Told To Reintroduce Gluten Why

[tom tom 79]

I wonder if anyone else has experienced this? i was diagnosed via two blood tests about a year ago. Ive been gluten free for nine months but still having stomach pains. My gastrologist advised to reintroduce gluten for a few weeks so they can reconfirm this with a endoscopy in a few weeks. I dont see the point in making me ill again only to prove Im gluten intolerance. My brother has this really severley i just think its a strage way of rediagnosing this condition!!?!???

[KuKuKaChoo52]

I don't know much, but here is what I think. If you are fine being gluten free don't do it and just live your life gluten free. If you want to someday eat gluten again you might do it, but that's only because I have heard people can find some things that they don't react to and can eat them without reactions. In my opinion I would just stay off the gluten... I hate having reactions and why eat something that is just gonna make you feel like doing nothing?

[mushroom]

The doctor isn't going to suffer at all; YOU ARE!!! I would continue to consider myself a diagnosed celiac. If he wants to look for something else you don't need to be eating gluten for that; he can just do the endoscopy. And you would need to eat gluten for two or three months for the diagnosis to be valid anyway. Suppose you ate it for only three weeks, like many doctors suggest?? It would be negative and he would tell you you were not celiac based on an invalid test. I definitely wouldn't do it.

[Jestgar]

Ask for another blood test to see if your antibody levels have fallen. Maybe you aren't as gluten-free as you think you are.

[jenngolightly]

I wonder if anyone else has experienced this? i was diagnosed via two blood tests about a year ago. Ive been gluten free for nine months but still having stomach pains. My gastrologist advised to reintroduce gluten for a few weeks so they can reconfirm this with a endoscopy in a few weeks. I dont see the point in making me ill again only to prove Im gluten intolerance. My brother has this really severley i just think its a strage way of rediagnosing this condition!!?!???

I don't understand.

Are you having the same pain as before? Is it better? Worse? Different? In my opinion, if you had positive blood work to confirm Celiac, then you have a positive diagnosis. Your original doctor must have thought the same thing because you got the diagnosis based on the labs. Those labs must have been pretty convincing along with, I assume, some very convincing physical symptoms. Was it a different doctor that gave you the diagnosis a year ago? Was there a discussion about doing or not doing an endoscopy, and did that decision convince you that you didn't need one? Are you confident in the original diagnosis?

Some doctors (your current gastro) feel the need for a positive endoscopy to verify the blood panel. It's the "gold standard" for diagnosing Celiac. However, from what I've read, two weeks back on gluten is definitely not long enough for you to damage your villi enough for the scope to see anything. You'll end up with a false negative and be more confused than ever. Other people will post to confirm this or not. On the other hand... If you get a scope now that you've been gluten-free for awhile, the doc might find something amiss that isn't related to Celiac. I'd ask the gastro if that's a possible reason she or he is doing the scope.

Are you absolutely sure you have been gluten-free? No chance of cross-contamination in kitchen appliances or utensils? No gluten in medication? No gluten in health and beauty products? No kisses from glutened sweeties? No hidden gluten in foods that you're eating?...

If you're sure you've been gluten-free and your doc doesn't think there are other serious physical problems, I can think of a few other reasons you might be having pain.

First, depending on the severity of villi damaged a year ago, your intestines might still be healing - it's only been 9 months and it can take up to 2 years if you had very serious damage. If this is the case, you'll just have to be patient with the process and kind to yourself.

Second, it's common for people who have Celiac to have other food intolerances. You might be having reactions to other foods in your diet. Dairy is a biggie. Did you stop eating dairy when you went gluten-free? Lactose is digested by the tips of your villi, so if you had severely damaged villi, dairy isn't going to be digested and will make you sick. Once your stomach heals and your villi get back to normal, you can try adding dairy (lactose) back into your diet. I had lingering problems after a few years of being gluten-free and dairy-free, so my doctor suggested taking out corn and soy because they are common problems for Celiacs.

I hope you've kept a food diary so you can track your problems. If not, start now! No time like the present. It could be a spiral bound notebook or a nicer bound diary, whatever will motivate you to write down everything you eat and all of your symptoms. I have to get the expensive thing so I feel compelled to use it.

So you have choices instead starting to eat gluten again for a scope, but it's ultimately up to you.

Good luck!

[rdunbar]

the healing process takes time. If you've still been getting trace amounts, or have had intermitant glutenings, it intereferes with the healing process.

the microvilli cannot heal if they are still getting pounded with antibodies. your immune system has been used to producing antibodies as long as you've been exposed to gluten. (your entire life). it might not know how to NOT produce antibodies. give it a chance.

I go through the same thing, being ultra strict about a gluten free lifestyle for over a year now, where i get frustrated that i'm still having symptoms lingering for months after a glutening after being excited that i was finally making some progress. if you get numerous slight glutenings from trace amounts, it can be cumalitive, and you might not be able to pin down the source, or that you are even getting glutened, if the effect doesn't come on suddenly.

I used to be lax about CC because i did'nt know about it, and did'nt get any results until I learned, and got strict about it.

also in dropping dairy (casien) ^^^

be patient, and most of all, make totally sure that you don't get the slightest amount of gluten, even a molecule, using every strategy you can come up with. and remember, it's not just about not having the pain, it's about preventing further damage. this is so important to keep in mind.

your doctor sounds deranged, and misinformed. It's as though he's suggesting the possibility of a false positive test??

I would bet that if you ate gluten for a day or two, how it makes you feel would be test enough.

I got severely glutened @3 weeks ago by walking by a bagel factory, and breathing in a cloud of airborne flour. I was a few feet away from an open door to a bakery, i could see big bags of flour, and mixers. by the time i saw it, it was to late.

I could feel it literally in less than a minute; getting dizzy, losing my balance, my nose starts running, and i get crazily irritable. It was really scary, by the next day all the other symptoms are back in full force; achy hip, tingling arm, dermatitis herpetiformis flaring way up... too many to mention

why do i need to have a test when i have this experience?? i've had it before, and finally i know what it is thats doing it, and i have 0% doubt that it is gluten. i would'nt ingest gluten for a test for a million dollars, no lie. you would have to hold a gun to my head, literally, or use a crow bar to open my mouth.

when i think of all the different people that i went to to try to get help for my different problems, including DH, over years, i can't think of any of them ever doing anything, or offering me anything of value, that ever helped me. If anything, they harmed me by giving me false confidence that they knew what they were doing at the time, when in reality, they were clueless.

I bought into it, and wasted precious time in which i could have been healing, if only i had ever gotten real help. and thats what it seems to come down to, is that the help you need when you have celiac is INFORMATION, information on how to cope with avoiding gluten ,and all the different strategies.

but look at who is helping you?? people who are ignorant, misguided and brainwashed by the medical establishment that wants to sell you medicine. I think it's a big trap to think that these people have some kind of magic wand that they can wave and make everything better, so that you can relax, they've got it covered. I've had to figure it out myself, and especially with the help of the wonderful people on this board. no one can protect you from gluten but yourself, though, and the bottom line is that is what we need, is to be protected from gluten, and the knowlege of how to do that.

[Takala]

Reintroducing gluten for a few weeks is not going to cause enough damage to show up in a biopsy.

The result will therefore likely be false, whether or not you have celiac or gluten intolerance. The only way it would show damage from gluten consumption is if you have been careless or cross contaminating yourself unwittingly all along with gluten.

The chances of having two false positive blood tests, combined with symptoms, indicating that you're not really gluten intolerant or celiac is just not likely.

Whether or not you are celiac or gluten intolerant does not rule out other things can be going wrong. This is not an "either - or" situation.

If the doctor is looking for something else in your stomach, such as an ulcer or other sort of damage, eating gluten isn't going to affect that much.

I'm really having trouble understanding the rationale here, unless the doctor is just looking for a reliable insurance reimbursement and the company says it won't pay him unless the patient is being tested for certain things.

In answer to your question about has anyone else ever gone thru this, (being told to take a test just to prove something, but the test was irrelevant) oh, yeah, I was sent for a complete blood panel a few years ago and didn't know the guy put a celiac test request on it, the doc's office calls me up and the clerk chirps at me, great news, you're not celiac. Well, duh, I'm a gluten intolerant wandering in the Land of the Neurological Symptoms and was wondering about my thyroid. I had only been off of gluten about 5 years at that point, can't figure out why they'd think anybody would cough up enough anti gliadin antibodies to show up, let alone somebody like myself.

[ravenwoodglass]

You are already diagnosed as far as celiac goes. I would skip the challenge but if you are still having issues the doctor can check for other issues if needed. If you have been getting cross contamination that could cause stomach pain. You could also have another intolerance. For example I thought for a couple years that I was getting CC'd but it turned out that I am also intolerant to soy. I eliminated soy and the stomach pain stopped. Do be sure that you are checking everything that you take into or put on your body. Check any meds with the maker, your doctor won't know if something is gluten free and some pharmaceys are really not good at checking for us. Also check your supplements if you take them. Do read the whole ingredient panel as they can put gluten free on the label and still have wheat and barley grass and those are not tolerated by us.

If doctor needs something to tell the insurance company there are a number of things he can tell them he is checking for and he doesn't have to poison you to get permission to check for ulcers etc. You are already diagnosed as far as celiac goes so don't let the GI talk you out of it. Postive blood work is diagnostic.

[eatmeat4good]

I just saw an Endocrinologist asking for testing for anything Endocrine related that might be effecting me after 7 years of long term undiagnosed Celiac. He said who diagnosed you? I said me. I described how I was literally in bed for 7 years, sores on arms, elbows, lower back and face that didn't resond to any of dozens of treatments but Do respond to being gluten free, how I no longer stumble, fall, or bump into walls, and how a severe depression and anxiety have completely lifted in the 7 months of being gluten free and how I no longer have daily migraine headaches, nor bone or muscle pain.Know what he said? Said he recommended I get a biopsy done to verify it. I said why would I do that when I have had such miraculous results and every time I ingest gluten it all comes back? He said, "Well, we doctors like to have verification of such things if a patient is going to such a rigid diet."

I said, "Well, you doctors will just have to wonder...because I already KNOW!"

Sorry, but there is idiocy in that thinking. Didn't even listen to my miraculous recovery...damn it.

You don't need another biopsy...you need a gluten free muffin and a cup of coffee. Forget it.

[mushroom]

Said he recommended I get a biopsy done to verify it. I said why would I do that when I have had such miraculous results and every time I ingest gluten it all comes back? He said, "Well, we doctors like to have verification of such things if a patient is going to such a rigid diet."

I said, "Well, you doctors will just have to wonder...because I already KNOW!"

It's you who need to be sure of things, not the doctor - it's not his body and of course he can't tell you what to do to it. He can only make recommendations which you can take or leave.

Good for you in letting him know where he stood Sometimes they forget that they are working for us

[tom tom 79]

To all thanks for taking the time to respond it appreciated. Reading these coments it could be that i may still be picking up gluten traces from somewhere in the kitchen etc but i do have seperate food cupbards and butter etc but u could be correct. i was checked for an ulcer two years ago and this came back clear with just inflamed stomach being the cause of the pain. i was never told i could be also lactose or soy intolerance so will try this and start a diary too as suggested. Im going for more blood tests again this morning so do u think being only gluten-free for nine mths and stupidly eating it again all week will still show a positve antibody for gluten intolerance? Im goings back on gluten free this morning and going to call the gastrologist and argue tge two positive tests as a firm diagnosis. all week ive been experiencing hot tingling on my skin, back ache, headache and cant sleep. Im quite annoyed ive been so silly in this way but it'll set me back on the right road and its opened my eyes to other possibilities. thanks again abduction ill keep u posted. ;-)

[ravenwoodglass]

To all thanks for taking the time to respond it appreciated. Reading these coments it could be that i may still be picking up gluten traces from somewhere in the kitchen etc but i do have seperate food cupbards and butter etc but u could be correct. i was checked for an ulcer two years ago and this came back clear with just inflamed stomach being the cause of the pain. i was never told i could be also lactose or soy intolerance so will try this and start a diary too as suggested. Im going for more blood tests again this morning so do u think being only gluten-free for nine mths and stupidly eating it again all week will still show a positve antibody for gluten intolerance? Im goings back on gluten free this morning and going to call the gastrologist and argue tge two positive tests as a firm diagnosis. all week ive been experiencing hot tingling on my skin, back ache, headache and cant sleep. Im quite annoyed ive been so silly in this way but it'll set me back on the right road and its opened my eyes to other possibilities. thanks again abduction ill keep u posted. ;-)

Chances are that unless you have been getting a lot of gluten accidentily a week back on gluten isn't going to give you a positive blood test. So don't go back to gluten if your test is negative. Go by what your body has been telling you.

[rdunbar]

I was thinking about your post, and have to say that I could imagine that if you only had a symptom or two, that it would be much much harder to get a grasp on what is going on with you, and that gluten may not be as glaringly obvious as the culprit, like it is when you have endless symptoms, like I, and others here have. I'm sorry, i don't think i was putting myself in your shoes when considering your situation. I can see how that could be really flummoxing.

you may have to get more aggressive about finding possible gluten contamination sources, and stamping them out, or even their risk. I've gone through many phases of learning more new things, and tightening up my gluten free lifestyle. I've found that every little bit helps. every time you learn something like that envelopes can gluten you if you lick them,and act on it, you reduce your gluten exposure. all these things add up. it could be that you have some 'leaks' still, and that if you fix them, and are patient, you will certainly see some real results.

the science shows it that gluten is bad bad bad for if you tested positive for the antibodies.

I quit eating wheat @ 3 years ago, but did'nt know anything about celiac, much less CC, so did'nt get anywhere. if anything, i started getting sicker, and lost weight. I believe that decreasing your gluten exposure but not 100% eliminating it can actually make you more sensative in a way, and actually feel worse.

only after getting super strict about CC, not eating out, getting my own kitchen, and dropping dairy did i begin showing improvement, and it is really exciting, and validatimg when it starts happening, but at the same time, it sure is a long process. I got a huge glutening @ 3 weeks ago, and right now i still feel like it set me back 6 months in terms of how i feel.

hang in there.