Hey You Celiacs!


#1

Ok. Just saw my PM about the Celiac thread and sorry I’m late getting here. I saw the message pop up and forgot to go back and read it :o

Anyway. I’m Celiac. Been Gf (gluten-free) for 3 years now I think.

Firstly - Celiac is NOT an allergy at all. It’s a disease. Ingesting even small amounts of gluten destroys the cilia (small hairs) which line the small intestine. This disables the absorption of nutrients from the foods eaten, so people with Celiac have all sorts of malnutrition and vitamin difficiency issues. There are gastro-intestinal symptoms (most common), though a small percentage (like me) have neurological symptoms, and there are even some who don’t exhibit any obvious symptoms at all. Celiac is commonly misdiagnosed as a variety of ailments, from IBS to MS (Drs. thought I had MS despite the lack of lesions on my MRI). There is a strong link between Celiac, MS, Diabetes, and even Autism. I can’t remember the science behind it, but they are somehow all closely related. In fact, those with MS and Autism frequently benefit from going on a gf diet.

I would advise AGAINST drinking from the chalice unless it is a seperate chalice w/out the piece of host. I would also advise sitting in the front pew to receive the cup so you won’t have to share it after women wearing lipstick may have received (most makeup has wheat in it).

I get very low-gluten hosts from the Benedictine sisters in Missouri. They are safe for Celiacs - made from wheat starch. I know that sounds bad, but the ppm (parts per million) of gluten is deemed safe for the Celiac community. I’ve not had a problem with receiving them. You can get them here: benedictinesisters.org/altarbread/orderform.html

They are the only hosts safe for Celiacs and approved for use in the mass.

Celiacs cannot have any wheat, barley, rye or oats or anything derived from them. The longer you go gf, the more sensative you become to those glutens. Gluten is a protein in all grains (corn, rice, quinoa, etc.) but Celiacs are only intolerant of the proteins found in wheat, barley, rye and oats. Once dx-ed, you must stay on the diet. I’m not trying to scare anyone, but after time of consuming those glutens, even in small quantities, you increase your chances of developing cancer. Never think you can get away with sneaking a little here and there.

We are lucky to live in the times we do. Had this happened to me 10 years ago, I may not be here to tell about it. But we are so lucky that we don’t need medicines or operations to get through this - just a change of diet!

For support, there is a message board here: www.celiac.com
You can look up just about anything there and get info. That site also has a “safe and forbidden” ingredients list.

You can order a binder with mainstream gluten-free foods listings to take with you to the grocery store here: www.csaceliacs.org

If anyone needs more info, just give me a PM. I’d be glad to help! :smiley:

Godspeed!
~donna


#2

Donna,

Thank you for this post. I didn’t want to go into an explanation of the disease (disorder) because I am do not have Celiac but am very intolerant of wheat and I know the difference. I follow the same kind of diet because if a food says GF on it I know it is safe.

I think that we also can add now that the labeling of food now is more detailed. All foods with a known allergen or disease causing ingredient must put it clearly on the packaging. For instance I am starting to see foods that are labeled :Allergy alert, may contain peanuts, soy and milk or contains wheat.

It will never stop surprising me the number of people who ask why I can’t have a hot dog or hamburger bun, they are made only made with flour! Well, duh, white flour is just highly processed wheat flour.

Got to go and get ready for my day.

Again, thank you for your information. (A side note though, when I did my research on what I can eat and not eat as someone who is sensitive to Gluten I found that the reason Oats were out is because they are processed often times in the same plants as wheat flour).

And, bump - I want this on top for awhile so you might see me “bumping” your information for a couple of weeks.

Brenda V.

P.S. Can I copy your post and keep it on my computer to use as a source of education when this subject comes up on other lists I am on? It was so very precise and well written.


#3

No problem. Glad if I could help. When I hear about someone newly dx-ed I think of all the misinformation I received and try to clear up some things.

I’m trying to get my email to be available too, but I’m having trouble changing the addy for some reason. It’s stgemma1@yahoo.com

~donna


#4

Oh yeah, and about the oats - It’s primarily the oats in the U.S. - for some reason they are processed with the wheat, as you said. I haven’t tried oats imported from Europe, but I bet they’d be fine. Europe is very knowlegeable about Celiac - they have the highest incidence of the disease for some reason (or maybe they just have better doctors and more people are getting dx-ed ;)). Anyway, check before you try - I’m not an oat person so I’ve never tried them imported.
~donna


#5

I spoke to my doctor about why in Europe they were so good about diagnosing Celiac and offering GF foods. I have a friend who grew up in Ireland and when I came to her with my families Celiac worries, she was like "Oh yeah! In Ireland there are loads of options–isles of thing in the grocery that GF."
My Doctor siad that they just saw that people had this and were not being diagnosed, so now they just test everyone. She siad that more Irish don’t have celiac than Americans, they are just diagnosed and treated. She also siad that the only reason it isn’t diagnosed in America as often is just because Doctors don’t know to test for it. She siad it is more common than milk allergy (lactose intolerance as well) and it is always one of the first blood tests she orders.


#6

[quote=beckyann2597]I spoke to my doctor about why in Europe they were so good about diagnosing Celiac and offering GF foods. I have a friend who grew up in Ireland and when I came to her with my families Celiac worries, she was like "Oh yeah! In Ireland there are loads of options–isles of thing in the grocery that GF."
My Doctor siad that they just saw that people had this and were not being diagnosed, so now they just test everyone. She siad that more Irish don’t have celiac than Americans, they are just diagnosed and treated. She also siad that the only reason it isn’t diagnosed in America as often is just because Doctors don’t know to test for it. She siad it is more common than milk allergy (lactose intolerance as well) and it is always one of the first blood tests she orders.
[/quote]

Wow! Wake up America, eh? My kids are getting tested this year as they have their well-visits. Their pedi. finally did some research and realized that it was more common than they thought and it’s mainly genetic. Btw, no one in my family has ever had anything like this before - nothing that even resembles this, so, it wasn’t genetic in my case. I’ve heard it can be a recessive gene that can be triggered by stress or a certain virus. They aren’t exactly sure what causes it, but for most people it is genetic. None of my kids show symptoms, but then again, I never did either until about 7 years ago - and only bothersome enough to need a doctor about 5 years ago, and only a necessity to get treatment about 3 years ago. So, it was slowly progressing, but if I think back, there were probably always signs. You get used to feeling lousy after a while and you don’t even think about checking it out. Wish I had known years ago - I feel amazingly good now!
~donna


#7

BTW, I was talking about the pediatric Gastro doctor, so it isn’t a regular GP. We can always hope they wake up too!


#8

[quote=beckyann2597]BTW, I was talking about the pediatric Gastro doctor, so it isn’t a regular GP. We can always hope they wake up too!
[/quote]

Absolutely. My dx was lucky. It was an endocronologist who discovered the antigens in the blood, but wasn’t convinced I was Celiac b/c of my unusual symptoms. I insisted on an upper endoscopy tho, which, btw, came back normal. The gastroenterologist said I definately didn’t have Celiac and to go back to eating normal. Well, little did he know that after some time on the diet, everything can return to normal anyway, so, I may have been Celiac, but the biopsy didn’t show anything b/c I had healed. Also possible to get a normal section for the biopsy. It can take several tires to find a portion that reveals the problem. It is actually more acurate to dx based on blood tests and trying the diet. I finally went to a family practitioner who was highly recommended to me. There was no question by then - the antigen levels in the blood were so high. The point is, even the gastroenterologist didn’t know what to look for. One try and he was sure I wasn’t Celiac. Glad I sought a second opinion.


#9

While I have not been completely gf I have reduced the amount I eat dramatically and my IBS has almost disappeared. It is difficult to find GF products but I am being more stringent in my shopping and boy am I feeling better. I have RA and I think reducing the gluten in my diet has also helped with the inflamation - along with adding some gelatin to my diet in the form of a tablespoon every morning with my chrystal light. thank you so much for this post!


#10

Hi Leslie, Its Rebecca, the fellow St. Joseph’s parishoner! Raley’s has a fantastic selection of GF stuff in the Health foods aisle and if you just walk into the Health food store in McHenry Village and ask what is GF they will walk around with you and tell you the best sellers and show you where everything is located. Also, Outback Steakhouse has an entire GF menu! Hope that helps!

I have some cook books you can borrow if you would like. When the idea that my daughter might be Celiac came up, my helpful family started buying me tons of cookbooks (before we even took a blood test!). We are not using any of them since we have been advised by the specialist to not do a GF diet until after a diagnosis (your body needs to be reacting to Gluten for the blood test to come back positive), and since she is doing okay on a gluten included diet, she might not be celiac at all. So IM me if you want those cookbooks.


#11

Bump - just want to keep this up on top for awhile. It has some great information for celiacs and those like me who have an intolerance to wheat (putting us in the same basic avoidance of certain food categories).

Brenda V.


#12

Bump


#13

Hi everyone,

I have CD too; unfortunately I wasn’t diagnosed until I was 47. I had a lifetime of seemingly unconnected health problems. When I look at childhood pictures, there I am with skinny arms and legs and a bloated stomach. In my teens, I had that itchy, burning rash on my legs and arms that I know now was the CD skin disease. When I read a list of CD symptoms and conditions, I have had at least 75% of them over the years. I feel so much better now.

Unfortunately, I live out in the boonies, and it is a long drive to buy gf products like cereals, pasta, etc.; so when I go shopping I really have to stock up. I buy McCann’s Irish oatmeal and have a bowl of oatmeal about once a week, and so far no symtoms. I have read that soon an oatmeal imported from Norway may be available in the U.S.

I receive Communion from the chalice, and sit in the front pew so that I can receive first. Father was very kind and helpful when I first told him about my celiac disease. He’s just the best!

God bless


#14

[quote=JoyToBeCatholic]Absolutely. My dx was lucky. It was an endocronologist who discovered the antigens in the blood, but wasn’t convinced I was Celiac b/c of my unusual symptoms. I insisted on an upper endoscopy tho, which, btw, came back normal. The gastroenterologist said I definately didn’t have Celiac and to go back to eating normal. Well, little did he know that after some time on the diet, everything can return to normal anyway, so, I may have been Celiac, but the biopsy didn’t show anything b/c I had healed. Also possible to get a normal section for the biopsy. It can take several tires to find a portion that reveals the problem. It is actually more acurate to dx based on blood tests and trying the diet. I finally went to a family practitioner who was highly recommended to me. There was no question by then - the antigen levels in the blood were so high. The point is, even the gastroenterologist didn’t know what to look for. One try and he was sure I wasn’t Celiac. Glad I sought a second opinion.
[/quote]

I can’t understand why the gastroendo. doctors could not catch my CD all these years. I was finally diagnosed by my asthma/allergy doc. My asthma is much better being gf, too.


#15

I just found out last Tuesday, the day of my biopsy.

I have been anemic for a number of months and my doctor could figure out why. He spoke to a Hemo Doc. That doc told him to test for the antibodies. If postive, send me to the GI, if negative I would see the Hemo.

It was VERY positive. So they did the biopsy and here I am, trying to be gluten free right before Christmas.

Although I don’t live in the boonies, my city doesn’t have a lot of options for me. Our health food store is about the size of my living room. I will have to check it out, but I don’t hold much hope. This past weekend, I drove to Atlanta and went to the Whole Foods store. WOW, that was great.

Just wanted to check in here with the rest of you.


#16

It definitely isn’t always easy to find gf food. Do you know if there are any food co-ops in your area? Half of my family is gf, althought not because of celiac, and we belong to a food co-op where you buy things in bulk and it’s generally cheaper than health food stores anyway. :slight_smile:


#17

great info, thanks, I am being grain free at present as part of low-carb for diabetes, and it has made a difference even tho I don’t test for any allergy or sensitivity. DD is on a gf diet and was also told to avoid anything with malt as an ingredient including malto-dextrin, a sugar, because it is derived from barley. she cannot drink beer, use many laxatives and OTC remedies that have maltodextrin


#18

For those of you out in the boonies or having a hard time finding GF foods - get your self a Vita-mix blender with the dry-food container and you can grind your own rice and tapioca to make your own flour mixes. You can then “stock-up” on the other ingredients to make flour mixes (potato starch, corn starch, xanthan gum). I have made pop-overs, pie crust (this one was harder and my husband ended up rolling out one of the two crusts I made 'cuz my wrists hurt), cream-puffs and sandwich brea with my own home ground flour mixes.

It will set you back around $500.00 but has been well worth it for me. I am blessed though as not that far away is a Sunflower Market and they carry a nice selection of GF foods as do some of my regular grocery stores - even Wal-Mart sometimes has GF frozen waffles!

I made krumkake the other day using a rice flour mix. We have made at least four batches now and eaten them all! I would imagine you could do the same for Pizelles (sp?) both use a special iron to make wafer thin cookies.

As far as good sources check out anything by Carol Fenster, PhD. I have her “Wheat-Free Recipes and Menus” book and my young friend who has two of the three markers (or 3 of 4?) for CD has her “Gluten-Free 101” book. I love her books because she has good Southwest recipes in them like sopaipillas (haven’t made them yet but want to).

Watch out for hotdogs, sausages etc. Anything that is prepared foods might have some form of gluten in them.

I love to experiment with foods and learn the chemistry behind how foods interact with each other.

Should we start our very own GF recipe thread? I have to make bread tomorrow and then make sure I have enough flour mix to take with me while on vacation so I can bake my own bread and other goodies.

Brenda V.


#19

Sounds great.

Right now, I am using the stuff that I got from Whole Foods. But I would love some tried and true recipes.

I will be going back to Whole Foods in about 3 weeks. It would be great to have a list of flours or mixes and to really know what to do with them.

I have a pizzelle iron, and would love to make some that I can eat. And if anyone wants the recipe that I have, keep in mind it uses 8 cups of wheat flour, I would love to pass it on.


#20

we bought a Vita-mix 20 years ago that is still in daily use and it is the single best kitchen investment we ever made. It comes with two containers and blades, one for dry, grinding grain, nuts etc., one for wet, veggies, fruit, drinks etc.

It is especially useful for soups using whole veggie ingredients. You would be hard pressed to find a canned soup or boxed mix that does not contain gluten.


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