Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Anyone With Lactose Intolerance?


odcdinah

Recommended Posts

odcdinah Contributor

Hello,

Wondering if anyone here has also developed lactose intolerance along with celiac.

If so, what symptoms did you have and how were you diagnosed?

I'm suspecting that may be an issue for me but not sure what to look for.

Thank you! Dinah


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Food for Life
Little Northern Bakehouse



Celiac.com Sponsor (A8-M):
Food for Life


mushroom Proficient

I self-diagnosed lactose intolerance years before I became aware that I was gluten intolerant. Running to the loo within half an hour of eating ice cream or frozen yogurt.

mslee Apprentice

Many celiacs cannot tolerate dairy, there are 2 causes for problems:

1) when the villi are damaged the lactase enzymes needed to digest lactose are destroyed because they are found on the tips of the villi. as the villi heal they will be replaced but that takes time my GI Dr. estimates 6mo-1 year dairy free before trying to re introduce dairy.

2) the protein in dairy Casein is said to be so closely resemble gluten to a celiac's body that it triggers the gluten autoimmune response...mistaking dairy for gluten.

(This may not be common knowledge in the medical community...heck Celiac really is not....but seems to believed a cause of problems by some Dr's & Celiacs)

My Dr just said take dairy out with Gluten and we will try in in the future, I know testing it has made me sick. Also had a slight allergic reaction to milk during allergy testing.

Good Luck!!!

  • 5 weeks later...
Applefamily Newbie

I have only been gluten free for 1 week now. The reason I when gluten free is because going lactose/dairy free for 2 weeks only slightly decreased my symptoms. Now that I have been off both for 1 week I have felt 100% better and lost 6lbs!! I tried going gluten free and drinking milk and felt sick so I know I am both. Its hard getting started, but so worth it!!

Sweetfudge Community Regular

Yeah, mine was a lot of bloating and gas. I tried the "dairy-light" diet for awhile, then started taking lactaid pills, but neither worked very well. I just had to cut it out altogether. I've also had contradicting results to the skin scratch test. I say, do an experiment where you don't eat any dairy for a whole week. See how you feel. That's the best test result to me :)

ang1e0251 Contributor

I also knew many years before gluten that I was lactose intolerant. It was described in something I read and I recognized myself there. I backed off little by little. I used to be able to have yogurt and ice milk. Not now but I can have a little butter and aged cheeses. My daughter was dx'd by endoscopy and her intolerance acts very different than mine. Which is why we ordered the test, we couldn't understand why the stomach aches every day. If I'd known then what I know now, I would have had them test her for celiac but who knew? Now that she's an adult, she has to decide for herself to be tested. I think she's intolerant just waiting for a trigger but a busy college girl with few symptoms doesn't make this a priority.

MELINE Enthusiast

acne (terrible...) and bloating (terrible also....)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Food for Life
Holidaily Brewing Co.



Celiac.com Sponsor (A8-M):
Daura Damm


Kurzemiete Explorer
  MELINE said:
acne (terrible...) and bloating (terrible also....)

This is a valuable thread. My daughter who is 12 was diagnosed with the scratch test a 3/4 for milk, dairy and soya allergy. She has has the occassional stomach ache for several years now, about one per week. I cannot say that I have actually seen a pattern in the cause of these stomach aches.

As Meline mentioned my daugher has had acne for a few years now, but then that is just like me. I started with acne at around 10-11 and still suffer from it at 37. I went on Accutane for 6 months however did not pursue a second course of it because in the last year I have seen my hair thinning also my eye lashes! Hair thinning is one side effect of it but my hair has not been its old self in several years, its lost some curl as well as volume (so prior to use of Accutane..so I am wondering if it is gluten?)

I am concerned about what is left for my daughter in the long if milk and soya are out, also she doesen't like the rice milk. The key is preventative actions and I want to try and nip things in the bud for her life.

I have not put her on the elimination diet as of yet, but I realize it is probably the reasonable course of action. Does anyone have any suggestions re this? For us in Canada, the Celiac blood test is not free. Ideally I want to have us both tested at the Enterolab for the Celiac gene and lactose association, but at present money is a constraint

Liya.

MELINE Enthusiast
  Kurzemiete said:
its lost some curl as well as volume (so prior to use of Accutane..so I am wondering if it is gluten?)

I used to have wonderful curly hair and now they are thin not curly at all and they don't look good. they are extremely rough. It is not the gluten. It is the acidity in your body (I think...). For me it all started when I started folowing a sugar - only diet. I really don't know what I was thinking, but just before I got diagnosed for celiac I had this sugar mania for about 5 months. My hair lost their volume, I started overgrowing candida and terrible acne. It took me 2 years to find that acidic body (because of too much sugar) promotes candida and ruines the elasticity of our hair (you can google that and you will see that one of the symptoms of acidic body is dry hair ).

I am taking alkaline supplements, and just in 2 weeks my hair is better. So I think it is not gluten. At least, not only gluten.

As for your daughter, she can just follow an elimination diet and keep a food diary. Remember that lactose can have symptoms in 7-48 hours after consuming it. I think she will be able to find out really soon. Tell her to right down every little reaction - strange or good feeling after consuming food. Hope this will work for her. Of course you can always visit a hospital (isn't that free in Canada??) and ask them to examine her through her breathing (it is a way of finding lactose intolerance).

NYCCeliacMom Apprentice

My 16 year old daughter was diagnosed in mid-November. We are have a lot of trouble getting her comfortable, and now I think the lactose is the problem. She went off to school furious today...to be denied dairy in addition is very hard for her. I tried having her take various lactaid products but they don't seem to help. Her dr. wants her to take a lactose blood test, which she is doing tomorrow. I myself have been lactose intolerant for 7 years but my celiac was missed by the GI three years ago. Lactaid has helped me, though. When we got her diagnosis, the GI made it sound as if she would be fine and healed in a month. Now from reading here it sounds like 6 months to a year is more realistic.

JNBunnie1 Community Regular
  NYCCeliacMom said:
My 16 year old daughter was diagnosed in mid-November. We are have a lot of trouble getting her comfortable, and now I think the lactose is the problem. She went off to school furious today...to be denied dairy in addition is very hard for her. I tried having her take various lactaid products but they don't seem to help. Her dr. wants her to take a lactose blood test, which she is doing tomorrow. I myself have been lactose intolerant for 7 years but my celiac was missed by the GI three years ago. Lactaid has helped me, though. When we got her diagnosis, the GI made it sound as if she would be fine and healed in a month. Now from reading here it sounds like 6 months to a year is more realistic.

It really depends on the person and how damaged they are. Your daughter is young, and if she wasn't 'on the brink of death' as so many are when they finally receive a diagnosis, she may heal faster than a lot of the stories you've heard. However, if the lactase pills aren't working, she may be intolerant of the PROTEIN in dairy, called casein. I know it's frustrating and upsetting, I would try to give her one week without dairy and see how hard it is.

I can tell you from personal experience, it's usually a bad idea to go replacing something with something else. For example, don't start drinking soy milk, eating soy cheese, soy yogurt, soy everything. A lot of people seem to wind up intolerant of that replacement food. I did this with peanut butter, ate it every day for a few months after I went gluten-free and now I can't have any peanuts.

purple Community Regular
  Kurzemiete said:
This is a valuable thread. My daughter who is 12 was diagnosed with the scratch test a 3/4 for milk, dairy and soya allergy. She has has the occassional stomach ache for several years now, about one per week. I cannot say that I have actually seen a pattern in the cause of these stomach aches.

As Meline mentioned my daugher has had acne for a few years now, but then that is just like me. I started with acne at around 10-11 and still suffer from it at 37. I went on Accutane for 6 months however did not pursue a second course of it because in the last year I have seen my hair thinning also my eye lashes! Hair thinning is one side effect of it but my hair has not been its old self in several years, its lost some curl as well as volume (so prior to use of Accutane..so I am wondering if it is gluten?)

I am concerned about what is left for my daughter in the long if milk and soya are out, also she doesen't like the rice milk. The key is preventative actions and I want to try and nip things in the bud for her life.

I have not put her on the elimination diet as of yet, but I realize it is probably the reasonable course of action. Does anyone have any suggestions re this? For us in Canada, the Celiac blood test is not free. Ideally I want to have us both tested at the Enterolab for the Celiac gene and lactose association, but at present money is a constraint

Liya.

Has your dd tried almond, hemp or hazelnut milk?

Archived

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


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      130,236
    • Most Online (within 30 mins)
      7,748

    Elaine Brostrom
    Newest Member
    Elaine Brostrom
    Joined

  • Celiac.com Sponsor (A20):
    Authentic Foods


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Daura Damm



  • Upcoming Events

  • Posts

    • Zuma888
      I just got my test results after a less than 2-week gluten challenge consuming about 5 g of gluten per day on average.  Anti tTG-IgA: <0.2 AU/ml (<8 is negative) IgA: 180 mg/dl (Reference range is 70-400) I previously had been on a gluten-free diet for around 3 years or so, with occasional cheating and not being strict about cross-contamination. I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches). Is this likely to be NCGS rather than celiac disease given the test results and my history? Note: I have one copy of HLA-DQ8.
    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small...
×
×
  • Create New...