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I Need Gluten!

VydorScope

By VydorScope
in Coping with Celiac Disease

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Mango04 Enthusiast
Mango04
Posted
I think if I were in your shoes (and I may be in a similar situation someday) I would proceed with caution since the symptoms could develop over time. Its weird how these intolerances work but I dont think everyone would experience an immediate reaction from gluten...it could build up. Someone with a casein intolerance (I think Mango04??) recently posted that after alot of years dairy free she introduced some dairy...felt fine for a few weeks...then wham...symptoms came back. It would be great if you dont have to worry about gluten but just keep it in the back of your head in case symptoms start to slowly reappear.

Yep that was me :) Definitley be careful with your gluten experiement Vincent :) Hope it works out okay.

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Guest BERNESES
Guest BERNESES
Posted

I'm glad you're going to stick around too! casein.com sounds like a website where they'd sell drugs :P

VydorScope Proficient
VydorScope
Posted
  • Author

Still no reaction. I guess I can safly say that a almost FULL BOX of shredded wheat in less then 12 hours, did not due me in.. then I realy dont have to worry about gluten for me. Ug... so lets see..

Me: No Dary

Wife: No unknonw nuts or brazil nuts or any risk of cc AT ALL.

Son: No Egg, no wheat, no barely, no rye, no oats, no malt, etc...

Sheesh... I dont want to know whats next!

breadlover Newbie
breadlover
Posted

You need WHOLE FOODS or Natures pantry OR trader joes they have the best soy cheese pizza, soy cheese parm, soy cheese macaroni. yum yum yum. And they have a gluten free aisle for your son.

VydorScope Proficient
VydorScope
Posted
  • Author
You need WHOLE FOODS or Natures pantry OR trader joes they have the best soy cheese pizza, soy cheese parm, soy cheese macaroni. yum yum yum. And they have a gluten free aisle for your son.

THanks!

We go to a wild oats... but although it almost seems like heresy here, I have stated many times that I do not like the taste of soy, and yes I have tried several different brands. Cheese is pretty much gone I think, but DariFree works as "milk" and "icecream" at least!

VydorScope Proficient
VydorScope
Posted
  • Author

Okay to recap...

Few weeks ago I drank a whole cup of milk, something I almost never do, its just not my taste. I got very sick from it. This got me thinking.. since I have never really gotten better yet, even though I have been gluten free since December. I went back over the facts that I had surrounding celiac disease:

1) My son has it, that means I have to have the gene for it - required for celiac disease.

2) Every time I did a gluten challenge (3 times) I got sick - this is considered diagnostic.

3) Unexplained Anemia - the most common symptom of celiac disease.

4) Unexplained Bone Mass loss - another common symptom of celiac disease.

5) Negative biopsy for celiac disease - Common problem with diagnose is false negative on the biopsy, so I discounted this

6) Negative blood test for celiac disease - I was never given the full celiac disease panel, insurance would no cover it making this test not very useful

7) Blood pressure was elevated when exposed to gluten -- while not a common symptom, its not unheard of plus it is nice and objective.

So based on that my Doc agreed and declare me "Clinically Celiac". How ever over the last several weeks I have some new information come to light, esply with regards to my mom's medical history. I believe the problem is casein. The thing is I tested milk in the past, but I used lactose free milk, or lactate pills, heck I even had a blood test for milk, the problem is there is no test for casein intolerance, and its completely different then lactose, so the lactate stuff would have no impact. So if I rerun the list...

1) Does not apply to casein but does mean I am at risk for celiac disease

2) Every time I did a gluten challenge I used foods like Pizza, chocolate cake, etc that would have dairy in them.

3) Anemia - Common symptom of casein intolerance.

4) Bone Mass Loss - Common symptom of casein intolerance

5) and 6) Negative Tests for celiac disease - Makes sense if I do not have celiac disease *grin*

7) Blood pressure - since my gluten exposure involved dairy, this can be reattributed to casein.

So I test this a couple of ways... first I went completely dairy free, and then tried lactose free dairy products, and got sick. Tried this a couple of times, and got sick each time. Next I went completely dairy free long enough for major symptoms to subside and ate a whole box of shredded wheat in one day. Major wheat overdose, if I have celiac disease I should have gotten be extremely ill from that, how ever I did not get sick at all. I also made cupcakes for my birthday, they were gluten free, and Tim loved them. However they said on the package "Chocolate Chunks may contain traces of dairy from the machinery they are processed on", they also made me sick.

Then I called my mom and questioned her about milk. Turns out she also gets sick from some products that contain casein (esply non-dariy creamer...) . Apparently she is also casein intolerant just not to the same degree of sensitivity as me.

The other piece of this puzzle is when I looked up the symptoms of casein intolerance they are literally identical to the symptoms of celiac disease. I even gave the list to my wife (it was a couple pages long) and ask her to go through it and double check me on that, and she said the same thing.

Based on all that, I say I am casein intorant and just have to cry it out for a while....

So for those of you keeping score..

My son can not have Wheat, Barley, Rye, Oats, Malt or Eggs.

My wife can not have Brazil Nuts, or any unknown nut

I can not have any dairy

I think we will just fast!!!

:huh::mellow::huh::mellow::huh::mellow::huh::mellow:

key Contributor
key
Posted

Vincent,

I too need to give up dairy, but I know I can't have gluten either. I did read somewhere that they do have do rule dairy out, because it presents symptoms like celiac disease. I can't remember where I read it. I didn't know it could cause anemia though. Actually, I take that back. It does happen alot in children that consume alot of dairy, but they aren't eating a very good diet because they are filling up on whole milk. I know that getting calcium is better from vegetables then dairy products.

Last time I tried the gluten challenge, I had stomach pain, diarhea with undigested food, nausea, bone pain, depression, etc. If you didnt' get any of these things, then maybe you don't have celiac. I think you will have to test it for a month to truelly know. It might take awhile for you to start feeling bad again. I agree though that dairy can mimic the symptoms of celiac disease.

Goodluck,

Monica

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Mango04 Enthusiast
Mango04
Posted
So for those of you keeping score..

My son can not have Wheat, Barley, Rye, Oats, Malt or Eggs.

My wife can not have Brazil Nuts, or any unknown nut

I can not have any dairy

I think we will just fast!!!

:huh::mellow::huh::mellow::huh::mellow::huh::mellow:

Your family sounds like mine!

I cannot have gluten, dairy or soy

My mom cannot have eggs

My dad cannot have dairy, gluten or nightshades

My brother cannot have dairy

My sister cannot have nuts

Surprisingly, we eat plenty of amazing food together! :P

Guest BERNESES
Guest BERNESES
Posted

Wow! Vincent- don't you feel like sometimes we are all our own medical experiments. I've been thinking a lot about this lately. It would be great if you didn't have celiac's (God knows- casein is hard enough). Just keep an eye out for a few months and Ii wouldn't go overboard if I were you-just in case.

cornbread Explorer
cornbread
Posted
the problem is there is no test for casein intolerance,

Yes there is: Open Original Shared Link

Click on 'test for cow's milk protein sensitivity'. Cow's milk protein = casein.

It's $99. Well worth it to know for sure.

cgilsing Enthusiast
cgilsing
Posted
Get your attn? LOL Is that like running into a pack of vehment PETA folks and screaming "BEEF! ITS WHATS FOR DINNER!" ? LOL

LOL!!!

Vincent! I'm sorry I came in on this so late! Have you had a genetics test done for celiac disease? It looks good from what you have written that you may be good for gluten....I'm so sorry about the dairy though. Live it up Vincent! Go have a beer for all of us!!! :D

VydorScope Proficient
VydorScope
Posted
  • Author
Yes there is: Open Original Shared Link

Click on 'test for cow's milk protein sensitivity'. Cow's milk protein = casein.

It's $99. Well worth it to know for sure.

I believe thats only the IgE alergy test, which is different, and I already got that from my local doc for a $20 copay.

cornbread Explorer
cornbread
Posted
I believe thats only the IgE alergy test, which is different, and I already got that from my local doc for a $20 copay.

Nope, it's for an IgA intolerance test (the life-time kind). Trust me - I did it. :) They do IgA tests for gluten, casein, soy, yeast and eggs.

VydorScope Proficient
VydorScope
Posted
  • Author
Nope, it's for an IgA intolerance test (the life-time kind). Trust me - I did it. :) They do IgA tests for gluten, casein, soy, yeast and eggs.

HMMMMM. Well if I ever get that kind of money, I might try it, but realy it would only be as confirmation for what I know. Thanks for the tip though.

  • 2 weeks later...
VydorScope Proficient
VydorScope
Posted
  • Author

Just an update... have had gluten a few times (but not in that quantity) since hten still no reacction. BP has even reaminded normal, and hat was one of the few objective measures I have had in the past.

SooooOOooOOooOOo now the scarey part... need to go by some milk :o

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