Celiac disease

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drepouille
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Re: Celiac disease

Postby drepouille » Mon Oct 30, 2017 5:10 am

marivenezohner wrote:In a worst case scenario, remember that when providing the sacrament in rest homes, touching the bread to the lips is acceptable for those who cannot swallow.

Good point! We have a brother in our ward who cannot swallow solids or liquids, and must always carry a spit bottle. I believe he chews the bread and then spits into his bottle.
Dana Repouille, Plattsmouth, Nebraska

ferrinl
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Re: Celiac disease

Postby ferrinl » Wed Feb 19, 2020 5:46 pm

"For those with Celiac or high sensitivity to gluten, they will package the Chex at home into a very small ziplock bag (like a jewelers bag) with as much care as needed. A member of that family brings the individual bag to church, hands it to the priests, and and tells them where they are sitting so the bagged Chex get into the right tray. When it is passed, someone in the family opens the bag carefully and dumps the Chex into the hand of the person with Celiac. That way, the individual/family has confidence that they won't have to deal with cross-contamination."

I agree that that is the best way to handle it for those who suffer from celiac. It avoids cross contamination. However, if someone comes on their own and has no one reliable sitting next to them to touch/open the cross-contaminated bag for them to drop/pour the cereal piece into their hand, then I guess that person is out of luck. Seems like Mr. Andrus understands the problem with cross-contamination, though, for true celiacs and understands the distinction between those with low sensitivity and those who really need to avoid eating or touching any wheat at all costs. Celiac disease is mostly a women's disease, and I think this is why the problems of administering the sacrament to true celiacs have not been solved, and never will be, in this church. People don't care.

I have not experienced any leaders in the wards I have attended who seem to grasp or understand the issue, or even want to, even after I explain it to them in person, by phone, and by email. I have become very ill several times, and the illness from ingesting a piece of regular bread lasts for months since it damages the lining of my intestine, by trusting their open-air "gluten-free" trays which were not really gluten free after all, I found out by asking a person who was supposed to be "trained," and by trying their other methods of handling it. All of this has been at my body's expense and not at the expense of the errant men who were in charge.

It is an issue of health and safety and therefore of the utmost importance. If some people with low-level celiac or who are just experimenting with a gluten-less diet don't want to be careful, that is their prerogative, but that view and attitude of cross-contamination not mattering very much is not something that should be thrust on us who do need to be careful to avoid all cross-contamination. The majority--those who are not very diligently careful celiacs or those who are simply experimenting with a different diet--should not affect negatively the rights and needs of those with high-level off-the-charts celiac who need to avoid wheat and wheat residues at all costs. The results for celiac women who have it severely and who do not avoid gluten are not only a few days of illness, but higher risks of certain types of cancers, and damaged small intestines such that for months after an incident of cross-contamination one cannot digest any of their food and has leaky gut, making gradually all food you eat go directly into the bloodstream and become an allergen. I have been gradually becoming allergic to most foods, and so choose to follow the appropriate protocols to avoid all cross-contaminated cookware and surfaces.

The only good solution for single women in your church with celiac that I can see is to bring your own item to replace the bread and keep it with you so that no cross-contamination occurs. Putting anything of mine on a ward sacrament tray creates a high risk of cross-contamination if that thing has to then come back to me. I have tried that and tried all methods. These trays are obviously full of gluten. They typically don't wash them between meetings, and even if they did, all of the other celiacs I know never use cookware or dinner ware that has ever had gluten on it. The very act of putting my gluten-free bag or container on a tray that is full of gluten is obviously problematic. And since no one seemed to be trained or know much about celiac disease, there is no reason I should ever be asked to risk my health again because of their lack of knowledge. People arrogantly telling me that I need to eat from a tray that has gluten in it (in its crevices) and on it is not something I am willing to put up with again.

rmrichesjr
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Re: Celiac disease

Postby rmrichesjr » Wed Feb 19, 2020 9:04 pm

ferrinl wrote:...
I have not experienced any leaders in the wards I have attended who seem to grasp or understand the issue, or even want to, even after I explain it to them in person, by phone, and by email. ...


In case it might be of some use, there are some wards where the ward leaders are very aware and go to considerable lengths to safeguard the health of those in their wards. The ward in which I live has several people with celiac disease, at times including some who have been in the bishopric.

ferrinl
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Re: Celiac disease

Postby ferrinl » Mon Apr 20, 2020 6:39 pm

Yep, if ward boundaries were a matter of individual choice then I could choose to be in a ward where members are sympathetic to the cause/plight of persons who cannot eat wheat, right?

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Re: Celiac disease

Postby russellhltn » Mon Apr 20, 2020 6:51 pm

ferrinl wrote:if ward boundaries were a matter of individual choice

But they're not.
Have you searched the Help Center? Try doing a Google search and adding "site:churchofjesuschrist.org/help" to the search criteria.

So we can better help you, please edit your Profile to include your general location.

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sbradshaw
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Re: Celiac disease

Postby sbradshaw » Fri Apr 24, 2020 12:47 pm

ferrinl wrote:Yep, if ward boundaries were a matter of individual choice then I could choose to be in a ward where members are sympathetic to the cause/plight of persons who cannot eat wheat, right?

I think in most cases, it's that those involved in the sacrament may not fully understand what the issues are, and how to deal with them. I would recommend setting up a meeting with the bishop, sharing resources produced by the Church (General Handbook 18.9.3 would be a good place to start), and following up making sure that issues are communicated from him to the Aaronic Priesthood quorums.
Samuel Bradshaw • If you desire to serve God, you are called to the work.

ferrinl
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Re: Celiac disease

Postby ferrinl » Fri May 22, 2020 11:56 am

I met with the bishop in my last ward about it, and he told me that it came down from above the stake that they have to have it in an open container and break it with their hands.

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sbradshaw
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Re: Celiac disease

Postby sbradshaw » Fri May 22, 2020 12:10 pm

ferrinl wrote:I met with the bishop in my last ward about it, and he told me that it came down from above the stake that they have to have it in an open container and break it with their hands.

That doesn't line up with General Handbook, 18.9.3, which is the official Church policy from Church headquarters – so the person communicating the policy to the bishop either had outdated information, or incorrect information, or both. Or maybe, if it was several years ago, information about gluten intolerance may not have been as widely available, so there may not have been a clear policy. In any case, if it happens in your current ward, I would kindly nudge them towards the General Handbook, 18.9.3:
If members have gluten intolerance, they discuss with a member of the bishopric what adaptations to make for the sacrament. Members may provide allergen-free bread or another broken bread-like substitute in a sealed plastic bag or cup. They give this to a priesthood holder to place on a separate tray. The bishopric helps those who pass the sacrament know which members to whom the allergen-free item should be passed. The bishopric may modify the procedure as necessary.

You could also point them to the section on Food Allergies on the Church website (disability resources section), which goes into more detail:
How can those with food allergies safely partake of the sacrament?

  • Leaders and teachers should be sensitive to the physical and emotional impact food allergies have on an individual and should develop ways to safely include people in all activities and worship—including partaking of the sacrament. The guidelines below may help:
  • Members with food allergies, such as gluten intolerance or other conditions, should inform a member of the bishopric and discuss with him what adaptations may be appropriate for the sacrament.
  • Members may provide their own allergen-free bread or other broken bread-like substitute. Members may bring a prebroken bread substitute in a sealed plastic bag and give it to a priesthood holder to place on a separate tray.
  • During the sacrament, the priesthood holders break the regular bread but do not open the bags or touch the allergen-free bread substitute. The prayer to bless the bread is offered in the normal way.
  • The bishopric sees that the priesthood holders can identify members to whom the allergen-free item should be passed. Those who prepare, administer, and pass the sacrament should receive training on how to avoid cross contamination.
  • Depending on the number of individuals involved or specific circumstances, the bishopric may modify the procedure.
Samuel Bradshaw • If you desire to serve God, you are called to the work.

jakerose
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Re: Celiac disease

Postby jakerose » Sat May 23, 2020 12:06 pm

All wards in our building went all gluten free for sacrament. So much easier.

drepouille
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Re: Celiac disease

Postby drepouille » Sat May 23, 2020 7:43 pm

jakerose wrote:All wards in our building went all gluten free for sacrament. So much easier.


We tried that, but then another family was allergic to another ingredient, probably dairy, so we tried using some strange hypoallergenic bread for a while, which tasted like white rice foam.
Dana Repouille, Plattsmouth, Nebraska


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