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Do Your Sxs Get Better


Specky

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Specky Newbie

Hi!

I'll try to keep this brief.

I lost all of my hair in 2001 (ALL of it). In 2003 I had white thing sparing hair grow back.

Since then I have black(curley)/white(frizzy straight) hair that is real thing with lots of baldspots, but most I can hide. (I used to have very thick wavy auburn hair).

THis past March, I found a dr. that seemed genuinly interested in my 'weird' sxs and did some blood testing that said more than likely I have celiac. I decided to try gluten-free, and within 2 weeks felt amazing! I didn't realize how bad I was feeling.

Since then I've been mostly gluten-free, but did did have some rebellion time, to which I'm paying for now.

But here is my question:

If any of you has had hairloss, did it come back once on the gluten-free diet, how long did it take?

I have severe bone loss in most of my joints (I"m not an athlete, but deal with really bad joints)..did this get better if you had it?

THe dr. has said my vitamin D was low, but I'm not on any suppliments other than calcium chews twice daily and a multivitamin.

I have so many more questions, but I'll leave at this for now.

This has been such a process for me, part of me is in denial because so many physicians over the last 10 years have told me all my 'wierd' sxs were 'stress' related...which was odd to me, as I'm not stressed out. I walk into this dr's office and one look at me he says it's gluten...I was quacking all the way back home...but I thought I'd give it a try and it seems to be accurate, but I still question...how did he know? I'm overweight, not underweight, and why couldn't the 8 dr's i've seen already diagnosis this??

Ok, I'll stop here (really this time). I'm really excited to be apart of this board, and can't wait to learn from all of you!

Rebecca


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shivermetimbers Newbie

I started losing hair around the age of 15. In my mid-twenties I saw doctors about it and had bloodwork done with no results. They said it was just male pattern baldness. I could have lived with that but I developed patches of very scarce hair on the sides and the back of my head, like sufferers of serious diseases. Which I kind of was in hindsight.

I couldn't pay much mind to it after that because I had to deal with lots of other more serious gluten related ailments. Anyway I went gluten free two years ago. One year ago my sister remarked that the almost bald streak at the back of my head wasn't so bad anymore. By now the patchiness is almost gone. I still have light hair on top of my scalp and don't expect to ever have full hair again. But there was definetely an inprovement, as noticed by others.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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