Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ugh ... This Time It Was Milk That Got Me


llama3

Recommended Posts

llama3 Apprentice

I haven't been around here for a while because I've been feeling SO much better after completely cutting out gluten. So yesterday I got overly optimistic. I've been eating yogurt with no problem (but no other dairy), and I thought I would try some goat milk (which is supposed to be easier to digest - maybe that's a myth) and see if I tolerated it. I did NOT. 36 hours later I still feel really really miserable, though at least the diarrhea has stopped. My glutening symptoms are more neurological although there is some GI stuff too. I just can't believe how much my stomach hurts right now.

Somebody tell me how to make it better. :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Chris Anne Newbie

I haven't been around here for a while because I've been feeling SO much better after completely cutting out gluten. So yesterday I got overly optimistic. I've been eating yogurt with no problem (but no other dairy), and I thought I would try some goat milk (which is supposed to be easier to digest - maybe that's a myth) and see if I tolerated it. I did NOT. 36 hours later I still feel really really miserable, though at least the diarrhea has stopped. My glutening symptoms are more neurological although there is some GI stuff too. I just can't believe how much my stomach hurts right now.

Somebody tell me how to make it better. :(

Wow! I go to my Digestive Doc next week and besides the Celiac I gotta ask him about the Dairy too. I'm on 2nd day of stomach pain and diarrhea. This is horrible. I hope the best for you.

llama3 Apprentice

Wow! I go to my Digestive Doc next week and besides the Celiac I gotta ask him about the Dairy too. I'm on 2nd day of stomach pain and diarrhea. This is horrible. I hope the best for you.

Thanks. I don't know if it's the casein or the lactose. I hope you figure out what's going on with you.

FruitEnthusiast Enthusiast

Hi! Have you ever tried coconut milk? I think it's really delicious, and it's opaque white so it really looks like milk. The taste is very mild, and doesn't taste like coconut at all. My favorite brand is "So Delicious" (original flavor). Makes great smoothies too. It probably works great in recipes too, but I haven't had a chance to try that yet.

llama3 Apprentice

Hi! Have you ever tried coconut milk? I think it's really delicious, and it's opaque white so it really looks like milk. The taste is very mild, and doesn't taste like coconut at all. My favorite brand is "So Delicious" (original flavor). Makes great smoothies too. It probably works great in recipes too, but I haven't had a chance to try that yet.

I sometimes make smoothies with straight coconut milk with no additives. Doesn't "So Delicious" have additives in it?

Razzle Dazzle Brazell Enthusiast

Hi! Have you ever tried coconut milk? I think it's really delicious, and it's opaque white so it really looks like milk. The taste is very mild, and doesn't taste like coconut at all. My favorite brand is "So Delicious" (original flavor). Makes great smoothies too. It probably works great in recipes too, but I haven't had a chance to try that yet.

It tastes great in desserts (especially with vanilla). It is also delicious in chowder. I reduced it on the stovetop and then add it last to simmer.

GFinDC Veteran

HI,

If you have a reaction to eating hard cheese like cheddar it is probably a casein issue. Most of the lactose is gone in hard cheeses. You can always take a couple lactaid pills when you eat the cheese just to be sure it is not lactose sugar. The lactaid digests the lactose, so if there was any trace of lactose left that would get rid of it. So you would be left with a chunk of casein to digest. You might need to do this test for 3 to 5 days in a row to see a solid reaction. This of course won't worlk if you are eating any other dairy during the time. Other dairy would muddy the waters and invalidate the test. Make sure the lactaid pills are gluten-free first though. It's an easy-peasy test really.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
FruitEnthusiast Enthusiast

I sometimes make smoothies with straight coconut milk with no additives. Doesn't "So Delicious" have additives in it?

Any "additives" in "So Delicious" are vegetable or mineral based, natural and gluten free. They are all on the safe list on this site. I don't think there are any problems with it. Anyone have any other ideas about the different coconut milks? Do the additives make it no longer a whole food, and instead a processed food? Very curious about this. I'm interested in the digestibility of it for one thing. Bought some straight coconut milk in a can from Trader Joe's but haven't tried it yet. Hope it tastes as good.

FruitEnthusiast Enthusiast

Additive free coconut milk in a can does taste just as good as the ones with additives! I didn't even know Trader Joe's carried the canned type. It's even thicker and creamier too which makes it great used straight in recipes in place of cream, I imagine, or with water added for drinking. You learn something new every day!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    4. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    5. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.