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

Problems With Milk


holdthegluten

Recommended Posts

holdthegluten Rising Star

It's been about 7 months and i have been gluten free the entire time. It seems to be enough time for my villi to be healed, so why am i having problems with milk. (immediate gas after eating cereal, bloating and restlessness). I have not completely cut out dairy since diagnosis, but have cut back. My blood tests (ttg) came back really good, showing less than 4 on the ttg test, which proves i am following the gluten free diet very good. I never had a problem with milk prior to diagnosis. Why now! Is it Lactose or a Casein issue.


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



Celiac.com Sponsor (A8-M):



nikki-uk Enthusiast

Actually, it can take an adult up to 2 yrs for their villi to heal completely.

My hubby had been gluten-free for around 6 months before he (temporarily) acquired a problem with milk.

Milk products for him clearly gave him symptoms but he was ok with butter and cheese so he knew it was lactose.

He stayed off it for a couple of months - but kept trying to introduce small amounts.

He's ok with milk products now. :)

lmvrbaby Newbie

Hi, I have been gluten free since Feb 06 and had no problem with dairy until this past Spring. I also had cut back and after a year of gluten free the dairy started to affect me. I asked my doctor about it and he said to switch to rice milk. It is more expensive but what isn't on the gluten free diet. It helped. He also said I could try the lactose tablets that are suppose to help when you digest dairy and they do not help at all, at least for me. I love cheese so this kind of is a problem. I had cut dairy out completely for the past 3 or 4 months and tried again only to get the bloating and gas and cramps.

Maybe someone else out there has some suggestions. The rice milk isn't all that bad. Good luck.

holdthegluten Rising Star
Actually, it can take an adult up to 2 yrs for their villi to heal completely.

My hubby had been gluten-free for around 6 months before he (temporarily) acquired a problem with milk.

Milk products for him clearly gave him symptoms but he was ok with butter and cheese so he knew it was lactose.

He stayed off it for a couple of months - but kept trying to introduce small amounts.

He's ok with milk products now. :)

Thank you for your reply..........I appreciate it. I will do like your husband did and try small amounts here and there. Thanks

tarnalberry Community Regular

the majority of people on this planet cannot digest lactose once they are past the age of weaning, so it may be that your body is naturally becoming lactose intolerant. (it's quite normal as we age.) additionally, if you were dairy-free (or light) for a number of months at first, your body stopped producing lactase because there was no need for it, and it'll take a while for it to produce it again.

the reaction sounds like it is more likely lactose intolerance than casein intolerance, but the only way to tell is to consume a low- or no- lactose dairy with additional lactase enzymes and see how you do.

nmw Newbie

I'm glad to see this thread. At 15 months gluten-free I've started having problems similar to, but not identical to a glutening. Through minimal trials and a food diary I realize that milk, and to some degree cheese, cream, and products w/ dairy in them are giving me fatigue, mood swings, joint pain and bloating.

I assume this is a casein intolerance and will continue my DF trial to make sure, as well as the diary and a visit to Dr. Lewey in Colorado Springs.

Needless to say I'm pretty upset because if it's not one thing it's another, and it seems even more challenging to be CF than gluten-free! :angry:

  • 3 weeks later...
Miriam3 Rookie

Just had this happen too! I've been gluten free for a little over a month now. I felt a lot better, but I finally realized the only times I DIDN'T feel better were after having dairy products. I don't think it's just lactose intolerance because I get bad "brain fog" and chills with ice cold hands-- besides the gas and cramps. Now I'm Gluten-free Casein-free.

Please someone tell me maybe it will stop now!!! (The new "surprises", that is...) :(

I know some people here are avoiding tons of foods, but I was a total "foodie" before this and I don't want to have to keep cutting foods out forever. I'm scared to eat soy right now because I don't think I can stand to find out I can't have that either. And cutting out eggs and yeast would push me right over the edge.

Any good words? Is Gluten-free Casein-free usually enough?


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

Miriam, Gluten-free Casein-free should be okay. I have two DQ1 genes & have had a lifelong problem with food, so I am used to not eating things for awhile - or forever. I am Gluten-free Casein-free & still have other foods that I cannot eat, but I am also 60 now. My system is just not as forgiving as it used to be. If you have problems with other foods I suggest the "Eat right for Your Blood Type" book, not a gluten-free book but good for identifying foods that are the best for you...

personally, I do not believe that dairy is good for anyone - it just taste so darn good

sagemoon Newbie

I, too, found out via Enterolab that I have a casein intolerance. I did their test 10 months after going gluten-free but still suffering from joint pain, bloating and gas, and brain fog. Cutting out dairy cleared my head right up and the stomach and joint issues soon followed. Lactose intolerance supplements did zilch. (Side note: My doc suggested Beano - the pills contain wheat!)

I am a total cheese freak and have found some delicious sheep's (or ewe's) milk cheeses that may interest you. I found goat milk cheeses just too, well, 'goaty', but the sheep's milk cheeses tend to be milder. Marzolino is a great soft, mild flavored cheese, like mozarella, and melts perfectly for pizza and nachos. I buy it from iGourmet.com and justify the shipping costs by ordering several at a time. It works well this way since it is sold in its original packaging and not cut and repackaged - which is a problem with a lot of the other cheeses. It still is expensive, but totally worth it for my cheese fix. I have also found a couple of sheep's milk cheeses at Costco that are yummy and much better priced than online or at a fancy-pants store.

I thought I might be able to start to reintroduce bovine dairy after 18 months gluten-free and 8 months DF, the Enterolab test said that I was borderline on cheese casein but bad on milk casein, so I figured the fermentation process breaks down the casein molecule and I could start on fermented milk products. I had immediate problems with kefir yogurt, so that wasn't fermented enough, but can eat a nice stinky blue cheese. Can't handle provolone, so I think it is just a matter of degree of fermentation. Right now I am sticking to the sheep's milk cheeses and a stinky blue now and then (btw, there are delicious sheep blues, but they sell out fast and are really expensive). The problems I have experienced are significant enough to make me shy of too many adventures.

One very good thing, though. Since going Gluten-free Casein-free, I can drink wine again. I cut myself off many years ago because of the horrible sinus repercussions, but now find that they are insignificant. Wooha! And don't forget to take calcium supplements that include plenty of vitamin D!!

Miriam3 Rookie

Thank you both! Anne, I'm a Seattle girl by origin too! You know how hard it is to be there with all the great restaurants and try to be all picky. I went back a few weeks ago to visit family-- at least chefs there are nice and usually happy to help people who need to "tweak" menu. But thanks for keeping me looking on the bright side (yay, wine!). I'm working on healing my gut and then I'm going to try with the goat cheese and sheep cheese like you say. After you said that I looked up how the casein is a totally different type, so it's worth a try. It will sure make my salads better again!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,676
    • Most Online (within 30 mins)
      7,748

    AW1851
    Newest Member
    AW1851
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.