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Gluten free eaters
      #150959 - 02/16/05 05:52 PM
abby82

Reged: 03/08/04
Posts: 335
Loc: Nevada

I was wondering how many of you are also eating a gluten free diet along with the IBS diet? I am thinking about trying this myself after getting barely any help from doctors. I know that I have seen a few of you that are so I was wondering if I could get your email addresses and we could help eachother out! Thanks!

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Abby new
      #151030 - 02/17/05 12:31 AM
Taylahmai

Reged: 11/03/04
Posts: 257
Loc: Western Australia

Yep I'm gluten free. Its actually not so hard once you find all the substitutes, there's very little we have to miss out on. Unfortunately I'm in Australia, so probably can't help you with brand names. But send me an email anytime as I'm happy to help

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~ Live life, don't let life live you ~

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Re: Gluten free eaters new
      #151135 - 02/17/05 07:50 AM
Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Quote:

I was wondering how many of you are also eating a gluten free diet along with the IBS diet? I do. It takes a little planning but is VERY do-able. I am thinking about trying this myself after getting barely any help from doctors. Abby honey, did you see my last response to your post. Please, if you can, get yourself tested for Celiac Disease. You have the classic symptoms of gluten intolerance. But the true test is how you feel going gluten free. I know that I have seen a few of you that are so I was wondering if I could get your email addresses and we could help eachother out! Thanks! You can email me any time. My address is in my profile. In the meantime, go to Celiac.com and sign up for their message boards and start reading. The people there are as nice and helpful as here.

You are so smart going GF, but don't wait! There are so many other good tasting options to wheat, barley, rye. Where it gets tricky is the food additives and cosmetics and cross-contamination, but all that will come with time. Kandee





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Re: Gluten free eaters new
      #151167 - 02/17/05 08:34 AM
abby82

Reged: 03/08/04
Posts: 335
Loc: Nevada

Hi Kandee - yes I did read your last post to me - I have had the test for celiac and it came back negative but one of my IGA (or whatever it is) levels was high. I have a copy of the results somewhere - Ill have to get it out and look and then Ill let you know. I definitely want to go gluten free but I cant decide if I want to go to the doctor again first or not. My main problem is going to be the bread - I LOVE toast for breakfast so I was wondering what the best GF bread was - any advice? Thanks again!

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Re: Thanks Taylahmai! -nt- new
      #151222 - 02/17/05 09:58 AM
abby82

Reged: 03/08/04
Posts: 335
Loc: Nevada



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Re: Gluten free eaters new
      #151235 - 02/17/05 10:19 AM
Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Quote:

Hi Kandee - yes I did read your last post to me - I have had the test for Celiac and it came back negative but one of my IGA (or whatever it is) levels was high. If any of the three come back positive then you are gluten intolerant, plain and simple. One of the three indicates Celiac Disease, but if the IgA and IgG gliadin are elevated you need to be on a gluten free diet, because by NOT doing so you run the risk of actually ruining the small intestines and run the risk of cancer not to mention getting other associated autoimmune diseases. I have a copy of the results somewhere - Ill have to get it out and look and then Ill let you know. Oh, please do. I definitely want to go gluten free GOOD for you! but I cant decide if I want to go to the doctor again first or not. First and foremost, don't wait to go gluten free, whether you see a doc or not. Every day that you wait is a day more of not feeling good. Some people going GF notice a difference in days, some weeks, others months and in rare cases a year or so. My main problem is going to be the bread - I LOVE toast for breakfast so I was wondering what the best GF bread was - any advice? Oh my, lots of advise here. The commercial ones aren't that spectacular and I've found the homemade ones to be best. I think Beth said she likes Kinnickinnick the best and I believe you have a Whole Foods in LV so you may check there. We don't have that where I am but I'm tempted to make the 1 1/2 hr. drive to get some! They all take a little getting used to but once you do, a wheat bread will taste strange to you. Just make sure whatever bread you buy is dairy free, and barley free. It should say "gluten free" or don't buy it. When starting out, goop the toast up with lots of whatever you usually put on toast..jam/honey/cinnamon sugar..that way you start getting used to a different taste easier. Oh yeah, and throw out the old toaster. Get a new one to use ONLY with GF breads. (there is a cross-contamination issue going on here) I must say, being wheat free for over 25 years the options now are fabulous. When I first started all I had was rice cakes as a bread sub...and those got old real fast. Today there are incredible pastas, alt. grains and non-grain subs. I'm in heaven!! But, I'm still learning and always will be. Thanks again! Oh, you're so welcome sweetie, anytime. Kandee




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Re: Kandee - my test results new
      #151279 - 02/17/05 11:23 AM
abby82

Reged: 03/08/04
Posts: 335
Loc: Nevada

Hi Kandee - I finally found my blood test results so I thought I'd let you know what they were so you can tell me what you think. You said that there are three tests and that one of them was specifically for Celiac - would that be the Tissue Transglutaminase IG?? Thats the one I tested Negative on. On the other hand my Gliadin IGA was a 22 which was a weak positive and the crazy high one was my Gliadin IGG which was 102 (anyhing greather than 30 being positive) Do you know what this means? Am I gluten intolerant? Ive been doing a lot of reading about it today and I read that there is definitely a good chance that your gluten intolerant if you have an high IGG OR IGA level so Im guessing I should definitely go GF as soon as possible! My only concern is is that Im DESPERATELY trying to gain weight and I think the only thing that keeps me at the weight I am at right now is all the angel food cake I eat. I eat it all day long - like a half a cake a day! What do I do! And thanks again for all your help!

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Re: Kandee - my test results new
      #151374 - 02/17/05 03:05 PM
Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Quote:

Hi Kandee - Hi again Abby.. I finally found my blood test results so I thought I'd let you know what they were so you can tell me what you think. OK You said that there are three tests and that one of them was specifically for Celiac - would that be the Tissue Transglutaminase IG?? Yep, that's the one. Thats the one I tested Negative on. That's good. If this were above normal they would likely want you to do an endoscope biopsy looking for flattened villa. And in the case of all 3 being elevated, some docs are calling that good enough to diagnose CD. It just depends on the GI. But in your case it means you haven't ruined your intestines...Yet. On the other hand my Gliadin IGA was a 22 which was a weak positive and the crazy high one was my Gliadin IGG which was 102 (anyhing greather than 30 being positive) Do you know what this means? Yes, simply put..the IgG kinda tells them you've been consuming gluten for a long time, and in dangerous amounts, and the IgA is and indication of more recent ingestion of gluten. It's nuts I know, but they also use this test as a yearly measure of how well a CD person has been adhering to a GF diet. That diagnoses of "weak positive" drives me nuts. It's like being just a little bit pregnant. Once you are out of the acceptable range, because the tests are so sensitive and accurate it means you've tested "positive" period, and should go GF. Am I gluten intolerant? You betcha...I'm appalled your doc didn't insist you go GF immediately...probably because they don't know, or study much about it. Ive been doing a lot of reading about it today that's great!!! and I read that there is definitely a good chance that your gluten intolerant if you have an high IGG OR IGA level so Im guessing I should definitely go GF as soon as possible! My only concern is is that Im DESPERATELY trying to gain weight and I think the only thing that keeps me at the weight I am at right now is all the angel food cake I eat. I eat it all day long - like a half a cake a day! What do I do! Oh, this is where so many that are gluten intolerant are sooo mistaken. Sorry, but it IS the gluten that is making you loose weight, and more "D" and feeling bad. For you, that angel food cake is like a diet pill and laxative. You WILL start gaining weight once you go GF, I promise you. Everyone does, even we overweight gluten intolerant folks. You are starting to absorb nutrients when you go GF, but not eating GF you are malabsorbing, big time, which is what puts your health in jeopardy....Instead of the angel food cake, get yourself some GF cookies and munch on them, or even GF meringue cookies. Trader Joe's has the meringue cookies, even in cocoa flavor, and they are awesome. Not much in the way of nutrients in both the angel food cake or meringue cookies but at least it satisfies a sweet tooth. Always remember, it is NOT about deprivation, only substitution. Your body, your health and how you feel will thank you for it. And thanks again for all your help! And thank you for posting your results. I hope this helped a little. Kandee




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Hi Abby- -GF eater here new
      #151422 - 02/17/05 05:19 PM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

I'm another one who follows a GF diet. I've been on one for 16 months now. I too had the bloodwork done, twice, and both times it came back strong postives on the IGG and the IGA but negative on the TTg, the one most sensitive for celiac disease. I also had a test for the celiac gene which also came back negative as did the endoscopy. So, I don't think I have celiac.

My first GI doc insisted that I should continue to eat gluten because he said that people can have positive results and that this happens. He believed that my problem was IBS. My second GI doc who received the same blood results told me the complete opposite advice. He told me that I may be Latent Celiac and that I should not be eating gluten! UGH!!! So I was/am very confused as to what I have to do. It would be so great not to have to be on the GF diet. I would love to eat all Heather's breads and I don't know how to adapt them to a GF recipe, although Kandee assures me it's possible.

Anyhow, I bounced all this off of Kandee as well and she believes that I should avoid gluten because two of my tests did come back postive, just as she advised you.

I agree with what Kandee said about gaining weight being on the GF diet. I was very malnourished before going GF. Since going GF, and NOT eating desserts or cookies that are GF safe even, I have gained over 20 pounds on the GF diet. Now while I needed to gain at first, I am worried that it will not stop!!! GF foods tend to be higher in fat because the rice flour needs more fat to bake and taste properly. At least that's what Bette Hageman says (the GF cookbook guru)!

I do like the kinniKinnick bread the best. Kandee is right. I recommend the white type of that brand only though as the brown rice sandwich bread contains whole flax seeds and seeds may cause a problem for you. Whole foods and Wild Oats do not carry this brand (they carry Food for Life GF bread as does Trader Joes and it is much cheaper, but it contains fruit juice concentrate which makes me leery, but Kandee thinks it's still safe). Oh, the white rice brand of Food For Life doesn't contain the juice concentrates. If you want KinniKinnick, which is the best hands down! (the only GF bread that tastes okay when not toasted, Toasting GF bread always makes it better tasting in many people's opinion) you can get it at most special small HFS. I've been to 4 HFS and all of them carry this brand because there is such a high demand for it because it tastes the best. Believe me, I've tried many that tasted like cardboard!

Oh, before I went GF I too was chronic D, going 6 to 7 times a day, popping immodiums, etc. Since going GF, I am battling constipation. Traded one for the other!

If you do decide to eat GF, Wild Oats, Whole Foods, and Trader Joes all have take home guides that lists their GF foods by category. It's easier than reading lists of ingredients, especially in the beginning when you aren't sure if a particular ingredient is gluten. It is goes by many names. For instance, if a product says Natural Flavoring, it could contain gluten You can also do a google search for Brand name GF products that you can buy in a regular grocery store. I know Hellmans mayo is GF, for example.

If your doctor does want to do an endoscopy on you, DO NOT start eating GF until after the endoscopy as this will contaminate the results and may give a false negative. Since you had a negative TTG it sounds like you don't have celiac, but just a gluten intolerance. The endoscopy only confirms Celiac, not gluten intolerance.

Okay, I probably gave you info that you weren't even asking for but please feel free to email me if you want or post again. My email address is in my profile.

I was very confused and frustrated that my test results came back "inconclusive", not all positive and not all negative. It will always keep me wondering if I need to eat GF or if I'm doing all this GF restricting for nothing. Do you feel the same way?

Are you going to eat GF? Do you think you need to because of how your tests came back? I'm anxious to hear your thoughts on this, as your test results were similar to mine, except that mine were both High positive.



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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Thanks Beth.. new
      #151463 - 02/17/05 08:29 PM
Kandee

Reged: 05/22/03
Posts: 3206
Loc: USA, Southern California

Quote:

for jumping in on this one and adding lots of good tips and recommendations. As you can see Abby, we who eat GF AND have IBS have a lot to say about the subject. I'm another one who follows a GF diet. I've been on one for 16 months now. I too had the bloodwork done, twice, and both times it came back strong postives on the IGG and the IGA but negative on the TTg, the one most sensitive for celiac disease. I also had a test for the celiac gene which also came back negative as did the endoscopy. So, I don't think I have celiac.

My first GI doc insisted that I should continue to eat gluten because he said that people can have positive results and that this happens. He believed that my problem was IBS. My second GI doc who received the same blood results told me the complete opposite advice. He told me that I may be Latent Celiac and that I should not be eating gluten! UGH!!! I LOVE this second GI. Obviously he has worked with a lot of Celiacs and knows how dangerous being gluten intolerant can be. So I was/am very confused as to what I have to do. It would be so great not to have to be on the GF diet. I would love to eat all Heather's breads and I don't know how to adapt them to a GF recipe, although Kandee assures me it's possible. You name the recipe, and I'll adapt it for you, OK?

Anyhow, I bounced all this off of Kandee as well and she believes that I should avoid gluten because two of my tests did come back postive, just as she advised you.

I agree with what Kandee said about gaining weight being on the GF diet. I was very malnourished before going GF. Since going GF, and NOT eating desserts or cookies that are GF safe even, I have gained over 20 pounds on the GF diet. Now while I needed to gain at first, I am worried that it will not stop!!! GF foods tend to be higher in fat because the rice flour needs more fat to bake and taste properly. At least that's what Bette Hageman says (the GF cookbook guru)! If that's what she says, I disagree with her on this one. As long as there is SOME fat, to coat the flour granules, you're OK. In most of the recipes you can successfully reduce the amount of fat if it's to high for IBS...and in some cases, adding more Xanthan gum or Acacia will make it as tender as if you added more fat!

I do like the kinniKinnick bread the best. I've got to get some of this stuff, even if I have to mail order it in!!! The GF folks vote for Manna from Anna for the best bread mix. I'm going to try that one too. You do NOT need a bread machine for good GF bread, but a heavy duty stand mixer is advisable. You don't even use dough hooks, or knead the stuff. I learned this the hard way...my first bread machine bread rivaled any brick in the building industry you can name! Kandee is right. I recommend the white type of that brand only though as the brown rice sandwich bread contains whole flax seeds and seeds may cause a problem for you. Thanks...I'll have to remember this too, since I have diverticulosis and should not be eating small seeds unless they are pulverized. Whole foods and Wild Oats do not carry this brand (they carry Food for Life GF bread as does Trader Joes and it is much cheaper, but it contains fruit juice concentrate which makes me leery, but Kandee thinks it's still safe). If you want KinniKinnick, which is the best hands down! (the only GF bread that tastes okay when not toasted, Toasting GF bread always makes it better tasting in many people's opinion) you can get it at most special small HFS. If you don't want it toasted, say for sandwiches, put it in a zip plastic bag and nuk it for a few seconds. It will soften right up. I've been to 4 HFS and all of them carry this brand because there is such a high demand for it because it tastes the best. Believe me, I've tried many that tasted like cardboard! ROTFL...me too!!!

Best to just go to all these HFS and check to see what they've got. For example, I've found out that a Trader Joe's on the east coast carries different items than those on the west coast. Same with Whole foods. Now if we lived in Atlanta, fabulous GF bread would be available from WF. One of the bakers is Celiac and has developed fantastic GF breads and goodies.

Oh, before I went GF I too was chronic D, going 6 to 7 times a day, popping immodiums, etc. Since going GF, I am battling constipation. Traded one for the other!

That may change for the better, but like I've learned with IBS it's hard to predict how you're going to be one day to the next. I'm a "C" and that's NOT totally uncommon for gluten intolerance or even CD, but mine I believe is from being hypothyroid, which BTW, is a common autoimmune disease connected with Celiac, as is Lupus, Diabetes, Arthritis and a whole host of other autoimmune diseases. It's enough to scare anyone who is gluten intolerant to COMPLY with the diet so you don't end up with any of these other ailments.

If you do decide to eat GF, Wild Oats, Whole Foods, and Trader Joes all have take home guides that lists their GF foods by category. It's easier than reading lists of ingredients, especially in the beginning when you aren't sure if a particular ingredient is gluten. It is goes by many names. For instance, if a product says Natural Flavoring, it could contain gluten So true! You can also do a google search for Brand name GF products that you can buy in a regular grocery store. I know Hellmans mayo is GF, for example.

If your doctor does want to do an endoscopy on you, DO NOT start eating GF until after the endoscopy as this will contaminate the results and may give a false negative. Since you had a negative TTG it sounds like you don't have celiac, but just a gluten intolerance. The endoscopy only confirms Celiac, not gluten intolerance.

All great points here Beth, thanks for adding.

Okay, I probably gave you info that you weren't even asking for but please feel free to email me if you want or post again. My email address is in my profile.

I was very confused and frustrated that my test results came back "inconclusive", not all positive and not all negative. It will always keep me wondering if I need to eat GF or if I'm doing all this GF restricting for nothing. You won't ever convince me you're not doing this for a GOOD reason!!! Do you feel the same way?

Are you going to eat GF? Do you think you need to because of how your tests came back? I'm anxious to hear your thoughts on this, as your test results were similar to mine, except that mine were both High positive.

If this old lady could wave a magic wand and let you see what the future would hold for you if you continue eating gluten or not, I would. But I can't, so you will just have to read, and read, and read about the subject and decide for yourself. The more you read, the more I think you will come to see that you are worth it. We eat to live, not the other way around, and isn't living well, even if it means making substitutions, the name of the game?

Kandee







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