Hey You Celiacs!

[Brenda_V]

Okay everyone, I started a GF recipe thread here forums.catholic-questions.org/showthread.php?p=1733509#post1733509

maryjk - that is a lot of flour can the recipe be cut in half to try it out first? Post the recipe itself to the above thread and we can all see if we can help you adjust it. Oh, and if you do make gf/wheatless pizzelles may I suggest that the first batch go to the family - or those who can tolerate wheat/gluten? This will give your iron a chance to be totally wheat free so no cross contamination (I know you probably clean it really well after every use but I get paranoid that way about food allergies/sensitivities etc.)

Brenda V.

p.s. I look forward to seeing others recipes!

 

[StephanieC]

Just wanted to be sure y’all knew about this quarterly magazine:

www.livingwithout.com

I think it’s pretty nice!

 

[aetratus]

I have Celiac disease too. I am thirty-two and was diagnosed two years ago - and had the diagnosis reconfirmed a few weeks’ ago by another doctor (I have a six-year-old daughter and wanted some official paperwork to show her mother, to make sure she keeps an eye out for symptoms). I have ataxia, peripheral neuropathy, “atopic” dermatitis, leaky gut and the usual smattering of weirder-than-fiction problems. As near as the doctors can tell, my celiacs went “active” at about age seven. At one time or another, I’ve had an impacted colon that required medical intervention, a grossly inflamed esophageal sphincter that was swollen open, the gamut of gut problems, broken bones from simply falling down, muscle spasms, visual field problems, and at least two full-fledged psychotic breaks. Needless to say, now that I know, I stay the heck away from “gluten” - gliadin and prolamines - I don’t eat out, ever, and I don’t put anything in my mouth without first making sure that it is safe.

There is one other person at my home parish who has “gluten intolerance” (she was never formally diagnosed Celiac but has enough of the classic symptoms) - it was she who brought it to the attention of our priests, who in turn order the low-gluten altar breads from the Benedictine Sisters in Clyde, MO.

As for all the cooking/recipes stuff - I use Bob’s Red Mill gluten-free flours (tapioca, potato, rice, etc) and shop a small local store, Lassen’s, which carries a goodly number of GF items - they have a dedicated aisle and part of the freezer section. Because my small intestine is not just scarred but has porosity problems, I don’t generally eat beef or chicken or any of the other animal meats that contain large amounts of the more toxic proteins that too easily pass straight into my bloodstream. I eat a lot of sardines, tuna, and the like. I also found, after the first few months gluten-free, I can actually digest a bit of regular milk!

OK, enough about me. Nice to know I’m not the only Catholic w/ Celiac Disease here.

 

[maryjk]

I Needless to say, now that I know, I stay the heck away from “gluten” - gliadin and prolamines - **I don’t eat out, ever, and I don’t put anything in my mouth without first making sure that it is safe.
**
There is one other person at my home parish who has “gluten intolerance” (she was never formally diagnosed Celiac but has enough of the classic symptoms) - it was she who brought it to the attention of our priests, who in turn order the low-gluten altar breads from the Benedictine Sisters in Clyde, MO.

OK, enough about me. Nice to know I’m not the only Catholic w/ Celiac Disease here.

I am surprised that you receive the wheat starch hosts. With the other problems that you have, adding the 10 ppm seems unnecessary. Have you considered receiving from the Cup only?

There are many others with Celiac in my parish. But I seem to be the only one that doesn’t receive the host. It sounded like I was the first to talk about it with our Priest. And I know that we do not have the low gluten hosts since the Priest and I talked about it and after talking to my doctor, we decided that I would receive from the Cup.

 

[maryjk]

Are any of you attending the GIG Education Conference in Richmond?

It is in June.

gluten.net/events.htm#conference

I will be there.

 

[mchale]

I am surprised that you receive the wheat starch hosts. With the other problems that you have, adding the 10 ppm seems unnecessary. Have you considered receiving from the Cup only?

There are many others with Celiac in my parish. But I seem to be the only one that doesn’t receive the host. It sounded like I was the first to talk about it with our Priest. And I know that we do not have the low gluten hosts since the Priest and I talked about it and after talking to my doctor, we decided that I would receive from the Cup.

Just a thought. My Mom is Celiac (so far, it appears not to have been passed to me or my brothers). She was diagnosed in her early 50s and it probably manifested around menopause. In any case, I explained to her about the host, but she refuses to no receive the Eucharist that way. She has also never talked to the priest about receiving a reduced glueten host. In any case for her, abstaining from wheat products in her diet seems to be enough to allievate the sympthoms.

Now to bring this back to the reason for my response. I do believe that while it is allowed when medically necessary to receive from the cup only, the preferred form is to receive either under both forms or via the host. So, if a celiac can tolerate the host in either normal or reduced glueten form, that is probably considered preferable.

–
Bill

 

[maryjk]

Now to bring this back to the reason for my response. I do believe that while it is allowed when medically necessary to receive from the cup only, the preferred form is to receive either under both forms or via the host. So, if a celiac can tolerate the host in either normal or reduced glueten form, that is probably considered preferable.​

Bill

nlm.nih.gov/medlineplus/ency/article/000233.htm

You must follow a life-long gluten-free diet. This allows the intestinal villi to heal. Foods, beverages, and medications that contain wheat, barley, rye, and possibly oats should be eliminated completely. You must read food and medication labels carefully to look for hidden sources of these grains and their derivatives. Since wheat and barley grains are found abundantly in the American diet, keeping to this diet is challenging. With education and planning, you will achieve the goal of healing.

digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm

In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person’s age at diagnosis, some problems will not improve, such as delayed growth and tooth discoloration.

As you can see here, she may not have symptoms, but each time she receives the host, she is causing damage to her small intestine. This damage can cause other problems that might not seem to be related to Celiac, including the big “C”, cancer. I would encourage her to speak to her doctor about what she is doing.

It is not preferable for a Celiac to receive the host. Once a Priest finds out about a person having Celiac, they should explain that receiving from the chalice is preferable.

nccbuscc.org/liturgy/celiasprue.shtml

Such communicants may still receive the Precious Blood. Catholics believe that whoever receives Holy Communion only under the form of bread or only under the form of wine still receives the whole Christ, in his Body and Blood, soul and divinity.

 

[aetratus]

I am surprised that you receive the wheat starch hosts. With the other problems that you have, adding the 10 ppm seems unnecessary. Have you considered receiving from the Cup only?

Yes, I’m beginning to seriously reconsider the use of the low-gluten host breads. Over the past few weeks I have been getting more of the weakness, achiness, leg pain and digestive problems. I thought initially I must have been glutened by something - it wasn’t until I read your post that I had a duh-obvious moment and realized it could be the low-gluten hosts.

 

[Craig]

I’ve just been diagnosed as being gluten (and casein) intolerant and have begun using the low gluten hosts from the Benedictine Sisters. It’s a challenge because gluten and casein is in just about everything.

 

[maryjk]

I just returned from the GIG Educational Conference. (Well, I left there last Sunday, then spent a week at my parents. But I just returned from there.)

I learned a lot. Just some quick bits of information.
*
81% of Celiacs gain weight during the first year of being GF.

In restaurants, say no cross contact instead of cross contamination, chefs see cross contamination as bacterial and might say there is none, when we see that there is.

New FDA rules most likely will be calling for Gluten Free labels for foods 20ppm or less, this is the lowest possible. Zero does not exist in biology, we can only test as low as 20ppm.

They are working on a pill that we could take before eating, if it passes through testing, it will be out in 5-8 years.

20% of people think they have a food allergy. only 1.4% really do. this does not include Celiacs, since it is not an allergy.

All Celiacs should take a multi vitamin. *

I have pages of notes and hand outs. I will be typing them into my computer over the next month. If you want my notes, PM me with your email address and I will send them to you.