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Relief With Hearing Celiac Disease***


DebVendz

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DebVendz Newbie

***NOW, that's not to say I'm happy with having Celiac Disease, but I had convinced myself I had cancer, so after my colonoscopy and endoscopy, and the celiac disease diagnosis, I'm ready to begin my new way of eating, shopping, living! So my first question is, is there a Celiacs "go to"

book that universally is suggested?? One with recipes, shopping tips, healthy living advice?? I'm sure there are many, but would love any suggestions to help get me started....thanks everyone


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kareng Grand Master
nvsmom Community Regular

Welcome.

 

There are lots of good celiac books and gluten-free cookbooks. I would raid your local library.  :) I personally liked Greens' book The Silent Epidemic (I think). Just avoid books by celebrities.  ;)

IrishHeart Veteran

I am one of the few who said "Oh thank God...I've got Celiac Disease! whew!". too ( It stopped the madness and the slow dying thing.  ^_^ )

 

WELCOME to the family! 

 

After you peruse that Newbie 101 thread, may I suggest you read

 

Real Life With Celiac Disease

by Melinda Dennis and Daniel Leffler

 

Anything you want to know is in there. Over 50 articles by celiac experts who explain everything from the disease itself to follow up care

to dietary advice and cross contamination concerns and supplements that may be helpful.

 

and

 

Celiac Disease: The First Year by Jules Shephard.

 

She also has a website for cooking tips

 

Open Original Shared Link

 

and I really like these bloggers' recipes.

 

Open Original Shared Link

 

Open Original Shared Link

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    • Samanthaeileen1
      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? 
    • Wheatwacked
      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
      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
      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. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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