Help With Testing And Diagnosis Questions

[maggien]

Hi,

I'm starting to believe I may be celiac, but as I am living wheat free currently, I'm not sure I will be able to maintain a gluten challenge for six weeks to be tested. I am confused as to what to do, and after 11 years of symptoms I am really ready to find out what is going on in my body.

These are my symptoms:

Age 13 - started to "get sick" often, I didn't track specific foods, I just dealt with it.

Age 15 - diagnosed with Anemia due to extreme fatigue, weakness, and dizziness to the point of fainting.

Age 17 - diagnosed lactose intolerance. I get stomach pain, gas, bloating, and diarrhea immediately after eating dairy. I also started to notice that I bruised easily, and would often have unexplainable bruises.

Age 20 - I started to feel "down" all the time. I had fatigue, weakness, depression, nausea, bloating, gas, diarrhea and/or constipation, nose bleeds, cramping, my anemia worsened, dizziness upon standing, tunnel vision and just felt bad.

Age 21 - Diagnosed with IBS. I never really believed this, as my doctor did no testing, and it seemed like she was telling me something to get me to go away. I was told to eat more fiber and avoid fatty and rich foods, which I did. I saw no improvement in my symptoms.

Age 22 - I started to get sick after eating anything except water. My doctor told me I was overreacting and wouldn't test for anything. I went to a naturopathic doctor and was put on a yeast cleanse, as I was told it was an issue with my gut bacteria that was causing the constant sickness. This helped allow me to eat regularly again. She confirmed my lactose intolerance and told me I was wheat intolerant and sensitive to soy, vinegar and sugar, among many other environmental allergies that I knew of (hay fever, pollen, cats etc). After this I went wheat free and it helped a lot. My symptoms seemed to improved, though that feeling of being blah never went away. I occasionally cheat and eat wheat, and I get sick when I do, which I just figured I would have to live with when I gave into my cravings. As wheat intolerance has no real consequences beyond the immediate sickness, it was sometimes worth the pain to get to eat real bread again

Age 23 - My symptoms started to worsen again, especially nose bleeds, bruising with the slightest pressure (I can't hold hands with my husband anymore, and tight hugs will leave me with black ribs), no energy, extreme fatigue and weakness. I often need a nap to get through the day. I have started to experience joint pain in my hips, neck and back. I have always gotten canker sores but am getting many more, much more often than ever before. My stomach issues are getting worse again, even when I don't eat wheat or dairy. I have tried to track and it is often associated with oats, rye or processed foods, but I haven't been able to track it as closely as I would need to to say this is for sure.

Other than this, I am a relatively healthy and active young woman. I had never looked at all my symptoms together before, until coming across a celiac association booth at an event recently, which made me start to look at the whole picture instead of all my symptoms separately. My husband read the list of symptoms and said "that sounds just like you" which has lead us to research this further. I would love to have a conclusive diagnosis, but I just don't think I'd make it through a gluten challenge to get a positive test results. And, honestly, I would like to feel like a normal person again regardless of what my doctor thinks and what a test says.

My research seems to indicate celiac, but as those who have gone through it, do you have insight on what else it could be? Any other things I should check for? I am considering going gluten free and seeing what happens, but I could use some help before I make such a significant dietary change.

Thank you so much for any help or guidance you can give me.

Maggie

[starrytrekchic]

Well, you don't have to do the testing, if you don't want. If there are any benefits--like being able to show family members with similar symptoms that you've been diagnosed so they might be tested--then you might want to go through with it, but plenty of people on this forum have never been officially diagnosed.

You could take the gene test. 25-30% of the population has a gene for celiac, though, so this isn't conclusive or diagnostic, but it might help, especially if you came back with something like double DQ 2.5, which would indicate a high risk. You wouldn't have to change your diet for this, and you could do it at any point.

You could go ahead and get the bloodwork (and endoscopy) done now. You'd have a high chance of a false negative, but you might still test positive. You could try the bloodwork now and, if it comes back negative, decide whether or not to the gluten challenge.

Or you can just stop eating gluten and see what happens. A positive response to cutting it out is really the best test.

Of course, you should really consider having further testing done to eliminate similar things like Crohn's, Ulcerative Colitis, bacterial overgrowth, etc.