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

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):



Celiac.com Sponsor (A8-M):



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):



Celiac.com Sponsor (A8-M):



Kurzemiete Explorer
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
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
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
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.

  • 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. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

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

    • Total Members
      133,101
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.