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Gwendolene

Communion

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I am still trying to figure out what the meaning of 20 parts per million that the fda is saying and or studing means in real terms. I can't seem to get any answers from any one on this question :(

It's far more complicated of a problem than "you can have 20ppm of gluten".

1) The first thing to realize is that 20ppm is a density, not an amount. You could have bread that had 20ppm of gluten, and if you ate 1/4 of a one pound loaf of bread, you'd eat just over 2 miligrams of gluten. If you ate another quarter of it later that day, you'd have 5 milligrams of gluten that day.

2) They're not saying "you can have this much every day", they're saying "this is a reasonable amount for companies to reduce their gluten density to that can be tested without much risk of damage".

3) As has been pointed out, she's getting contamination in various forms unless she lives - literally - in a gluten free bubble. Purposefully eating known 'toxins' only adds to the burden of the contamination we are already exposed to, needlessly.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I am also Catholic, and I agree - NO amount of a normal host is safe. It's a sad and harsh reality, no doubt about that. The Benedictine Sisters have created an extremely low gluten host that is made with wheat starch, as opposed to wheat flour, and it has been approved for use in the US. They are .01% gluten - which some have determined to be a "safe" level for Celiacs. (not my personal opinion... just reiterating what their website states)

http://benedictinesisters.org/english/site...?use=low_gluten

However, I'm not sure even that's an acceptable alternative. I would be more comfortable being one of the first to receive from an uncontaminated chalice. (Obviously, NOT the presider chalice!) I am still trying to figure this one out for myself. My son, who was just dx - will no longer receive the host. It is his choice to simply receive a blessing. I do not feel that *any* amount of gluten is acceptable for him.

My daughter not only has Celiac... but she's also allergic to wheat. So, when she is of the age of reason where she is able to make her first communion, I honestly have no idea what we'll do.

And, it poses an extra special little issue for me... since I'm the Sacramental Prep teacher at our church. I'm taking my 2nd grade class to Mass next week... and I have to figure out how to approach the topic of how important the Eucharist is... yet, let them know that I can't receive it because it'll make me sick. This is going to be interesting. =(


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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I know it's tough to read all this - especially after going through all the tough work to figure out what to do in the situation. But the studies on gluten exposure have shown that gluten exposure even once a month negates the majority of long-term benefit of the diet, and raises the risk of intestinal cancers, lymphoma, and a shortened life span to nearly the rates of untreated celiac.

I'm sorry to be the bearer of bad news, but I really hope that you and your daughter and your priest will revisit the issue. Perhaps, with her in the congregation, "not always having the wine around" isn't an option any longer.

thanks for backing me up on this one, i think the point may be taken now that others have also explained, i think that a priest may know many things, but probably doesn't know about celiac disease and what may or may not hurt a celiac


Gluten Free since April '04

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The "parts per million" is a guideline for manufacturers. It's not a suggestion for celiacs to adhere to.

For example, Benefiber now has added "wheat" to their fiber product and this is unacceptable to us even though they claims to have so many small parts per million in their processing. In the first place, there was no reason to change the formula and secondarily since the "parts per million" follows guidelines (made by those who don't have celiac I suppose) Benefiber CAN put label on product stating it's GLUTEN FREE.

The regular Roman Catholic hosts have the full luten and the low gluten hosts have same issue as the Benefiber product.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I beleive it was our priest who thought it would be ok, so we will have to explain it some more to him.

First off, I would like to commend you and your daughter for having such devotion. Sometimes, we put so much faith in our priest that we forget that they too are human. Priests may very well know every inch of the bible and the history of religion, but when it comes to celiac, it's hard for them to understand the seriousness of the situation. After all, half the doctors are up to speed on celiac disease either!

Your priest seems to believe that a crumb is harmless. I wonder would he think the same thing if your daughter had a peanut allergy and the host contained peanuts?

We have to get the mindset of society to change: To a celiac, gluten is poison. Ask your priest if he still wishes to continue to poison your daughter......

Hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Hi There

For me this whole discussing is quite ironic...here's why...was/am Catholic but cannot take communion because I divorced my first spouse for reasons of his infidelity. I remarried without an annulment. Life has never been happier. Since I have applied for one and since I have gone gluten free...hmm...

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bpritt: What does "DVT" in your signature mean?

D.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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bpritt: What does "DVT" in your signature mean?

D.

DVT is short for deep vein thrombosis, i.e., a blood clot obstructing a vein.


DVT since 1991

lactose intolerant since 1993

celiac dx 2-05 by biopsy of small intestine

gluten-free since 3-05

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Our priests really gives her a small tiny piece just where she can receive the body of crist. At some of our masses we do not have wine so she is stuck. She also goes to Catholic school and they have mass weekly. She refuses the host 3 times a month there and just does it once a month in a very tiny peice. I know she should not take any but she is 10 years old and has her mind made up. She never asks to cheat or does and she is very relgious. She is not super sensitive and has no problems that we know of. I keep telling her that she does not need to take any but since she is new to this whole diet thing she feels very uncomfortable giving up on her relgious practices but I am working on it.

Thanks for your concern

Here's an option you might consider:

go to website www.benedictinesisters.org and look under "altar breads" and low gluten. They make a low gluten host which is less than .01% gluten, and considering what it weighs, the most it would contain is 37 MICROgrams of gluten - .00037 grams. To put this in perspective, a small breadcrumb has something on the order of .10 grams (10,000 micrograms) of gluten. Use of this host is sanctioned by the Catholic church.

My son goes to a Catholic school and this is what he receives. I order and provide it to the parish office. We belong to a parish that has no school, but my son and a few adults receive this host at Sunday mass - in this case our parish provides the hosts.


Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

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We're Catholic and the priest has a separate chalice for wine - in the Catholic Communion rite, they break a piece of the large host into the wine. That bit of wafer was enough to give our daughter symptoms.

Oh, dang, didn't even think of that! My mom researched and found that wine was good enough to take (w/o the host)...but I didn't even think of that part, when he breaks the piece into the wine.

And jayhawkmom (I think I got the SN right)...good luck in CCD teaching the kids about communion even though you can't take it. That will be awkward. :unsure: I know when I first heard I couldn't take it (...if I really do have gluten-intolerance, lol)...I almost felt like a vampire or something. You know, the host making me all sick. Not really funny but...ya gotta have a sense of humor... at least there are alternatives, like being blessed and having wine seperated and whatnot.


Gluten-free since January, 2007

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And jayhawkmom (I think I got the SN right)...good luck in CCD teaching the kids about communion even though you can't take it. That will be awkward.

Yep, it is a little awkward. In fact, I'm taking my class to mass on Sunday - and I've had to ask my DRE how to handle the issue. We have it all figured out... we think. =)

Thanks for the well wishes. It's an odd situation, but I'm doing my best to make the best of it! =)


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Hi

I am wondering what you do for protestant communion (I would still like to partake). I am also allergic to eggs, dairy products and sugar.

Are some denominations more understanding than others? I come from a Lutheran background, but am unsure how to handle this...

This was the original post on this thread. Please keep this in mind when answering, and lets stay on topic.

Scott has repeatedly stated that this is not the fourm to discuss religion in depth. Gentlemen, if you want to continue your discussion, it would be best to do it via PM.

Thanks.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Hi-

In regards to the original post. I am also Lutheran (ELCA) and my church has wheat-free (they are also corn-free & dairy-free) wafers available at each service.

I was really stressed regarding what to do about this, also, and even avoided going to church a bit. Then I finally decided to go again, and I was just planning to skip communion. Low & behold, the bulletin announced they were now offering wheat-free wafers. I was so touched by that.

I am sure your pastor will be willing to help make arrangements for you. My mother has a friend at her church (Presbyterian) and she brings her own bread each week. I would sit down with your pastor & discuss your issue, and see what he/she thinks the best course of action would be.


Allyson Bright Meyer

Author, Scrapbook Artist, Mixed-Media Crafter

Gluten-free since January 12, 2007

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Hi-

In regards to the original post. I am also Lutheran (ELCA) and my church has wheat-free (they are also corn-free & dairy-free) wafers available at each service.

I was really stressed regarding what to do about this, also, and even avoided going to church a bit. Then I finally decided to go again, and I was just planning to skip communion. Low & behold, the bulletin announced they were now offering wheat-free wafers. I was so touched by that.

Sorry it took me so long to reply back, I've been having technical difficulties. Thanks for all your support! Actually, I was playing phone tag with my pastor for a few weeks, but never actually said anything about gluten yet. Then I came to church and he announced they had gluten-free wafers now. I cried. It was like a mini-miracle. God knew exactly what I needed :D


Started gluten-free Diet June 22, 2005

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