22 replies to this topic

[Lisay]

Thank you, this is my first day on this site and I plan on reading and learning a lot. My doc wanted me to get another biopsy and I declined. All I know is that as soon as I eat gluten I get sick and I don't want to get any more tests. The past 2.5 years I had every test under the sun, was told I have IBS and even MS ...the 6 months eating gluten-free I felt like a new person. I need to listen to my body and keep gluten out of it.

[Mperkins1224]

Just a thought, I didn't read all the posts but... I've been gluten-free for at least 2 years if not more, I just tried casein free... See what happens. Same things happened to me, but the stomach aches were coming back more frequently so I decided to try it...I saw immediate results. Best of luck. Ps don't eat gluten again, it's not worth it!!! Never know what your reaction will be this time!

[Lisay]

Is casein milk ? All dairy ? Wow , is it difficult to eat gluten free and dairy free? I do really well for a while gluten free then I will have a slice of pizza or bread and within minutes I have symptoms, I need to completely eliminate it forever. I do get cramps sometimes with dairy, especially ice cream. I am excited about this site :-) thank u

[psawyer]

Is casein milk ?

Casein is the protein in cow's milk. Lactose is the sugar in it.

Most people with celiac disease have issues with lactose until their intestines heal enough that the villi can again produce the enzyme lactase, which is needed to digest lactose. They can then reintroduce dairy.

If your issue is with casein, then a completely dairy-free diet is needed. You may be able to tolerate ghee.

If you tolerate casein, but have trouble with lactose, some cheeses may be okay for you. The harder the cheese, and the longer it has aged, the less residual lactose in it. For example, Parmesan and old Cheddar are low in lactose. Brie and Camembert have much more lactose content.

[mushroom]

Milk is made up of milk sugars (lactose), protein (casein) and fat. Most celiacs do not tolerate milk sugars when first diagnosed because the damage to their small intestine means they cannot produce the enzyme lactase; however, they can often tolerate yogurt, hard cheese, dairy products where the lactose has been removed or predigested. Casein is digested by a different enzyme and if you are casein intolerant it means you really can't have any dairy. Those who are only lactose intolerant can normally resume dairy once their guts have healed.

Ice cream, cream and milk are very high in lactose; butter is mostly fat; cheese is casein and fat mostly. Many posters on the board are dairy and gluten free and there are plenty of recipes and threads on this.

(Posting at the same time as Peter )

[Lisay]

Thank you both ! This is extremely helpful, I will search the boards and starting today eliminate casein as well. I seem to be okay with yogurt so it makes sense now.

[designerstubble]

Hi safetydancepants (good name!!)
I am in the same predicament as you!
What have you decided?
My blood work came up positive, I was very very ill, and decided to go gluten-free. I ended up waiting for 3 months for an endoscopy so I am glad I gave up the gluten. However. My consultant doc said there was no point doing the endo until I started eating gluten again, I pushed her, and she did it. She found a hiatus hernia and scalloping of the duodenum (3-4 months after being gluten free). They pulled the endoscope out unfortunately as I was apparently naughty and started biting on it!!
She then insisted quite vehemently I had to do a challenge anyway!
Ha! What are these people on?
I have to go in March 2013. I have decided that they can stick their gluten challenge 'where the sun don't shine'...
Have the endo, see what they find. Who knows? Good luck, love to know your outcome

[SafetyDancePants]

Original Poster back to let you all know how it went:

I stuck to my guns and refused the gluten challenge. I just had my endoscopy yesterday, so I don't have my pathology results yet, but just by looking, my doctor found a hiatal hernia and an area of irritation that he believes to be caused by acid reflux. I am amazed how negative my GI is -- he told me over and over that 'daily nausea may just be what is normal for you,' and even said that after the endo and finding those issues. I've continued to tell him that I am not willing to accept that I will be sick the rest of my life (I am 25 -- I have a lot of potentially healthy years ahead of me!). I am going to get my biopsy results (looking for H. Pylori and a few other things, not celiacs since I haven't been eating wheat) within the next 2 weeks, and I am doing one further test with this GI -- a breath test that monitors how my body and bacteria in my stomach digests sugar water after a day of fasting, that is supposed to indicate some specific kind of bacteria overgrowth. After I finish those tests, I will be taking my test results and high-tailing it back to my naturopath, where we can look at options to treat these things.

I will post again once I get my pathology results, but wanted to give an update at this point. Thanks again to everyone who helped me make the right decision!