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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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