Gastro Put Me On Gluten Challenge

[Wandering Hermit]

Well, my endoscopy came back normal for the biopsy, which proves nothing. I am going in for a colonoscopy on Thursday.

The gastro said to go back on gluten for at least 3 months and see what happens. I am partly excited and partly unhappy about this. It may at least mean 3 months of getting to 'say farewell' to certain foods.

Boy, they really screwed up the way they went about diagnosing this. I still think there is a good chance I have celiac disease, but I really should have had the biopsy initially instead of after 6 months gluten-free. My blood work was inconclusive initally, so my GP should have sent me straight to the gastro, which he did not. So we will see what happens. Until then I am the poster child for how not to go about getting a celiac disease diagnosis!

[Claire]

Well, my endoscopy came back normal for the biopsy, which proves nothing. I am going  in for a colonoscopy on Thursday.

The gastro said to go back on gluten for at least 3 months and see what happens. I am partly excited and partly unhappy about this. It may at least mean 3 months of getting to 'say farewell' to certain foods.

Boy, they really screwed up the way they went about diagnosing this. I still think there is a good chance I have celiac disease, but I really should have had the biopsy initially instead of after 6 months gluten-free. My blood work was inconclusive initally, so my GP should have sent me straight to the gastro, which he did not. So we will see what happens. Until then I am the poster child for how not to go about getting a celiac disease diagnosis!

<{POST_SNAPBACK}>

I wish these messages came with sound- then you could hear how loud I am saying - a gluten challenge is a bad idea. You are probably on the right track, already helping yourself and now you will be undoing any good you have done. If you do have celiac disease you are doing harm with every grain of gluten you ingest. Enterolab is a way you could go - no need for the gluten challenge.

Claire

[Guest nini]

I agree with Claire, at this stage in the game since you have already shown improvements on the diet, that alone should be your answer. Why on earth would you want to damage your insides any further just to satisfy some inept Dr? I am sorry, but I totally disagree with that methodology.

Considering that my daughter was dx by dietary response alone (positive improvement and complete return to health after going gluten-free) I have to question the logic of reintroducing poison into your body just to confirm that it makes you ill.

[nettiebeads]

Why don't you ask your gastro to introduce himself to a poison that would make him sicker than a dog for 3 months and see how he likes it????

I agree with the Claire and Nini. My good ole gp just did the diet thing and I'm satisfied. You know your body better than anyone else can.

[Wandering Hermit]

Thanks for the responses.

I guess I would tend to agree with you guys, except that there are confounding factors in my case that make me think the challenge is a good idea:

1. My tTG has always been normal, even on gluten. Only IgG antigliadin was high initially, but IgA was not. Also I am not IgA deficient, that was checked. From numerous sites, I have read that AG IgG is least specific for celiac disease and can be elevated due to other GI problems.

2. My loose stools have not changed at all in 6 months gluten-free.

3. The D has disappeared, HOWEVER, on day 2 of my gluten-free diet I discovered I was lactose intolerant (because a big glass of milk sent me to the bathroom), and I cut it out then and there. So is my lack of D due to the gluten-free diet, or the lactose-free diet? 3 months later I tried drinking another glass of milk and it made me sick again.

4. I went back in my food jounal I kept for 5 months before going gluten-free and found a high correlation between my D and crampy days and my milk intake.

So I really have no indication that the gluten-free diet has made me feel better, and frankly, I am suspicious of the diagnosis by a GP who doesn't know SQUAT about celiac disease anyway. My lethargy and body aches have not changed one bit since going gluten-free. If I end up poisoning myself for 3 months in order to get this definitively nailed down, so be it - I cannot mentally handle the lifestyle of this diet without knowing with 100% certainty if I have the disease. If I have it, fine, I already know what it takes to be gluten-free, and I can do it, but I need to know conclusively. And not one single Gastroenterologist could look at all my sysmptoms and test results and DEFINITIVELY say "Yes, you have celiac disease with 99.9% certainty" Or even 80% certainty. My case is totally inconclusive, and I am tired of not knowing what is wrong with me.

As for Enterolab testing, I'd have to pay for that myself, and I cannot afford it. Also from everything I have read I am a little doubtful about the validity of their testing. This is just my personal opinion. I have never read anything about anyone getting negative results back from them. My gut feeling is that they will tell me I might have celiac disease whether I really have it or not. Just my personal opinion - but every one of their 'testimonials' on their site is basically a sales pitch for the wonders of a gluten-free diet. And the gluten-free diet certainly is a miracle worker, but only if you have celiac disease. I still have problems that have not been diagnosed yet. Hence my upcoming colonoscopy.

[floridanative]

Hi Wandering Hermit - could you please elaborate on the comment that you can't mentally handle the lifestyle of the diet without proof you have celiac disease? I'm not on the diet yet but I'm really worried that I'll have to start it soon and I'm just trying to prepare myself mentally to do it. What about it makes it hard for you personally if you don't mind my asking? I'm trying to foresee the obstacles I'll have to overcome before I actually hit them. Thanks in advance for any info you are willing to share.

Tiffany M.

[Wandering Hermit]

Hi Wandering Hermit - could you please elaborate on the comment that you can't mentally handle the lifestyle of the diet without proof you have celiac disease? I'm not on the diet yet but I'm really worried that I'll have to start it soon and I'm just trying to prepare myself mentally to do it. What about it makes it hard for you personally if you don't mind my asking? I'm trying to foresee the obstacles I'll have to overcome before I actually hit them. Thanks in advance for any info you are willing to share.

Tiffany M.

<{POST_SNAPBACK}>

Tiffany:

1. The strain it puts on my family. Examples:

Wife: The boys really want my homemade pancakes. Do you mind if I buy some flour?

Me: Don't you dare open a bag of flour in my kitchen and get that crap everywhere. What are you trying to do, shorten my lifespan?

Boys: Can we all go out for pizza to celebrate (something)?

Me: Sorry son, I am not going to take you on the bus-tour of baseball stadiums like we planned, because I won't be able to control where and what I will be eating.

Me: Who used my syrup? That is my syrup. What did you touch the bottle against?

Wife: I just washed the dishes.

Me: This glass doesn't look clean enough. What is that little mark on the bottom? What if it has gluten? I'm not drinking out of that.

2. The strain of not knowing what is wrong. If I don't have celiac disease, this diet is not doing me any good, and I may have some other issue that has not been addressed. I'm not content to spend another 6 months expecting a miracle form the gluten-free diet when the diagnosis was totally sketchy from the start.

3. The constant avoidance of lunch with coworkers, social events, etc., and yet not knowing if my avoidance of these things is even needed, because my diagnosis of celiac disease is not firm at all. It is a lot easier to make a sacrifice when it has been demonstrated clearly that the sacrifice is necessary. I will have no problems about being gluten-free if indeed I need to be. I can do it, I can handle it. But I refuse to make a sacrifice unless I am certain I have to do it.

[VydorScope]

Hey Hermit!

I am basicly doing the same thing as you... just my doc does not know it yet. I eat a bowl of Shredded Wheat and a few pieces of whole wheat bread everyday... for alot of the simular reasons. I do not have any problems with milk that I know of. But I do have pages of symptons that COULD be celiac disease...

You have to do what you have to do, and if it hurts some times thats the only way to get better. The gluten-free life is only hard at first... it gets eaiser the more used to it you get. I would hat to think anyone went gluten-free thinking it would sovle thier problems... then later find out they are worse off becuase they did not solve the problem after all. If you have a clear DX of celiac disease, then the gluten challange is stupid. I agree. BUT when you dont.. whne your on that fenve of maybe.. I think its important to find out.

Personally I am willing to risk gluten more then I am the alternitive... not knowing and getting worse while everyone tells me it "takes time to heal". If its celiac disease , and clearly celiac disease then I can go gluten-free and know it takes time and be happy with that. IF not, then I am risking doing more damage by ingnoring it.

Thats just how I see it, and I think you are right to do the same based on your posts in this thread.

[floridanative]

Thanks for elaborating WH. I understand that does indeed seem stressful and if you don't really need to be on the diet, you'd be better off not on it. My husband is the cook and he's willing to go gluten-free at home as he thinks it will be too hard to do otherwise. We don't have kids which makes it easier as well.

Good luck to you finding out what is wrong. I agree with your position. I'm not willing to go on the diet unless I know I have celiac disease. I'm willing to try the diet if the doc suggests it (if biopsy isinconclusive) but my anemia doesn't eventually go away with the diet then celiac disease isn't my problem. If I do have it, then I'll figure out a way to make the diet work in my life as best as possible.

Tiffany M.

[Rachel--24]

And the gluten-free diet certainly is a miracle worker, but only if you have celiac disease.

<{POST_SNAPBACK}>

Thats not entirely true. What if you don't have full-blown celiac disease? What if you have Non-Celiac Gluten Sensitivity like so many others here do? The diet works the same for these people as it does for a Celiac and there is still harm occurring to the body tissues in these people if they eat gluten.

If your symptoms get worse when you go back on gluten but you end up testing negative for Celiac are you saying you're going to stay off the diet based on that?

That doesnt make a whole lot of sense to me unless of course you test negative and have *no* worsening of symptoms during the challange... then that would make sense to me.

[VydorScope]

If your symptoms get worse when you go back on gluten but you end up testing negative for Celiac are you saying you're going to stay off the diet based on that?

That doesnt make a whole lot of sense to me unless of course you test negative and have *no* worsening of symptoms during the challange... then that would make sense to me.

<{POST_SNAPBACK}>

Well the reason why it does make sense is you can not say somthing else that was eliminated at the same time as gluten was not the thing at fualt. For exmaple Eggs. Eggs are used alot in baked goods... and a gluten-free diet is often low on baked goods. Or what if you only alergic to wheat and not gluten? Granted those to exmaples might be easy to find out via allergy testing, but what about food additives? Most gluten-free dieters tend to aviod highly added foods cause of work need to be done to research each out.

If you get worse on the diet, and test negative, then you have to look at what was speicilfy remove/added durring the diet, try to see fi you can narrow it down. You may still have celiac disease if the test is negative, but it might be somthing else.

Diagnoses via a diet change is very hard to nail down with definitivness, which is why most ppl go for blood tests, stool tests, and etc.

[Guest nini]

You very well may have other food intolerances and other issues going on, however the gluten challenge still doesn't make sense to me.

True I am of the camp that believes that no one should be eating gluten, it is a toxic poison and is responsible for so many other health conditions besides celiac disease.

Obviously you feel like you need to have a definitive dx in order to adhere to this very healthy diet, You don't even seem to want to consider getting your family on it as well. It would be healthier for them.

I'm not saying give up on searching for what is wrong, but honestly if gluten is not healthy for anyone (and it's NOT) why on earth would anyone want to continue to eat it?

Our culture is so dependent on gluten and at the same time people are getting fatter, getting more cancers, heart disease, etc...

There is so much more to it than just replacing the gluten in your diet with gluten free foods. The typical diet that most Americans, and other industrialized countries have is just absolutely horrific and so unhealthy.

I'm not criticizing. I was there. I went off of gluten for a while, tried to replace everything with gluten-free versions, yuck... didn't stick because no dx. 4 years later almost dying, forced to go gluten-free... wish I had stuck with it then.

[VydorScope]

I'm not saying give up on searching for what is wrong, but honestly if gluten is not healthy for anyone (and it's NOT) why on earth would anyone want to continue to eat it?

Because if its not whats wrong you risk alot more damage because you put your faith in gluten-free and not where it needs to be. IMO it would be a bad idea if your sick to just blindy assume its gluten with out some defintive test. What if its cancer? Alot of cancer symptons are simular....

Yes thats an extreme, but real risk here. No thanks, I agree with Hermit, a real dx is needed.

[Guest nini]

A gluten free diet is completely healthy for everybody and the dr.s can keep searching for other things while on a gluten free diet.

Getting hung up on having a positive dx can also be a very dangerous thing.

I admit, mentally it is difficult to fathom for most people and for the longest time I was unwilling to consider that what I ate was making me sick.

Even if it's not celiac disease, gluten is poison, period...

[VydorScope]

Nini,

You and I will prbly never agree on this. I think wandering hermit is being very smart by attempting to elimitate celiac disease as a problem, so that he can look for other reasons with that elimiated from the list. Your suggestion is leave celiac disease a mystery, and move on. I disagree with that method. When your talking about health you need to know, and you need to know in a timily matter when ever possible.

Thats my opinion on the matter.

[tarnalberry]

Another option, that many doctors seem to overlook, is trying the diet as a test itself. That doesn't necessarily mean for three months - if you react on the first meal, you've got an answer. It could mean a few days or a few weeks, but it doesn't have to be three months.

Honestly, with the conflicting information you have, I understand why you're trying this. While it is bad, three months, instead of cheating for the rest of your life, is probably the lesser of two evils.

Keep in mind, however, some of those issues you were saying would be difficult to work with DO have work-arounds that are doable. (For instance, you go with your kid to pizza, but bring your own food instead of eating the pizza. Same thing with coworkers and the like... I do it often.)

[Wandering Hermit]

If your symptoms get worse when you go back on gluten but you end up testing negative for Celiac are you saying you're going to stay off the diet based on that?

That doesnt make a whole lot of sense to me unless of course you test negative and have *no* worsening of symptoms during the challange... then that would make sense to me.

<{POST_SNAPBACK}>

Rachel:

If the testing is negative but I *feel* better gluten-free than non-gluten-free then I will go back to gluten-free, no question.

I'm a bit of a pessimist, so in the back of my mind I think I am a celiac. I am resigned to it. But I want to see a clear demonstration of it. There are several:

1. Clear difference in symptoms w/ and w/o gluten, with other confounding factors eliminated.

2. Blood work that is conclusive and meaningful, unlike my previous tests.

3. Positive Biopsy.

4. The opinion of at least 2 different specialists who know celiac disease.

[skoki-mom]

Hey Hermit,

If something more conclusive is what you feel you need, then I don't think you need to justify it to anyone. I had + bloodwork, but I opted for the scope because I really had to know, especially since I have no symptoms of celiac disease. As well, I needed to know conclusively because I have kids, and an accurate family medical history is important for them as well. As a nurse, I see people making choices like this all the time, and ultimately, *you* are the one dealing with it, and you have to feel like you have all the info you need. If the gluten challenge will help you with this, I would personally do it. For me, I figured I'd been eating gluten for almost 36 years, and I would not even know today if my sister hadn't been Dx with celiac disease, so to keep eating it for another 3 few months to get an accurate scope was worth it for me.

I really hope you get some answers that will put your mind at ease!

[Wandering Hermit]

A gluten free diet is completely healthy for everybody and the dr.s can keep searching for other things while on a gluten free diet.

Getting hung up on having a positive dx can also be a very dangerous thing.

I admit, mentally it is difficult to fathom for most people and for the longest time I was unwilling to consider that what I ate was making me sick.

Even if it's not celiac disease, gluten is poison, period...

<{POST_SNAPBACK}>

Well, I agree, that the world would be a better place if all gluten grains disappeared overnight! celiac disease or no celiac disease, I'd feel that way, just because I know how tough being gluten-free is. And even if it turns out I am not celiac I also deeply care and understand celiacs and try to help them in any way I can.

But I would never force this diet on my family. My wife would proably leave me if I made such a demand, and rightly so. 99 out of 100 people can eat gluten, and I'm not going to ask any of them to stop.

My initial diagnosis was sketchy. Again, no GI doctor in his right mind would look at my case and say "oh yeah, you are most likely a celiac." Gluten is either going to cause intestinal damage in me, or it is not, and I am going to require that these guys get it figured out with more compelling accuracy than what they have supplied so far. I do not think it is that much to ask or expect.

[Guest nini]

Well, I agree, that the world would be a better place if all gluten grains disappeared overnight! celiac disease or no celiac disease, I'd feel that way, just because I know how tough being gluten-free is. And even if it turns out I am not celiac I also deeply care and understand celiacs and try to help them in any way I can.

But I would never force this diet on my family. My wife would proably leave me if I made such a demand, and rightly so. 99 out of 100 people can eat gluten, and I'm not going to ask any of them to stop.

My initial diagnosis was sketchy. Again, no GI doctor in his right mind would look at my case and say "oh yeah, you are most likely a celiac." Gluten is either going to cause intestinal damage in me, or it is not, and I am going to require that these guys get it figured out with more compelling accuracy than what they have supplied so far. I do not think it is that much to ask or expect.

<{POST_SNAPBACK}>

I completely disagree with the statement that 99 out of 100 people can eat gluten, most people just don't realize that it is at least part of the cause of their particular ailments.

I admit I'm coming from the camp that thinks all gluten is evil... I wasn't always like this I promise...

I give up.

[Rachel--24]

I completely disagree with the statement that 99 out of 100 people can eat gluten, most people just don't realize that it is at least part of the cause of their particular ailments.

<{POST_SNAPBACK}>

I agree 100% with this statement.

I read "Dangerous Grains" and I think its a great book for everyone to read but at the same time for me....*seeing* is believing...or "the proof is in the pudding"...so to speak.

I've been going around to various message boards and letting people know about gluten sensitivity, the diet, testing methods...etc. Alot of these people never heard of such a thing. Some people decided to try the diet and so far ALL of them have told me it has helped them....I'm pretty amazed actually. Even people who had no problems except maybe some mild tummy troubles....have found that the problems went away on the diet.

This backs up everything I read in "Dangerous Grains".

Gluten is BAD for us.

Some people (including myself) question why so many people test positive through Enterolab (something like 70% come back positive). I'm beginning to think that that many people really DO have problems with gluten whether their symptoms are severe, mild or even if they have no symptoms. Alot of people *think* they are perfectly healthy...I know someone who has "D" after nearly every meal but he thinks this is perfectly normal and he is otherwise completely healthy. I bet if he stopped eating gluten he would no longer have the bathroom problems.

[Rachel--24]

Rachel:

If the testing is negative but I *feel* better gluten-free than non-gluten-free then I will go back to gluten-free, no question.

I'm a bit of a pessimist, so in the back of my mind I think I am a celiac. I am resigned to it. But I want to see a clear demonstration of it. There are several:

1. Clear difference in symptoms w/ and w/o gluten, with other confounding factors eliminated.

2. Blood work that is conclusive and meaningful, unlike my previous tests.

3. Positive Biopsy.

4. The opinion of at least 2 different specialists who know celiac disease.

<{POST_SNAPBACK}>

Even though I'm in a similar situation as you with no definative answer...I could not do the challenge. I'd rather have the unanswered questions then go back to the kind of pain and depression I had before.

I havent gotten my biopsy results yet but I'm certain they're negative so it wont really tell me anything.

I wish you luck for the next 3 months and I hope you get a definate answer. I'm glad you will go back to the diet if your symtoms get worse...regardless of the test results.

[Wandering Hermit]

Even though I'm in a similar situation as you with no definative answer...I could not do the challenge. I'd rather have the unanswered questions then go back to the kind of pain and depression I had before.

I havent gotten my biopsy results yet but I'm certain they're negative so it wont really tell me anything.

I wish you luck for the next 3 months and I hope you get a definate answer. I'm glad you will go back to the diet if your symtoms get worse...regardless of the test results.

<{POST_SNAPBACK}>

Well, if I thought there was a really good chance that I would be miserable on gluten, I probably would say NO to the challenge.

But like I said before, my gluten-free diet coincided with an abrupt change to my milk intake. And I know milk makes me sick, as I have done a 'milk challenge' - now it is time to do the gluten challenge in the same way for the same reason.

It will be interesting to see where I am in a week, a month, 3 months, etc. It has been 24 hours since I had some bread and I have not felt anything yet.

[Rachel--24]

It will be interesting to see where I am in a week, a month, 3 months, etc. It has been 24 hours since I had some bread and I have not felt anything yet.

<{POST_SNAPBACK}>

Keep us posted...I'm very curious to see what the outcome will be.

[VydorScope]

Well, if I thought there was a really good chance that I would be miserable on gluten, I probably would say NO to the challenge.

But like I said before, my gluten-free diet coincided with an abrupt change to my milk intake. And I know milk makes me sick, as I have done a 'milk challenge' - now it is time to do the gluten challenge in the same way for the same reason.

It will be interesting to see where I am in a week, a month, 3 months, etc. It has been 24 hours since I had some bread and I have not felt anything yet.

<{POST_SNAPBACK}>

YOur being smart to test seperatly like this, its the only way your gonna get an answer. I am right here wtih you (also doing challenge)