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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.