Low B12, Tinea Veriscolor, Gluten Problems?

[hazelbrown10]

Hi everyone,

I'm glad I found this forum! Hopefully you're not all sick of reading "what's going on?" type posts.

I have suspected gluten problems for a few years now, after having all the usual symptoms - tummy aches, digestive issues, fatigue, fuzzy head, need to eat all the time. I first noticed these problems in 2006 after going through the worst cold ever, or perhaps it was bronchitis. In 2008 I went gluten-free for a summer (and felt awesome!) and during that time had the tTG test done and the doc said "no celiac!" Cool, so I ate gluten again. Now I know that I should have been eating gluten at the time of the test, so the doctor was wrong to say it didn't matter. The result was 1, so "negative" level. I just found that out by going to the office and asking for a copy of the test last week.

Two years later I am still feeling the same, but the fuzzy head and hunger is the worst now. Believe it or not, only the gynecologist actually cared about my symptoms, which also include tingly fingers/feet. She ordered iron and B12 levels taken, iron was normal but B12 was only 277. So she says take supplements, which I am doing. I have also had what a nurse said is "tinea versicolor" on the sides of my trunk for about a year, and no prescription shampoos or even tea tree oil got rid of it.

This summer I went gluten-free again, and within days all of my symptoms are gone except foot tingling, and the tinea versicolor is almost gone too! That's what has surprised me the most, since it has stubbornly remained no matter what I did before going gluten-free.

I am wondering what you guys think - should I go back on gluten for a month or so, and then insist on the complete celiac panel? I'm aggravated that my doc thinks being gluten-free is OK for the celiac tests, AND that she only ran ONE test! I have read about being IgA deficient, but since she didn't order the total IgA I don't know if that's a possibility or not. Arg! Coupled with the low B12 - and I'm only 26 and NOT a vegetarian or dairy-free! So why would that happen? - and tinea, I think the doctors should be trying harder to figure out what's going on. I don't even know if my doctor knows about the tinea OR the B12, since I was examined by different people for those. Modern medicine is bumming me out!

I will continue to be gluten-free after the tests no matter the results, but what I've heard about risks for other autoimmune diseases if it IS celiac, I'd just rather know for sure.

Thanks for any advice! You all seem much more informed than my doctor

[ravenwoodglass]

Only you can make the choice to gluten yourself for testing. You would need to go back to a full gluten diet for 2 to 3 months for testing. If you see a recurrance of your issues when you add gluten back in then you really have your answer, IMHO. You still may have a false negative result on the testing even after the challenge.

While once we have one autoimmune disease we can have a tendency to develop others I think your chances do go down if you are celiac and compliant with the diet. Not saying you never would develop another for sure, some of us do.

[elainer]

You can get a stool test done for Celiac without going back on gluten, by going to enterolab.com. This is what my son & husband used because our Dr's do not know anything about celiac, and didn't believe the symptoms my son was having had anything to do with celiac. I was diagnosed 5 years before them by a holistic Dr. who is no longer practicing. She is the one who told me about the site. Hope this helps.

[sherrylynn]

Don't know if this will help, but my mom had Tiena versachola and she had it for more than 10 years. It finally went away after she had to have chemotherapy for breast cancer. It has not come back since then. She was told that it is a fungal infection but tea tree oil and selsun blue did not help it go away.

I don't recommend going on chemo to get rid of it though. The chemo ruined her memory.

[hazelbrown10]

Hi everyone,

Thanks for the comments. I will post an update if the doctor says anything useful, which hopefully she will. In the meantime I will remain gluten free

Tinea versicolor... it's a weird thing. It's not gross or anything, just THERE... inexplicable! Tea tree oil didn't work for me either, though it smelled like it was strong enough to kill anything