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Milk?


Bread Belly

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Bread Belly Newbie

What's the story with milk and celiac's disease?


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rsm Newbie

It was a complete surprise to me. I went gluten free in March 07 and with one week could not tolerate dairy. Healing villi do not get along with lactose. So, I'm now dairy and gluten free, life is much better without both!

kbtoyssni Contributor

Lactose (the sugar in milk) is digested by the tips of your villi, so if they are worn away due to celiac, you will have trouble digesting lactose until you heal.

It also seems that a lot of celiacs have trouble with casein (the protein in milk), too, and this is not something that goes away with healing. I've often wondered if there's a similarity in the structure of gluten protein and casein protein that causes so many celiacs to have trouble with both. I never hear about casein problems anywhere else. Of course, I'd never heard of gluten problems before this, either. So either there's a strong correlation between someone having issues with both proteins or celiacs are just more in-tune with how foods make their bodies feel and willing to give up foods to feel healthy.

goldyjlox Contributor

The doctors told me that I needed to be off Dairy for 3 months until I healed a bit. I have found it harder to be off of Dairy then gluten itself. But I have recently had a spoonful here and there of ice cream and never had a problem so I dont think that I will have to be dairy free for longer then the 3 months. I drink DairyLand Lactose Free milk and it tastes very similar to regular 1% milk and I will probably stick with it. I am really picky with milk.

loco-ladi Contributor

Being that I am self diagnosed (who needs another dang doctor anyways they're to opinionated) I did not know about the milk issue, but not knowing how to read labels when I started ended up failing at my goal however learning now I should have excluded milk was a bit late.....

now my cousin on the other hand, still cannot do milk but then she was undiagnosed for about 40+ years... could take her years and years to heal.

now as for my sister, she is dairy free but is unable to deal with the fact she also has celiac, admitting you have a problem is the first step isn't that right! well she is about to get a first hand look at my gluten-free lifestyle :blink:>:) she is coming to visit..... and will be here for 2 weeks....... either she will eat my food or go hungry (mwuhahahahahaha) then lets see what she says.

OK, OK I will TRY to be gentle with her but not going to make any promises. :P

Mom23boys Contributor
I've often wondered if there's a similarity in the structure of gluten protein and casein protein that causes so many celiacs to have trouble with both. I never hear about casein problems anywhere else. Of course, I'd never heard of gluten problems before this, either. So either there's a strong correlation between someone having issues with both proteins or celiacs are just more in-tune with how foods make their bodies feel and willing to give up foods to feel healthy.

I am a long time milk allergic person. I was always told to use caution with wheat because the proteins are similar. In a recent meeting with our nutritionist I was told for the 3 milk allergic in our house to go off gluten for a period...which brings me here because there was a marked improvement.

gfpaperdoll Rookie

Mom23 boys - it would be interesting to see which genes you have. I would guess that you have at least one DQ1 gene. I know someone that has that shell fish allergy that is also DQ 1 - I am double DQ1 & it comes with food allergies. It is also my experience that if you are dairy intolerant, it is almost a given that you are gluten intolerant.

I strongly suggest testing at Enterolab.com for you.

you could be set up for osteo etc, if you do not check to see if you have a gluten problem.

I think it would also be interesting to check everyone that has an anaphylactic allergy to see if they have a gluten problem. It is my guess that the constant inflammation from gluten & dairy sets one up for the greater risk of an anaphylactic reaction.

Goldy, drinking 1% lactose free milk, is still drinking milk :)

you have to get off all dairy to get over the craving, dairy is even more addictive than gluten...

If your doctor wants you to be dairy free - you are not ;)

my sister who also cannot handle dairy was making the same mistake with her coffee creamer, she thought lactose free meant dairy free - when she cut it out her D got better...


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Mom23boys Contributor

gfpaperdoll -- very interesting. Our nutritionist also believes that we can pretty much get rid of our other allergies once we are both CF and gluten-free for a while. She kind of had your thoughts about the inflammation.

She wants us to do this for a while then us have the oldest retested on nuts (non ana). I have recently tested negative to shellfish but am too chicken to do a physical test (highly ana at one time). She is also suggesting the G.I.T.

What is that at Enterolab? Does insurance cover it? $$??

gfpaperdoll Rookie

mom23boys, some insurance will cover enterolab - you have to check, but if you go thru insurance it goes on your medical records. The cost varies with what tests you have run. I think the gene test alone is $169.00 - not sure as I have not been on that site for a bit. It is better to get the gene test thru them because they also test for DQ1 & DQ3 in addition to DQ2 & DQ8.

you can go to their web site & check them out & get the prices - they are all posted there.

re allergies, yes they do get better once gluten-free/DF - at least mine did. The only thing is that I do not think the really bad anaphylactic ones ever go away - I would not mess around with those, but I have read that your reaction might be less once you have been gluten-free/DF for awhile.

Once I went gluten-free/DF I could add in tomatoes, corn, pork, peaches, citrus - I cannot tell you what a joy it is to eat an orange!!!!!!, I can even add in the occasional white potato, when at a restaurant & have no other choices, but only rarely. I believe that potatoes are very harmful to us...

On the opposite side of the spectrum I think sweet potatoes are a gift!!!! I still have some things that I am not interested in adding back to my diet so have not even tried those, beef for one thing. Now if I could get some Texas home grown grass fed beef, I might try it, but otherwise I am not interested in eating what passes for beef these days. I have been allergic to barley & oats since I had my allergy testing about 1972. I was also allergic to English Peas & to split peas & have not added those in because I think for the most part legumes are not healthy for you either. I do eat home cooked pinto beans occasionally - which is okay for my blood type AB+. I am also allergic to black pepper & chili powder, which makes my cheeks flush hot & gives me pains in the ends of my fingers from the knuckle to the finger tips - & it is very painful, I do not use it at home & have not noticed a problem at restaurants since I have been gluten-free.

For anyone with allergies, I also recommend the book "Eat Right For your Blood Type" it is not a gluten-free book but the author does say how bad wheat & dairy are for us all... I cut out a few things that I was eating that I was not supposed to & noticed a huge difference. I also made a couple of adjustments to my diet & added in some things that were supposed to be beneficial to me. If you know that you cannot eat a food, just cross it out & see what you are left with. For me I know I cannot eat mushrooms, so I just crossed those out. very interesting results to see what beneficial foods you end up with. I also switched from Chicken to Turkey & noticed a big difference. Oddly enough my son (who has at least one of my DQ1 genes, because he passed it to his son) is allergic to turkey. It makes him sick as can be - he will turn almost green instantly... my son (now 37) is also allergic to peanut butter, it gives him hives or a rash, & he keeps trying to eat it...

re food allergies, also watch out for combinations of foods. that can also do you in. Like if you eat corn you might not want to eat a white potato on the same day - that kind of thing.

wishing you the best in your food journey to good health

Yellow Rose Explorer

For Texas Home Grown Grass Fed Beef check out PaiDom Meats website.

Yellow Rose

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      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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