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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
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
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      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
    • numike
      Check out this celiac story  I was diagnosed early 2000s with the blood test  since then I have for the most part maintained a gluten-free diet  Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc and quickly consumed two hamburgers. I promptly ate both of them and had absolutely no problem since then I've been eating plenty of gluten  Is my celiac gone?  Insert: No, celiac disease cannot just end because there is no cure for it; however, a strict, lifelong gluten-free diet allows the small intestine to heal and symptoms to go away. To manage the condition effectively, you must strictly avoid all sources of gluten, including wheat, barley, and rye, which are common in the American diet. Sticking to the diet can lead to significant symptom improvement and intestinal healing, but it requires ongoing commitment and monitoring with a healthcare professional  Regarding medical test I had My stools analyzed Giardia Ag Cryptosporidium Ag and they came back negative  I had the lactulose test and it came back high so I'm on two weeks of heavy antibiotics That still has not stopped me from eating gluten. Here's what I think is going on and I hope to have your opinion regarding it  Since I've been gluten-free for so long my intestinal tract has repaired itself consequently anything I eat with gluten now just bounces right off with no damage to my gut  however  when I asked AI what was going on the reply was celiac has not gone away and  if I continue to eat gluten I'm going to have problems   I look forward to your sage advice as to what the heck is going on with me Thank you for reading Mike 09112025
    • Scott Adams
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