I Have Orders To Be Glutened But My Insides Already Feel Badly Damaged

[steve501]

About two weeks ago I decided that just maybe wheat wasn't that much of a problem and bought some big sausages from the market. Roll onto today and I'm back to the point where I actually feel hungry and able to eat again.

I went to visit the gastroenterologist today and what she wants me to do is to eat gluten for the next two weeks everyday without being clear about how much (splash of soy sauce or a big pie?). I asked what if my symptoms got worse and she said 'then stop'.

My insides already feel very damaged and I'm sore after eating and usually have recurring aches hours after the food has gone from my system. My fear is that by following the instructions of the doctor, I'll do even worse damage and be back where I was two weeks ago, have to relive the whole nightmare again as if it isn't already bad enough right now after two weeks, feeling like I will never heal.

Clearly I'm ordered to eat gluten to get properly tested and yet, if my symptoms return and I have to stop, then I will have messed myself up for nothing. I've also read that the antibodies that are produced in reaction to gluten proteins hang around for quite some time. I mean couldn't I just eat a big cream cake about three days before to be sure instead of trying out a small amount starting now (but potentially getting extremely sick for days)?

I don't know how to proceed. The conflicting instructions are making my head spin and i don't want to do something which I'm already pretty sure is going to screw me up anyway, just to later confirm it on paper. I don't want to suffer this gnawing feeling in my gut anymore, and definitely don't want to make it worse than it already feels.

What can I do?

[pricklypear1971]

So you were gluten-free, then ate gluteny sausages and got sick, stopped eating gluten for 2 weeks, now doc wants you to start eating gluten again?

[Skylark]

Celiac antibodies do not hang around the way you're thinking. It typically takes 2-3 months of a full-gluten diet (4 slices of bread a day) to have a hope of a positive test. Even then, the testing is prone to false negatives. If you've been gluten-free for more than a few weeks, the 2 weeks your gastroenterologist has suggested is probably not long enough and a little soy sauce is not going to do the trick.

If you know gluten makes you sick and you're willing to stick to a celiac diet, you might want to skip the testing. I never got tested myself. My doctors have told me that since I'm sticking to a celiac diet and know gluten is an issue, it isn't worth making myself sick for an unreliable test.

[steve501]

So you were gluten-free, then ate gluteny sausages and got sick, stopped eating gluten for 2 weeks, now doc wants you to start eating gluten again?

Exactly, it seems like an insane request doesn't it. I'm not 100% but too big a coincidence that I went seriously downhill on a high gluten week, right?

[steve501]

If you know gluten makes you sick and you're willing to stick to a celiac diet, you might want to skip the testing. I never got tested myself. My doctors have told me that since I'm sticking to a celiac diet and know gluten is an issue, it isn't worth making myself sick for an unreliable test.

You're right, what are the docs going to do even if the test comes out negative? If what you said is right, then I'll just make myself much sicker, and end up with negative test results anyway. It isn't worth it. Thanks!

[tom]

...It typically takes 2-3 months of a full-gluten diet (4 slices of bread a day) to have a hope of a positive test.

...

The experts have no consensus on this.

That study linked to in another thread recently had a positive blood & biopsy at 5 wks into a challenge. (All were positive & min duration was 5wks)

Surely this negates the "to have a hope of positive test" phrase/hyperbole.

Stanford says 1mo, half slice/day.

I wish we really knew.

Steve, I feel for ya. Dr saying get sick AGAIN so *I* can see & tell you you're sick.

[Skylark]

The experts have no consensus on this.

That study linked to in another thread recently had a positive blood & biopsy at 5 wks into a challenge. (All were positive & min duration was 5wks)

Surely this negates the "to have a hope of positive test" phrase/hyperbole.

Stanford says 1mo, half slice/day.

I wish we really knew.

Steve, I feel for ya. Dr saying get sick AGAIN so *I* can see & tell you you're sick.

Hyperbole is pejorative. Why are you attacking me? Chicago Celiac Center says three months of high gluten.

There is a big issue with challenges. Most insurance plans won't let you do something a "gluten lite" challenge for a few weeks with a test, and then a retest after a couple months of heavy gluten if you get a negative. You have to challenge strongly enough that you can trust a negative result.

Whatever it actually takes to challenge, it is certainly more gluten than any of us care to eat!

[tom]

Hyperbole is pejorative. Why are you attacking me?

Didn't mean any attack. Thought I was just acknowledging that you may have exaggerated for effect & didn't literally believe that it's hopeless w/out a 3 month, high-dose challenge.

The word isn't perjorative, of itself.

And many celiacs have been dx'd w/ a lesser challenge, haven't they?

[Skylark]

Didn't mean any attack. Thought I was just acknowledging that you may have exaggerated for effect & didn't literally believe that it's hopeless w/out a 3 month, high-dose challenge.

The word isn't perjorative, of itself.

And many celiacs have been dx'd w/ a lesser challenge, haven't they?

OK, thanks very much. I thought I'd best ask rather than misunderstanding. That's fair that I exaggerated a little.

Yes, many have absolutely been diagnosed with shorter challenges. Others never do get the positive blood test they want to validate their gluten reactions, even with a positive biopsy. The diagnostic process sure isn't what one would hope for!

[tom]

[steve501]

Steve, I feel for ya. Dr saying get sick AGAIN so *I* can see & tell you you're sick.

That sums it up ever so nicely Tom. I think the trouble when dealing with people is not feeling what they're going through. I'm just making the assumption she (the doc) has no clue what it feels like day after day, but you seem to.

Perhaps some people need to suffer so we have compassion for one another. If (health)care is based upon suffering it must be sensitive to it.

I'm so glad I haven't followed the docs instructions. Feeling a bit better today, so I must be treating my body right. There's no way I'm going to double check... once bitten, twice shy.

[mushroom]

May I say Amen to your attitude, Steve. It seems that with the medical profession, if they have not personally witnessed it, it has not occurred. Well, sorry, we live in our bodies 24 hours a day, and we know what they are doing. The fact that you were out of the loop at that time, doc, ..... well, I'm not going to make that my problem I don't owe you a proof. Most docs have no clue what suffering their patients experience because it is only something they read in a textbook, maybe see a crease of pain on a face, a tiredness in the eyes, a slump of the shoulders. How much can that hurt them???

[GFinDC]

Hi Steve.

Well, she did tell you to stop if you got sick again, so she isn't being unresaonable there IMHO. The length of time she suggested for a positive test result seems too short though. The need to get diagnosed is a personal decision I think. It doesn't matter as far as treatment goes. The gluten-free diet is the only treatment right now. Most likely you will make some mistakes and get glutened or cross contaminated on the gluten-free diet when new to it. So you will have a validation if that happens anyway.

Some people don't want celiac on their medical records for insurance reasons. Others want the official diagnosis so they are more likely to be accepted for clinical trials. Some can't seem to stick to the gluten-free diet without a piece of paper or a doctor saying they need to. There are parents who wnat schools to provide gluten-free meals for their children and the diagnosis may help with that.

But if the gluten-free diet makes you feel better, the usual advice is to listen to your body. Regardless of what doctors or tests say, if it hurts, don't do it.

[kwylee]

I have a question and I've often wondered about this. A couple years ago I did test negative through biopsy and bloodwork prior to going gluten free. Most of my symptoms were neuro but I mentioned to a (very) young doctor that the dizziness that had plagued me for years seemed to worsen after eating, so that was among the tests he ran, but he concluded that wasn't the cause. About 6 months later, still getting nowhere but researching like crazy, I decided to take it upon myself to send a stool sample to Enterolab, which showed high levels of gluten antibodies. That's when I went gluten free completely and the dizziness went away.

So here's the question, are stool samples something that are reliable or did I just get lucky to figure things out? Why would I test negative in bloodwork but positive in a stool sample? I had been dizzy for 8 years, could things have changed that much in 6 months?

And if that testing is "reliable", is that something that the poster could possibly consider if he didn't want to submit his system to a 5 week to 3 month challenge?

[steve501]

May I say Amen to your attitude, Steve. It seems that with the medical profession, if they have not personally witnessed it, it has not occurred. Well, sorry, we live in our bodies 24 hours a day, and we know what they are doing.

Yes, amen mushroom! Just looking at yours and Toms diagnosis list and I cannot fathom the depths of all the trouble you've faced over decades?! You didn't have the benefits of a gluten free section, or the labelling so you know exactly what to get and what to avoid. Some of the docs are looking in the wrong places. The answers are written on your brow and in your eyes. All we want is a little recognition sometimes. Thankyou!

[Skylark]

I have a question and I've often wondered about this. A couple years ago I did test negative through biopsy and bloodwork prior to going gluten free. Most of my symptoms were neuro but I mentioned to a (very) young doctor that the dizziness that had plagued me for years seemed to worsen after eating, so that was among the tests he ran, but he concluded that wasn't the cause. About 6 months later, still getting nowhere but researching like crazy, I decided to take it upon myself to send a stool sample to Enterolab, which showed high levels of gluten antibodies. That's when I went gluten free completely and the dizziness went away.

So here's the question, are stool samples something that are reliable or did I just get lucky to figure things out? Why would I test negative in bloodwork but positive in a stool sample? I had been dizzy for 8 years, could things have changed that much in 6 months?

And if that testing is "reliable", is that something that the poster could possibly consider if he didn't want to submit his system to a 5 week to 3 month challenge?

It's hard to get a negative anti-gliadin from Enterolab, given that 30% of perfectly healthy people come up positive and even more with stomach trouble do. It's really good that it provided you with enough motivation to go completely gluten-free.

I'm not a fan of sending people to Enterolab to spend a bunch of money when Fasano is saying there is no reliable test for gluten intolerance other than trying the diet.

[steve501]

Hi Steve.

Well, she did tell you to stop if you got sick again, so she isn't being unresaonable there IMHO. The length of time she suggested for a positive test result seems too short though. The need to get diagnosed is a personal decision I think. It doesn't matter as far as treatment goes. The gluten-free diet is the only treatment right now. Most likely you will make some mistakes and get glutened or cross contaminated on the gluten-free diet when new to it. So you will have a validation if that happens anyway.

Hi, she was unclear about how much or little I should ingest. That was a bit of a warning sign. She also said: 'I want you to eat as normal'. It was the end of the year when I finally added up that it was wheat that was causing symptoms. In the new year- speaking as someone new to being gluten free- I think I did pretty well, even reintroduced dairy and enjoyed a fairly 'normal' life at points, although there were still foods that contained gluten I wasn't aware of.

So the fact is, I was getting better, despite a few small hiccups and could not understand why I was not completely symptom free after over two months. Perhaps it was the sugars I thought and not the wheat since I was consuming food with breadcrumbs and not really having big problems. It was then I bought some large sausages, almost three weeks ago, and coincidentally I got very sick.

Like I said, I've just got to the point where I can eat more regularly and not suffer straight after eating. I do seem to be getting better, albeit very slowly, and feel like I have gone backwards to the tune of nearly three months, but this time with even worse outcome. So, I hope you appreciate being told: 'I want you to get glutened every day for two weeks' made me feel (a) depressed ( scared © as though my life was over again, and that I would not recover from what she asked.

That's my story... I choose to stay gluten free; I don't want to suffer everytime I eat and have my whole life revolve around food, but we all must eat.

Best wishes.

[kwylee]

It's hard to get a negative anti-gliadin from Enterolab, given that 30% of perfectly healthy people come up positive and even more with stomach trouble do. It's really good that it provided you with enough motivation to go completely gluten-free.

I'm not a fan of sending people to Enterolab to spend a bunch of money when Fasano is saying there is no reliable test for gluten intolerance other than trying the diet.

What you say makes sense to me, about hard to get a negative anti-gliadin result from Enterolab, given that I think most people are intolerant to gluten to some degree, or perhaps the test is just as unreliable an indicator as everything else. But you are so right. Those results as well as feeling much better, turned out to be excellent motivation to stay gluten free.

Thanks for all the info!!!

[Skylark]

That's my story... I choose to stay gluten free; I don't want to suffer everytime I eat and have my whole life revolve around food, but we all must eat.

Welcome to the self-diagnosed club then.