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

Any Self-Diagnosed Catholics?

llama3

By llama3
in Coping with Celiac Disease

Recommended Posts

llama3 Apprentice
llama3
Posted

Hello all,

I'm new but have been lurking. Quick back-story: I have been trying to figure out what's wrong with me for nearly a decade, since my teens. I have daily digestive issues, bloating, etc, with periodic bouts of unexplained stomach cramps and vomiting. (On one occasion these landed me in the ER - they kept me there for hours, ran tests and told me I was fine.) Constant fatigue for years, hypoglycemia (self-diagnosed, but it's really obvious), bouts of extreme starvation-style hunger that will not go away for days no matter how much I eat, depression, the list goes on ...

I'm tired of being misdiagnosed, humiliated, laughed at, and dismissed as a hypochondriac by my doctors (and then, being charged a lot of money for the misery). So I have just started a gluten free diet, without an official diagnosis. It's too early to see if there's a difference.

The biggest issue for me right now is that I'm Catholic (a daily communicant) and sooner or later will have to deal with what to do about Communion. I don't want to start a debate about it. I just want to know ... should I stop receiving Communion for a while and see how that affects me? Should I keep receiving and see if it becomes a problem as I eliminate the other gluten from my diet? Also, will it be a problem if I don't have an official diagnosis ... i.e. will priests be unable or unwilling to accommodate me with an alternative form of Communion?

Please help!

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Call or email the priest. He will tell you they have a low gluten host or you can just take the wine. He may even be able to give you the wine first or from a special cup. Some will do that. You don't have to say self diagnosed. Just say you can't have gluten if that is true.

DonnaMM Explorer
DonnaMM
Posted

You can buy gluten free communion crackers online ask the priest to give you those instead. People deal with it all the time celiac is very popular in Italy and I am sure you know they have a bunch of catholics

Metoo Enthusiast
Metoo
Posted

You can buy gluten free communion crackers online ask the priest to give you those instead. People deal with it all the time celiac is very popular in Italy and I am sure you know they have a bunch of catholics

My church now gives out a 0.0001 percent gluten host, for people who need to be gluten free, its only given at one mass and only in one line, but they are doing so because so many people in the parish have been diagnosed with celiac/gluten allergy.

I would ask, they may have several people asking and may need to do something if they haven't already.

llama3 Apprentice
llama3
Posted
  • Author

You don't have to say self diagnosed. Just say you can't have gluten if that is true.

Yeah, I was worried he might ask to see a doctor's note or something. I guess that's kind of far-fetched. Especially since my pastor had no problem dispensing me from the Ash Wednesday/Good Friday fast when I told him I was hypoglycemic.

I don't want to say anything about it though until I'm sure that that is what is going on, so in the meantime what should I do? :(

Denise121 Newbie
Denise121
Posted

Yeah, I was worried he might ask to see a doctor's note or something. I guess that's kind of far-fetched. Especially since my pastor had no problem dispensing me from the Ash Wednesday/Good Friday fast when I told him I was hypoglycemic.

I don't want to say anything about it though until I'm sure that that is what is going on, so in the meantime what should I do? :(

It still counts as fully receiving Communion if you take the Precious Blood alone. Usually, this is what I do because while my parish has the Vatican-approved gluten-free wafers, I have to arrange it before mass and I usually forget to.

It's not so far-fetched about the doctor's note, really :) I looked it up when I was trying to figure out what to do, and I believe that they actually used to require one as proof before allowing a substitute wafer.

llama3 Apprentice
llama3
Posted
  • Author

It still counts as fully receiving Communion if you take the Precious Blood alone. Usually, this is what I do because while my parish has the Vatican-approved gluten-free wafers, I have to arrange it before mass and I usually forget to.

None of the parishes where I live offer the chalice to the laity, so I will have to arrange it specially.

It's not so far-fetched about the doctor's note, really :) I looked it up when I was trying to figure out what to do, and I believe that they actually used to require one as proof before allowing a substitute wafer.

But they don't require it now? What about people who test negative for celiac but still discover that they have a bad reaction to gluten? (This is the case with my sister.)

It's so frustrating ... the medical establishment causes as much suffering as it alleviates (based on my experience; there are good doctors, but they are few), and yet no one will believe what you know about your own body without a doctor's official stamp of approval. In the past I have self-diagnosed myself with other things and asked for certain tests, had my doctor snicker a bit and order the test, only to find that I was right! But of course no one ever apologizes for misdiagnosing you or for laughing at your correct self-diagnosis ...

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

None of the parishes where I live offer the chalice to the laity, so I will have to arrange it specially.

But they don't require it now? What about people who test negative for celiac but still discover that they have a bad reaction to gluten? (This is the case with my sister.)

It's so frustrating ... the medical establishment causes as much suffering as it alleviates (based on my experience; there are good doctors, but they are few), and yet no one will believe what you know about your own body without a doctor's official stamp of approval. In the past I have self-diagnosed myself with other things and asked for certain tests, had my doctor snicker a bit and order the test, only to find that I was right! But of course no one ever apologizes for misdiagnosing you or for laughing at your correct self-diagnosis ...

I emailed my priest. He didn't need a doctor note. The Catholic church only allows the very low gluten host. Some other religions might allow completely rice ones.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

Are there any other coeliacs in the nearby parishes you speak of? How do they handle it?

I know that it is a special grace to receive on a daily basis, but if you really want to diagnose coeliac, you can't or that daily dosage of gluten will skew the results.

I'm Eastern Orthodox and weep to say I haven't taken communion in four weeks or more (we only receive weekly) because I can't bear to talk to the priest about it yet. It hurts too much right now. I used to be okay with just a few drops of the precious blood from the spoon, but that spoon is in the chalice with the host (we do intinction only) and it seems like I have grown too sensitive for that.

Do you have a regular confessor? Perhaps you can explain to him exactly how things are? Mention that a vast majority of coeliacs have to self-diagnose with diet because the available tests are unreliable (false negatives) and incomplete (cannot diagnose certain types of gluten intolerance that are, nevertheless, real). Explain to him exactly what your concerns are, in detail. The Catholic Church has approved the low-gluten host, so there should be no problem with using those. If you receive daily you can even break the hosts into smaller pieces to receive less at any given time (altho if you do end up being very sensitive, you may have to settle on half of one once a week or something like that).

irish daveyboy Community Regular
irish daveyboy
Posted

Any Self-Diagnosed Catholics?

I smiled when I saw the topic title, thinking don't tell me Catholicism is now classed as an illness!! :blink:

I know what was meant, it was just the way it read.

I'm a Catholic and Celiac with an additional Wheat allergy so the wheat starch hosts were a no-no.

Plus the fact I was a heavy drinker (Alcoholic) and I am afraid to even sip wine for fear I'd revert to my wicked former ways, so I totally abstain.

Celtic Queen Explorer
Celtic Queen
Posted

I second everyone else about talking to your priest. I'm not Catholic, so I'm not sure about the low gluten vs. no gluten host. But when I talked to my Methodist pastor about using no gluten host, he was very sympathetic and had no problems with it. And he didn't require any proof that I had Celiac. In fact, 3 other people in the church were already using gluten-free host, and I know for a fact that two of them have not had a formal Celiac diagnosis. And keep in mind that this is a church of only about 80 attendees. There already may be people using low gluten host in your church and you may not be aware of it. My pastor is super discreet about handing them out.

llama3 Apprentice
llama3
Posted
  • Author

Any Self-Diagnosed Catholics?

I smiled when I saw the topic title, thinking don't tell me Catholicism is now classed as an illness!! :blink:

LOL! With the way things seem to be headed, you never know ...

I'm sorry you have to abstain completely! I know how painful that would be for me. But I am certain God is blessing you through other means.

llama3 Apprentice
llama3
Posted
  • Author

Are there any other coeliacs in the nearby parishes you speak of? How do they handle it?

I know that it is a special grace to receive on a daily basis, but if you really want to diagnose coeliac, you can't or that daily dosage of gluten will skew the results.

I'm Eastern Orthodox and weep to say I haven't taken communion in four weeks or more (we only receive weekly) because I can't bear to talk to the priest about it yet. It hurts too much right now. I used to be okay with just a few drops of the precious blood from the spoon, but that spoon is in the chalice with the host (we do intinction only) and it seems like I have grown too sensitive for that.

Do you have a regular confessor? Perhaps you can explain to him exactly how things are? Mention that a vast majority of coeliacs have to self-diagnose with diet because the available tests are unreliable (false negatives) and incomplete (cannot diagnose certain types of gluten intolerance that are, nevertheless, real). Explain to him exactly what your concerns are, in detail. The Catholic Church has approved the low-gluten host, so there should be no problem with using those. If you receive daily you can even break the hosts into smaller pieces to receive less at any given time (altho if you do end up being very sensitive, you may have to settle on half of one once a week or something like that).

I have no idea if there are other celiacs. I haven't noticed anything obvious. I'm coming to the conclusion that I will have to abstain for a while to see what is really going on.

I feel your pain. :( Wish I could give you a hug.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

Any Self-Diagnosed Catholics?

I smiled when I saw the topic title, thinking don't tell me Catholicism is now classed as an illness!! :blink:

I know what was meant, it was just the way it read.

I'm a Catholic and Celiac with an additional Wheat allergy so the wheat starch hosts were a no-no.

Plus the fact I was a heavy drinker (Alcoholic) and I am afraid to even sip wine for fear I'd revert to my wicked former ways, so I totally abstain.

To be honest, this kind of thing shakes my faith considerably.

How do you feel about this? You seem to be taking it a lot better than I would.

irish daveyboy Community Regular
irish daveyboy
Posted

To be honest, this kind of thing shakes my faith considerably.

How do you feel about this? You seem to be taking it a lot better than I would.

I don't want to go on about one religion - V - another.

I don't believe that receiving the host/wine at mass makes you a good catholic.

Abiding by the teachings of your church (and he's the important bit) to the best of your ability, makes you a good catholic/christian etc.

There are catholics suffering with throat cancer that can't partake in communion, (they may be fed intravenously) they are not bad catholics.

All god asks is that you do the best you can!

Sorry moderators, didn't mean to turn it into a topic on religion.

Denise121 Newbie
Denise121
Posted

None of the parishes where I live offer the chalice to the laity, so I will have to arrange it specially.

But they don't require it now? What about people who test negative for celiac but still discover that they have a bad reaction to gluten? (This is the case with my sister.)

It's so frustrating ... the medical establishment causes as much suffering as it alleviates (based on my experience; there are good doctors, but they are few), and yet no one will believe what you know about your own body without a doctor's official stamp of approval. In the past I have self-diagnosed myself with other things and asked for certain tests, had my doctor snicker a bit and order the test, only to find that I was right! But of course no one ever apologizes for misdiagnosing you or for laughing at your correct self-diagnosis ...

No, it is my understanding that they do not require it now. The only thing I have read is that the host must contain some minute amount of gluten in order to be considered bread and thus, a valid sacrament. I believe all you need to do is speak with the priest. In some cases, a bishop might need to give permission, but in most instances, the parish priest is able to. My church is much more relaxed in the matter, but I suppose some stricter parishes may be different.

llama3 Apprentice
llama3
Posted
  • Author

I don't want to go on about one religion - V - another.

I don't believe that receiving the host/wine at mass makes you a good catholic.

Abiding by the teachings of your church (and he's the important bit) to the best of your ability, makes you a good catholic/christian etc.

There are catholics suffering with throat cancer that can't partake in communion, (they may be fed intravenously) they are not bad catholics.

All god asks is that you do the best you can!

Sorry moderators, didn't mean to turn it into a topic on religion.

Well, I appreciate your reply, so thank you.

Strawberry-Jam Enthusiast
Strawberry-Jam
Posted

I didn't want to turn it into a topic on religion either, but this is something I am struggling with right now in my life, so I asked. I think you're right, it's just... hard, that's all.

Angelica Rookie
Angelica
Posted

I am Catholic, and after I was diagnosed it was actually very easy to sort out.

My church gets has the low-gluten wafers and its no biggie. I just spoke with the ministry coordinator and the priest. When I get to church I get the wafer from its place in the fridge in the main office, place it in its own plate and hand it off to the ministry coordinator. he makes sure its makes its way up to the altar during the mass. When the Eucharistic ministers go up to get communion ready I go up and stand with them, but just to the side. They bring me the gluten-free wafer and give me the first drink from one of the cups. Done and done. I was told that this is the way that the Vatican officially decreed to take care of communion for people who cannot have gluten (and the Vatican thinks of everything) so even if your priest is unaware of the protocol, protocol exists for this exact issue.

So just talk with your priest-- its no big deal.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.