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Just Diagnosed

markr

By markr
in Coping with Celiac Disease

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markr Newbie
markr
Posted

I found out a few days ago that I have celiac. In addition I have Type 1 diabetes for the past 26 years, so as you can well imagine, special diets have been a part of my life for quite some time. Originally from the USA, I have been living in Israel for over 20 years. I look forward to your helpful advice and support.

Mark

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happygirl Collaborator
happygirl
Posted

Mark,

Welcome to the board! I hope that you stick around and find this forum useful. Let us know what we can do to help.

Best of luck,

Laura

nutralady2001 Newbie
nutralady2001
Posted

Welcome Mark! Glad you found us

HAK1031 Enthusiast
HAK1031
Posted

Welcome Mark! Eating gluten-free in Israel isn't bad. I went a year ago (before I was diagnosed) with my brother, who also has celiac, and he didn't have a hard time. We didn't buy any specifically gluten-free stuff, but restaurants were all pretty good. We were a tough group- my cousins, who have life threatening nut and egg allergies, were also with us. And very few of us spoke any useful Hebrew! Welcome!

markr Newbie
markr
Posted
  • Author
Mark,

Welcome to the board! I hope that you stick around and find this forum useful. Let us know what we can do to help.

Best of luck,

Laura

Thanks. Careful when using the phrase "stick around" :D I use an insulin pump. The best defense I have against the many medical problems I have is my sick sense of humor, and no one is going to take that away.

Mark

markr Newbie
markr
Posted
  • Author
Welcome Mark! Eating gluten-free in Israel isn't bad. I went a year ago (before I was diagnosed) with my brother, who also has celiac, and he didn't have a hard time. We didn't buy any specifically gluten-free stuff, but restaurants were all pretty good. We were a tough group- my cousins, who have life threatening nut and egg allergies, were also with us. And very few of us spoke any useful Hebrew! Welcome!

Even though I have been living in Israel for over 20 years, my Hebrew is not very good either. Fortunately, my wife is Israeli, and every time I do speak Hebrew, my accent is so strong people that don't know me want to practice their English. Given the fact that I live on a kibbutz also makes life easier for me.

Mark

CMCM Rising Star
CMCM
Posted

Welcome Mark! Avoiding gluten isn't so bad, and you can learn to make breads etc. if you want to eat them. I'm sure the necessary ingredients are readily available in Israel!

Going gluten free may also improve your diabetes....probably type 1 is never eliminated, but the severity of it could definitely improve.

Ask lots of questions here, people are always generous and helpful.

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Guest lorlyn
Guest lorlyn
Posted

Hi Mark and welcome :) Hope you have a healthy year.

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    • Samanthaeileen1
      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.
    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      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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