Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Not Tolerating "low Gluten" Host


llama3

Recommended Posts

llama3 Apprentice

I am Catholic and have been receiving the approved low-gluten hosts and I'm pretty sure that I'm reacting to them. I'm pretty sure that it's not just CC, because I tried an unconsecrated one that had not been handled by anyone and I was in pain for hours after that. It could have been something else, I guess, although it was the same pains that I get when I eat gluten. I know scientists say they are supposed to be below levels that would cause a reaction, so I feel as if I'm being a hypochondriac.

Has anyone actually tried the low-gluten host and reacted?

(Please let's NOT make this a thread about Catholic teaching on Communion. Thank you.)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

I don't do them because to me "low gluen" isn't NO GLUTEN. See about making arrangements to take the wine. It technically counts the same. Maybe they would let you drink first. I heard of someone that bought thier own chalice & they would hand them the chalice with the wine.

llama3 Apprentice

I don't do them because to me "low gluen" isn't NO GLUTEN. See about making arrangements to take the wine.

I'm trying ... have met with resistance to the idea. I think they think I'm being needlessly difficult. As in, these hosts are supposed to be OK, they are OK for our other parishioner who is gluten intolerant, so why are they not OK for you?

I don't understand why scientists would say they are safe and below reactive levels if that is not true. Am I just ridiculously sensitive?

kareng Grand Master

I'm trying ... have met with resistance to the idea. I think they think I'm being needlessly difficult. As in, these hosts are supposed to be OK, they are OK for our other parishioner who is gluten intolerant, so why are they not OK for you?

I don't understand why scientists would say they are safe and below reactive levels if that is not true. Am I just ridiculously sensitive?

I have thought about taking a tiny bit of the "gluten Lite" host, not the whole thing.

Jestgar Rising Star

I'm trying ... have met with resistance to the idea. I think they think I'm being needlessly difficult. As in, these hosts are supposed to be OK, they are OK for our other parishioner who is gluten intolerant, so why are they not OK for you?

I don't understand why scientists would say they are safe and below reactive levels if that is not true. Am I just ridiculously sensitive?

Safe more most doesn't mean safe for everyone. You will have to figure out something else. Perhaps just the wine, as Karen suggested.

Skylark Collaborator

I don't understand why scientists would say they are safe and below reactive levels if that is not true. Am I just ridiculously sensitive?

That Fasano study where he concluded that 10 mg/day is "safe" is about the worst thing that has ever happened to the celiac community. In that study, people who hadn't healed by biopsy were excluded. In other words, they didn't enroll the people who might be more sensitive. In fairness, they couldn't enroll people with abnormal biopsies because the study had mild damage on biopsy as the endpoint, but the paper conclusions were written as though 10 mg/day is perfectly safe for all celiacs.

Wheat starch is particularly troublesome. In one study celiacs who weren't eating gluten-free wheat starch for various reasons were given bread made from wheat starch with <15 ppm gluten. By the end of 10 months, 15 of 17 people had elected to quit the study because they were sick. The controls in the study were a group of 14 celiacs who tolerate wheat starch and they remained perfectly fine. Nobody who was sick had antibodies come back; they just felt ill. The study authors blamed trace gluten but you can't rule out that some folks just don't tolerate anything from wheat grains.

You need to trust your body, even though it's a hard situation. Don't write off your reactions as being a hypochondriac and stick to your guns. The Catholic church needs to understand that low-gluten is not a solution for everyone with celiac disease. You need to sort out a way to handle the reaction, maybe a tiny sliver of the low-gluten wafer, maybe wine only?

llama3 Apprentice

That Fasano study where he concluded that 10 mg/day is "safe" is about the worst thing that has ever happened to the celiac community. In that study, people who hadn't healed by biopsy were excluded. In other words, they didn't enroll the people who might be more sensitive. In fairness, they couldn't enroll people with abnormal biopsies because the study had mild damage on biopsy as the endpoint, but the paper conclusions were written as though 10 mg/day is perfectly safe for all celiacs.

Wheat starch is particularly troublesome. In one study celiacs who weren't eating gluten-free wheat starch for various reasons were given bread made from wheat starch with <15 ppm gluten. By the end of 10 months, 15 of 17 people had elected to quit the study because they were sick. The controls in the study were a group of 14 celiacs who tolerate wheat starch and they remained perfectly fine. Nobody who was sick had antibodies come back; they just felt ill. The study authors blamed trace gluten but you can't rule out that some folks just don't tolerate anything from wheat grains.

You need to trust your body, even though it's a hard situation. Don't write off your reactions as being a hypochondriac and stick to your guns. The Catholic church needs to understand that low-gluten is not a solution for everyone with celiac disease. You need to sort out a way to handle the reaction, maybe a tiny sliver of the low-gluten wafer, maybe wine only?

Thank you - this is really helpful.

In fairness to the Church, I read a statement, either from the Vatican or US bishops, outlining different options for Communion, which gave the options you mentioned and did not treat low gluten hosts as a solution for everyone. However, not all Catholics in charge of arrangements for communion read those documents ... even the woman at my church who is responsible for ordering the low gluten hosts was not aware that the hosts were made of wheat starch and still had a low level of gluten, until I explained that to her.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

"Scientists" are not all claiming that these things (the low gluten hosts) are "safe." Somebody somewhere has made a decision that assumes this level of parts per million of gluten should not cause a reaction in the majority of gluten-free consumers. Big difference. The ultra -sensitives, as Skylark has pointed out, were tossed out of the study.

Roda Rising Star

This subject came up with a friend of mine. My husband was brought up catholic and I thought it would be a good thing to introduce my boys to some catholic services. I am not catholic and my boys have never been. My friend said that there are low gluten hosts and if the boys were ever to take communion that there wasn't enough gluten in them to hurt them. I guess I'm just a rebel because I told her they would not be safe at all for them. I guess this decision is easy for me since my boys and I were not brought up catholic. I can completely sympathize with everyone's struggle with a solution that feels right to them. I hope you figure something out that works for you.

Metoo Enthusiast

I don't think I am very sensitive. The low gluten host has not bothered me, but I just started taking communion again because I was afraid.

I did have a 'regular' host on Ash Wednesday and I was super nervous about that. I went to a different church and they don't offer them.

I am still having slight skin problems anyways though nothing bad like before, just dryness cracking, but I haven't seen any new blisters though.

  • 2 weeks later...
Victoria6102 Contributor

Jesus wouldn't make you eat something if it destroyed your body! I don't eat the cracker when we have the Lords supper, and everyone knows its because I have celiac not because I'm rebelling against the Lord! Do what's safe for you. God gave you celiac, He isn't going to punish you for not eating the wafer! :) good luck hope you feel better!

Strawberry-Jam Enthusiast

I recently decided not to take communion anymore because the bishop told my priest he couldn't concecrate the chalice without putting a little bit of the host in it because of "tradition". I'm Eastern Orthodox and we don't usually consecrate multiple chalices. Celiac disease is largely unheard of in the E.O. community at large so they don't know how to deal with it, I think. Altho, the Orthodox in Ireland and England really need to get their act together.

Maybe a different bishop would hear me out and allow a separate, gluten-free, chalice to be consecrated for my sake. I don't know. My priest disagrees but must be obedient to the bishop. I'm kind of miffed, but not surprised. If the bishop believes that communion MUST be that way, then it must mean I'm not to take communion at this juncture.

Just pray about it. Communion is a beautiful miracle but at the same time, unless you live your faith by loving others, what's the point?

I don't know. Don't want to hijack your thread so.

  • 1 year later...
jrohr Newbie

I am Catholic and have been receiving the approved low-gluten hosts and I'm pretty sure that I'm reacting to them. I'm pretty sure that it's not just CC, because I tried an unconsecrated one that had not been handled by anyone and I was in pain for hours after that. It could have been something else, I guess, although it was the same pains that I get when I eat gluten. I know scientists say they are supposed to be below levels that would cause a reaction, so I feel as if I'm being a hypochondriac.

Has anyone actually tried the low-gluten host and reacted?

(Please let's NOT make this a thread about Catholic teaching on Communion. Thank you.)

Hi. I'm Catholic too. I know this thread is a bit old now but I wanted to reply anyway. I have been afraid the low gluten host will make me sick and haven't tried it. In retrospect this may sound dumb, but when I went gluten free I though I'd just take wine, no problem. Wow, did I get sick. It actually took a bit for it to occur to me that there was cross contamination with the wine! So now I just sit while my kids and everyone else participates. I feel awkward and kind of lost. I also have to say I kind of wonder that people that don't know me wonder why that one person is not participating as everyone else.  My faith, church, communion have been an important part of my life and I feel it's just been pulled away. I spoke with the priest. We have one other in the parish that uses the low gluten hosts without problem. But I just can't. It's wheat! I wonder what people with wheat allergies do?

 

I know God doesn't mind, but now church just feels incomplete. Another thought that I have regarding the low gluten host is that if I did try it and I didn't feel sick, the gluten may still be doing damage and I wouldn't even know.  Or maybe I'd start to get a little worse over time, just gradual enough that I would not recognize the change. Though, when I get CC to this point, I sure notice! 

 

Anyway, I don't take communion wine or host anymore. But I still go to church.

mbrookes Community Regular

I am Episcopalian, but have the same problems a Catholics. Actually, my church orders a gluten free host for me. I can't take the wine, but receive a blessing when the wine is passed. No problem. Maybe you could talk (non-confrontationally) about having a gluten free host ordered, or offer to provide it yourself. As long as it is consecrated, it can be any bread.

Bear with me Rookie

The Episcopal (Anglican) Church will accept a gluten-free host as valid. The Roman Catholic Church does not, requiring there to be wheat present.

notme Experienced

i go to a methodist church and i just bring a little bread in a snack baggie - i take it out when i go up, pastor blesses it, an i drink the 'wine' (grape juice) because it is presented in tiny individual glasses.  lolz - i have thought of bringing my own wine, but then everybody would want some......... (just kidding)..........  ;)

Celtic Queen Explorer

I'm in a Methodist church and talked to my pastor about all of this.  I had bought gluten free host and he was trying to serve it while holding it next to the bread <shudder>  I explained cross contamination and put myself in charge of the gluten free host.  We have a separate little plate that is used for nothing but that.  And we do the juice in the individual cups.  Since I'm the most sensitive of all the ones in the congregation (2 Celiacs and 2 NCGIs), it makes the most sense.  It gives me peace of mind about communion because if I get glutened, I only have myself to blame :D

 

Of course this doesn't help if you're Catholic, since they require wheat in the host.  Personally, I agree with the person earlier who said they didn't think Jesus would want us making ourselves sick to take Communion.

notme Experienced

cq - i don't let him touch it!   :o   i just palm it until he offers me the 'regular' plate, then i open my hand and he says 'the body of Christ' - that's official enough for me and he is ok with it.  the whole congregation knows i do this and nobody has fussed at all. and, right, i'm of the opinion that Jesus (the healer) wouldn't want someone to get sick from a sacrament. 

irish daveyboy Community Regular

I am Catholic and have been receiving the approved low-gluten hosts and I'm pretty sure that I'm reacting to them. I'm pretty sure that it's not just CC, because I tried an unconsecrated one that had not been handled by anyone and I was in pain for hours after that. It could have been something else, I guess, although it was the same pains that I get when I eat gluten. I know scientists say they are supposed to be below levels that would cause a reaction, so I feel as if I'm being a hypochondriac.

Has anyone actually tried the low-gluten host and reacted?

(Please let's NOT make this a thread about Catholic teaching on Communion. Thank you.)

 

The problem with the Approved low gluten Catholic host is it contains Codex Wheat Starch < 20PPM.

People that react to it may have an additional Wheat allergy.

 

I'm a Celiac with such a wheat allergy and a recovering alcoholic, so partaking of the wine is a no no for me.

The priest just gives me a blessing at communion.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,953
    • Most Online (within 30 mins)
      7,748

    BabsCan
    Newest Member
    BabsCan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.