Still Having Issues, Where Do I Go For Help?

[jdater]

I was diagnosed celiac about 6 months ago by a doctor who seemed just a little bit clueless (I went in to get tested after my mother's diagnosis, blood tests and endoscopy both were positive for celiac). I went back in 3 months ago for a check up and told him I wasn't feeling much better and asked if I migt be having problems with milk. His response was to say, "I guess a celiac could have some trouble with milk. You might try some lactase pills." And that was it. I did try cutting my milk intake down some (though it's been hard!) and taking the lactase pills. I still feel pretty sick all the time. My question is, should I cut it out completely? Are there other things that could be causing reactions? Should I be going to a different doctor? Are there tests for these other allergens he never thought to consider might also be causing me problems? I just want to feel better. My parents are both in the medical field and have always self-diagnosed and referred, so whenever I have problems I don't know where to go for help. Honestly, I feel akward going to doctors even for yearly physicals (probably why it took me so long to get diagnosed)--as if I don't have a right to be there if I'm not suffering from a life threatening disease ... and tummy issues never seemed to count.

[Guest j_mommy]

I'm sorry you are not feeling better!

It's casien not lactose that most celiacs have a problem with and there's no pill for that! I would try cutting milk and diary out for awhile and see if that helps!

You could see an alergist...they will check for numerous things....but they won't check for casien just lactose but atleast you could find out if you have a problem with that!

Have you tried keeping a food diary???? I did that when I was having problems and was able to find out that it was Mt. Dew causing my tummy issues(not from gluten but my tummy just didn't like Mt. Dew anymore!)

Have they done 6 month blood work to see if your antibody levels have come down???

[Offthegrid]

I experienced that, and *thought* I was getting glutened all the time. I was drinking all Lactaid when I used milk at all and didn't know what was making me sick. By trial and error, I've figured out recently that it is the casein in milk I am reacting to, not lactose.

I tried goat's milk for myself, because *some* can tolerage goat when they can't tolerate cow, but that didn't fly with me either.

Try switching to Blue Diamond Almond Milk for now. It's *delicious*. I don't know that I'd drink a glass by itself, but I forgot it wasn't real milk on my cereal.

Instead of butter you can use some margarine. Just make sure it's gluten and casein free. Fleishmann's *unsalted* is OK. There are some other brands that are fine, too. I got my spread from Wegmans so it is labeled gluten and dairy free.

Also, be careful of *anything* that says non-dairy. If it has sodium caseinate and you can't have casein, then you're going to react to it. (That means no International Delight in the coffee, sadly.)

You can also get gluten and dairy free chocolate. Some dark chocolates don't use milk fat.

I will warn you that it's possible you may also be sensitive to soy. I think I might be, but it's going to take some time and further experimentation for me to find that out.

Best of luck. But I'd say for now go off all dairy altogether.

[hathor]

It could be you are regularly and inadvertently glutening yourself. Are you operating from a good comprehensive list of safe, unsafe, and "need to be investigated" ingredients (like natural or artificial flavors), or just recommendations from your clueless doctor? Have you gotten rid of items in your kitchen that might harbor gluten, like cutting boards, and instructed other family members how not to contaminate shared items? Have you checked out all supplements & medicines to make sure they don't contain gluten -- you can't rely on the label here, unless it says "gluten free." What about personal care items, like toothpaste, lip balm, etc.?

Assuming no glutening, another food intolerance is a likely reason for your symptoms. Casein seems to be the most common, with soy coming in third. It may be other things, unfortunately. This is where a food and symptom diary can be useful. (Or drive you nuts ) If your symptoms don't seem to wax and wane, it would seem that something you have all the time is bothering you.

What are your symptoms BTW and a typical day's diet? That might help in giving you advice.

The other testing I am most familiar with is that of Enterolab, which can test for intolerances to casein, egg, soy & yeast.

There are other tests out there for food intolerances, ranging from blood tests to something done by kinesiologists which involve muscle reactions or something. But those who have tried these or researched them will have to tell you more.

It won't hurt you to go casein-free and see how you feel. If you feel better but still not completely better, then try cutting out soy.

If this doesn't do it, you can go on an elimination diet. Here is a link with a description of one such diet. It also mentions the most common food sensitivities. I suppose it would be worth it to try eliminating just these items before doing the entire long and tedious elimination diet.

Open Original Shared Link

[UR Groovy]

There are a lot of things that could be issues. Hate to throw another one into the mix, but one of the things that I never would have guessed for me was monosodium glutamate - MSG (watch for yeast extract while testing it - if you decide to test it, that is). It's a long shot, but you may want to check your labels and see if there's a trend that coincides with that - keeping a food journal is the way to catch that one (I believe). If you don't have issues with it, that'll be one more thing you don't have to worry about.

Casien is probably more likely though.

I hope you find your culprits - it can be an arduous task, but it's worth it in the end.

[hathor]

Many celiacs test positive for antibodies to Sacc. cer. (I abbreviate because I'm too lazy to look up the spelling right now), also known as baker's or brewer's yeast. Whether they react adversely to consumption of that yeast is not something I've been able to find out despite my research.

I have such antibodies, but haven't tied yeast consumption to any symptoms in myself. But then I haven't been truly yeast-free until recently, not having realized that I should have cut out wine. Maybe I didn't want to know