How Gluten Free Do I Need To Be?

[jeggen]

I was recently diagnosed with Celiac disease and rather quickly given some of the stories I have heard. (My GI doctor tested me for Celiac on my first visit.) I have had a number of other infections in the past (Giardia, E-Coli, etc.) so I had always thought my gas and diarrhea was related to those.

Anyway... I am wondering how careful I need to be with worrying about CC and other things. In particular I am a pastor and not sure that I am willing to use different communion bread/wafers than the congregation, but I do know they exist and even have them. How do I know if taking bread or a wafer for communion is too much for my body to handle?

Are there other cases when you just indulge yourselves for a piece of cake, a couple of drinks of beer? I have not done that yet, but it is certainly tempting. I am hoping someone can share some experiences of how they knew if their body could handle small amounts of gluten, or if Celiacs simply can never have any gluten.

Thanks!

[gfmolly]

Unfortunately in order for your body to stay healthy you need to avoid gluten completely, which means no cheating. I am Catholic as well and haven't had the host since I've been gluten-free. Last week at church the wine was almost gone when I got there, so I didn't really get any, just tipped the cup! You won't have that problem! (:

There is a gluten free beer available, but I've never been a beer-drinker, so I don't know if it is any good. Think it's called Redbridge. There are some really great gluten-free baking mixes so that you can enjoy a sweet treat as well from time to time. My favorite is Pamela's chocolate brownie mix, and I add a handful of chocolate chips to the mix to make it even better.

It does get easier, and you will feel so much better after some time. I'm not sure what your symptoms are, but the worse they are, the more clearly you will see the importance of staying gluten free.

Best wishes.

Terri

[par18]

Hi,

To answer your question as gluten-free as you can. By that I mean 100%. To my knowledge I have not been glutened at all in the over 2 plus years I have been on the diet. Ironically the only thing I really missed in the beginning was beer. I never "tested" myself with the gluten beers after I recovered to see if I had a response. I waited until a gluten-free one was developed and was more than satisifed with the "Redbridge" product that came out 9 months ago.

To me starting the diet was as much a scientific project as anything else. I had a goal (eliminate gluten completely) and get my health back as quickly as possible. I would accept no slip-ups and as a result have had none to my knowledge. If your goal is 99% then that in my opinion is as good as you will get. What effect that will have on you I cannot say. I personally never want to get any of my pre-diagnosis symptoms again as long as I live. This may seem unrealistic but as long as I do my best to make this happen I think in the long run I will be fine.

You said that a gluten-free wafer is available. If so is there some reason why you would not use this? I am pretty sure that in the future there will be substitutions for just about every gluten product you can imagine. Just be patient.

Good luck and hope this helps.

Tom

[jerseyangel]

Hi jeggen, and welcome

I agree with Tom in that you should strive to be 100% gluten-free. Even if you were to "get away with" small amounts of gluten from time to time--and by that I mean have no apparent symptoms--your intestine is still being damaged and will consistantly be inflammed. Unfortunately, this state of inflammation leaves us vulnerable to serious complications down the line.

It takes 2-3 weeks for the immune reaction in your body to die out after ingesting gluten. To "cheat" even once a month is almost like not being on the diet at all. With Celiac, it really is all or nothing.

We've all had those moments of not wanting to be "different", but in this case, I think the gluten-free wafer is the wise decision. Seriously, after you've been at this a while, substituting becomes second nature!

[cruelshoes]

If you are a celiac, there is no safe level of gluten. No gluten ever, period. If you haven't already, I would suggest you read Dr Green's book: Open Original Shared Link. The problem with a little bit of CC here and a swig of beer there, is that those small exposures add up over time to be a lot of exposure. If you don't remove gluten from your diet, you can't get better. Mom was right - if you pick it, it will never heal.

You don't say specifically what your religion is. Different religions have different rules on whether or not the host must contain wheat. You would probably be the one that knows that, since you are the pastor! If your does not, there are gluten-free wafers available from Open Original Shared Link. Open Original Shared Linkto a page that has host recipes and other information.

BTW - there are gluten-free beers available. Redbridge is the name of one, and I think another is New Grist. I am Mormon, so I can't help much in that department, but I'm sure someone else here can.

I know your head is reeling right now, and this seems like a lot to absorb. But over time, you will get used to it and even comfortable with the new diet.

[hathor]

I certainly never plan for an indulgence. Just accidentally glutening myself is bad enough. I'm impressed that you never did this in 2 years, par18! Or had it done to you ...

If you are like many (most?) people, jeggen, once you have been gluten-free for a bit, any ingestion of the stuff makes you feel bad. I will feel worse with glutening than I did when I was regularly and unabashedly eating gluten all the time.

I had some seasoned nuts a week ago that my husband bought. There was no ingredient list so I figured, well, curry cashews. Ingredients must be: curry powder (the ones I've seen are gluten-free), and cashews (I thought). He actually cooked a meal with these and gluten-free pasta, onions, and broccoli, and sprang it on me. It looked so good and I definitely want to encourage his cooking Well, I'm only now feeling relatively normal. Researching now, I see that "seasoned nuts" are one of those things for which you are supposed to check the ingredients. I don't know how the store got away with not listing them.

So learn from me and do your research! (I just learned a few days ago that some teas contain gluten. Naturally, teas I had used. A couple weeks ago I realized that there was wheat in my hair gel, which explained some occasional symptoms when I swore I hadn't been glutened, or caseined, or soyed, or whatevered. So I'm particularly paranoid right now )

You can find alternatives for everything -- bread, beer, cake, pasta, etc. -- although you may need to try out different gluten-free versions to find your favorites. There IS wretched gluten-free food, but it isn't all that way

[happygirl]

Hi Jeggen,

Welcome to the board. I think that reading a book written by a leading Celiac researcher, physician, expert from Columbia University....Dr. Peter Green "Celiac Disease: A Hidden Epidemic" would help you understand the seriousness of Celiac and why you need to be 100% gluten free. You can find it at most bookstores or order it online.

Check out www.celiacdiseasecenter.columbia.edu for more info, also.

Open Original Shared Link

Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis.

[sillyyak]

You need to be totally gluten-free otherwise it is pointless.

[Guest Happynwgal2]

I was recently diagnosed with Celiac disease and rather quickly given some of the stories I have heard. (My GI doctor tested me for Celiac on my first visit.) I have had a number of other infections in the past (Giardia, E-Coli, etc.) so I had always thought my gas and diarrhea was related to those.

Anyway... I am wondering how careful I need to be with worrying about CC and other things. In particular I am a pastor and not sure that I am willing to use different communion bread/wafers than the congregation, but I do know they exist and even have them. How do I know if taking bread or a wafer for communion is too much for my body to handle?

Are there other cases when you just indulge yourselves for a piece of cake, a couple of drinks of beer? I have not done that yet, but it is certainly tempting. I am hoping someone can share some experiences of how they knew if their body could handle small amounts of gluten, or if Celiacs simply can never have any gluten.

Thanks!

Good Morning, jeggen,

Like all others have said before me: NO GLUTEN! Ever again. That is the only way your body can heal and the damage from unknowingly being glutened for so many years will be reversed. I know it is difficult, and I know it will be tempting to cheat, and I know it some days will not seem like a "big deal" to have just a "little bit", but it is a HUGE DEAL.

Remember that Celiac is an AUTO IMMUNE DISEASE. That means that your immune system goes into overdrive to fight this "foreign" substance that gluten is to you. There is a long list of serious diseases that can result from NOT staying away from gluten when you are a Celiac, or which can come as a result of you not knowing that you ARE a Celiac; thyroid disease, diabetes, cancer, just to mention some of the most serious ones, but there are others like depression, anxiety, skin problems, other food insensitivities and allergies, and a host of other more and less serious conditions.

In regard to church and communion: that is a tough one, but do you really think that God would want you to compromise your health every time you take communion? This is one I am faced with, too, and I simply take a grain the size of a needle head - really nothing - or none at all, or supply the congregation with gluten free wafers or bread. I think it is the intention, that is more important than actually taking the bread or the wafer - God knows what is in our hearts, and He knows what you REALLY want to do, which is take part of the communion - or as it is called in my church, the sacrament.

I am sure you will figure out what will be the best and the right thing for you to do.

[Canadian Karen]

My answer is short and sweet:

100%!

[Fiddle-Faddle]

To the excellent advice above, I add this:

I do not have an official diagnosis of celiac myself (didn't have the biopsy). However, I have no intention of ever intentionally eating gluten again. I have seen how my reflux, autoimmune thyroid disease, and weight problem have dramatically improved upon going gluten-free, not to mention the tummy symptoms I had been able to ignore, and the horrible rash that grossed out everyone who saw it.

I have read enough to be 100% convinced that continued consumption of gluten WILL lead to other autoimmune diseases, such as rheumatoid arthritis, fibromyalgia, lupus, diabetes, MS, etc. And I personally know someone who died of lymphoma--for which it's documented that celiac puts us at increased risk.

The amazing thing to me is, after a couple of weeks of horrible cravings for bread, cookies, and cake, the cravings simply disappeared. I can have a piece of home-baked (i.e., delicious) gluten-free bread and feel happy after one piece. Same with cookies, cakes, muffins, brownies, etc. I couldn't do that with gluteny baked goods. I could happily eat half a batch of Tollhouse cookies in one sitting. Now, I'm fine after 3 gluten-free-but-still-delicious-becuase-they-are-homemade chocolate chip cookies.

GLUTEN IS ADDICTIVE. It's like a drug. Drug addicts can't indulge occasionally, and neither can we, not in the gluteny stuff. But there are geniuses out there who have created fantastic recipe that really DO taste just like the real thing, recipes for pizza crust, bread, cakes, cookies, muffins, you name it!

So, welcome aboard, G-d Bless, and good health to you!

[Ridgewalker]

The communion wafer is a tough issue. My mother is about a year into Catechism classes, on her way to converting to Catholicism from Lutheranism. She intends to try the low-gluten wafers that are available by mail order, and see how they go. These wafers were developed by a group of nuns, I believe, who worked for years to develop a recipe that was still officially wheat, but had an extremely low level of gluten. Many doctors and scientists have said that the end product is not a dietary significant amount of gluten (specifically in relation to Celiac.)

(I really hope these work for her... she is extremely sensitive, and hasn't figured out all her intolerances yet. She apparently reacts to all modified food starch, no matter what it's derived from, etc...)

If these wafers work for you, you might think about speaking to your congregation about using them for everyone..? Or if not for everyone, there's a strong chance there may be others in your congregation that would appreciate the use of them. Even if it's only a couple people, then you wouldn't be using something different from everyone.

In my mom's church, I'm not sure about the parishioners, but there are no less than five sisters who use the low-gluten wafers.

My 6-yr-old just began Faith Formation class today. I have no idea how we're going to handle the host for him yet.

-Sarah

[Fiddle-Faddle]

The communion wafer is a tough issue. My mother is about a year into Catechism classes, on her way to converting to Catholicism from Lutheranism. She intends to try the low-gluten wafers that are available by mail order, and see how they go. These wafers were developed by a group of nuns, I believe, who worked for years to develop a recipe that was still officially wheat, but had an extremely low level of gluten. Many doctors and scientists have said that the end product is not a dietary significant amount of gluten (specifically in relation to Celiac.)

Sarah, there was a LOT of discussion of these low-gluten wafers right after I joined last year, and, the big problem is, the doctors and scientists who say that the low-gluten wafers should be safe are not aware that the supposedly "insignificant" amount of gluten in the low-gluten wafers is STILL enough to not only cause a sensitive celiac to react, but it's enough to do damage even in less-sensitive celiacs and gluten-intolerants. The latest studies have indicated that even miniscule amounts are enough to set off a celiac's immune system and cause it to attack their own body. And studies have also proved that damage occurs even in the absence of obvious symptoms.

I wish I had something more helpful to offer here. It does seem almost evil to me that a religious authority would insist on a sick person's consuming something that would almost certainly make them even sicker, in the name of religion.

I believe the problem lies not with the religion, but with the human beings in charge of these decisions.

What if it were a different scenario? What if the host had been made for 2000 years from peanuts? Would they be insisting that peanut-allergic children, suffering obvious anaphylactic and often fatal allergies, consume a peanut-based host? Would they say, "Oh, don't worry, it's supposed to be an insignificant amount?"

I do believe that things will change--but not until the child of someone "in power" is affected.

It's similar to the vaccine issue here in the United States. The pharmaceutical companies continued to preserve children's vaccines with mercury-based thimerosal (a known neurotoxin that has been banned for decades in ALL over-the-counter products) until a senator's grandchild was severely affected. Only then did complaints become public, and only then did things begin to change. (Now, it seems that only the flu shot and the varicella {chicken pox} vaccine contain thimerosal.)

[jerseyangel]

I believe the problem lies not with the religion, but with the human beings in charge of these decisions.

This is how I feel, too. Being Catholic, I have strong feelings about this, but this is not the forum to discuss them. I just want to say that I completely understand the frustration behind the Communion Wafer issue. In my earlier post, I suggested the non-gluten wafer assuming that you were not Catholic because the Catholic wafers are low gluten. I'm sorry if I assumed incorrectly.

[Tim-n-VA]

I'm also in the group that would never intentionally consume gluten and think that any quantity is a problem.

However, I think that there is a level of "concern" about cross-contamination where the stress becomes a problem. As with many of these things, you have to decide how much risk you are willing to take (with regards to any food you eat) and how much you are going to worry about the things you can't control.

[Fiddle-Faddle]

this is not the forum to discuss them.

Oops--sorry!

[mustluvcats]

Hi Jeggen:

In answer to your questions about cheating on your diet. Once you have been on your diet for a couple of weeks and see how much healthier you feel, you won't want to cheat.

I have to eat wheat the whole month of September in order to be tested in October. After only three days of what my family normally eats, I have been in so much pain, that I'm really don't care if I take the test or not. I know what I feel and that is horrible. I have retreated back to gluten free just to get some relief. I will have to tell you my first stop was Hooters for Hot wings and beer, by the next day my mouth was one giant ulcer, as was my throat and stomach. It wasn't worth the pain, I can honestly tell you! As much as I loved beer, it was like drinking hot acid. It seems that after you have been off the gluten and wheat, you are less tolerate of it.

The Redbridge beer is similar to Killians or the darker beers! I have found the best thing to do is drink the potatoe vodka. There are several different brands, and it won't hurt your stomach either....LOL! But make sure you ask for potatoe vodka, those are the only ones safe.

I am now amazed at the people that are having problems with wheat and gluten and are not even aware.

Oh, one more thing about your cake, Out Back has chocolate thunder from down under there is no wheat or gluten in it, it is really great. Check out there Gluten Free menu on line. There are several chains that offer this, so you can still eat out and not feel deprived. That was one of mine big problems, everyone eats out so much these days.

Be glad you were diagnosed early, you would be surprised of some horror stories out there.

Best of Luck,

I was recently diagnosed with Celiac disease and rather quickly given some of the stories I have heard. (My GI doctor tested me for Celiac on my first visit.) I have had a number of other infections in the past (Giardia, E-Coli, etc.) so I had always thought my gas and diarrhea was related to those.

Anyway... I am wondering how careful I need to be with worrying about CC and other things. In particular I am a pastor and not sure that I am willing to use different communion bread/wafers than the congregation, but I do know they exist and even have them. How do I know if taking bread or a wafer for communion is too much for my body to handle?

Are there other cases when you just indulge yourselves for a piece of cake, a couple of drinks of beer? I have not done that yet, but it is certainly tempting. I am hoping someone can share some experiences of how they knew if their body could handle small amounts of gluten, or if Celiacs simply can never have any gluten.

Thanks!

[jerseyangel]

Oops--sorry!

Alison,

That was not meant towards you at all I was agreeing with your statement, and then I was just speaking about myself--if I'm not careful, I tend to go on and on about this.

[Ridgewalker]

Sarah, there was a LOT of discussion of these low-gluten wafers right after I joined last year, and, the big problem is, the doctors and scientists who say that the low-gluten wafers should be safe are not aware that the supposedly "insignificant" amount of gluten in the low-gluten wafers is STILL enough to not only cause a sensitive celiac to react, but it's enough to do damage even in less-sensitive celiacs and gluten-intolerants. The latest studies have indicated that even miniscule amounts are enough to set off a celiac's immune system and cause it to attack their own body. And studies have also proved that damage occurs even in the absence of obvious symptoms.

I wish I had something more helpful to offer here. It does seem almost evil to me that a religious authority would insist on a sick person's consuming something that would almost certainly make them even sicker, in the name of religion.

I believe the problem lies not with the religion, but with the human beings in charge of these decisions.

What if it were a different scenario? What if the host had been made for 2000 years from peanuts? Would they be insisting that peanut-allergic children, suffering obvious anaphylactic and often fatal allergies, consume a peanut-based host? Would they say, "Oh, don't worry, it's supposed to be an insignificant amount?"

I do believe that things will change--but not until the child of someone "in power" is affected.

It's similar to the vaccine issue here in the United States. The pharmaceutical companies continued to preserve children's vaccines with mercury-based thimerosal (a known neurotoxin that has been banned for decades in ALL over-the-counter products) until a senator's grandchild was severely affected. Only then did complaints become public, and only then did things begin to change. (Now, it seems that only the flu shot and the varicella {chicken pox} vaccine contain thimerosal.)

See, that's exactly what I'm worried about-- even when they say it's dietarily insignificant, if it's there, it's there. You may still react to it... and even if you don't, it's still going to damage the villi.

"... I believe the problem lies not with the religion, but with the human beings in charge of these decisions. "

I agree 100%, and it's sad and frustrating.

Jeggen, another thing to consider, is that a lot of us are simply worried about using the low-gluten wafers just once a week, or even just on holidays. In your case, on the other hand, would it be every single day? Even multiple times per day? I have to admit that that kind of consistent (albeit low level) glutening is scary.

Keep us updated!

-Sarah