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

Those With Lactose Intolerance

Waitingindreams

Recommended Posts

Waitingindreams Enthusiast
Waitingindreams
Posted

I've heard that sometimes, after awhile on the gluten free diet...lactose intolerance issues will go away. I saw in a previous thread that someone had luck after 8 months on the gluten free diet. I've been on the gluten free diet for about 8 months now as well, and if anything my lactose intolerance symptoms are getting far WORSE. For example, on Friday I had a gluten free pizza - to be on the safe side, I took FIVE lactaid pills. Five! And I still had issues. Now, for the most part I do avoid dairy/lactose.. (I drink almond milk, eat lactose free cheese, check for dairy in salad dressings, etc).but I hadn't had a pizza in a long time, so I figured if i took a bunch of lactaid pills it should be fine. Nope. 

 

Do you have to go completely dairy free to get the lactose intolerance to go away? Is it like celiac disease in that regard - if you keep eating dairy it prevents the lactose intolerance from resolving? I cut back on dairy significantly, but I do eat it occasionally. Do I need to completely give it up for a few months to see any results?

 

Has anyone else had their lactose intolerance go away, and if so how long did it take? I'm used to not eating dairy regularly now, but I would like to enjoy an occasional gluten free pizza or calzone.

 

Any information would be appreciated! :)

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I am allergic to milk and I still am (casein, a protein). It is not a lactose issue. I think the ability to regain a lactose tolerance depends on the severity of damage. Remember, it can take a couple years for complete healing from what I have gathered on this forum. Not to mention that as everyone ages they tend to develop lactose intolerance whether or not they have celiac disease. I would completely avoid it for months before testing it again.

w8in4dave Community Regular
w8in4dave
Posted

I agree with cyclinglady it will be different for everyone.I am calling myself lactose intolerant, but I can eat some cheese , for some reason it is more butter that bothers me than cheese. So I clarify it :) I can eat the clarified with absolutely no problem. But I think you are not giving your self enuf time to heal. Unless it wasn't the Lactose that bothered you. 5 lactaid is alot. Have you considered it may have been something eles? 

Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

Thank you both for the feedback! That's what I plan on doing - just avoiding dairy (or at least lactose) completely for awhile, and then seeing if that resolves anything. The only dairy I will eat is my almond cheese (it has casein in it - but is lactose free)

 

W8in4dave, yeah I agree completely - 5 is very excessive. I do know for sure it is the lactose, because I only have symptoms when eating a lot of dairy (cheese, milk, icecream, and yogurt are the biggest offenders) I did consider that maybe it was actually a casein intolerance/issue, but when I eat the almond cheese, I have no symptoms at all! I think I made it worse when I found out I had celiac disease because I started to eat more dairy to make up for the loss of other foods I was regularly eating. I've also realized that lactose/dairy is hidden in products I hadn't suspected (like certain salad dressings, or even pain medication) so that could be making the issue worse as well. 

 

Regardless, I don't crave dairy as much as I used to (which is great!) and I will never go back to drinking regular milk, or eating regular icecream (Lactaid icecream works great and I don't have any symptoms!) But again, it's nice to go out to eat and just enjoy a gluten free pizza or calzone every now and then, and it's frustrating that the pills aren't doing much! Now if only restaurants could start making pizzas with almond cheese :)

 

I really do think I need to do a big dairy challenge and give up lactose (and most dairy, besides the almond cheese) for 6 months. That might do the trick. I'm just concerned because I want to make sure I am healing properly.

cyclinglady Grand Master
cyclinglady
Posted

They make cheese from almond milk? I have never seen it, though I do not exactly browse the cheese section for new products!

Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

Yes, they sure do - and I personally think it's great! 

 

Open Original Shared Link

 

^ There is the link if you (or anyone else reading) are curious - they also make rice and soy cheeses, but all of them contain casein. :( They said they are working on a vegan almond cheese alternative, though! They sell the chunks at my Stop & Shop for $4.99.

 

There are also homemade almond cheese recipes, which I plan on trying someday.

cyclinglady Grand Master
cyclinglady
Posted

Wow! I never knew that!

Seriously give up dairy in all forms and see if it helps. Dairy can actually cause intestinal villi damage per the University of Chicago's Celiac website. So, it is not always gluten! But I think it is also not that common either.

I have been on a low carb, high fat diet to control my blood sugar for two months. Yes, it is even worse in some ways than being just gluten free except for the eating out thing. However, I have been feeling my best just consuming fresh whole foods and no processed carbs (grain free too). I am not promoting this diet, but I seriously think that I would have seen much faster healing results if I had started this diet at the start of my celiac disease dx. Instead, since my husband has been gluten free for over 13 years, I just switched my regular cupcake habit to a gluten free one. I guess I took that path because going gluten-free is hard enough (lots of grieving) but I really wish I would have......followed the advice of the newbie thread which does tout whole foods (and not processed) until healing has occurred.

Live and learn.

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

Celiac.com Sponsor (A8-M):


Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

That's great that you are feeling better! Yeah, it's very difficult - I was on the SCD (Specific Carbohydrate Diet) for about a month (started in January) however I still ate dairy, as the diet allowed certain cheese (Swiss and Cheddar, for example). I didn't see much of a result at all, but since going on that diet I have eliminated some of the 'bad foods' completely and added some good foods in (like avocado and coconut oil) I didn't know that dairy could cause intestinal damage. That's pretty scary - but could be an important factor of why I am not feeling 100%. I also have a strong feeling that I have SIBO (Small intestinal bacterial overgrowth) and I want to get tested for that soon. 

 

My major problem with the SCD diet is/was my love for rice, and that I was so hungry all the time. It was so strict, it just wasn't working for me - though i am trying to modify my diet to eat less grains in general (including corn), cut back on dairy, and eat more vegetables/fruit. I think I might try to eat mostly grain free/SCD and maybe have a 'cheat' day where I allow myself rice and almond cheese, etc. Instead of getting salad dressings from restaurants, my new found favorite 'dressing' is to ask for just olive oil (vinegar seems to aggravate my rosacea) and lemon wedges. It's great, I didn't think it would be but I love it. 

 

I've also realized that sugar affects me terribly (mainly the candidiasis), so I've cut back significantly on the gluten free desserts - I very rarely have a gluten free cupcake or anything similar! :( So I try to limit the fruit as well. I think my main "junk food" vice is gluten free chips. Very, very bad! Lol.

 

But I agree, the less processed/less ingredients, the better. 

nvsmom Community Regular
nvsmom
Posted

I was wondering if you are sure the pizza was safe? I won't order a gluten-free pizza from any place that makes regular pizza because I can't imagine them being careful enough to eliminate the risk of cc. Cooking or prep surfaces have to be separate or cleaned well before use. I worry about flour settling onto my food... stuff like that. Could it have been gluten?

Waitingindreams Enthusiast
Waitingindreams
Posted
  • Author

I could see why you would think that - my symptoms from lactose intolerance/from getting 'glutened' are very different. Sometimes I no longer have GI symptoms from the lactose intolerance, but I will have bad breath that will linger over 1-3 days, (depending on how much lactose I eat and if I keep eating it) the GI symptoms I do get are cramping and bloating, but once I go to the bathroom it's fine. The last time I really got hit hard with gluten was before I was diagnosed - I was in/out of the bathroom on and off for 12 hours and I really felt like I was going to die. I thought it was food poisoning! Food was going through me, I felt constantly nauseated and I felt like I was digesting knives. It's awful. The lactose intolerance has calmed down in the sense that the GI symptoms aren't AS bad as it was before, but the bad breath is still there even after taking five lactaid pills. I know it's the lactose intolerance that is causing the bad breath, because when I don't eat dairy (or after I eat lactaid ice cream or my almond cheese) my breath is fine. It's so frustrating! I am craving dairy less anyway, but I really do enjoy eating dairy at restaurants sometimes!

 

So in short - I do know it's definitely the lactose intolerance. What a pain. I did get a white pizza, so maybe there's a lot more cheese there..and it did have ricotta on it. I know it's a lot of lactose, but I took 5 pills! It concerns me because I feel like the breath should be calming down. I only know I have bad breath because of my boyfriend. I tested it because I have impeccable oral hygiene and when he first told me I had bad breath I was extremely confused..I've never even had a cavity, how could I have bad breath? I would brush my tongue so much/so hard that it would bleed...but when I talked to my doctor about it he agreed it was the lactose intolerance. Every time I go without dairy for awhile, my breath is completely fine. It's really frustrating. I try to stay away from it, but sometimes I just want a pizza or calzone. That's not even my biggest concern...I can live without both, my concern is that I'm, apparently, still not healing enough for the lactose intolerance to be resolved. :\

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,683
    • Most Online (within 30 mins)
      7,748
    Jean Tonkin
    Newest Member
    Jean Tonkin
    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

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      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
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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.    
×
×
  • 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.