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Hi From A Newbie

Trev

By Trev
in Coping with Celiac Disease

Recommended Posts

Trev Newbie
Trev
Posted

Hi all :rolleyes:

I'm new here. Diagnosed at the end of last month and just about getting to grips with a new diet! I've found it a bit dauntin, I have to say but I've a lifetime to get used to it I suppose. No doubt, I'll be looking in here pretty regularly.

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Viola 1 Rookie
Viola 1
Posted

Hello Trev; Welcome to the forum!

You can generally get most questions answered here as we have a wonderful and wide variety of people here.

It's just like a big city of gluten free friends :D

missy'smom Collaborator
missy'smom
Posted

Welcome!

happygirl Collaborator
happygirl
Posted

Hi Trev,

Welcome to the board! I am happy you have found it...it is the best resource out there for education, food/ingredients, support, recipes, and dealing with Celiac.

Although it really is daunting to start with, the good thing is there are a ton of people on this board! And we all started where you are. The other good news, is that while it is tough to get the hang of it, once you "get" it, then its just maintenance. Celiac is a steep learning curve, but after that, you know enough to make good decisions.

Let us know what we can do to help, and hope to see you around more often!

Laura

Guhlia Rising Star
Guhlia
Posted

Welcome to the forum!!!

Guest aparde
Guest aparde
Posted

Hi! Welcome to the boards... I am new here too! My daughter was diagnosed about 4 years ago and my dad also has celiac. You have come to the right place!

mouse Enthusiast
mouse
Posted

Welcome to the forum. Just remember that we never consider any question a dumb question. We have been there, so don't be afraid to ask.

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PeggyV Apprentice
PeggyV
Posted

Welcome! Lots of good information here.

lonewolf Collaborator
lonewolf
Posted

Welcome! I hope you find the forum helpful!

jlinc Rookie
jlinc
Posted

Hi Trev,

Welcome, welcome! If I have a problem with my condition, I'll often come here before I go to my Dr. (I know, it's not what the AMA would advise!) but I've learned much of what I needed to know by hearing other people's stories here. Lots of great support! :D

See you around the board!

Josh.

Trev Newbie
Trev
Posted
  • Author

Hi again. Thanks for all your messages of support - I'll be looking in here very frequently.

I should say that I'm in the UK (where we spell it with an o - coeliac: don't ask me why :huh: ) We have a national charity - Coeliac UK but I'm not aware of a board like this one. So, I hope you don't mind me dropping in!! Not sure abouts in the US but here, I at least get help with the costs involved. By buying an annual prescription for

Tritty Rookie
Tritty
Posted

Hi and welcome! I am new here too - just diagnosed in mid-Jan. I found out the other day that we get a tax deduction for gluten-free food as a medical expense. Yea!

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    • trents
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
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      Labs ? Awaiting in person follow up with my GI

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      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
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      Labs ? Awaiting in person follow up with my GI

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      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
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