Self Elimination Diet - Risky?

[Bobbie Jo]

Hey Veteran Posters - This newbie has a question that I am being asked and I don't know how to answer.

If I am gluten sensitive, how come I did not get sick all of the time eating gluten. But when I went off gluten, then reintroduced it, I got sick - even if eating a crumb of it?

I had stopped eating gluten to try and fix asthma-type/VCD problems. I've been off gluten about 6 months. When I eat just a little accidentally, I get the bloating, gas, etc. This did not happen before when I would eat gluten. Am I making sense?

Some well meaning people seem to think it's dangerous playing with going gluten free if you do not know for sure, and that if you take it out of your diet then reintroduce it, it causes the most havoc.

[shopgirl]

Yes, it absolutely makes sense that your more sensitive to it now. If you had no problems with gluten, you would have no problem eating it again. My mom went gluten-free the first month with me and was perfectly fine when she ate a slice of gluten bread the other day. She's not Celiac or gluten-sensitive so it doesn't have any affect on her.

I've never seen anyone suggest that everyone who stops eating gluten will become intolerant of it.

[mushroom]

When our body is constantly exposed to something that disagrees with it, even though it produces antibodies toward it, it tries to maintain a state of what I would call homeostasis, whereby it can continue to function as well as possible. It doesn't like the gluten, but with a constant stream of it it has to handle it the best it can. Once the gluten is withdrawn, the body draws a deep breath, Aaahhh!! and says, now I can recover. So it stops making the antibodies and sets about the healing process. But if suddenly confronted with gluten again, all the antibody soldiers, who have been waiting in the wings all this time, come charging forth with bayonets drawn and attack those little gluten monsters before they can re-establish

So the danger lies not in the withdrawal of something that does not agree with you, but in trying to reintroduce it. If it does not disagree with you, you can start and stop it with impunity.

[FooGirlsMom]

Mushroom, you are too funny! That was a very easy-to-understand and mentally VISUAL explanation! I enjoyed that and learned something too.

Thanks!

FooGirlsMom

[Skylark]

Well stated, shroomie! It only causes such havoc trying to reintroduce gluten if you are gluten-sensitive to begin with. And lots of us get more sensitive once we're on the diet.

[sandsurfgirl]

My opinion is you have celiac disease. Somebody who does not have celiac disease wouldn't get sick if they ate gluten again.

Your well meaning friends are making me laugh. Why would it be risky to go gluten free? Like there is some inherent goodness about eating gluten? I'm sorry I find that funny, and well... sort of dumb. LOL

You get more sensitive because you body has healed much of the damage to your intestines and now you don't have a tolerance for it. Likely you also felt sort of "sick" all the time on gluten and now that you feel better you are going to notice symptoms as well. Everyone becomes way more sensitive after they go gluten free.

If I were you I would just tell people I have celiac disease. If they ask how you got diagnosed just lie and say blood tests. It will make your life a whole lot easier and it's really none of their business what you eat or how you got diagnosed. Dietary response IS a valid diagnostic tool. You don't need a doctor or a test to tell you gluten hurts you. Your body is telling you that.

[Bobbie Jo]

Ah... the wisdom of the posters has brought peace to my life today. Thank you so much. Now, as I confront these well meaning relatives I can handle it a bit better. Actually, I think they all have the same problem but are in denial and trying to take me with them Not going there!!!!

You all are awesome.

Best,

Bobbie J.

[plumbago]

Hi Bobbie J (is it Jo??),

Why not just get the antibody tests done? Then if those are elevated, get the endoscopy? If it's a matter of insurance/cost, I understand. Personally, I felt much better knowing I had it without a doubt after my endoscopy.

Plumbago

[Loey]

When our body is constantly exposed to something that disagrees with it, even though it produces antibodies toward it, it tries to maintain a state of what I would call homeostasis, whereby it can continue to function as well as possible. It doesn't like the gluten, but with a constant stream of it it has to handle it the best it can. Once the gluten is withdrawn, the body draws a deep breath, Aaahhh!! and says, now I can recover. So it stops making the antibodies and sets about the healing process. But if suddenly confronted with gluten again, all the antibody soldiers, who have been waiting in the wings all this time, come charging forth with bayonets drawn and attack those little gluten monsters before they can re-establish

So the danger lies not in the withdrawal of something that does not agree with you, but in trying to reintroduce it. If it does not disagree with you, you can start and stop it with impunity.

Shroomie- you rock!!!!

Loey

[cahill]

When our body is constantly exposed to something that disagrees with it, even though it produces antibodies toward it, it tries to maintain a state of what I would call homeostasis, whereby it can continue to function as well as possible. It doesn't like the gluten, but with a constant stream of it it has to handle it the best it can. Once the gluten is withdrawn, the body draws a deep breath, Aaahhh!! and says, now I can recover. So it stops making the antibodies and sets about the healing process. But if suddenly confronted with gluten again, all the antibody soldiers, who have been waiting in the wings all this time, come charging forth with bayonets drawn and attack those little gluten monsters before they can re-establish

So the danger lies not in the withdrawal of something that does not agree with you, but in trying to reintroduce it. If it does not disagree with you, you can start and stop it with impunity.

very well said

[Bobbie Jo]

Hi Bobbie J (is it Jo??),

Why not just get the antibody tests done? Then if those are elevated, get the endoscopy? If it's a matter of insurance/cost, I understand. Personally, I felt much better knowing I had it without a doubt after my endoscopy.

Plumbago

Well Plumbago, I'm so glad you asked, because you may have some advice for me. I do have a high deductible (5K), so your first suspicion is correct. But I am wondering if an official diagnosis would create problems down the road if I need to get new insurance, which is possible. Of course - I know much will change in the insurance world, but basically, it seems like would be smoother sailling if I didn't get this offical label on my records.

Also, since I have been off gluten for 6 months, I was thinking that the antibody test and endoscopy would be a waste of time because there is likely a lot of healing.

I wonder if you just eat gluten one time the day before a test or endoscopy that results would show.

One good reason for getting offcially diagnosed is being the first in the family to label this disease so future generations can know we've got it. That would be worth it to me. But again, just wondering if it's too late for the tests.

And, it is Bobbie Jo! But isn't Bobbie J so much cooler? I mean, I need all the cool help I can get. So maybe I will change that log in name.

Thanks Plumbago for caring!

[mushroom]

There has been lots of discussion here, Bobby Jo, about the merits or demerits of a celiac diagnosis. On the one hand, those with disbelieving family members find it helpful to point out to them, see, I have this official diagnosis that proves that gluten harms me. On the other, insurance companies think you are going to keel over overnight because gluten is a problem to you, and how can you prove to them that you are not stupid enough to eat gluten any more. Proving a negative is a lot harder then a positive.

You are correct in your assumption that positive testing would require you to resume eating gluten for 2-3 months, and this would probably be an extremely painful experience for you if you are gluten intolerant. No, you can't just eat gluten the day before the test and get an accurate result. Your body has done a lot of healing, and those antibody soldiers have been put on leave and it would take a while to recall them and get them on active duty again. So unless you want to spend money and suffer, it looks like you are stuck with the self-diagnosis like me. But, as noted above, it does have a positive side. I just hope that you have a family who understand that this is a serious disease and that they may well have it too

[Monklady123]

Hi Bobbie J (is it Jo??),

Why not just get the antibody tests done? Then if those are elevated, get the endoscopy? If it's a matter of insurance/cost, I understand. Personally, I felt much better knowing I had it without a doubt after my endoscopy.

Plumbago

As someone else said, there are good reasons not to do the endoscopy. For me it's the misery I'd have to go through while eating gluten for several MONTHS before the test. And I don't need the endoscopy to tell me "without a doubt" that I have it, I already know without a doubt that I do. For me it's pretty simple: eat gluten = feel miserable; don't eat gluten = have my life back.

[Bobbie Jo]

Dear Mushroom and Monklady123 -

Your sage advice means so much. Thank you. I will definitely not forego months of subjecting myself to poison to get diagnosed.

I humbly ask for a bit more of your precious time and valuable wisdom as I further this conversation. But I wonder if it was a mistake to not take my kids through all of the testing so they would know for sure if they have the disease. A question is coming... but first, very brief history:

A blood test for my 10 yr old son was negative and the stool test with Enterolab resulted in low antibody count - not enough to say for sure if he had the problem. However, I had been eliminating gluten from his diet in the weeks prior to the Enterolab test. He's such a foggy headed guy, also poor enamel on teeth, asthma, short stature and infrequent stomach problems, so I suspected gluten sensitivity.

My 8 yr old daughter, I thought, did not have a problem, but I got her tested anyway with the stool test and I was surprised that she did come back positive for gluten sensitivity. I decided to try the elimination diet for both kids. We started about 2 months ago and have yet to reintroduce gluten. I was going to wait another month.

Without gluten, the changes in the kids' lives are astounding. They are growing more rapidly (an inch each in 20 days) and their attentiveness in school has earned unsolicited remarks from teachers. We are also seeing much better weekly grades on memory tests such as spelling tests. Even more exciting for me is that they remember what I tell them, and they have follow through with tasks. That is HUGE.

The question is coming..

My sister, nephews and nieces are just now getting into diet elimination after seeing our results. If we take the insurance issue out of the picture, I wonder if I should strongly suggest they get the endoscopy. They did get blood tests and some came back positive, some not.

If you two had to do it again, would you get the endoscopy earlier in the process?

Also, this may be a sticky political question, but does anyone put any merit into genetic testing via stool samples for the disease? If I get no replies on that, I will know my answer!

Happy gluten-free Turkey Week!

Bobbie Jo (I'm sticking with the Jo. Can't figure out how to change it on my sign in anyway)

[mushroom]

I am so glad for you, Bobby Jo, that you are noticing such an improvement in your kiddos - it is a verification that gluten free is right for them irrespective of any blood tests, stool tests, endoscopy, whatever. I am constantly amazed at the number of posters who notice this result and constantly amazed at the number of medical professionals who continue to pooh-pooh the link between diet and behavior.

I am probably the wrong person to ask about endoscopy - heck, I never even had a blood test A few months later I did do a stool test (not Enterlab, with Diagnos-Techs) to rule out other problems like candida, etc. But I doubt that I would have had the endoscopy even if I had had the positive blood test (well, knowing what I know now, that is; someone might have talked me into it previously). The testing is just not that accurate unfortunately, at least a 20% error rate with blood and endo). So many people have relied on these negative results to their detriment. Because the tests pick up only celiac disease, not plain old everyday gluten intolerance. Also the endo depends on the skill of the doctor, the number of samples he takes, and whether he takes them from the right places, in other words in less than overwhelmingly positive cases there is a lot of luck involved.

Now you will get the exact opposite viewpoint from a lot of posters who swear that you have to have the endo to be "officially" diagnosed and without it, well, how can you ever really 'know'?? Well, I have no problem living in this gray area; others do. It is really an individual thing. My personal feeling is that if gluten bothers you, don't eat it, end of story. I have never heard of anyone suffering ill effects from a lack of gluten. So your sister and her family will have to make up their own minds about this issue.

As far as the genetic testing is concerned, it is interesting to know, and since this is a hereditary condition there will be several close relatives according to the statistics who will carry a gene predisposing them toward gluten intolerance/celiac. Does not mean that they will ever actually develop it, just that if the circumstances are right and a triggering event occurs, they well may. So it is not diagnostic; only of interest. And there are a lot of questions about which genes are related to celiac/gluten sensitivity; they keep finding new genes all the time, so not having DQ2 or DQ8 is not really as significant as they used to think.

Do you feel like I just threw a cup of cold water on your head?? See, I told you I was the wrong person to ask!!

As far as your kiddos are concerned, if they ever in the future doubt that they are gluten intolerant they can always make up their own minds to start eating it again. But if they really are intolerant of it, it will probably be such a painful experience that they will stop again. But if not, you have done your best for them to grow up strong and healthy and then it is up to them to live their own lives.

Hope you have a fabulous gluten free Thanksgiving.

[Loey]

Dear Mushroom and Monklady123 -

Your sage advice means so much. Thank you. I will definitely not forego months of subjecting myself to poison to get diagnosed.

I humbly ask for a bit more of your precious time and valuable wisdom as I further this conversation. But I wonder if it was a mistake to not take my kids through all of the testing so they would know for sure if they have the disease. A question is coming... but first, very brief history:

A blood test for my 10 yr old son was negative and the stool test with Enterolab resulted in low antibody count - not enough to say for sure if he had the problem. However, I had been eliminating gluten from his diet in the weeks prior to the Enterolab test. He's such a foggy headed guy, also poor enamel on teeth, asthma, short stature and infrequent stomach problems, so I suspected gluten sensitivity.

My 8 yr old daughter, I thought, did not have a problem, but I got her tested anyway with the stool test and I was surprised that she did come back positive for gluten sensitivity. I decided to try the elimination diet for both kids. We started about 2 months ago and have yet to reintroduce gluten. I was going to wait another month.

Without gluten, the changes in the kids' lives are astounding. They are growing more rapidly (an inch each in 20 days) and their attentiveness in school has earned unsolicited remarks from teachers. We are also seeing much better weekly grades on memory tests such as spelling tests. Even more exciting for me is that they remember what I tell them, and they have follow through with tasks. That is HUGE.

The question is coming..

My sister, nephews and nieces are just now getting into diet elimination after seeing our results. If we take the insurance issue out of the picture, I wonder if I should strongly suggest they get the endoscopy. They did get blood tests and some came back positive, some not.

If you two had to do it again, would you get the endoscopy earlier in the process?

Also, this may be a sticky political question, but does anyone put any merit into genetic testing via stool samples for the disease? If I get no replies on that, I will know my answer!

Happy gluten-free Turkey Week!

Bobbie Jo (I'm sticking with the Jo. Can't figure out how to change it on my sign in anyway)

Hi Bobby Jo,

Welcome to our family. I was diagnosed last June after being bedridden for 6 weeks. After running the gamut of tests my GI gave me the test results literally the night before we moved to a new state. I had severe celiac disease and she thought it had gone undiagnosed for decades. When we got to our new state I found a GI and had my son genetically tested (phew - he was negative, one less thing to blame mom for). His was a blood test, though. I needed the most accurate form of testing for him because he was leaving for college and we needed to deal with a meal plan. He had just begun to eat gluten free at that point because I would not allow it in the house. I think even if you are eating gluten-free the blood test still shows accurately if you're positive or negative. Someone please correct me if I'm wrong.

I'm so glad to hear that your children are doing better and hope that you are as well.

Loey

[rdunbar]

gluten intolerance/celiac seems to be a spectrum, like autism is; there are many different degrees of it.

many ppl report their symptoms/sensativities get worse after going truly gluten-free for a while. definately the case w/ me, too. it's important to know WHY this happens, and you've gotten a lot of good info ITT.

i think everyone is on the spectrum, even if they are on the very low end of it.

it would be interesting to do a study where you put random ppl on a gluten-free diet for X amount of time, then reintroduce it, and see what happens.

I'm geussing every single person would feel worse somehow, whether it's just a runny nose, or headaches, the kinds of things ppl just assume are 'normal'.

i would surely bet no one would feel better, although they are getting thier gluten addiction satiated again!

gluten is just nasty stuff, whether someone reacts to it or not noticably.

eliminating gluten is never dangerous, ever, to anyone. au contrare, mon frare (pardom my french)

[plumbago]

In response to your posting, Bobbi J, someone said there is no harm in not eating gluten. I go back and forth on this a lot. When I first gave up gluten in the first quarter of this year, I was thinking that there are surely a lot of "essential vitamins" and maybe minerals I was NOT getting by not eating bread. I haven't investigated, but I still suspect this is somewhat true. On the other hand, in regards to the insurance issue, BOOM! right back the other way I swing again! Meaning, it just seems patently wrong and unfair to label people with celiac disease as having a "pre-existing condition" and therefore more of some kind of risk (not sure what kind) because when treated, it would seem to me just instinctively that people on a gluten-free diet would be among the healthier segment of the population out there. So obviously I am a bit full of contradictions. It's hard to sort out without a science background, sometimes. But I had never ever thought about the celiac disease diagnosis as a potential barrier to low insurance premiums down the road. Oh well, too late now.

But more to your points, I was lucky in that it was - surprisingly - the medical community in the form of my super rushed, cattle calling doctor who suspected I might have celiac disease, and he just flat out told me not to stop eating gluten so that the test can have an accurate reading, etc etc...I obeyed because I was holding to the slim slim hope that I would not have to give up the pizza slices at work, the candy bowls on people's desk and so on. For me, yeah, being gluten-free is still inconvenient, though yes I feel a lot better. (More contradictions)

Others have weighed in by now with the question of introducing gluten back in to your diet.

And as far as family goes, my family more or less could not care less. I try to talk to them about it, just getting tested, and they react to me like I'm a rattlesnake. So if you can draw your family in, congratulations.

[Loey]

In response to your posting, Bobbi J, someone said there is no harm in not eating gluten. I go back and forth on this a lot. When I first gave up gluten in the first quarter of this year, I was thinking that there are surely a lot of "essential vitamins" and maybe minerals I was NOT getting by not eating bread. I haven't investigated, but I still suspect this is somewhat true. On the other hand, in regards to the insurance issue, BOOM! right back the other way I swing again! Meaning, it just seems patently wrong and unfair to label people with celiac disease as having a "pre-existing condition" and therefore more of some kind of risk (not sure what kind) because when treated, it would seem to me just instinctively that people on a gluten-free diet would be among the healthier segment of the population out there. So obviously I am a bit full of contradictions. It's hard to sort out without a science background, sometimes. But I had never ever thought about the celiac disease diagnosis as a potential barrier to low insurance premiums down the road. Oh well, too late now.

But more to your points, I was lucky in that it was - surprisingly - the medical community in the form of my super rushed, cattle calling doctor who suspected I might have celiac disease, and he just flat out told me not to stop eating gluten so that the test can have an accurate reading, etc etc...I obeyed because I was holding to the slim slim hope that I would not have to give up the pizza slices at work, the candy bowls on people's desk and so on. For me, yeah, being gluten-free is still inconvenient, though yes I feel a lot better. (More contradictions)

Others have weighed in by now with the question of introducing gluten back in to your diet.

And as far as family goes, my family more or less could not care less. I try to talk to them about it, just getting tested, and they react to me like I'm a rattlesnake. So if you can draw your family in, congratulations.

Here's a link to a doctor discussing celiac that I found very interesting.

Loey

[Bobbie Jo]

Do you feel like I just threw a cup of cold water on your head?? See, I told you I was the wrong person to ask!!

No, no, no. More of a feeling like we were sitting down over a cup of tea and I'm hanging onto your every word.

I think my biggest takeaway of this post is - trust your gut. No need to get official labels. Also, you can't force other people to think or do anything, even your own kids when they are grown and gone. You have to provide the information and then hope they take it - even if the advice is coming from someone not officially diagnosed with "Celiac Disease".

Thanks again. This is all helping me build the foundation for the rest of our lives gluten free.

I didn't label this post right - it's not "Self Elimination Diet"! Although, I suppose that's what we should all be doing so we can be of service to others.

[sandsurfgirl]

In response to your posting, Bobbi J, someone said there is no harm in not eating gluten. I go back and forth on this a lot. When I first gave up gluten in the first quarter of this year, I was thinking that there are surely a lot of "essential vitamins" and maybe minerals I was NOT getting by not eating bread. I haven't investigated, but I still suspect this is somewhat true. On the other hand, in regards to the insurance issue, BOOM! right back the other way I swing again! Meaning, it just seems patently wrong and unfair to label people with celiac disease as having a "pre-existing condition" and therefore more of some kind of risk (not sure what kind) because when treated, it would seem to me just instinctively that people on a gluten-free diet would be among the healthier segment of the population out there. So obviously I am a bit full of contradictions. It's hard to sort out without a science background, sometimes. But I had never ever thought about the celiac disease diagnosis as a potential barrier to low insurance premiums down the road. Oh well, too late now.

But more to your points, I was lucky in that it was - surprisingly - the medical community in the form of my super rushed, cattle calling doctor who suspected I might have celiac disease, and he just flat out told me not to stop eating gluten so that the test can have an accurate reading, etc etc...I obeyed because I was holding to the slim slim hope that I would not have to give up the pizza slices at work, the candy bowls on people's desk and so on. For me, yeah, being gluten-free is still inconvenient, though yes I feel a lot better. (More contradictions)

Others have weighed in by now with the question of introducing gluten back in to your diet.

And as far as family goes, my family more or less could not care less. I try to talk to them about it, just getting tested, and they react to me like I'm a rattlesnake. So if you can draw your family in, congratulations.

People eating white bread and the brown colored white bread they try to pass off as whole wheat aren't getting tons of nutrition from that even though they are fortified. I don't see how cutting gluten could make you miss out on vitamins and minerals. There are volumes of research to prove that the SAD (Standard American Diet) is well... sad. And bad for you. When people find out they have celiac they generally clean up their diet and eat healthier.

[Loey]

People eating white bread and the brown colored white bread they try to pass off as whole wheat aren't getting tons of nutrition from that even though they are fortified. I don't see how cutting gluten could make you miss out on vitamins and minerals. There are volumes of research to prove that the SAD (Standard American Diet) is well... sad. And bad for you. When people find out they have celiac they generally clean up their diet and eat healthier.

Amen to that!!! I think that anything that we re missing in our diet can be replaced with vitamins. Eating gluten certainly does us extreme harm!!!

Happy gluten-free Thanksgiving to all,

Loey

[Bobbie Jo]

Great stuff everybody. Thank you so much. It's crazy how much better you can handle this lifestyle with support like this.

[plumbago]

Amen to that!!! I think that anything that we re missing in our diet can be replaced with vitamins. Eating gluten certainly does us extreme harm!!!

Happy gluten-free Thanksgiving to all,

Loey

Yes, that's true, but before going gluten-free and despite my pizza slice comment I was eating pretty darn healthy anyway. But I missed the point that even if I am missing out on vitamins and minerals from the bread, when I was eating it, they were probably getting cancelled out by the gluten!!

[Korwyn]

Love your imagery shroom! And in response to the title, YES! there is a risk in a diet which eliminates self!