Celiac Type Forum For Dairy Intolerance?

[heliosue]

Recently diagnosed with Celiac, but am still having some digestive issues and wonder if I might have a dairy intolerance,  I know that I should stay away from dairy to see if that helps, but I would also love to find a forum as knowledgable and helpful as this Celiac Forum where I can get good, up-to-date information and advice.  Does such a forum exist for lactose intolerant folks?

 

Thanks.

[cyclinglady]

I do not know about such a forum. About 60% of the world's population has a form of lactose intolerance after infancy. Here is a government link:

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Chances are you have lactose intolerance since the enzymes to digest lactose (milk sugar) are released from the very tips of intestinal villi. Those are typically damaged from celiac disease. I would avoid all dairy for six months. Then add back in dairy that has the least amount of lactose (e.g. Hard cheeses and yogurt) to test. You might eventually get back your ability to digest lactose -- or be one of the 60% and never get it back.

Good luck!

[mamaw]

Go Dairy Free  is a good place to  start. plus  there are  other  sites  like  gfdf.... Please  understand  that  you  are still very  new  to  celiac  & the  healing  process  can take  several years ,  it  is  not  an overnight  fix.... Eating  a  naked/plain  gluten-free  diet will help  without  a lot  of processed gluten-free , plus  yes,  many  doctors  now  recommend  going  dairy  free  for a  period  of time.....

[Galixie]

^{If you find a good forum for dairy intolerance, please post a link to it. I would be interested in that also!}

^{I have one friend who has lactose intolerance and does well by taking something before eating dairy. It's a pill of some kind. I don't know what it is called though.}

[RollingAlong]

You could try looking for resources for casein intolerance and milk allergy.  Those search terms will be more effective.  There is a milk allergy listerv, for example. 

 

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[Panama]

^{If you find a good forum for dairy intolerance, please post a link to it. I would be interested in that also!}

^{I have one friend who has lactose intolerance and does well by taking something before eating dairy. It's a pill of some kind. I don't know what it is called though.}

 

Could it be that she takes Lactaid before consuming dairy? I am also lactose intolerant and that is what I sometimes use. I switched to Kirkland Signature Fast Acting Lactase which I buy at Costco. It works the same and is cheaper than Lactaid (at least in my area).

[DandelionH]

Hi,
I'm really confused about this lactose intolerance business...
So destroyed guts before the diet often struggle with it, right? I ate dairy when I was a kid with no problem but when the stomach aches hit and everything (everything) hurt to eat I tried cutting it out because it's one of the first things people axe trying to feel better. I never added it back in because I didn't really need it (amazing vegan cheeses out there) but after realising a few months ago that following the gluten-free diet for a year resulted in heaps of foods I 'couldn't eat' being totally fine... I decided to try dairy again. Mainly because it makes eating gluten-free and largely soy free a lot easier. And because I think I was low on something that dairy provides. I feel a lot more...grounded? Maybe it's just the relaxation of being able to eat much more.
Anyway point is... I hate milk and only added in yoghurt and swiss cheese (yum!) and it gave me a bit of a weird stomach but barely noticeable. It seems to correlate with a vague headache and heartburn though. Except 'correlate' is really just... a day or so later.
My question is: is dairy something your body has to get used to again? Develop enzymes for again after not eating it for a decade? Should I 'keep at it'? I know nobody can answer this question and perhaps I'm in denial about a third food impacting me negatively but perhaps also I'm overly sensitive to body reactions right now and noticing things that are just weird transition symptoms of adding in a new food group or even completely unrelated. Confused...
Any stories of experiences would be helpful...

[cyclinglady]

Yes!

I was diagnosed by an allergist (M.D.) years ago  as having nut and milk allergies.  Same for my siblings too.  We get asthma, eczema, tummy issues, nose congestion, itchy eyes, but nothing serious.  Some of the grandkids have the same allergies and they carry epi pens (never offered to us).   I drank soymilk for years!  When I got my celiac disease diagnosis two and half years ago, my allergies really improved!  I no longer lived on antihistamines, etc.  After a year or more of being gluten free, I became diabetic.  I really needed a variety of foods in my diet.  I began experimenting with cheese and butter and then added plain Greek yogurt.  Then I purchased lactose free milk for my coffee.  My siblings are waiting for me to get sick ("just wait until spring pollen counts hit, girl") but that has not happened.   I did well and survived Spring, until a recent glutening and I lost all my dairy again.  I went back to a very basic easy-to-digest foods.  After two months, I am back on yogurt, butter, yogurt and cheese.  I do take dairy enzymes and am slowly weaning off them. 

So, I can consume moderate amounts of dairy.  I have some off days if my inhalant allergies kick in.  Usually, antihistamines help.  My intestines are healing (my recent antibodies test was high confirming gluten was again making/made me sick).  Do I have a milk protein allergy still?  I think yes, but it is mild.  Lactose intolerant?  Looks like intestinal healing has resolved this issue again!

That is my personal experience.  Some folks can never get over being lactose intolerant.  It depends on your genetics.  If you ate it as a kid, you might get it back!  Folks tend to become lactose intolerant as they age so keep that in mind.   I just avoid actual milk unless it is lactose free.  I have not had the guts to try a big, tall glass of icy cold milk!  I am content with yogurt, butter and cheese. 

 

 

[DandelionH]

Yes!

I was diagnosed by an allergist (M.D.) years ago  as having nut and milk allergies.  Same for my siblings too.  We get asthma, eczema, tummy issues, nose congestion, itchy eyes, but nothing serious.  Some of the grandkids have the same allergies and they carry epi pens (never offered to us).   I drank soymilk for years!  When I got my celiac disease diagnosis two and half years ago, my allergies really improved!  I no longer lived on antihistamines, etc.  After a year or more of being gluten free, I became diabetic.  I really needed a variety of foods in my diet.  I began experimenting with cheese and butter and then added plain Greek yogurt.  Then I purchased lactose free milk for my coffee.  My siblings are waiting for me to get sick ("just wait until spring pollen counts hit, girl") but that has not happened.   I did well and survived Spring, until a recent glutening and I lost all my dairy again.  I went back to a very basic easy-to-digest foods.  After two months, I am back on yogurt, butter, yogurt and cheese.  I do take dairy enzymes and am slowly weaning off them. 

So, I can consume moderate amounts of dairy.  I have some off days if my inhalant allergies kick in.  Usually, antihistamines help.  My intestines are healing (my recent antibodies test was high confirming gluten was again making/made me sick).  Do I have a milk protein allergy still?  I think yes, but it is mild.  Lactose intolerant?  Looks like intestinal healing has resolved this issue again!

That is my personal experience.  Some folks can never get over being lactose intolerant.  It depends on your genetics.  If you ate it as a kid, you might get it back!  Folks tend to become lactose intolerant as they age so keep that in mind.   I just avoid actual milk unless it is lactose free.  I have not had the guts to try a big, tall glass of icy cold milk!  I am content with yogurt, butter and cheese. 

 

 

Ah! Thankyou! Hooray! I'm sorry you had to go through all that but I'm really glad you're on the mend.
I hate milk, as a drink, but butter, cream, yoghurt and cheese would be really useful. I can get by without them but things are obviously easier if you're avoiding fewer food groups. I was confused because it doesn't do anything to my stomach so I wouldn't say I'm lactose intolerant... it's just the migraine thing. And I actually wonder if maybe it's something to do with hormones. I'm way underweight right now (hence liking cream as an addition! One can only eat so many nuts...) and have lost my periods so maybe low estrogen gets shocked by dairy estrogen and the shift makes hormonal migraines happen. Either way, I'm heartened by your post and eating dairy again today despite a killer migraine this morning. Normally I'm an avoider of anything painful but I just want to know what happens if I stick with it. Sounds crazy but perhaps it isn't...

[DandelionH]

Update: I think actually after doing some research it's not 'dairy' or 'casein' but histamines! Someone sent me a file about it and it made WAY too much sense. Facial flushing, rapid heartbeat, migraine etc. after those foods, dark chocolate, soy, tea (boo . I love tea. But now I drink coffee and don't react to that at all. Knew it wasn't the caffeine doing it?!)...
Butter and cream are officially fine. And I had a single slice of cheese and nothing happened. Apparently it's a cumulative thing, common with Celiac and (the best part) goes away eventually!

Just letting anybody else know who may be in a similar boat. Ah the relief of realising you're not crazy... and that you're not as limited as you felt you were.

[cyclinglady]

That sounds great!  I was going to write back that adding dairy back into your diet is not worth getting migranes.  Keep us posted on how the histamine diet works.  

[DandelionH]

That sounds great!  I was going to write back that adding dairy back into your diet is not worth getting migranes.  Keep us posted on how the histamine diet works.  

So far am totally confused because I've eaten yoghurt the last two days and nothing happened. Cheese seems to be the bad one for migraines so I"ll try that next. No hot flushes for ages either despite mushrooms, dark chocolate and other tasty things. Mysterious but I'm not complaining (or assuming it'll stay like that). One thing I'm learning through all this is changing viewpoints, rules and listening to your body in an ongoing dialogue. Heh.

Yep, you're right. Migraines aren't worth the 'simplicity' of dairy. But fear of them isn't worth chopping it out either! Onwards with the experiment... And thankyou for the reply. I've noticed yours around the place and they're always caring and balanced. Grateful!

[cyclinglady]

After my recent glutening, I have been getting sick.  Not celiac sick, but allergy- type symptoms (stuffy nose, vomiting, severe ab pain that last for 6 to 8 hours).    I looked into a histamine intolerance and it seems to fit (my new symptom is a itchy rash on arms, legs and abdomen that is not DH) but it is that glass filling up thing.  How much is too much to trigger symptoms?  

I need to see my doctor.  Histamine intolerance is not widely accepted in the USA.  But that needs to be discussed along with Mast Cell Activation Syndrome.  Antihistamines help.  Foods?  It is hit or miss!  

One day at a time!  

[DandelionH]

After my recent glutening, I have been getting sick.  Not celiac sick, but allergy- type symptoms (stuffy nose, vomiting, severe ab pain that last for 6 to 8 hours).    I looked into a histamine intolerance and it seems to fit (my new symptom is a itchy rash on arms, legs and abdomen that is not DH) but it is that glass filling up thing.  How much is too much to trigger symptoms?  

I need to see my doctor.  Histamine intolerance is not widely accepted in the USA.  But that needs to be discussed along with Mast Cell Activation Syndrome.  Antihistamines help.  Foods?  It is hit or miss!  

One day at a time!  

Oh wow. That sounds really difficult! But at the same time fairly correlated with histamine intolerance (which oddly enough IF recognised a lot in Australia). Happily it does seem to fade over time for a lot of people and as you say, it's a glass filling up thing so you don't actually have to rule anything out (but have the ominous duty of deciding when the glass is nearing tipping point...)...