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Eating Less Gluten - Any Benefit?


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11 replies to this topic

#1 adamschroeder

 
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Posted 22 July 2004 - 07:14 AM

I am still in the process of finding out if I have Celiac Disease. I got a call from my Doctor on Monday saying that I had Celiac Disease. At that moment I had no idea what it was and I've been researching it since then.

Right now I'm trying to get more information from her about exactly what blood test she ordered and what the results are. She did not know much about the Celiac. She was just running a battery of test trying to determine the cause of my Osteoporosis (unusual for 26 year male), so she was going to be doing some research as well. However she said anything over 30 indicated a strong likelihood and mine came back at 55.

My Osteoporosis was discovered because I was part of a bone density research study late last year. I don't have any noticeable symptoms and I had frequently eaten lots of bread and wheat products. I probably eat pizza 3 or 4 times a week, Subway and Blimpies were my ideas of "healthy meals". I suppose I may have had occasional symptoms after reading other peoples experiences, but I never noticed them out of the ordinary. I would have considered myself to be an average healthy guy.

Since I found out on Monday I haven't eat any bread or any obvious source of Gluten. However I have not totally given up less obvious things like condiments, hot sauces, and such.

Since it seems like it takes such extremely small amounts of Gluten to trigger reactions and damage in people is there any benefit to simply eating less Gluten? Or is more simply described as “all or nothing”. People talk about having a reaction to a couple crumbs that contain Gluten. Would they have a similar reaction if they had eaten an entire piece of bread? Or would it be a whole new magnitude of pain?

Basically my question is:

Is there any benefit to cutting down my Gluten intake while I determine for sure if I have this Disease? Or is there little advantage because eating “1 unit” of Gluten does the same damage as eating “100 units”?

Thank you very much for your time. I’ll likely be posting some in the “Introductions” thread in the near future. I enjoyed reading that last night before I went to bed.

It’s really hard focusing on other things (such as work) when my future is in such uncertainty at the moment.

-Adam
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#2 celiac3270

 
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Posted 22 July 2004 - 10:44 AM

The amount of gluten intake does affect severity. Therefore, 1 unit of gluten would cause less damage and less pain than 100 units of gluten. If you are going to have other testing done: blood tests, biopsy, etc., then you should not significantly cut down on gluten....doing so could mess up your test results and show that you do not have celiac disease or make it questionable as to whether you have it or not. In the beginning of the diet, you probably won't end up eliminating all gluten......you'll find later that you made a few mistakes or didn't know about a few ingredients being bad.....at the start, I was eliminating all wheat, rye, oats, and barley, but knew nothing about malt and the uncertainty of artificial and natural flavors....therefore, I was still ingesting some gluten two weeks in.....I later realized my mistake. Cutting this short, less gluten means less damage on the intestines and usually less severity in symptoms. If you are going to have additional testing done, you should not begin cutting out gluten--rather, use this period of time as a chance to learn about what you can and can't eat....as a chance to start stocking up on gluten-free foods and buying new cooking utensils, pots, toasters, and pans to avoid contamination....etc. If your doctor chooses not to run additional tests, you should try to start the diet immediately. You may not eliminate all gluten despite your best intentions to, but you'll be doing less damage to your intestines. Good luck.....feel free to PM or e-mail me with questions or for food suggestions. This board is a terrific source of knowledge and support network....it helped me start the diet 5 months ago and cope with celiac disease since then.

-celiac3270
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#3 tarnalberry

 
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Posted 22 July 2004 - 10:26 PM

"cutting down on gluten" may make a big difference in test results, but you may not see as much change in your symptoms as you'd like.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 adamschroeder

 
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Posted 23 July 2004 - 05:44 AM

celiac3270 / Tarnalberry,

Thanks for responding :) It is very appreciated.

I'm found out that the test I had done was a Tissue Transglutiminase (IgA, tTG) which is the one with accuracy over 95%.

I guess my "problem" is that I don't have any perceptible symptoms. The only documented physical problem I have is my osteoporosis and that is only because of my chance encounter with a medical study and bone density scan.

I used to eat to 2 foot long meatball subs on wheat bread every week. I was a regular on double punch day at Blimpies. I did have occasional diarrhea (once or twice a monthy maybe...) it wasn't really a problem and nothing with sufficient consistancy to relate it to what I was eating.

However, after reading more about what Celiac does I have hard time just going back to my regular eating habits for the purpose of testing.

I just have a hard time imagining there is not some level of significant tolerance, particularly in the people that don't seem to have obvious adverse effects to Glutin.

I know I am far from the "acceptance" stage of this. But it seems within the realms of possiblity that avoiding obvious (breads, pastas) sources of glutin is doable by me. While checking things like toothpaste and ketchup it just not clicking with my brain at this moment.
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#5 celiac3270

 
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Posted 23 July 2004 - 02:22 PM

A few things....first off, some Celiacs have no signs at all; osteoporosis is a long-term symptom associated with celiac disease and diarrhea, even periodically, is a sign. You are by no means a non-symptomatic Celiac......

For Ketchup, you can get some of those special organic kinds, or just stick with Heinz. I don't have a complete list, but someone else might, or it might be available online. I have, however, called the company: their ketchup is gluten-free. Not sure if you were just using that as an example or if it was a question :) .

You mentioned having a hard time eating regular non-gluten-free stuff after hearing all this bad stuff about the effects of gluten on the body....two things regarding that: first, I felt exactly the same way when I first saw the board in Feb. and then had to stay on gluten until my biopsy. Second, that is actually a terrific sign; after all, if you're having trouble eating gluten-containing foods when you're told to, then not eating them when you're told to be gluten-free shouldn't be an issue....you won't be tempted.

Your final point, about not thinking about hidden gluten: that's fine....it'll click, eventually. I think that for non-celiacs or people without allergies or intolerances, eating is just.....sort of automatic.....something you don't really think about and something that you're not always conscious of. You just need to break that habit.....thinking about obvious sources is the first step, then you'll soon train yourself to be careful of everything you touch and everything that enters your mouth......you may not catch everything at the start, but you'll learn fast.

-celiac3270
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#6 Boojca

 
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Posted 23 July 2004 - 05:11 PM

The bottom line is that it's entirely up to you how you deal with this. Having celiac disease is like being pregnant, there is no such thing as being "a little bit..." You either are or you aren't. That said, everyone with celiac disease has a very different experience. I don't think I've heard anyone say they have the EXACT same experience as another yet. Obviously even eliminating a little gluten is going to help. However, ingesting just a little still does damage, and every little bit adds up. There are other issue besides the physical symptoms that go along with celiac disease, as you've probably learned. If the continued disintigration of your bones is ok with you, and if the increased risks of things like Lymphoma, etc... are also ok then I guess it's really up to you how thorough you are about all this.

Unfortunately for all of us here, celiac disease is one of those "rare" things that has gone relatively unstudied. So, there is no hard and fast answer about how even miniscule amounts of gluten affects (or doesn't effect) the intestine. I know how you are feeling. My son had none of the "normal" symptoms of celiac disease. He dropped ton of weight very quickly, but never had diarrhea, etc.... So, it's hard for me to know even now what his "reaction" to gluten is in the event that he does happen to ingest some. And no one can seem to tell me if after being gluten-free he will have a different reaction to having some. And being two, I think it might be a while before he can tell me really how he feels. Sigh.

So, really, this is all up to you. I'm one of those people who is trying to do the best for my son, while also not getting fanatical about it. I want to make sure he doesn't get gluten, but I am also not sure if using the same teflon pans for him as we use for non-gluten-free items is a big deal. I find that hard to believe. I absolutely believe in the separate toaster, replacing the porous mixing spoons, etc.... but I will not be replacing every item in my kitchen.

Has that helped at all? I remember being new to all this as well, and trying to weed through the necessary vs. the fanatical. It's hard, as you know, when some people think about gluten and find themselves doubled over...and therefore avoid EVERYTHING anywhere having to do with it. And then the people like you and my son who don't seem to have any discomfort, but obviously have other affects from it. It's a tough thing.

Anyway, no matter what you decide to do, welcome to this group. You have found an amazing group of people here.

Oh, and another thing, get a product listing. You will be amazed at the number of "normal" items that are already gluten-free. Honestly, the only thing I've had to change in our house are breads, pastas and baked goods like cookies/cakes/brownies. Everything else we eat, so far, is gluten-free!!!!

Bridget
Georgia, Vermont USA
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#7 flagbabyds

 
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Posted 23 July 2004 - 06:25 PM

I agree with Boojoca. It is up to you, it is your body and your decision no one elses. Symptoms are really different for every person, even if you d0n't get sick, you still have the disease and whenever you are eating gluten you are damamging your intestines, no matter what you feel. You think having Osteoporosis @ 26 is weird, I have it and was diagnosed with it at age 12! It is just how your body reacts. I suggest you do the diet because according to your doctor you have celiac disease and you need to follow the diet.

When my sister went on the diet she said it was like she got glasses(when the people after they get glasses say they can see so well, her analogy, not mine) she thought everyone always felt bloated and that was just normal, you might not know you are sick because you haev lived with it all your life but treally when you go on thhe diet you will feel mucho better!
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Molly

#8 glen4cindy

 
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Posted 23 July 2004 - 07:05 PM

Well, I for one know that consuming less gluten has caused a radical change in how I feel.

As far as being symptomatic or asymptomatic, I would have to say that I have far more symptoms of Celiac than not. It has not always been that way though. I don't know if celiac disease is something that you are born with, and it keeps growing and growing and growing until it gets bad enough for you to notice, or if it is the sort of thing that can be like diabetes, something that can come on very early in life like Type 1 or later in life or during pregnancy like Type 2.

I would have to say, that wheat never used to bother me. I remember several years ago, I bought a bread machine and made bread like wild. All kinds of bread, lots and lots of variations. Milk used to not bother me. I could easily drink 1/2 gallon every couple of days (with chocolate quick of course!)

First, I became lactose intolerant. That got worse and worse. Then came GERD. That got so bad that I had surgery for it. I had hopes that the surgery for GERD would solve the lactose problems and other problems. It did not, and that is how I found this place. My Dr. suggested a wheat allergy. However, I did not drop "wheat" completely. I stopped eating bread, but, that is as far as it went. It is only recently that I have discovered the fullness of what it means to avoid gluten.

My father is diabetic. I suppose that is a very likely source for my problems, because I have read that celiac disease is often related to problems with the pancreas. If this is true, I didn't inherit Type 1 diabetes, but, celiac disease. Thanks Dad!

Anyway, I suppose one thing is true. Like many have already said, it is up to you. I will avoid gluten at all costs because of how it makes me feel. If I screw up, I will know it for sure. Some things will he hard to pass up. I did however find a recipe that is for Krispy Kreme donuts!!! Hopefully, they will turn out. All of the ingredients are on the good list except the flour. I am going to try to replace the flour in that recipe for the gluten-free all purpose flour replacement I have. I will report on the results for anyone interested.

Glen
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#9 adamschroeder

 
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Posted 23 July 2004 - 07:45 PM

Again thank you for all the responses! :)

Its not really a question of if I am going to do the diet or not. My initial question was to see if I was doing my body any benefit by cutting back on Glutin until I am able to talk to a dietician and discuss more with my doctor on where my future lies.

The doctor that diagnosed me with Celiac doesn't know anything more than what it is. So all my knowledge to date is from doing on my own reasearch online and reading the forums here. I also signed up for the email list as well.

I imagine that I'm cutting 95% of my Glutin intake simply by not eating any obvious sources. The ketchup question was just an example... The first day I found out I decided "Ok, I will have a salad for lunch instead of my usual sub". So I went to the grocery store bought a bagged salad, bought some cold cut ham and turkey, went home, made up the salad, added my meats, added some italian dressing, then sat in front of my computer and begain researching more about Celiac. This story seems simlar to others I have read when you then learn that some cold cuts and salad dressing contain Glutin.

I had recently received an email from the list server about a study that was determining how much Glutin was needed to cause damage. It was like 100 parts per million. Which is a very small amount, if you equated it to dollars it would be the difference between the cost of a T-Shirt and a very nice house.

Since the small intenstine is constantly regenerating itself it would seem to me that would be some level of damage vs regrowth that equates to a small tolerance level. From everything I have read (which hasn't been to much yet) it suggest that either this level doesn't exist, or is so miniscule as to be irrelivant.

But what really gets me thinking is that most of the people diagnosed with Celiac now are the ones having the hardest time with it. This is the current data set doctors are working with. Maybe the millions of undiagnosed people have a greater tolerance or some other coping mechanism?

Everything has a level of diminishing return being 100% gluten-free is enourmously more work then being 99.9% gluten-free. At some level (100 ppm??) the damage done by the Glutin would be insignificant. There must be some sweet spot where health, effort, sanity, and pleasure, come together.

Again, I'm just guessing, hoping, and rambling a bit.

When I think about my situation from a logical perspective I consider myself very "lucky". I am very fortunate to be diagnosed before even more serious damage has occured, and in this day of age where information of freely available on the internet and support groups such as this exist. I'm excited to think that I may feel better and heathier than I have in the past. With the recent passage of the food labeling bill it should be much easier to eat gluten-free in a few years, and with estimates of 3 Million American suffering for Celiac there is a lot of hope for future cures, treatments, or at least a large market that people want to serve (such as diabetes).

Unfortunately my heart doesn't quite feel the same way but it should in time. It was tough to find out about all of this while my wife is on vacation with her family. She is coming home Sunday and that will help ease the pain considerably. :)

I found the prodict listing today on the delphi site but haven't looked through it yet. I have already discoved that there are many thing I like and I can still eat. Such as Nacho's Supreme with corn chips, fresh guacomole, salsa, and mounds of cheese.
:)
:)

Thanks again for listening to my story. I will try to post in the Introductions thread in the next few days. Excuse any mispellings, I know I should read through my message again before posting, but I'm tired and am going to bed now.

Take care!
adam
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#10 Boojca

 
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Posted 24 July 2004 - 04:19 AM

Adam,

All I can say is that the product listing will be your best friend. I LOVE them. The one on Delphi is great. I also purchased ($20) the one from CSA Celiacs AND I have the one that was posted in one of these forums as well. Believe it or not, there are items on one that are not on the others, so I've found having all of these has allowed me to put together a pretty good list of the items we use in our house.

It's funny, the things you mentioned in your above post are all things I think we've all wondered about. Word about town is they are also working, slowly, on some sort of pill or something to combat this (like Lactaid) Obviously it won't be available any time soon, but someday.....

Like you said, the good news is that even if you ingest gluten, the intestine is regenerating and so the damage does reverse itself. Fortunately for those of "us" with celiac disease it's a temporary set back if we "goof" it sucks, but it's not like a peanut allergy (my apologies to those with a peanut allergy) where you could die from one little mistake. So, as weird as it sounds, I feel lucky that my son has celiac disease. There are no pills to take for the rest of his life, no surgeries to "look forward to"...which were the things we were looking at with some of the other things they tested for in addition to celiac disease.

It's hard at first, but the good news is that as hard as it is in the begining you will quickly see that there are a TON of "normal" foods you can have.

Good luck, and stick around! This is a GREAT board for advice and support.

Bridget
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#11 glen4cindy

 
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Posted 24 July 2004 - 08:23 PM

Yes, lots of foods.

I was sharing with my Aunt today what my findings have been about Celiac.

I have decided to look upon this as positive as I possibly can, and you seem to be doing the same Adam.

I am looking at this with the attitude that there are lots of lots of things I CAN eat. I am not seeing this as looking at all the things I cannot eat.

My sister got married today. I had the joy of being the one to walk her down the asile to give her away, as she was born without knowing who her father is. That was an utter JOY. At the reception, I had to peel the skin off my chicken, and I had to pass on the wedding cake, but, I don't feel like I was cheated.

I have found many recipes for cake, cookies, pizza dough, pie crust, and much much more. I am so overwhelmed with finding out what IS wrong with me, and I have shared this already, but, I am OVERJOYED at finding out what is wrong with me, finding out that it is NOT serious, terminal, or some sort of cancer that I was beginning to wonder about.

I suppose it has been said by the worlds positive thinkers, that a positive attitude will go a long way to keeping your body healthy.

Adam, you seem to really be doing everything right. Keep up the good work!
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#12 talblum

 
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Posted 01 August 2004 - 08:32 PM

Adam,
This is my first post :rolleyes: here.
I was diagnosed just a few weeks ago.
I was repressing it and didnt read much about it.
Like you I wonder how serious this diet should be.
So far being on the diet for more than a month I don't see improvement. It seems that I am actually doing worse, but I found out that I wasn't keeping it strictly.
What I wanted to tell you is that I didn't have any symptoms untill I was 23. Since then I had mostly bloating. The thing is that with the years it is getting worse. So my advise to you is to adhere to the diet although it is hard and frustrating and you don't feel you have problems. I used to eat a lot of wheat products and I was ok, until one night all of the sudden I couldn't sleep at night because of bloating. hopefully you will never experiance those symptoms.

Tal
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