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

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

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

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

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

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

... 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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      The discovery of the vitamin D receptor in multiple immune cell lineages, such as monocytes, dendritic cells, and activated T cells credits vitamin D with a novel role in modulating immunological functions and its subsequent role in the development or prevention of autoimmune diseases.  The Implication of Vitamin D and Autoimmunity: a Comprehensive Review
    • Wheatwacked
      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
×
×
  • 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.