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Hi From A Newbie

Trev

By Trev
in Coping with Celiac Disease

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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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      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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