# Wheat



## bonniei (Jan 25, 2001)

edited to add- this is the same topic as "It is final I am giving up wheat for a month". I just change it daily for fun. I am giving up for wheat for a month- in addition to fructose and lactose. flux, don't ask me what I am going to eat. I have been reading old threads and if anyone has been following what I wrote this morning, you will know i have been switching back and forth. Every time I read a asomething on the BB I get confused. I h ave decided to follow my instincts And give up wheat. Anyone any comments? I would really appreciate them. I have to go now .I- have filled the BB with enough of my nonsense


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## echris (Jul 19, 2000)

bonniei:There are two great websites if you are really going to try to follow a gluten free diet for at least one month: http://www.gluten.net/welcome.asp is sponsored by the University of Washington in Seattle. and, one of the delphi forums:forums.delphiforums.com/celiac/startYou may have to mickey mouse around a little to get on the delphi forum but it has a lot of very helpful people who have celiac disease.And remember, once you get on a gluten free diet, any diagnostic tests you have for Celiac disease, whether it's blood work or a biopsy, will not be accurate.While people vary in terms of how long they have to go gluten free (I had to go gluten free for about 8 weeks before my 26 year history of chronic D went away), it will take a while with almost everyone.Good luck, bonnieiechris


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## mrygrl (Jun 26, 2002)

I used spelt bread as a substitute when I had bread cravings French Meadows plain spelt is the least troublesome for me.(low sugar/no additives) but there are many others just as good.Good luck!Carol


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## bonniei (Jan 25, 2001)

Thanks for the tips echris and mrygrl. It looks like I'll have to do some planning


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## bonniei (Jan 25, 2001)

Managed to get hold of the internet. I am such an addict.







Anyway in the time that has passed, it gave me time to think about what you said, echris. And I thought I was being so senseless giving up wheat especially when I can't get gluten sensitivity tested if I gave that up. So I can't give wheat up . I was being additionally foolish when I know that wheat provides such good fibre. If there is one food I love it is fibre







lol


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## Mike NoLomotil (Jun 6, 2000)

I think it is a good idea to try. Wheat is wayyy overconsumed in our society, and one of the more frequent substances to come up test positive. Besides it will help you use it in a broad rotation with other grains when you do resume, if you do.Go for it.MNL


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## bonniei (Jan 25, 2001)

Oh Mike! You don't get it! Wheat is such a staple of my life much like say you have become, lol. Imagine if I came to this forum and you weren't here responding to my posts.  What use would that be Get it?! I think my digestive system would react to the lack of fiber much the same way. Unless maybe you can give me other options for fiber( which also is incidentally good for mental health.)


> quote:Besides it will help you use it in a broad rotation with other grains when you do resume, if you do.


Come again?


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## echris (Jul 19, 2000)

bonniei:I bet that I eat way more fiber now than when I was eating wheat. In fact, fruits and veggies are probably the best source of fiber. Now, do I like that fact that I feel much, much better since I stopped eating wheat? Heck no! I liked my pasties, pies, etc. But almost all the grains are high on my "no, no" list.When you get back from overseas, I know that we can come up with some websites if you need suggestions about fiber. echris


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## Jan LEAP RD (May 19, 2002)

Hi Bonniei,Just a few comments from this dietitian. As Echris said, IF you are gluten intolerant, then a wheat free diet may not help much. And, tests won't be accurate. Have you been tested for celiac disease yet? With IBS, it's a good place to start.Wheat/gluten is NOT easy to give up, but maybe it would help to know that millions of people worldwide are gluten free. (In Europe, they even label products that are gluten free, routinely.)It may help to think of "what's left" rather than "what I can't have"!!







And, even better is to think of "what's left" and "What I choose not to eat so I can feel better!!!"







If you decide to go wheat/gluten free, there are many books and websites with recipes, menu plans and such. So, you can still have bread, pizza, pasta and such. . . you just get/make them with other grains.As to fiber, there's rice bran, unpearled barley, spelt (this contains gluten though), and many more high fiber grains. Then, there's fruit, veggies, nuts and seeds for good fiber. And, finally, wheat bran (the fiber part) is a real culprit for a lot of IBSers.Maybe it's time to be tested rather than just trial and error. Read up on celiac disease at www.celiac.org


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## Julia37 (May 9, 2001)

bonniei,I think you should trust your instincts. Mine have brought me this far.







An elimination diet can't hurt as long as you have a plan. You can use a lot of other grains to substitute. There are gluten-free mixes for breads made with rice or quinoa. Also you could try making things with buckwheat. (it's not related to wheat in spite of it's name).You could eat oatmeal or amaranth cereal or corn flakes, you'll have to get them at a health food store to avoid the added sugar.There's a mail-order company that sells gluten-free foods, www.missrobens.com


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## Mike NoLomotil (Jun 6, 2000)

Bonnie:Every time I try to shorten my responses the message always gets lost, hence my chronic verbosity.Short again, "loss of oral tolerance" to any food (not allergy or celiac disease) is an ACQUIRED condition.Doctors who study this, and what we test for, have seen that one of the most common correlations between loss of oral tolerance and a specific foosd that shows cell mediated non-allergic reactions is constant consumption.In the U.K. for example, where the people eat a lot of beans, a high percentage of cases shows loss of oral tolerance for the food group. There are several mechanisms for this which are for academic discussion...later.In the USA population where wheat is consumed in high amounts and high frequency, it shows up often at the tiop of the list of things that people have lost oral tolerance to.Again, the DEVELOPMENT of abnormall reactions of the circulating immunocytes in the presence of a food or chemical which is very different from allergy, celiac disease, anmd pseudoallergy.You have to think of them all separately.So what was conveying is that this is one way to see if you have suffered loss of oral toelrance to wheat. Go off it for a period of time and then oral challenge.if you get a reation THEN you have to see which one or more of the possible wheat-reactions it might be. If you get no symptoms you be OK so far, but then what I menat to say is that when you begin eating it again you should rotate it with other grains. That is don't use it exclsuively but substitute other grains.As the other folks then reinforced, during the wheat avoidance is a good time to learn to eat other grains...experiment....so that when you reurn to wheat and if you tolerate it you will have already developed alternatives to rotate it with.make more sense now?Oh also: ____________________________________"I think my digestive system would react to the lack of fiber much the same way" ___________________________________Your system does not need any fiber from wheat, unless of course it is the only source of fiber you have, which if I was your dietician it would worry me immensely.I think the others mentioned enough about other grains, and I want to just reinforce my persoanl bias for fiber gained from the free ingestion of whole fruits...pectin be verrrry verrry good for the bod'. Do more of it







Gotta go time upMNL


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## bonniei (Jan 25, 2001)

Thanks for all the advise about fiber and the websites. I think I will test for gluten sensitivity and celiac disease(I am still confused about whether they are the same because I read this thread rather hurriedly) But in 5 days I will be back in the States and that is one of the first things I will do. I am useless at elimination diets- that is even in being scientific about whether I have symptoms or not- and if there is a test I'd rather do that first than give up wheat right now. Mike regarding your statement that wheat is way over consumed in this society I usually have 2-4 slices of bread a day - other than that I don't have wheat . but I agree with you that generally most people consume too much wheat in the form of baked goods and sweets.


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## echris (Jul 19, 2000)

bonniei:Gluten sensitivity or gluten intolerance are different from Celiac Disease (CD). Patients with CD have a clearly documented change in the villie of their small intestine. During a biopsy, the GI doc takes numerous samples of the lining of the small intestine. When viewed under a microscope, it is obvious to the trained eye that the patient either has or does not have CD. If CD, the patient must really go the rest of their life without eating any gluten. In fact, some patients are so reactive to gluten that it is just like the reaction that some people have to a bee sting or to eating peanuts. Although the intestinal lining can heal completely, the patient can never safety ingest any glutens. There's also blood work for CD but it is not as definitive as the biopsy.With gluten sensitivity, there is no definitive test for it, no changes in blood tests or on a biopsy so it really has to be done using an elimination diet. And, unfortunately for us LEAPERS, the MRT test will not pick up either CD or gluten intolerance. On my MRT, wheat, oats, rye and barley were all in the green range. However, stopping the glutens was the what stopped my D. I had to be off of it for 2 months, though, before I saw the full improvement.Hope that helps. There is a lot of good information on the CD bulletin boards.Have a safe trip home to good ole USA.echris


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## bonniei (Jan 25, 2001)

Thanks so much for all your input mIke, echris and Jan. I really appreciate it.I'll do the easiest thing first- get tested for CD. So you all say there is no test for gluten sensitivity. Not even LEAP? and then the other parts of wheat which I may be sensitive to, i need to test for by elimination diet or LEAP, right? I think i will try rice bran and do the elimination diet, and hope it doesn't cauise constipation. Dear Mike, the pectin which you are partial to as a source of fiber and think is so good for the bod'- I am very tempted by but alas, I am fructose intolerant( as in fructose malabsorption). So you see my dilemna. So here is to hoping rice bran does it for me!


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## Mike NoLomotil (Jun 6, 2000)

"I usually have 2-4 slices of bread a day - "Good. You are among the minority of the overall population of westerners...among those living in the east I have not a clue







"the pectin which you are partial to as a source of fiber and think is so good for the bod'- I am very tempted by but alas, I am fructose intolerant( as in fructose malabsorption). So you see my dilemna. "yes indeed that does complicate things does it not? I do not have among my boxes of samples any bottles of pectin-based fiber supplements to do a quick check on...maybe Jan has the ingredients list handy as I cannot remember which or what or where you can get some fructose-free pectin supplement. Old brain foggy memory...MNL


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## bonniei (Jan 25, 2001)

Oh, that would be wonderful! fructose free pectin supplement. If you can somehow remember where I might be able to find it, I would be grateful


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## Mike NoLomotil (Jun 6, 2000)

Click on Jan Patenaudes profile and email her...I'll bet she remembers which one is which or can find it quick.







MNL


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## bonniei (Jan 25, 2001)

I have PM'ed Jan, Thanks for the idea Mike.


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## Julia37 (May 9, 2001)

bonniei, could you post it here when you get it?Thanks


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## mrygrl (Jun 26, 2002)

I just had the celiac blood test but now wonder if my only eating one piece of bread per day for so long will result in an inaccurate result? How much gluten must be in the diet for an accurate test? Echris, may I ask what your red and yellows were?You certainly have good willpower to give up what you have already. The web-sites are helpful. Thanks.


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## echris (Jul 19, 2000)

Mrygrl:My reds were: pecan, cow's milk, hopsYellows: lettuce, pumpkin, yellow squash, corn, kamut, acetaminophen, avacado, orange, lamb, crab, parsley, lentil, walnut, cottage cheese, yogurt, cola, teaMost of these were foods that I have not been eating so they're not a big loss. Haven't had any of the reds in some time. I used to eat a lot of corn because I cannot eat glutens (wheat, oats, barley, rye) or rice. I bought some millet but have not eaten any yet. And, yes, I think you have to develop self-control over what you eat after 25+ years of chronic D. Can't believe that it took that long to identify gluten as the offending agent.echris


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## bonniei (Jan 25, 2001)

Jan replied thus"Bonnie:Well, I think I found some good info from my astute RD colleagues and awebsearch.







One writes: "Pectin chemically hydrolyzes to galactose and arabinose so theanswer is yes.However, if it might be mixed with inulin as in FOS then the answer is no, asinulin is fructose."That said, I did some searches on google.com. I searched for pectin +calories. Iwas able to find some citrus pectins that say they have no calories. If nocalories, then no absorbable fructose.I think Sure-Jell, sold in the grocery store is also pectin, and a sugar freeone's available. Thus, it should also be fructose free"Thanks jan for your research. I will let you know how it works outSo that's great. I will do the Celiac test this week as well as take in VSL3 and see if that solves the problems otherwise I am leaning towards giving up wheat.


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## echris (Jul 19, 2000)

bonniei:If you're having the Celiac test this week eat lots of wheat and wheat products now. Probably, within reason, the more the better.echris


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## bonniei (Jan 25, 2001)

Gosh it is the end of the week already, isn't it? My appointment will have to be next week. My gas has disappeared with my normal diet. However it is very restricted. So it would be good to sort out on this wheat things once and for all. Thanks for the advice echris


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## bonniei (Jan 25, 2001)

It is going to take a while for me to get an appointment. Thank s for all the advise everyone


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## bonniei (Jan 25, 2001)

this thread may not be updated for a while. But everyone who contributed do look out for it as I am sure I will need more advise later


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## bonniei (Jan 25, 2001)

dp


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## bonniei (Jan 25, 2001)

Oh sorry to post again but my doctor has discovered that I have already dhad biopsies of my duodenum done and celiac didn't show up there. So he says there is no need to get the Celiac test done. Does anyone know if he is right?


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## echris (Jul 19, 2000)

bonniei:There's a lot of discussion about the biopsies. Some recommend only having the biopsies sent to one or two places in the country for the actual analysis. Others recommend sending the biopsy specimens for a second opinion at one of the labs that do a lot of Celiac testing.Apparently the results depend upon whether or not enough specimens were taken and taken from the right places. I guess that you can have Celiac but it does not effect every square inch of the small intestine.Also, a recent article in the New England Journal of Medicine stated that 20% of the new cases of Celiac Disease is diagnosed in people over 60 years of age. I don't think that anyone knows if these cases would have had negative biopsies earlier and positive later. There isn't any agreement about how often to repeat the biopsy.Also, there are many people who have gluten intolerance but not Celiac. That means that you do not test positive for Celiac but you respond well to the gluten free diet. To date, I don't think that there is a single test, anywhere, for gluten intolerance. Just the elimination diet which is difficult to do. The way my GI doc explained it to me, it's like bee stings. Very few people will die from a bee sting, but many will react to it, a various levels. Similar to gluten.Having said that, I feel better now, on the gluten free diet, than I have in many, many years. I'm also eating better than I have in many years. Lots of fruits and veggies. Virtually no fast foods and almost no processed foods.sorry that I cannot be more positive.The bottom line is that, if your symptoms improve greatly on a gluten free diet, you have to decide if you want to live like that or get your symptoms back. The diet is clearly, in my experience, much healthier than eating all the fast foods and processed foods.echris


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## bonniei (Jan 25, 2001)

Boy, it sure looks like I'll have to make a lot of effort with the biopsies. Then are the blood tests accurate? Any idea if Iowa City has labs good for biopsiesYou see you can eat a lot of fruits and beggies. I was on a rice and veggie diet when I was in India and the gas was unbelievable partly because I was constipated. I can't tolerate veggies it seems. I feel so deprived. I don't eat so many foods.I am going to go right now and buy some Sure Jell and see how it works


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## echris (Jul 19, 2000)

bonniei:you really need to check out the celiac bulletin board. There's so much info on the tests.And, my understanding is that the blood tests are accurate but the biopsy is supposed to be the best test available.echris


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## bonniei (Jan 25, 2001)

Yes I will do that but I think I will settle for the duodenal biopsy for now. Thanks so much for taking the time to reply echris







I went to the grocery store looking for Sure-Jell and in the jello aisle I found only Jell-o. Don't know if that is the aisle I should be looking in. Anyone know? Any help will be greatly appreciated


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## Jan LEAP RD (May 19, 2002)

I think the pectin would be in the baking aisle, somewhere close to Knox Jello, and/or other cooking ingredients, since it's basically an 'ingredient' used for making jams and jellies and such.Good luck.


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## Mike NoLomotil (Jun 6, 2000)

Go away three days miss so much....Comment on Echris discussions on biopsies.These are important points and are valid. This can even happen with certain pathognes of the gut which can become chjronic low level infectious processes which are elusive. Sometimes a stool culture is done, pronounced clean, the differential diagnsis proceeds and in the end nothing can be found and the patient is left with







Soetime serial cultures are needed for some pathogens as the "counts" in the stool will fluctuate and if you check just one data point you get just that one.Ditto for the biosy discussions and the "multiple labs" suggestions.Some things are not very "cut and dried" diagnosticallyMNL


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## bonniei (Jan 25, 2001)

I get exhausted from just reading about the different options for biopsy. Like reading echris's options was not exhausting enough , mike you had to add to the cooking pot. I can't deal with it , lol. It is so complicated.







Me-I will settle for duodenal biopsy for now. Even a gluten free diet sounds better. While I am on the topic I went off wheat and couldn't find sure jell and I am paying for it now. Jan, do you know where I can get Sure- Jell. I think I better PM her now


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## mrysgrl (May 9, 2002)

Does anyone know the difference among the following gluten tests?1.Tissue Transglutaminase antibody IGA2. Antigliadin Antibody Panel a)Gliadin IGA AB b)Gliadin IGG AB (positive)I was suprised to see a positive (weak/moderate positive) as I have so severely limited my gluten intake for over a year now ( just one piece of toast per day. Nothing else).Thanks.


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## bonniei (Jan 25, 2001)

echris and mike may know about it but it might be worthwhile to check out the Celiac forun or BB that echris was talking about


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## Mike NoLomotil (Jun 6, 2000)

". It is so complicated"yeah tell me about







MRYSGRL...yes I could answer your question but its after 9 am and I am just tapped-out on time. I will see if I have a link somewhere to refer you to something you could read which would answer it or me...if not I will try to come back tomorrow and sopend a few minutes. So sorry so preoccupied these days.MNL


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## Julia37 (May 9, 2001)

mrysgrl,If you are gluten sensitive and eat one piece of toast a day, you're keeping your immune system active by stimulating it each day with the gluten in the toast, even though it's a small amount. As Mike says you're keeping your system upregulated.The approach in Dr. Brostoff's book is to avoid the sensitive food for a long time, say a year, and then eat it only about once a week or less. If you haven't seen the book it's "Food Allergies and Food Intolerance: A Complete Guide to Their Identification and Treatment". Sorry I don't have the link handy.There are substitutes for wheat toast - you could get a bread machine and make bread with rice flour, quinoa, or buckwheat. If you do, it would probably be best to rotate different flours instead of using the same one all the time. This company sells gluten free mixes and foods www.missrobens.comI had to give up chocolate because I'm allergic to the soy product lecithin, and sensitive to the dairy and sugar. I've found I can tolerate 2 chocolates at a time about 2 months apart - except when airborn allergens are high. It may sound depriving, but you wouldn't believe how much I enjoy those 2 chocolates!







I usually don't have to buy them, either - gourmet chocolates (or one thin mint cookie) just have a way of turning up.


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## mrysgrl (May 9, 2002)

Thank you. :







Carol


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## Mike NoLomotil (Jun 6, 2000)

MRYSGIRL:I always, well usually, keep my promises...just nowadays in shorthand.This should explain most of what you wanted to know and more: http://cpmcnet.columbia.edu/dept/gi/celiac.html MNL


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## bonniei (Jan 25, 2001)

Jan said to check out this website for Sure Jell info and to contact their customer service ][url="http://www.kraftapps.com/contact_us/faqs3.asp?referrer_id=111&cat_id1=103&cat_id2=106&cat_id3=66&referrer=KRAFTFOODS"]http://www.kraftapps.com/contact_us/faqs3....rrer=KRAFTFOODS][/URL]


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## mrysgrl (May 9, 2002)

Thanks MikeNL and bonniei.


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## bonniei (Jan 25, 2001)

You are welcome mrysgrl.Sure-Jell by the way is a canning product.


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## bonniei (Jan 25, 2001)

I gave up wheat for a couple of days because of this thread and I ended up with severe constipation.Must be bad karma. It took me so long to find Sure-Jell. And I have it now and I don't know how to take it , with what to take it, whether I am supposed to make some kind of a jello out of it or what. So everything came to a screeching halt.I better PM Jan again


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## mrysgrl (May 9, 2002)

Hi,Are you drinking 8-10 glasses of water (and no coffee, soda, etc.)? Psyllium is a big help with constipation for me. Maybe people who have gone through LEAP already can post about the symptoms they went through during the initial withdrawal. It would help those just starting, (includes me) hang in there with it. I haven't had wheat or caffiene (tea) for 7 days now and have become a vicious, mean person. You might want to stick with it and just get the withdrawal part over and done with?Good luck, don't give up!Carol


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## Mike NoLomotil (Jun 6, 2000)

Comment: _____________________________________"...have become a vicious, mean person..." _____________________________________Naw its not that we become these weird people, what we ARE is simply revealed! Like the Mighty Oz, our curtain gets pulled back for awhile.Now THAT's a scary thought eh?














just kidding...elimination of "psychoactive chemicals" both in some subatnces or the psychoactive chemicals they provoke the body to produce can have terribly uncomfortable effects for ourselves and those around us.BUT it is transient, at least, as the human organism is highly adaptive. Just takes little time.







MNL


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## mrysgrl (May 9, 2002)

Thanks!There is probably more than a little truth in your first comment







I'll try to hang in there a few more days. My digestive system is making embarrasing noises but there is a decrease in the gas. I never realized how many things contain gluten. How long does the initial withdrawal phase usually take roughly?Thanks again,Carol


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## bonniei (Jan 25, 2001)

mrysgrl- you are right about the water. I was so involved with the internet, I didn't even have water in those days. I am taking care of the constipation problem right now.


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## Mike NoLomotil (Jun 6, 2000)

...GIRL: _______________________________________"How long does the initial withdrawal phase usually take roughly?" _______________________________________It's all over the calendar, but typicallt about a week. Some people very short some people longer. Seems to vary with the severity of the initial sympotms combined with the frequency of exposure to offnding foods, then nature of the reactions involved and comorbidities, and the nature of the foods eaten which are offending (ie: combine a person who is highly reactive to, and reoutinely consuming, foods which contain exorphins or elicit endorphin or serotonin response, and who also suffers the comorbidity of dysmenorrhea and you have someone who is probably set up for a rougher and longer transition than is typical....make sense?)MNL


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## mrysgrl (May 9, 2002)

Thanks,I was really just kidding about the emotional effects! I seem to be going back to increasing gas/mucous and just wonder if that is part of the process - it gets worse before it gets better. No big deal. Only 10 days. Thanks againP.S. Good luck Bonnie!


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## mohrs6 (Aug 26, 2002)

I know it's late to be jumping in on this topic. But if you are still looking for Sure-Jell, try the Canning Isle! And if you can't find it in the city, head to a smaller store in a small town.


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## bonniei (Jan 25, 2001)

Thanks mrysgrl, I missed your PS. mohrs you are right it is available in the canning section.


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## bonniei (Jan 25, 2001)

Jan are you reading this thread?


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## KLG (Jul 8, 2002)

Just noticed Luna Bars say they are dairy and wheat free. Yayyyyyy!!!!! But they do contain soy.


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