, then developed them and that led to the celiac disease dx. My only symptom from 20s-40s was MILD indigestion, yet in my mid40s my health just went in the toilet. I've seen enough improvements being gluten-free just a month or so to keep on with it. Unfortunately the autoimmune illness that came on is now with me forever, although I'm thankful for the opportunity to reduce the symptoms with a gluten-free diet. But that's just my scenario.

I'd reiterate that if you return to eating gluten without getting an endoscopy to check the villi, you'd be taking a pretty big gamble with your health down the road. But only you can decide what's right for you.