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

Dairy And Ncgi

Sarahsmile416

Recommended Posts

Sarahsmile416 Apprentice
Sarahsmile416
Posted

Hi -

Was DX about a month ago as esophagitis, gastritis, and was told I did not have celiac. Of course, knowing myself and my reactions to gluten, I went gluten free almost immediately following the endoscopy. I have been doing well since then most of the time.

Because I have read on here about avoiding dairy if you are Celiac or NCGI, I have done my best to do so. But for me it is hard because my reactions are very varied. For example, I can eat sugar free tapioca with no problem even though it is milk-based and can eat small quantities of butter as well. However, sour cream leaves me down for the count! I have been trying to eat Fage as I did before my DX to varied results. I ate a blueberry 0% fage and felt some minor cramping and a little gassy, but today, I had a strawberry fage and I have been in bed since 1pm with horrible abdominal discomfort and D. My question is two fold: 1) what is it about dairy that doctors will tell you to avoid it when you have gut issues? 2) why am I having reactions to some forms of dairy and not others? I think that's what is keeping me from avoiding all forms of dairy at this point...can anyone help?

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Generally speaking, according to the definitions of celiac disease (villous atrophy) and NCGI (no intestinal damage) if you are NCGI you 'should' be able to digest lactose (milk sugars). Those with villous atrophy usually cannot because the enzyme lactase is made at the tips of the villi which atrophy in celiac, so therefore it is absent until healing takes place. This is why they say that celiacs can normally 'resume dairy' once they are healed, but they really mean 'can digest lactose'. Some people also have problems with the protein called casein in milk which is digested by different enzymes, so it is often just recommended that you avoid all dairy at first and then try adding it back in six months. If you cannot handle casein you normally do not regain this ability. And for some, dairy is difficult to digest at best of times and especially after developing a sensitivity to gluten.

So where does this leave you? Let me give you my own example. I knew I was lactose intolerant before I knew I was gluten intolerant. I did not have any problems with yogurt, cheese, sour cream, butter, but I could not have milk, ice cream, cream or frozen yogurt, all high in lactose. Once I healed from the gluten onslaught (and I was never tested so have no diagnosis) I am now again able to eat these things as well.

The things you would be most likely able to digest if you were merely (perhaps temporarily) lactose intolerant would be butter and hard cheese like cheddar. Those would be the first to test yourself on. If those were okay, you could then try yogurt, although you say you are having trouble with Fage (I am not familiar with the product) and sour cream puts you down, so you know not to try that. Some grated parmesan on pasta would be worth trying, and Lactaid milk, or Lactaid tablets with regular milk or other lactose containing products, both of which contain lactase enzymes.

I hope this helps clarify it for you. :)

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

Thanks, mushroom! Appreciate the reply and the explanation. It does make sense...my doctor recommended today that I stay off dairy for awhile. Like an idiot today, I tried my tapioca which I previously had been okay with and 5 minutes later, I got sick. Well, I guess if I needed proof, I got it - in spades!

mushroom Proficient
mushroom
Posted

There are plenty of substitute milks out there to use - almond, hemp, rice (other than Rice Dream which is filtered with barley and many have problems with), even coconut; I personally do not recommend soy milk, but that is your choice :)

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

Oh trust me, not about to touch soy milk. I was drinking flax milk for awhile which I really liked. I think I need to find some non-dairy substitutes for pudding because after what I have heard about lactaid pills, I don't really want to try them...besides I have enough meds and vitamins already, I really don't need to add another!

GFinDC Veteran
GFinDC
Posted

... I think I need to find some non-dairy substitutes for pudding ...

I need mah puddin'! I need my puddin' now! :D

Seems like I saw a post about making chocolate pudding with avocados and chocolate powder a while back. And maybe one about making pudding using bananas or was it ice cream made with bananas? Probably there is something in the recipe section for it.

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

I need mah puddin'! I need my puddin' now! :D

Seems like I saw a post about making chocolate pudding with avocados and chocolate powder a while back. And maybe one about making pudding using bananas or was it ice cream made with bananas? Probably there is something in the recipe section for it.

Hehe! :)

And ooh a pudding with bananas - I will have to check out that section! Thanks!

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

Even after all this time, I only eat plain yogurt, never pre-flavored. If I want anything in it, I add it myself, from single ingredients I already know I do not react to. And I make sure it is as plain as plain can be, without added milk solids like dry milk or anything else, other than the lactobacillus cultures, because who knows what is in that stuff, really, re its true gluten status and whether or not all the lactose was processed out by aging. I don't have any trouble with the plain Fage, and believe me, I've reacted to a lot of different brands of allegedly "gluten free" yogurts. <_< I see my local store runs out of plain Fage often and is trying to sell the smaller, more expensive, flavored Fages, but I will just drive further to get the kind that I need. Same with sour cream, it's difficult to find a sour cream these days that is made from just "cream" and cultures. There are thickening agents which may not agree with your current gut status. You may have to go organic on this type of item to find one not loaded with additives. Try using some organic cultured butter, that has made a big difference for me in terms of being able to tolerate butter, instead of always having to use olive oil. I think part of these reactions are to an increased sensitivity with our damaged, leaky guts to the chemicals the regular cows are exposed to, then pass along in their milk. Since the last decade with the ongoing problems with the price supports for dairy, they've really pushed these cows to produce a lot more milk, and it stresses them. :(

Sarahsmile416 Apprentice
Sarahsmile416
Posted
  • Author

Thanks for the advice regarding the yogurt...I don't think I will try it quite yet, but when things start to heal, I will give the plain Fage a try...although the taste kind of scares me...maybe as you said, I'll add something I know I'm okay with to mask the taste...or just find something else.

I actually had a sweet potato yesterday with butter and while I had some mild discomfort, there was no running to the bathroom lime episodes for me, so I consider that a win, which is a good thing because I'm not sure what I would end up using as an alternative to butter!

Archived

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

Go to topic listing

  • 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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    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

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.