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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    2. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    4. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

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

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748

    MauraBue
    Newest Member
    MauraBue
    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

    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
×
×
  • 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.