Newly Diagnosed.....SO Many Questions!

Lesley · Post by **Lesley** » Sun Nov 20, 2011 9:39 pm

If he were a GI specialist, he would have laughed at those patients and told them to continue eating gluten

Mine said cutting out gluten couldn't do me any harm, though it wouldn't make a difference.

Post by **tex** » Sun Nov 20, 2011 10:17 pm

Deb wrote:I hope we're first in line for autographed copies!

LOL. I reckon you will be, if I can just get it wrapped up. I keep rewriting parts of it.

Tex

Fish2575 · Post by **Fish2575** » Mon Nov 28, 2011 4:32 pm

Thanks everyone! Great info, I will look up that topical magnesium and appreciate all of the insight! Suze, I agree with you about the trying to figure everything out. Each individual is different, but I appreciate you all helping me get headed in the right direction!

draperygoddess · Post by **draperygoddess** » Tue Nov 29, 2011 7:34 am

Tex,

Your book will be the foremost authority on gluten sensitivity and how diet affects health! Can't wait to see it!

Zizzle · Post by **Zizzle** » Tue Nov 29, 2011 12:30 pm

Welcome Susie!
I'm like Suze on the legume issue. I can't do soy (milk, tofu, edamame, soy protein), but I can have small quantities of soy lecithin and foods cooked in soybean oil. I also have occasional GF soy sauce (where the proteins are fermented and hydrolyzed) without trouble. I have no trouble with beans, lentils or peanuts unless I overdo them (mostly from the fiber and gassy qualities). I'm half Latina so beans cannot be removed from my diet!

Regarding celiac and MC, my gastroenterologist wouldn't entertain the possibilty since I had negative blood antibodies 5 years before my LC diagnosis.

So I went to see the famous Dr. Fasano in Baltimore and he said, "We used to think celiac disease was only limited to the small intestine and the colon was spared. Now we know otherwise." My current enlightened doc also believes that my celiac genes, swift and severe reaction to gluten, and other autoimmune issues equals celiac disease.

Regarding magnesium testing, my new doc ordered an intracellular magnesium test which involved scraping cells from under my tongue and putting them on a slide.

Post by **tex** » Tue Nov 29, 2011 1:23 pm

Zizzle wrote:Regarding magnesium testing, my new doc ordered an intracellular magnesium test which involved scraping cells from under my tongue and putting them on a slide.

Good for him. That's the correct test - the blood tests are useless for measuring magnesium sufficiency.

Tex

draperygoddess · Post by **draperygoddess** » Tue Nov 29, 2011 10:24 pm

Hey Zizzle,

Okay, I'm glad you said that about the peanuts--I was beginning to think I was reacting to them, but I seem to have the same issues--a few are okay, a lot is not. And the soy lecithin in my coffee creamer doesn't bother me (though if I have more than one cup, SOMETHING bothers me, don't know whether it's the creamer or the coffee!). So the key is moderation, no? (I haven't gotten my Enterolab results back yet, so I could be totally off base!)

Zizzle · Post by **Zizzle** » Wed Nov 30, 2011 9:48 am

Cynthia,
Yes, I think many of us here believe that some foods require a bigger dose to cause a reaction, and this dose is completely different for each individual. So there can be lots of trial and error to figure it out. Of course this does not apply to gluten and dairy, where any amount is too much. I've always wondered how ANYONE with MC can drink coffee. It sends me straight to the bathroom. But it does that for many healthy people too - people drink it to make them go. Although I've been enjoying near-remission lately and I can drink a quarter cup of coffee with no trouble. A whole cup? Watch out!!

sarkin · Post by **sarkin** » Wed Nov 30, 2011 10:02 am

Coffee actually sits better with me now than it did before - go figure. (It was never terrible, though.)

I tested negative for soy via Enterolab, but I had been legume-free for several months, and I thought my number was possible suspicious (it was 8 or 9, I believe - so I wondered whether it might not have been 10 or 11, had I continued eating legumes). I don't know whether I have an overt reaction, but without a doubt I feel better without it. I was looking at a tinted lip-balm with soybean oil yesterday, and just couldn't make myself buy it.

With the amount of soy that's in *everything* - no wonder so many people have at least a mild reaction... I think anything that causes me to react (however mildly) is likely to escalate, if I continue to consume it regularly - at least while I'm healing. Maybe thereafter, when the whole immune response is calmed down, the risk will be less?

draperygoddess · Post by **draperygoddess** » Wed Nov 30, 2011 1:18 pm

As for coffee, I have found that one cup in the morning is usually not a problem, unless I'm already having issues from something else. However, coffee (even decaf) at night doesn't sit well, for some reason. I'm really, really hoping my soy test is negative, because if I can't have my GF/DF creamer, I won't drink coffee.

sarkin · Post by **sarkin** » Wed Nov 30, 2011 1:48 pm

Cynthia,

There's more than one creamer out there! What brand are you using?

If soy is not your friend, you'll find your creamer (even if you have to make it yourself! - but I bet you won't have to).

I can tell you're less addicted to coffee than I am... but as a black coffee drinker, I was never up against this particular wall! And I rarely drink a later cup of coffee - once in a very great while, and I can rarely finish a whole cup. Funny how the rhythms of our day (and our digestion) are so personal, right?

I know it's silly, but I am on tenterhooks awaiting your Enterolab results. I can imagine how you must be feeling!

Fish2575 · Post by **Fish2575** » Wed Nov 30, 2011 4:42 pm

I use So Delicious Coconut Milk Creamer. I had to get used to something different, but no allergens, and it tastes pretty good. And it is creamy.

Deb · Post by **Deb** » Wed Nov 30, 2011 6:05 pm

Zizzle, I think my morning coffee always helped me "go" too but when I was really flaring I eliminated it. I think I had C most of my life due to my gluten issues and coffee helped. Anyways, once things settled down I am now able to enjoy 1 to 1 1/2 cups of coffee...more than that and I just get too jittery.

humbird753 · Post by **humbird753** » Fri Dec 02, 2011 11:14 pm

Hi Fish,

I am new here also. I want to take a moment to greet you.

I am sorry I don't have words of wisdom like many of them here have. My first visit to this site was Tues., 11/28. I have gotten a lot of great information from so many people.

I was diagnosed with LC in June of 2010. The truth is that I don't fully understand it even today, but I am at least understanding that a GF diet is an important place for me to start. Now I have to find out what I can eat (frustrating). That will be my priority tomorrow (surf the internet and go shopping).

I hope you are finding as much comfort as I am now that you have found this web site.

Take care,

Paula

I believe we can all do this!!!

Fish2575 · Post by **Fish2575** » Fri Dec 16, 2011 7:29 pm

Okay, so I got my test results today. The only surprises to me were chicken and almonds. Can anyone tell me how true the "extra" food sensitivity tests are? And does the higher number indicate higher sensitivity? Haven't had any gluten since February. Not hardly any dairy or soy for two years.

Yeast 15 (not surprised)
Gliadin 76 (not surprised)
Casein 35 (not surprised)
Chicken Egg 14 ( does the low number have something to do with why I can tolerate eggs in baked goods)
Soy 21 (ugh! I am not really surprised and not a fan of soy anyway)
Mean value antigenic foods 12 (have no idea what this means)

"Food toward which you displayed most immunologic reactivity: Tuna, Chicken, Corn, Almond (I haven't had tuna since I was a kid)
"Food toward which you displayed intermediate reactivity: Cashew, Pork, Walnut, Oat
"Food for which there was no significant immunologic reactivity: Rice, Beef, White Potato

HLA-DQB1 0302 (Celiac?)
HLA-DQB1 0604(non celiac gluten sensitivity?)

I have been in a major flare since I decreased the Entocort from 9 mg to 6 mg. I can feel the inflammation! Fatigue, joint pain, and rash! Since I have not had any gluten or dairy or soy protein I am wondering if it is 1. Soybean oil or soy lecithin, 2. Peanut butter that I was using to make banana smoothies 3. pinto beans. Or does your body just sometimes flare regardless of what you eat? Thanks for the feedback and support!