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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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    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
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