Retest? Or Try Diet?

[HelpinOhio]

Im a 18 year old male. Im not sure if I have Celiac Disease, but my mom does have Celiac Disease.

Ive been having a lot of problems for the past 7 years now, especially the last 2 years. I was tested for a lot of things and they all came back negative. They said I had some type of mental disorder like Depression/Anxiety. I do have mental symptoms, but that doesnt account for the 90% of other symptoms that I do have. Its a pretty long story. Anyways I realized how bad I was doing about 1 year ago and I started doing research. I went back to the doctor and got tested a few more times but they couldnt come up with anything. My mom told me that she had Celiac Disease after all this time, which she never even mentioned before. She hasnt been on the diet for over 10 years because supposedly it doesnt cause any symptoms for her. A lot of my symptoms match up perfectly with Celiac Disease, about 95% of them.

After I learned that it might be Celiac Disease, I went on a 90% gluten free diet for a few months, then I got tested for Celiac Disease for the 1st time. It came back negative and said I didnt have Celiac. I had no idea you had to eat gluten before the test. I didnt know this until right before the 2nd time I was tested. I ate bread for 2 weeks before the 2nd test and it came back negative again. Keep in mind before those 2 weeks I had still been 90% gluten free for over 4 months. Only when I was completely gluten free did I start to feel better, which I could only do for a few days. Anyways Ive been eating gluten now for a couple months and feel pretty bad. Ive been eating a lot of it because Im planning on getting tested again. Im pretty sure that I have it, but I want to have proof that I have it and everyone will know and believe me and Ill know for sure. I dont know what to do. Im very frustrated.

Do you think I should get tested again?

or should I just try the diet?

[Gfresh404]

It's interesting, your story is nearly identical to mine. I'm 18, was eating little wheat and tested neg. twice for Celiac, including biopsy. But had a huge positive dietary response. Sure it would be nice to know for sure whether I have Celiac or what. But as far as I am concerned non-Celiac gluten intolerance is good enough for me. A lot of people think that non-Celiac gluten intolerance is simply Celiac in the early stages and that it is essentially Celiac, it just not mean the current diagnostic material. We still don't know a lot about Celiac: just 30 years ago Celiac was thought to be very rare, now it is nearly as common as 1 in 133.

Just because your immune system is not reacting to gluten or that there is visible damage to your gut does not mean that other parts of your body are still being damaged by gluten: just look at all the diseases related to the improper treatment of Celiac.

[mushroom]

Anyways Ive been eating gluten now for a couple months and feel pretty bad. Ive been eating a lot of it because Im planning on getting tested again. Im pretty sure that I have it, but I want to have proof that I have it and everyone will know and believe me and Ill know for sure. I dont know what to do. Im very frustrated.

Do you think I should get tested again?

or should I just try the diet?

I would say that now you have come this far and suffered for two months, you might as well stick it out and get tested; that way you will never kick yourself for not following through. From reading your post it seems like you did not really have the motivation to stay gluten free without know whether or not you were celiac.

If your testing does come out negative after all that you can still try the diet, but you can't get tested when you're gluten free.

[HelpinOhio]

Thank you both for the responses, and I hope to get some more replys.

My decision as of right now is to continue eating an increased amount of gluten/wheat for the next couple weeks, then Im going to get another blood test for it, and whatever other tests they have for Celiac Disease. Ive been eating a few gluten products everyday for the past 3 months or so, and 1 week ago I started eating +4 pieces of wheat bread a day added to whatever else Im eating to make sure. After I get all the tests done, regardless of the results, Im going to go gluten free. Im almost positive that Ill feel better as the less gluten I eat it seems the better I feel, especially true when completely gluten free. I feel that I really need the proof though. I would really like for the results to come back positive for Celiac Disease, then I would go gluten free, and everything will work itself out. At least thats what Im hoping will happen.

If everything does work out this would be a huge relief to me. As Ive said Ive had some serious mystery illness for 7 years now if not more. The past 2 years have been the worst. Ive been stuck in my house most of the time for the past 8 months. Im too sick and look too sick to go anywhere. Ive been out a few times, but I always feel so bad. I have many symptoms. Im frustrated and sad because Ive missed out on the majority of my childhood. I was there, but not all the way. I didnt experience most of it fully. It was like being in a fog, or a waking bad dream. Theres no way I can get back that time, but it would be such a relief if everything turns out good, I go gluten free and I finally get on with my life. It might sound weird to some, but Im just hoping those results will come back positive.

[ravenwoodglass]

If everything does work out this would be a huge relief to me. As Ive said Ive had some serious mystery illness for 7 years now if not more. The past 2 years have been the worst. Ive been stuck in my house most of the time for the past 8 months. Im too sick and look too sick to go anywhere. Ive been out a few times, but I always feel so bad. I have many symptoms. Im frustrated and sad because Ive missed out on the majority of my childhood. I was there, but not all the way. I didnt experience most of it fully. It was like being in a fog, or a waking bad dream. Theres no way I can get back that time, but it would be such a relief if everything turns out good, I go gluten free and I finally get on with my life. It might sound weird to some, but Im just hoping those results will come back positive.

I am glad you are going to be going gluten free no matter what your results. Posts like this make me so sad because of the memories they bring. My kids had issues throughout their childhoods also and I was so very sick that they really didn't have much of a childhood. When they started having symptoms it was attributed to worry that I was dying of some unknown illness. They weren't even tested until I was finally diagnosed, 15 years after the most serious symptoms I had showed up. Some of us just don't show up in blood work, the NIH estimates 30% will show a false negative on blood tests. The diet was very much like a miracle for me and they were both diagnosed only after they finally diagnosed me because they were never checked for it. They both had a low postive on the blood work. Do make sure you get your hands on the actual test results, if you live in the US you have a legal right to see them and get copies. Once you get them in your hands be aware that even one point into the positive range is positive. Some doctors will call a low positive a negative.

[Mother of Jibril]

This is great advice!

The one thing I want to add is that the numbers for a "positive" result are set pretty high... you can wrack up some serious damage on the way to a positive result. There's a lot of gray area between positive and negative. A lot of doctors and patients blow it off because they think the gluten-free diet will be "too hard."

IMO, if your body is making ANY amount of antibodies to gluten... that's not healthy. Why wait until you test positive? It sounds like you've already suffered enough.

[HelpinOhio]

Again, thank you for the replys.

Ill be making posts on this site occasionally for a while to keep everyone up to date and to ask any questions that I have, and I do have a lot of questions. It seems that even though Celiac Disease (or whatever I have) basically took 7+ years of my life away, it could have been a lot worse. Of course I wish I would have known about it 7 years ago, but Im glad I found it as Ive heard stories of people having it most of their lives and never knowing about it. ravenwoodglass its sad that it took that long for you to finally know for sure what was wrong with you. I hope everything is going well now.

Im still planning on going through with eating the gluten and then getting the tests done. I have had several moments in the last week where I thought it might be better to just go on the diet. It seems like this added gluten is taking a toll on me. Its proof to me that the gluten is effecting me in a negative way. Ive been pretty tired and out of it, odd feeling. Also nausea, bloating, complete lack of interest in things. I went 7 years though, 3 weeks shouldnt be that difficult. I just hope everything turns out as planned. Im looking forward to those tests coming back positive, or at least going gluten free whatever the results are. In my case I have a feeling like itll feel like waking up to a beautiful world from just a bad dream.