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Anything Else I Should Be Doing?

BlueFenris

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BlueFenris Newbie
BlueFenris
Posted

So I came across celiac disease completely by accident because I saw something about it and was curious so I looked up more info. As I was looking at stuff, I realized that the symptoms sounded a bit too familiar for comfort. I've struggled with anxiety, depression, bloating, constipation, and migraines for a long time. I also definitely have brain fog, I've had very low vitamin D test results, I've always been super pale, always tired, been very irritable, had major mood swings, insomnia, prone to canker sores, etc. The migraines became such a problem that last year I barely managed to pass my senior year of high school because I was having nearly daily migraines. We finally found a treatment that worked for a while but now the migraines are become more frequent again, and when I don't have a migraine I seem to have at least somewhat of a regular headache, and recently my stomach has been aching quite often too. So after seeing that all of these can be symptoms of celiac disease, I scheduled an appointment for Friday to talk to my doctor and have the blood tests done. I've got a list of my symptoms written down and am still on a gluten diet. Is there anything else I should do to prepare or does anyone have any pointers for me? On the one hand I hope it's not celiac, but on the other hand, if it is, a change in my diet could potentially change my life and take care of so many issues I didn't think were related to each other. 

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GFinDC Veteran
GFinDC
Posted

Hi,

If you are near a large city, you could look up a celiac support group now.  Contact them and ask if they know any good celiac aware doctors.  Many doctors don't seem to be aware of proper tasting processes.  If you do find a local celiac support group they may be able to help in other ways too.

Otherwise, it sounds like you are doing the right things so far.

BlueFenris Newbie
BlueFenris
Posted
  • Author

I do know there's a support group about an hour's drive from where I am. I'll get in contact with them! Thank you!

cyclinglady Grand Master
cyclinglady
Posted

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

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BlueFenris Newbie
BlueFenris
Posted
  • Author
1 hour ago, cyclinglady said:

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

Open Original Shared Link

Okay, I will be sure to request that! Thank you for the input!

BlueFenris Newbie
BlueFenris
Posted
  • Author

Update! Had my appointment today and the doctor said she was going to order a full celiac panel without me even having to request it! I was overall impressed with how well my doctor handled this and listened to my concerns rather than writing them off like some people's doctors have.

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    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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      Bob red mill gluten free oats

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