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

Possible Dairy Problem


Samanthasmomma

Recommended Posts

Samanthasmomma Apprentice

I am feeling better since going gluten free, but I am still having D. Im thinking of going without dairy for awhile to see if that is a problem as well as gluten. How long do you think it will take to feel better if dairy is a problem? My quess is one to two weeks. Can I use soymilk as a substitute for milk? My last question is what else do I need to watch out for on a dairy free diet? I hope this makes sense...


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
I am feeling better since going gluten free, but I am still having D. Im thinking of going without dairy for awhile to see if that is a problem as well as gluten. How long do you think it will take to feel better if dairy is a problem? My quess is one to two weeks. Can I use soymilk as a substitute for milk? My last question is what else do I need to watch out for on a dairy free diet? I hope this makes sense...

It does take some time to feel better and I'm glad that you are. If you villi are damaged it is very hard to digest dairy, so that is why it is recommended to at least be dairy light or eliminate it all together.

Some people feel better almost immediately and others like myself it took 2 months for the D to subside in order to leave the house. I have been gluten free for two years and still find it a challenge.

There are always things ready to get you. I have been cooking for an elderly friend and using her pots and pans and have been sick for several days now. Gluten can hide everywhere.

It is hard to tell in the beginning when you will be able to feel better. Your intestines needs to heal. It took some time to do the damage and equally, time to heal.

Soy milk would be a good substitute for milk and look out for "whey" when you are reading labels - it is dairy derived.

Keep it up and one day you will realize that you DO feel good.

Rosewynde Rookie

Check labels like crazy for any of the non dairy products. Soy, rice, or almond milks are a good substitute but often have gluten as a part of their processing or are made in a factory that makes other gluten containing products so there is potential for cross contamination.

There are the obvious dairy things to watch for such as, milk, cheese, and butter. You also have to watch out for whey and lactose. There's also another one that can be problems for some that is a milk protein but can't remember the spelling . . . cassien?

sfm Apprentice
Check labels like crazy for any of the non dairy products. Soy, rice, or almond milks are a good substitute but often have gluten as a part of their processing or are made in a factory that makes other gluten containing products so there is potential for cross contamination.

There are the obvious dairy things to watch for such as, milk, cheese, and butter. You also have to watch out for whey and lactose. There's also another one that can be problems for some that is a milk protein but can't remember the spelling . . . cassien?

It's casein - a protein in milk. Sometimes you can have a sensitivity to casein, also (I do) - which means that I'll always have a problem with dairy :( (I think I miss that more than the gluten).

Sheryll

sherryGF Newbie

I definately think that it would be wise to leave off the dairy products for now, until your small intestine heals further. I've been gluten-free for 7 years, and until the past 6 months, had never had any problem with dairy foods! However, testing shows that I have an immune response to casein, so I've had to give up dairy, which is at least as difficult as giving-up gluten! The soy milk wasn't bad at all, but I got sick with it, too, so I'm just trying to deal with it--haven't tried rice milk or hemp milk yet! Good luck!

jlr Apprentice

I am so glad that I happened on to this thread - I have been gluten free for 2 years now but I still have bouts of D - I never made the connection that the damaged villi would have problems tolerating other items. I thought if the villi were healed I would back to normal (whatever normal is?).

Is lactose the next thing on the elimination diet for me to get rid of?

I am sorry to hear that others are stilling having D as well - but it is comforting to know I am not the only one.

Thanks,

Janet

TrillumHunter Enthusiast

I gave up dairy as well. I have tested it a couple of times and it is the culprit. I even bought some Lactaid to see if it was lactose. I choose to avoid for now but if I am really wanting ice cream I know I can have it with the Lactaid. So far I've been able to resist. I figure my poor intestines need a break after all those years of damage!


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



Celiac.com Sponsor (A8-M):



somegirl2004 Newbie

In order to test for lactorse intolerance, my doctor suggested that I completely get rid of it for three days and then have a giant glass of milk on the fourth day to see if my symptoms (diarrhea and lots of gas) came back.

Too bad I'm from Wisconsin (born and raised with some of the best dairy products around) and haven't yet brought myself to try testing for lactose intolerance! :rolleyes: I made it about 13 hours before someone was shoving cheese down my throat!

Anyway, good luck!

-- Erin

Samanthasmomma Apprentice

Thank you everyone, for your help. I have been dairy free for one week and am feeling better. This too is a learning process and has had quite a few setbacks, but those have just reinforced the need to stay dairy free. I am hoping that someday I will be able to add it back to my diet, but I am gratefull to be feeling a little better right now. I just cant wait untill I feel great again.

HannahHannah Apprentice
Thank you everyone, for your help. I have been dairy free for one week and am feeling better. This too is a learning process and has had quite a few setbacks, but those have just reinforced the need to stay dairy free. I am hoping that someday I will be able to add it back to my diet, but I am gratefull to be feeling a little better right now. I just cant wait untill I feel great again.

I love this forum :):):)!! It's so good to have people who know what we're all going through, and aren't embarrassed to talk about the more unsavoury symptoms of being glutened!

Dairy is a problem for me also - nowhere near as much as gluten, e.g. I don't get pain when I eat dairy. I decided to test it out one day and drink a load of milk (about 2 pints) and see what happened! And lo and behold, our old friend D turned up!

Isn't it something to do with the enzyme used to break down dairy (or lactose) is impaired by the damage to the intestines?

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

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

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - 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

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

      nothing has changed

  • 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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • 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:    
×
×
  • 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.