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Help! New Celiac Still Having Reactions


JDMurray

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JDMurray Newbie

Help!

I was recently diagnosed with celiac disease and am now on a 100% gluten-free diet. I


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Lisa Mentor
Help!

I was recently diagnosed with celiac disease and am now on a 100% gluten-free diet. I

Takala Enthusiast

Do you know if you are lactose (milk sugars, found in fresh unaged milk products) intolerant, dairy intolerant, or casein (milk protein) intolerant ?

Since you were recently diagnosed, you may go thru a phase where you find you cannot digest dairy products, as you heal up internally, this ability may come back to where you find you can once again eat some dairy, some lactose free dairy like aged cheese or certain gluten-free yogurts. Or you might be sensitive to all cow dairy products.

Check the butter for "natural flavorings." I only used cultured organic butter. I still tend to use olive oil as much as possible instead of butter.

The second most likely culprit from the list is the roasted sunflower seeds. I don't know what they really do at these roasting facilities, but it seems like they run the sunflower seed roasting oil thru a vat of wheat crumbles before using it, because I have always reacted to roasted sunflower seeds, much to my disgust. I also know to avoid things like roasted peanuts in sunflower oil. I thought I had a peanut problem for years, tried eating naked raw peanuts and no reaction, got a little braver and just recently in the past month ate thru 2 jars of expensive peanut butter made of nothing but peanuts, marked Gluten Free right on the label with no problem.

For the vinegars, in the beginning, if you suspect them, try using plain real 100% apple cider vinegar, not flavored vinegars.

Also, you want to replace some of your kitchen wares like wooden or plastic (ick ! ick ! ) cutting boards, wooden spoons, colanders, toasters (put the nasty store bought rice bread in the old toaster, WHOOPS guess what you just did ), put the cutting knives in the old wooden holder, etc, and you run the risk of cross contamination.

Also watch what sort of hand lotions you OR another family member could be using before they touch your food.

If you have pets, always wash your hands after touching their stuff, unless you have them on gluten free foods, too.

Keep in mind that not every gasto illness is going to be a glutening, as there have been incidents of lettuce and other vegetables being contaminated with bacteria.

I hope you figure it out.

kenlove Rising Star

Hi

I would question the beef stock.

---from their web site---

Kitchen Basics Beef Flavor Stock is slow cooked from or with:

Beef bones

Carrots, onion, leek, tomato and garlic

Natural flavor

JDMurray Newbie

Thanks everyone for the great information and suggestions! I greatly appreciate your time and expertise. Thank you!

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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? 
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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
      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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