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.

  • 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 Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    2. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

    • Total Members
      132,832
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.