RE: Re: Continuing symptoms and alcohol

[Guest guest]

Hi all,

I too had continuing symptoms long after my diagnosis. In my case there were 2 factors. 1) Malnutrition. This I treated by taking a lot of vitamins (gluten-free of course). The most helpful were Calcium, Magnesium, Potassium, B-Complex, and B12 (under-the-tongue for better absoption). I still take these occasionally when I am feeling a bit woozy or out of energy. I think our Celiac systems never really quite return to normal. 2) Cross-contamination. It took me about 2 years to really eliminate all gluten from my system. To do this I actually completely stopped eating out, threw out all my old cooking items, including my favorite bamboo spatula, and stopped sharing cooking implements such as the strainer and teflon pots with my roommates. Within a month of my so-called no-tolerance decision, I was feeling truly healthy for the first time in years. Within a few more months, I was actually able to

exercise. And my physical health and fitness is now nearly what it was before Celiac, despite being several years older.

About the alcohol, I too get severely sick from any gluten-grain-based liquor, even if it is distilled. The last time I had gin (Bombay, my former favorite) it was a truly awful experience and I was sick for days after. I don't care what the scientists say (and I am a scientist myself), my body tells me that there IS gluten in that stuff. And my body is more sensitive than their instruments. I drink rum, wine, tequila and those have been fine.

All the best,

----- Original Message ----From: "TrVerb@..." <TrVerb@...> Sent: Thursday, September 11, 2008 8:31:00 AMSubject: Re: [ ] Re: Continuing symptoms

Hi, I really appreciate this question about continuing symptoms and diagnosis. I was diagnosed this past March and have no doubt the diagnosis was right, as it is based on both the antibodies test as well as the biopsy. (I can see questioning the diagnosis if it's just based on symptoms or bloodwork, though the numbers on my bloodwork led the doctor performing the biopsy to say, "With numbers like these, it would be almost impossible for us not to see classic celiac damage in the biopsy.") I still have my main symptoms which led to my diagnosis - neuropathy and fatigue; which is caused by extremely low levels of B-1. I also have low D & E. I wonder if for a lot of us, our symptoms are tied to low vitamin levels,

which are low from our bodies not being able to absorb vitamins due to the damage caused by the disease. It apparently can take a very long time for the body to start absorbing vitamins and storing them properly again after going gf.Also, not eating whole grain fiber can have a deleterious effect on our gi tract, and it can be hard to get enough fiber once you've gotten rid of whole wheat products.I appreciate the other comments too, about other foods that cause problems. Especially if there are digestive issues (which I have fortunately never had -- and never will, knock on wood!), I would think other food sensitivities could be causing symptoms similar to c.d.Good luck! ************ **Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com.(http://www. stylelist.

com/trends? ncid=aolsty00050 000000014)

[Guest guest]

Except there's always the possibility of gluten flavoring/coloring being added to rum, tequila, and wine.

I wouldn't drink inexpensive "gold" rums or tequilas produced outside the U.S., or any sort of pre-bottled wine spritzer unless I could check the ingredients. Also, I'd check any sort of flavored, spiced bottled rum drink for gluten status.

H.

In a message dated 9/12/08 9:53:18 PM, lillythdenaghykeogh@... writes:

Rum, tequila, & wine.  Everybody say it with me – rum, tequila & wine…

**************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

I had exactly the same experience and, at a point, did exactly

the same with a “no-tolerance” decision as puts it. Worked for me too.

Quick question: What vitamin b and b12 do you use?

From:

[mailto: ] On

Behalf Of

Sent: Thursday, September 11, 2008 10:57 PM

Subject: Re: [ ] Re: Continuing symptoms and alcohol

Hi all,

I too had continuing symptoms long after my diagnosis. In my case there were

2 factors. 1) Malnutrition. This I treated by taking a lot of

vitamins (gluten-free of course). The most helpful were Calcium,

Magnesium, Potassium, B-Complex, and B12 (under-the-tongue for better

absoption). I still take these occasionally when I am feeling a bit woozy

or out of energy. I think our Celiac systems never really quite return to

normal. 2) Cross-contamination. It took me about 2 years to really

eliminate all gluten from my system. To do this I actually completely

stopped eating out, threw out all my old cooking items, including my favorite

bamboo spatula, and stopped sharing cooking implements such as the strainer and

teflon pots with my roommates. Within a month of my so-called

no-tolerance decision, I was feeling truly healthy for the first time in

years. Within a few more months, I was actually able to exercise.

And my physical health and fitness is now nearly what it was before Celiac,

despite being several years older.

About the alcohol, I too get severely sick from any gluten-grain-based

liquor, even if it is distilled. The last time I had gin (Bombay, my

former favorite) it was a truly awful experience and I was sick for days

after. I don't care what the scientists say (and I am a scientist

myself), my body tells me that there IS gluten in that stuff. And my body

is more sensitive than their instruments. I drink rum, wine, tequila and

those have been fine.

All the best,

----- Original Message ----

From: " TrVerb@... " <TrVerb@...>

Sent: Thursday, September 11, 2008 8:31:00 AM

Subject: Re: [ ] Re: Continuing symptoms

Hi,

I really appreciate this question about continuing symptoms and diagnosis. I

was diagnosed this past March and have no doubt the diagnosis was right, as it

is based on both the antibodies test as well as the biopsy. (I can see

questioning the diagnosis if it's just based on symptoms or bloodwork, though

the numbers on my bloodwork led the doctor performing the biopsy to say,

" With numbers like these, it would be almost impossible for us not to see

classic celiac damage in the biopsy. " )

I still have my main symptoms which led to my diagnosis - neuropathy and

fatigue; which is caused by extremely low levels of B-1. I also have low D

& E. I wonder if for a lot of us, our symptoms are tied to low

vitamin levels, which are low from our bodies not being able to absorb vitamins

due to the damage caused by the disease. It apparently can take a very long

time for the body to start absorbing vitamins and storing them properly again

after going gf.

Also, not eating whole grain fiber can have a deleterious effect on our gi

tract, and it can be hard to get enough fiber once you've gotten rid of whole

wheat products.

I appreciate the other comments too, about other foods that cause problems.

Especially if there are digestive issues (which I have fortunately never had --

and never will, knock on wood!), I would think other food sensitivities could

be causing symptoms similar to c.d.

Good luck!

************ **

Psssst...Have you heard the news? There's a new fashion blog, plus the latest

fall trends and hair styles at StyleList.com.

(http://www. stylelist. com/trends? ncid=aolsty00050 000000014)

[Guest guest]

Amen, ! And thank you for that.

Science be damned – I’ve read

before that scientists say no one can react to 20 ppm (the current GF standard

here in the states), but *I* do…

Rum, tequila, & wine. Everybody say

it with me – rum, tequila & wine…

From: [mailto: ] On Behalf Of

Sent: Thursday, September 11, 2008

10:57 PM

Subject: Re: [ ] Re:

Continuing symptoms and alcohol

About the

alcohol, I too get severely sick from any gluten-grain-based liquor, even

if it is distilled. The last time I had gin (Bombay, my former favorite) it was a truly

awful experience and I was sick for days after. I don't care what the

scientists say (and I am a scientist myself), my body tells me that there IS

gluten in that stuff. And my body is more sensitive than their

instruments. I drink rum, wine, tequila and those have been

fine.

All the

best,

[Guest guest]

Hi Bronwyn,

My b-complex is from Nature Made (Balanced B-50) and my B12 is from Vitamin World (Sublingual B12 microlozenges 500mcg). So far all of my vitamins have been from these two brands, mostly because they say no gluten or no wheat on the bottle. I think I did contact Vitamin World years ago about whether the B12 was actually gluten free and it was. It's been good for me. I'm not sure if that brand is carried here in SF.

These days I do occasionally eat out, but only once I thoroughly vetted the food, the staff, talked to the chef etc. And once I find a few good places I tend to go back. I also am careful to order items that are most easily prepared gluten free or that I will be able to tell are gluten free (I would see if they made a mistake). That way there are less chances for slip-ups. I also tend to avoid restaurants where I can;t properly communicate my needs to the staff - so no pub food or Chinese for me.

----- Original Message ----From: Bronwyn Syiek <bronwyn@...> Sent: Friday, September 12, 2008 7:37:02 PMSubject: RE: [ ] Re: Continuing symptoms and alcohol

I had exactly the same experience and, at a point, did exactly the same with a “no-tolerance” decision as puts it. Worked for me too.

Quick question: What vitamin b and b12 do you use?

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of Sent: Thursday, September 11, 2008 10:57 PM Subject: Re: [ ] Re: Continuing symptoms and alcohol

Hi all,

I too had continuing symptoms long after my diagnosis. In my case there were 2 factors. 1) Malnutrition. This I treated by taking a lot of vitamins (gluten-free of course). The most helpful were Calcium, Magnesium, Potassium, B-Complex, and B12 (under-the-tongue for better absoption). I still take these occasionally when I am feeling a bit woozy or out of energy. I think our Celiac systems never really quite return to normal. 2) Cross-contamination . It took me about 2 years to really eliminate all gluten from my system. To do this I actually completely stopped eating out, threw out all my old cooking items, including my favorite bamboo spatula, and stopped sharing cooking implements such as the strainer and teflon pots with my roommates. Within a month of my so-called no-tolerance decision, I was feeling truly healthy for the first time in years. Within a few more months, I was actually able to

exercise. And my physical health and fitness is now nearly what it was before Celiac, despite being several years older.

About the alcohol, I too get severely sick from any gluten-grain- based liquor, even if it is distilled. The last time I had gin (Bombay, my former favorite) it was a truly awful experience and I was sick for days after. I don't care what the scientists say (and I am a scientist myself), my body tells me that there IS gluten in that stuff. And my body is more sensitive than their instruments. I drink rum, wine, tequila and those have been fine.

All the best,

----- Original Message ----From: "TrVerb@..." <TrVerb@...> Sent: Thursday, September 11, 2008 8:31:00 AMSubject: Re: [ ] Re: Continuing symptoms

Hi, I really appreciate this question about continuing symptoms and diagnosis. I was diagnosed this past March and have no doubt the diagnosis was right, as it is based on both the antibodies test as well as the biopsy. (I can see questioning the diagnosis if it's just based on symptoms or bloodwork, though the numbers on my bloodwork led the doctor performing the biopsy to say, "With numbers like these, it would be almost impossible for us not to see classic celiac damage in the biopsy.") I still have my main symptoms which led to my diagnosis - neuropathy and fatigue; which is caused by extremely low levels of B-1. I also have low D & E. I wonder if for a lot of us, our symptoms are tied to low vitamin levels, which are low from our bodies not being able to absorb vitamins due to the damage caused by the disease. It apparently can take a very long time for the body to start

absorbing vitamins and storing them properly again after going gf.Also, not eating whole grain fiber can have a deleterious effect on our gi tract, and it can be hard to get enough fiber once you've gotten rid of whole wheat products.I appreciate the other comments too, about other foods that cause problems. Especially if there are digestive issues (which I have fortunately never had -- and never will, knock on wood!), I would think other food sensitivities could be causing symptoms similar to c.d.Good luck! ************ **Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com.(http://www. stylelist. com/trends? ncid=aolsty00050 000000014)

[Guest guest]

Very true. Therefore, I always avoid flavorings, colorings and anything "fancy". Give me good tequila, rum or wine, and give it straight. (Ok, maybe add some pineapple juice.)

----- Original Message ----From: "flatcat9@..." <flatcat9@...> Sent: Friday, September 12, 2008 9:57:34 PMSubject: Re: [ ] Re: Continuing symptoms and alcohol

Except there's always the possibility of gluten flavoring/coloring being added to rum, tequila, and wine. I wouldn't drink inexpensive "gold" rums or tequilas produced outside the U.S., or any sort of pre-bottled wine spritzer unless I could check the ingredients. Also, I'd check any sort of flavored, spiced bottled rum drink for gluten status.H.In a message dated 9/12/08 9:53:18 PM, lillythdenaghykeogh @comcast. net writes:

Rum, tequila, & wine. Everybody say it with me – rum, tequila & wine…************ **Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com.(http://www. stylelist. com/trends? ncid=aolsty00050 000000014)

[Guest guest]

Oooooooooh – rum & pineapple juice, my

favoriteI!!!

From: [mailto: ] On Behalf Of

Sent: Friday, September 12, 2008

10:49 PM

Subject: Re: [ ] Re:

Continuing symptoms and alcohol

Very true. Therefore, I always avoid flavorings, colorings and

anything " fancy " . Give me good tequila, rum or wine, and give

it straight. (Ok, maybe add some pineapple juice.)

----- Original Message

----

From: " flatcat9aol " <flatcat9aol>

Sent: Friday, September 12, 2008 9:57:34 PM

Subject: Re: [ ] Re: Continuing symptoms and alcohol

Except there's always

the possibility of gluten flavoring/coloring being added to rum, tequila, and

wine.

I wouldn't drink inexpensive " gold " rums or tequilas produced outside

the U.S.,

or any sort of pre-bottled wine spritzer unless I could check the ingredients.

Also, I'd check any sort of flavored, spiced bottled rum drink for gluten

status.

H.

In a message dated 9/12/08 9:53:18 PM, lillythdenaghykeogh @comcast. net

writes:

Rum, tequila, &

wine. Everybody say it with me – rum, tequila & wine…

************ **

Psssst...Have you heard the news? There's a new fashion blog, plus the latest

fall trends and hair styles at StyleList.com.

(http://www. stylelist. com/trends? ncid=aolsty00050 000000014)