Just Been Diagnosed - Questions, Comments And Thanks

[calico-drive]

Hi there,

I'm a 32 year old female living in Australia. I was just diagnosed with celiac about 10 days ago by biopsy, following a positive blood test in December.

First of all, thanks to everyone for all the great advice on this forum - although this is my first post, I have been lurking for a couple of months, ever since I first really started to believe celiac could be my problem, and you have really helped me on my journey.

Potted history: Diagnosed with Chronic Fatigue Syndrome when I was about 15. Digestive issues (bloating, flatulence, diahrrea/constipation, reflux) really got noticeable when I was around 20. Dr was of the opinion that it was probably normal, or within the bounds of. I asked about celiac when I was about 25, but was told no way would I have that (don't remember the exact conversation, but that was the bottom line). About 6 months ago my boss was diagnosed with celiac and after talking to her I started doing more reading, and finally took myself to a Dr (not my regular) and asked for the bloodtest. She was fine with that, which was awesome ("You want the test? No problem - just let me fill out the form!"). It came back borderline positive and, after a little pushing from me, she referred me to a specialist. He thought my numbers looked 50-50 for celiac, and worth doing a biopsy. Result of which he found damage to my intestines that was bad enough he could see it himself during the test.

So now I'm just venturing into the world of eating gluten free. I'm mostly happy/relieved to finally, finally have an answer. I do feel kind of angry/sad though, that it has been so long (although I know many of you have had to wait much longer for a dx) - I just feel like so much of my life to this point could have been different if my issues had been taken seriously sooner.

A short list of things that I wonder if could be related (very interested to see what does and doesn't resolve on a gluten-free diet - would love to hear from others who may have had similar issues): Digestive issues, extreme fatigue, mental fog worsening dramatically over past few months, terrible short term memory, trouble concentrating, dry skin, sores that take forever to heal, flaky skin, uti-like symptoms that show nothing on cultures, night sweats, general high body heat, anxiety, sinus issues, seasonal allergies, crying for no reason, irritability, rage, sensitivity to 'loud' noises that no one else thinks are all that loud, dry and splitting lips, social phobia, and probably some other stuff.

I doubt it's all celiac, but even a couple of them would be fab!

I am really wondering how long it will take to feel some improvement, especially the mental aspects. Right now I'm waiting for blood test results to check my iron and other vitamin/mineral levels, so I don't yet know what deficiencies I may have.

Anyway, I would really appreciate any advice anyone has to offer. And otherwise, I do just really want to say thank you for all the great tips and help I've received so far. You all have really helped me a lot

[dhd2000]

Hello and welcome. I had quite a few of the symptoms that you listed. Most have resolved on the gluten fee diet I think things would have been different for me too if I had been diagnosed earlier, but there's no point in looking back, so just focus on healing and improving now! I had extreme fatigue, mental fog, trouble concentrating, sores and a rash that itched terrribly, repeated uti-like symptoms, anxiety, sinus issues and lots of canker sores in my mouth.

I felt better very quickly, but it took awhile for all of the symptoms to fade. I was also vitamin D deficient, so I started taking D and B12, those really helped. Good luck to you!

Dee in NC

[BrittLoves2Run]

I have A LOT of those symptoms too. I was just diagnosed two days ago. Today is my 2nd day Gluten free. I can't wait to see if a lot of these problems go away. Good luck to you!

[lucky28]

I have been gluten-free for only 5 months~I have noticed alot of my non~gi symptoms getting better and better since going gluten-free. my anxiety level has gone down ALOT! my insomnia and brain fog are almost gone, my short term memory has improved as well as my energy level.

Good luck and Welcome!

[navigator]

Welcome. I could relate to a lot of your post. I was 53 when I was diagnosed. It's almost 9 months since my diagnosis and there is such a difference to my life. A couple of months I had a 'wow, this must be how everyone else feels'. The worst things for me was the fatigue,brain fog and joint aches. I'd had them since I was a school child but thought that everyone felt like that and felt 'weak' that I couldn't cope as well as them. I now realise that I also suffered from anxiety as my palpitations have now stopped. Again I had these from childhood and about 10 years I was diagnosed with a heart murmur and possible angina. Would you believe that I no longer have a heart murmur! I'm assuming it was just another misdiagnosis.

Anyway, now to the positive stuff. Although I was overwhelmed when I was first diagnosed and every shopping trip took 4 times longer than ususal - now I don't even feel it's a big issue. It's my lifestyle now and is second nature. I no longer spend time missing the things I can't have. I have to say it was only after my health improved that I felt like this. The pay off was so good that you couldn't pay me to now to eat the things I was missing.

Stick with it, use this forum for support and you'll get there.

[Kjas]

Digestive issues, extreme fatigue, mental fog worsening dramatically over past few months, terrible short term memory, trouble concentrating, sores that take forever to heal, flaky skin, night sweats, general high body heat, anxiety, sinus issues, seasonal allergies, irritability, sensitivity to 'loud' noises that no one else thinks are all that loud, dry and splitting lips, social phobia, and probably some other stuff.

I'm also from Aus and all the above you have mentioned have been the normal for me too, It's getting better now, although I'm 3 months in now. Although I'm still losing heaps of hair and still have bad days but I'm partially functional again now. I think you will find the large majority of these things will resolve once your body heals itself.