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diagnosed yesterday, new to this


101

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101 Newbie

First off, this is something I didn't even consider was wrong with me. I'm 23 years old. 

Been having awful digestive & stomach problems for ages now, got biopsy done and the results were Celiac. I'm still getting tested for any other issues, but this is the first solid diagnosis and explanation I've gotten for why I feel so garbage all the time and why I've been in so much pain. At first I thought a lot of the horrible symptoms I was experiencing was due to being a smoker, so I quit nicotine 100% but still was having the horrible symptoms I was experiencing.

It sucks, I feel hopeless currently but also a but apathetic. I'm happy to at least have an explanation, but now I have to work on healing my body and getting better. I've been out of work for months now due to the pain, I'm underweight and have lost a ridiculous amount of weight through this entire thing, and I can barely think. Some days I can hardly form a coherent sentence the brain fog is so bad. I just want this all to be over with already so I can get back to living, go back to work and join the real world again.


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trents Grand Master

Welcome to the forum, 101!

How long have you known from the biopsy that you have celiac disease? Have you started the gluten free diet yet? There is a real education curve tied to that. It's not hard to avoid the big sources of gluten such as bread and pasta but it's the unexpected ones and the little ones that trip up newbies. Gluten is found in so many processed food products where you would never expect it to be. Like soy sauce and tomato soup. And then there is the whole issue of cross contamination where food items may be naturally gluten free but come into contact with gluten from other foods, cooking surfaces, etc. Eating out is very risky because even though you order something that should be gluten free by the nature of what it is, back in the kitchen it has been cooked in the same pans and on the same grills as gluten stuff. Wheat starch can be in seasonings, pills and supplements. This might help:

 

Scott Adams Grand Master

Welcome to the forum!

It seems like quitting smoking, in your case, was a positive side-effect of having celiac disease. Hopefully you can continue on as a non-smoker.

I think you've got a great attitude about this, which is more than half the battle with regard to staying gluten-free, and I had the same attitude after I was diagnosed. I had been so sick for so many years, and had spent so much time, money and effort trying to figure out what was going on with me, that when the diagnosis finally came it was pure relief...I could do a gluten-free diet, no problem, in exchange for feeling 100 times better!

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    • Rejoicephd
      Oh I have 2 dogs. And I just looked up the ingredients in their food and it does contain barley as a main ingredient. Maybe some other things too that aren't helpful but barley just caught my eye on a quick look.  And yes I spend lots of time with them, they're always cuddled up on me. I even have wondered before if I was allergic to them and I take Allegra at night out of some thought that maybe I was allergic to them (but I've never confirmed that).  Wow. This is very interesting. I could try putting them out on some grain-free food for a month and see if that helps. Thanks for the tip!
    • Heatherisle
      Hi Thanks for answering so quickly. Not sure about any other blood tests, all I have is a copy of what my daughter sent to me. Hopefully she’ll get the biopsy soon cos she’s really anxious about the whole thing, but she tends to have a lot of anxiety anyway and has done for a long time
    • trents
      Welcome to the forum, @Heatherisle! Yes, not uncommon for multiple celiac antibody tests to not agree. The Endomysial IGA was the first antibody test developed to detect celiac disease. It is expensive to run and has largely been replaced by the tTG-IGA. But some physicians, particularly those who have been in practice for awhile, still order the EMA. It's a good test. Was there a "total IGA" test run to check for IGA deficiency?  
    • Heatherisle
      Hi  New to this so bear with me!!! My daughter was told a few years ago she probably had IBS but been feeling generally worse lately Recent IgA TTG Ab blood test indicative of coeliac at 19 U/ml but Endomysial IgA Abs negative. Awaiting appointment for biopsy , so was wondering if anyone else has had these differing results. Thank you
    • lehum
      The article was shocking - and horrifying - to read. For me it’s a good argument to cook as many fresh foods as possible. I personally can’t do grain free because I lose weight too quickly and don’t feel full, but I will be sticking to companies I trust like Lundberg for rice.    I live in Germany and thankfully, labeling here is more transparent and more trustworthy than it appears to be in the U.S. these days (where I’m also originally from).  I am so sorry to hear this! May you heal quickly. ❤️
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