Would You Go Back To Gluten?

[reenag]

I am fairly new to this site. My story, in short is like this, I gave up most wheat (but not all, more as a lifestyle choice) about 5 years ago after being sick of fatigue, weight gain etc. It helped, a lot. But then the last year or soon, all those symptoms came back. I am always bloated, stomach pain increasingly, constipated, tired etc, a little weight gain and no weight loss even with increased excersise, less foof input etc.. So, i first gave up lactose, then soy, etc. etc. Finally, I decided to cut out all gluten. Even though I wasn't eating wheat regulatly at this time, I was still eating it and other forms of gluten in small forms. So now it has been 2 1/2 months and I am off all glluten completely, and I am much better. I'm not 100%, but much better. My celiac test panels that I took several years ago were taken when I was already off of wheat for the most part, and were negative. I did see a GI doctor amount 3 months ago who thought I might have gluten intolerance or celiac, but because I was basically off gluten, didn't see the point in taking the blood test.s So I'm curious what others have done in this situation? Would you suggest I go back on gluten to get my testing? When I have gluten now, the next two days I am in a lot of pain and have a lot of bloating. I'm almost scared to eat it reguarly especially as I am MUCH more sensitive to it now than I was before i cut it out completely. I'm just looking for advise from folks- would they go back to gluten?

[waterlily-]

Well since it makes you bloat up and in pain, I wouldn't go back. Not for tests. If you're better off gluten then just stay that way is best, in my opinion.

I too am getting more sensitive to it the more gluten I cut out of my diet. A couple of months ago I could eat a slice of bread and not feel very sick but now I can't eat it without feeling like I'm going to puke for the next two/three hours.

Would I go back to gluten? Oh yes. There are so many foods that I haven't found a good substitute for or none at all. Which is really hard for me as I love food. gluten-free is definitely healthier yes, but for convenience and less money spent, I would go back to gluten if I could.

[love2travel]

I did the gluten challenge for three months and I had a blast because I did not feel sick with gluten. At all. Zero. I was diagnosed with celiac four months ago. Sometimes I find the thought of being strictly gluten free for the rest of my life daunting because I do not have much incentive to be off (symptom wise - but of course that may change - I may discover celiac-related symptoms in the future I am yet unaware of). And I LOVE gluten-filled food. BUT I do remember what my poor little flat villi look like! And I am as dilligent as one can get.

I would gather most would not do the challenge because they get so incredibly ill and feel it is not worth all the agony. And I certainly do not blame them one little bit. If I got that sick I wouldn't do it, either.

If I were given a choice of going back on gluten if I could (without any damage to me at all) I would leap at it. For example, if the vaccine currently being researched does work long term, count on me to be the first in the line to get it. Not just because I love food but for the convenience (i.e. outings, travel, restaurants, food fairs). I am a wonderful cook and baker and have made fabulous gluten-free things (and of course lots of intrinsically gluten-free things) but I do miss sublime breads, pizza, fresh pasta, croissants, bagels, soft pretzels and so on. Sure, there are some ok substitutes but I cannot settle for ok. When I have had the best (my husband and I used to travel all over Europe for food experiences - still do but in a different way, of course) it is not possible to eat second best. I'm a wee bit picky, I know.

[GlutenFreeManna]

Well, since I was in a similar situation about as year in a half ago I can answer no, I did not go back to gluten for testing. It makes me too sick to do so. I am diagnosed via dietary response. You have a pretty good dr there to recognise that the tests will be negative if he tests you now. Many drs would be testing you anyway and then when it came up negative insist you could not have celiac. They would be wrong of course. Since you already have your body telling you clearly what you need to do, you should ask yourself what having a positive test result would do for you? Or worse what if you went through three months of agony while consuming gluten and the tests were STILL negative? About 30% of celiacs test negative with the current blood tests. Why set yourself back health-wise just to have a label? If it doesn't make you comfortable to call yourself celiac without that piece of paper you can always say you have non-celiac gluten intolerance. However, whatever label you use the same dietary prescription applies--a 100% gluten free diet.

Welcome to the board, BTW!

[ravenwoodglass]

Your GI doctor was right that since you have been gluten free or gluten light the tests for celiac at that point would be useless. Even on a full gluten diet there is a 20 to 30 percent chance of a false negative. The choice on whether you want to go back on gluten for 2 to 3 months for testing is totally up to you. Your body seems to be clearly telling you that it wants you to be gluten free.

It is up to you whether you want an official diagnosis and whether you can stand the illness that being back on a diet that is filled with gluten is going to be worth it.

[love2travel]

I forgot to mention that a leading Canadian celiac expert last week said at a lecture that only 39% of all biopsies are correctly done in Canada. Not sure about the US. She said those who are getting biopsies must get at least 8-11 of them for greater accuracy. Not to dissuade you if it is what you want/need to do - just to let you know to request numerous biopsies if you do proceed.

If you cannot stand the thought of eating LOTS of gluten for a long period of time I believe you have the answer.

[reenag]

  On 6/6/2011 at 5:47 PM, love2travel said:

I forgot to mention that a leading Canadian celiac expert last week said at a lecture that only 39% of all biopsies are correctly done in Canada. Not sure about the US. She said those who are getting biopsies must get at least 8-11 of them for greater accuracy. Not to dissuade you if it is what you want/need to do - just to let you know to request numerous biopsies if you do proceed.

If you cannot stand the thought of eating LOTS of gluten for a long period of time I believe you have the answer.

Thanks everyone for your responses. it is all very reassuring. Based on all the information I have read on these forums, I think I'll just stay on the course. One follow-up question- when people reintroduce gluten for the "gluten challange", do they jump right into it with sandwhiches/pasta etc.? I probably should at least do that once, to see what happens. So far, all the gluten I have had since I went on a strict elimination has been very very little by accident. (like a little soy sauce etc.)

[love2travel]

  On 6/6/2011 at 6:17 PM, reenag said:

Thanks everyone for your responses. it is all very reassuring. Based on all the information I have read on these forums, I think I'll just stay on the course. One follow-up question- when people reintroduce gluten for the "gluten challange", do they jump right into it with sandwhiches/pasta etc.? I probably should at least do that once, to see what happens. So far, all the gluten I have had since I went on a strict elimination has been very very little by accident. (like a little soy sauce etc.)

When I did my challenge my dietitian told me to introduce 1 piece of bread for three days and introduce another for three more days until I worked up to 4 a day. She said then I could eat all the gluten I wanted which is what I did. I had absolutely no trouble with it. But then I am probably in the minority.

[GlutenFreeManna]

  On 6/6/2011 at 6:17 PM, reenag said:

Thanks everyone for your responses. it is all very reassuring. Based on all the information I have read on these forums, I think I'll just stay on the course. One follow-up question- when people reintroduce gluten for the "gluten challange", do they jump right into it with sandwhiches/pasta etc.? I probably should at least do that once, to see what happens. So far, all the gluten I have had since I went on a strict elimination has been very very little by accident. (like a little soy sauce etc.)

In order to do a gluten challenge for testing purposes you would need to eat the equivalent of 3-4 slices of bread per day for about 3 months. For people testing it via dietary response I have heard that the standard advice was to eat gluten every day for a week or until you start to have symptoms again--whichever comes first. The reason for this is that some people have very delayed reactions and some people can "get away with" it once or twice symptom wise (but they are still doing damage if they have problem with gluten). So if you do try some bread and have no adverse effects right away that does not mean you are automatically in the clear. Keep eating it until the symptoms return. That is of course if you are determined to try it out. I don't advise anyone that reacts to very small amounts to try a larger amount just to be sure, but I can totally understand the need to have it settled in your mind before making a lifetime commitment to be strictly gluten-free. BTDT.