Should I Deliberately Gluten Myself

[wilem008]

I have been gluten free since May this year and in about a month I am scheduled to have a colonoscopy and an endoscopy.

Do you think I should slowly start eating gluten? Im worried that (if I am celiac) my body will have started to heal internally and the signs of celiac (flattened villi etc) wont be visable.

But im also worried that if I start eating bread/pasta/cake etc that all my old symptoms will come back!

Ive been doing so much better on the diet!

What do you think?

[ShayFL]

You have been gluten-free since May? It is HIGHLY unlikely that your biopsy will be POS. Most agree that you need to be eating a fair amount of gluten every day for a good 2-4 months BEFORE an biopsy to have a chance of it being accurate.

One month of heavy gluten eating might not be enough. So you can reschedule for 3 months from now and eat gluten like crazy to test.

Or you can stick with your gluten-free diet that is apparently working and skip the biopsy. Unless the biopsy is for something other than Celiac.

Why are you getting the biopsy if the diet is working?

[happygirl]

What is the purpose of the endoscopy?

[DarkIvy]

I went gluten free on my own for about 2 months, which was enough to know that it went really well and I shouldn't ever eat gluten again. For various reasons, I decided to have an endoscopy done to make sure celiac was the cause, so I ate gluten like crazy for about 6 weeks. My bloodwork and endoscopy came back normal.

I spent that entire 6 weeks being miserable and sick. If I could go back in time and do it all over again, I wouldn't. I'd stay gluten free. An "official" diagnosis isn't really necessary. I've been gluten free since the day after my endoscopy, and have never felt better.

In fact, sometimes an official diagnosis can be a problem getting things like health and life insurance, so unless you really need it, don't bother. If you're getting the endoscopy done for other reasons and are just hoping it will catch celiac, odds are it won't if you just start eating gluten for a month. The tests they use to diagnose celiac are pretty inaccurate anyway. Stay healthy, stay gluten free.

[wilem008]

Im getting these proceedures done for several reasons.

Ive had every blood test done, had my liver, kidneys, allergies, glucose checked - everything has been checked. Ive had ct scans, holter monitors....everything. Im still getting symptoms. Stomach aches, nausea, fatigue, headaches, constipation etc. So, the doctors dont really know what else to do - other than to do a colonoscopy and an endoscopy (thats for the nausea)....

I agreed to the the tests on the recommendation of my doctor whom I trust.

Even if the tests come back normal/negative for celiac. I will still continue to be gluten free.

Despite my re-occuring symptoms I am SO much better on the diet. My health has improved heaps.

The first symptom to improve was my depression. My depression and 'foggy brain' cleared up with in a week of being gluten free! Thats reason enough to stick to the diet!

I guess im getting the tests done to make sure there is nothing else wrong - besides possible celiac.

[DarkIvy]

If you plan to stay gluten free post endoscopy anyway, and you're doing it for other reasons, I would stay gluten free. There's no use in making yourself sick for a month!

[heiko.d.26]

Exactly, there is no point in making yourself feel miserable for week just because of this endoscopy.

What did your doctor advise you to do?

[wilem008]

Yeah, good point.

I know i'll feel crappy if I mess up on my diet. Im just going to stick with it.

My doctor(s) havent really advised anything. They dont believe that I need to be on this diet. Everytime I explain that I feel better when i dont eat gluten, they look at me with totaly disbelief. Its quite frustrating. Its taken me ages to get them to agree to test me....and even longer for them to agree that something is even wrong with me.

I'll stick to the diet, no matter what the results.

[heiko.d.26]

Only you know what is good for you! Stick to that! :-)

[Fiddle-Faddle]

My doctor(s) havent really advised anything. They dont believe that I need to be on this diet. Everytime I explain that I feel better when i dont eat gluten, they look at me with totaly disbelief.

And you say you TRUST these doctors? WHY? They don't listen to you, they dismiss your experience. Good doctors don't do that. Period.

I think this is a red flag that you need new doctors. Are you in a city that has a celiac clinic (sometimes attached to a major teaching hospital), or at least, a doctor with celiac experience? You might want to find out if there is a celiac support group in your area; they would be able to share their experiences with you, and hopefully point you to a better doctor.

My question for you would be this: do you STILL have symptoms now that you are off gluten, or are some still unresolved? If some are unresolved, what are they? (Sorry, wasn't sure from your two posts--was the depression the only thing that improved? I do agree that that would be reason enough for the diet, but if the intestinal symptoms haven't improved, then an endoscopy would be a good idea, IMHO.)

Also, had your doctors even bothered to order a celiac panel (NOT a wheat allergy test, that wouldn't show celiac or gluten intolerance, but only a true histamine reaction, which most of us here don't have)?? If so, what were the results?

In your shoes, I would write down (on the computer, all nice and neatly printed out) a list of the symptoms I USED to have on gluten, along with the frequency and severity of those symptoms.

Then I would check off which symptoms are GONE on a gluten-free diet.

I would bring that to the next appointment and make the doctor read it (NOT THE NURSE, they just shove it in the chart and the doctor never even sees it). I would then ask (nicely and calmly) for the doctor to explain why he though I shouldn't be on the diet with black-and-white results like these. Does he think diarrhea and intestinal pain are in your head?

[Janessa]

if you are continuing to have symptoms, have you considered additional food intolerances? Have you tried an elimination diet?

[sbj]

Since you're not going to challenge you will never know for sure whether you have celiac disease, so you should also check for the following:

• Blood tests for nutritional deficiencies due to malabsorption.
  
• Watch for iron deficiency anemia and osteoporosis.
  
• Check your bone density.
  
• If you have symptoms look for thyroid disease, type I diabetes, joint diseases, RA, and liver diseases.
  
• Colonsoscopy or CT scan to look for signs of tumors. Blood analysis for cancer cells or urine cytology for the same.
  

Since you have continuing problems it is important that you NOT skip the endoscopy and colonoscopy because your doc might be able to find something that is causing these other symptoms - such as a cancer tumor. I'm sure you would want to know if you have cancer.

So stay off gluten, get the colonoscopy and endoscopy, and who cares if you have celiac (so long as you are on the lookout for everything that can come with celiac)?

[wilem008]

Its taken me a long time to get to this stage of testing.

The first doctor I had, totally dismissed celiac and said it was IBS and that there was NOTHING that could be done about it. I stopped seeing him. His problem was that I dont get diarrhoea, I get the total opposite. The doctor I moved on to has been much better. She sent me off to get allergy tests and a ceilac panel done. Both were negative: "Celiac unlikely".

I was still getting all my symptoms (constipation, headaches, depression, irritability, stomach aches and cramps, nausea, bloating etc). In the past, (last year) I have had problems with over-active thyroid and anemia.

I went gluten free on my own accord and felt much better.

Depression has cleared up and the stomach problems have lessened.

While I say i am feeling much better, Iam not totally symptom free.

I still, from time to time, get unexplainable stomach aches/cramps, nausea and I still have problems with constipation.

Im getting the colonoscopy and endocsopy done so the doctors can rule out other possibilities....like tumors etc.

I just want to make sure im as healthy as I can be internally.

I will continue with my diet, I know it helps.

[Fiddle-Faddle]

Since you're not going to challenge you will never know for sure whether you have celiac disease, so you should also check for the following:

[

It's possible to have celiac, yet not test positive in any way, including genetically.

As far as the continuing symptoms go, I would suggest

1) posting your current typical day's diet--maybe someone will spot something that is either gluten (such as Rice Dream rice milk, which claims to be gluten-free but isn't), or something that explains the continuing symptoms. I would also keep a food diary, and look at it when you DO have those occasional symptoms. Something is causing them, and if it's what you're eating, that's how to find out.

2) check out other possibilities, such as Lyme Disease, Candida infection, mercury toxicity, and mold exposure, which have all caused symptoms for others here.

3) When gluten is the only obvious trigger, I generally recommend not to bother with an endoscopy. But if you are still experiencing symptoms, I think it would be worthwhile to go ahead with the endoscopy. But I would not go back on gluten for it. I would not be looking for confirmation of celiac with this endoscopy, but to rule out anything else.

[sbj]

It's possible to have celiac, yet not test positive in any way, including genetically.

At the risk of starting some kind of flame war - which I sincerely hope does not ensue - an honest question for fiddle-faddle:

Since celiac disease - by definition - requires an abnormal blood test, or an abnormal appearing intestine on biopsy, and symptoms that resolve with a gluten free diet, how is it possible to know that one has celiac disease while not testing positive in any way?

If symptoms simply resolve by being on a gluten-free diet that's great - but that doesn't mean you have celiac. (And it doesn't mean that your problems aren't serious or in any way unequal to or less than those involved with celiac. In fact, your problems may be worse and I mean no ill will by asking this question.) I'm just honestly curious - if you don't test positive in any way there's simply no way to know if you have it. In fact, by definition, if you don't test positive in any way, then you don't have it. You might have something worse. But in order to have celiac, you've got to test positive in some way in addition to resolution of symptoms by being on the diet.

Please, please, don't attack the messenger. And if your doctor, whom you trust, recommends an endoscopy to look for what's causing other symptoms, then I sincerely suggest you follow a medical professional's advice. If you don't want to follow his/her advice then I suggest you switch doctors. There are very few substitutes that are equal to a rigorous education in the medical sciences.

I hope that I do not offend or hurt any feelings by posting this sincere question.

[kbtoyssni]

Since celiac disease - by definition - requires an abnormal blood test, or an abnormal appearing intestine on biopsy, and symptoms that resolve with a gluten free diet, how is it possible to know that one has celiac disease while not testing positive in any way?

If symptoms simply resolve by being on a gluten-free diet that's great - but that doesn't mean you have celiac. (And it doesn't mean that your problems aren't serious or in any way unequal to or less than those involved with celiac. In fact, your problems may be worse and I mean no ill will by asking this question.) I'm just honestly curious - if you don't test positive in any way there's simply no way to know if you have it. In fact, by definition, if you don't test positive in any way, then you don't have it. You might have something worse. But in order to have celiac, you've got to test positive in some way in addition to resolution of symptoms by being on the diet.

For the traditional medical community to diagnose celiac you have to have a positive blood test or scope, but that misses all the people in the early stages of celiac who don't have enough damage to test positive. Unfortunately traditional medicine can only detect end-stage celiac which is a real shame. If you go gluten-free without a positive test and feel better, it may be celiac, but it may also be some other form of non-celiac gluten intolerance. I think many here who have self diagnosed feel badly enough when glutened to feel confident that they are in fact celiac (or beginning stage celiac). I know this is the case with me. I will never know for sure if I'm celiac, but my health is so, so much better now that I am 100% committed to my lifelong gluten-free diet.

[veggienft]

Traditional medicine diagnoses celiac disease only with an endoscopic biopsy. Modern medicine has proven that to be incorrect. So medical science disagrees with itself.

There are many stages and manifestations of wheat disease. Of necessity a proper celiac diagnosis does not use a combination of techniques to try and rule out non-celiacs. It uses the combination to rule in celiacs.

1. Endoscopic biopsy

2. Antibody test

3. Positive response to gluten-free diet

If any of these diagnostic tests is positive, then the patient has wheat disease .....of course.

It doesn't take an Einstein to figure out that, when a patient is cured by a treatment, he/she had the disease. It's also obvious that, if some activity causes one harm, the solution is to stop the activity.

Tell me again why we need doctors? Wait. I remember. .......to form exclusive social clubs.

..

[Fiddle-Faddle]

Not to worry, sbj, I think you are asking a totally valid question!

Lack of positive bloodwork and/or positive endoscopy does NOT mean you don't have celiac. There are people whose first biopsy was negative and second was positive--and they had negative blood tests.

Does that mean that first they didn't have celiac and then they did 6 months later?

I don't think so. I think it's more likely that the tests were either inaccurate or indicative of not enough gluten having been consumed. Endoscopy, especially, has a high potential for missing celiac disease.

You have something like 22 feet of intestine, and they biopsy four to six quarter- inch samples. So they are only testing 6/1016 of your intestine. Remember, villi damage is often patchy and not always easily visible, even under microscope.

So someone in the early stages of celiac does NOT have a fabulous chance of being accurately diagnosed by endoscopy.

Like the above posters point out, these tests can prove that you have it, but they DON'T prove that you don't have it.

That's the problem.

And I agree--lack of positive response to a truly gluten-free diet would likely indicate something else going on--but it might be something else going on in addition to celiac, or something else going on without celiac being present, and that would be VERY difficult to figure out until you find out what else is going on.

[sbj]

Hi Guys!

Do either of you think that there is any difference between celiac disease, gluten intolerance, and wheat allergies?

"If any of these diagnostic tests is positive, then the patient has wheat disease .....of course."

That's simply not true. Celiac disease requires either a positive blood test or biopsy in addition to resolution of symptoms after a gluten-free diet. I'm not sure what wheat disease is (I'm sure I will shortly be educated), but I am aware of commonly accepted definitions for gluten intolerance, celiac disease, and wheat allergies.

"When a patient is cured by a treatment, he/she had the disease."

If you've ever watched House you'll know that they often relieve a patient of symptoms without actually curing them. In fact, a gluten-free diet doesn't cure someone with celiac disease at all. You're never cured - that's why you need to stay on the diet for your whole life.

"It's also obvious that, if some activity causes one harm, the solution is to stop the activity."

Sort of like the guy who goes to the doctor and says, "Doc, my arm hurts when I do this." So the doc says, "Well stop doing that then."

"Tell me again why we need doctors?"

I appreciate the sarcasm (?) but gee, I dunno. They sort of helped both my mother and father when they were sick. They sort of helped me. I think that flu shots possibly have saved the lives of perhaps millions. The polio vaccine was a pretty good thing.

Go ahead and get a second opinion. I don't trust doctors unequivocally myself - they make mistakes like anyone. But they are proessionals and I do listen to them. When my car acts up I take it to a garage that employs professional mechanics. When my plumbing acts up I call a professional plumber. These guys don't always get it right but quite often they are correct. They also have the benefit of much more specific education than I. Just because medical science is constantly evolving and improving doesn't mean we don't need them at all. Let's suppose that the medical community suddenly decided to change the definition of celiac to something that would please some of these commentors - should I then start to believe and trust them? Should I not trust Dr. Fine?

If you go to law school but fail the bar then you're not an attorney. If you practice driving but fail the written test then you're not a licensed driver. Having celiac disease requires passing a test. If you don't pass the test you don't have it. You have something else. Maybe at some point in the future the definition of celiac disease will change, but at the moment there is a clear, commonly accepted definition. Gluten intolerance is a serious and widespread problem and it is different than celiac disease. Why can't that be true?

[sbj]

Hi Fiddle ...

Just an FYI - my above response ws not directed at you.

The thing is, the celiac blood panel correlates to villi damage even in the absence of a positive biopsy. Right? That's why I think celiac is diagnosed based on either a positive bood test or positive biopsy and resolution of symptoms with gluten-free diet. Isn't the hallmark of celiac disease an auto-immune reaction (the body attacking itself) which is different than the anti-gluten reaction (body attacking gluten) apparent in gluten intolerance?

[sbj]

Fiddle:

Also, "Does that mean that first they didn't have celiac and then they did 6 months later?"

Yes, it is quite possible that they didn't have it 6 months earlier. There's another poster here who is quite adamant about reminding people that celiac disease can occur at any moment and be triggered by a variety of things. I certainly agree that we don't understand all there is to know about gluten intolerance and celiac disease. It does seem to me that there is a clear dividing line and that is the auto-immune response (white blood cell reaction) present in celiac. I'll grant you that biopsies are imperfect (for sure) and blood panels are not always correct (but they are correct upwards of 90% of the time - depending on the test). The latest tests are extremely accurate.

I guess we are speaking somewhat past each other. I'm perhaps quibbling about a definition. And you are perhaps discussing a larger picture. We both agree that gluten intolerance and celiac disease are serious problems. I am stuck on those who claim they have celiac without a positive blood test or biopsy. It seems as if many simply disagree with the definiton of celiac disease as commonly accepted and want it to change. I understand your point even if I ultimately disagree with you - and that's 'fine'.

[veggienft]

The point of my post was to draw you into exposing yourself ......and you did. You asserted: "At the risk of starting some kind of flame war - which I sincerely hope does not ensue....."

It's truly apparent that's not correct, as is your assertion that celiacs are only accepted as people ruled in with two of the three available diagnostic tools. I'm not going to "educate" you by filling in your supposed lack of knowledge. It's merely obstinance.

You serve the cause better as a poster child for celiac ignorance.

Thanks. Carry on.

..

[sbj]

Gosh veggie - I think you are in violation of one of the board rules (but I don't mind).

I believe one of the purposes of a forum such as this is education, no? That's why I found this forum when I was first diagnosed - I had never heard of celiac disease before two months ago. I am trying now to learn how to live my life so as not to put myself in danger. I am thinking that this forum is a good place to get sincere and, hopefully, accurate advice. Also a good place to help others or to ask questions. I thought that was why we were all here.

In this case, I sincerely responded to a poster wondering whether they should gluten themself for a celiac diagnosis. I advised them NOT TO. (I'd think you'd be happy with that!) Then, for unknown reasons, you responded by quoting me and saying I was wrong. I think it only fair, in fact, appropriate to respond when someone has quoted you, no? I marshalled commonly accepted facts in the medical community to make my case. I don't think it's very cool to attack someone like you are (but, again, that's okay! Thick skin and all.)

No one could argue that I have been anything but polite and sincerely curious. I have no ulterior motives - other than education. I don't understand why my posts are eliciting such harsh response.

[Tim-n-VA]

These discussions often blend different questions which aren't the same:

1) Does a patient have celiac disease? That is a specific auto-immune reactions to gluten. Just getting sick when you eat gluten doesn't mean that you are having an auto-immune reaction.

2) How do you definitively diagnose celiac disease? Because celiac symptoms are varied between individuals and overlap with other diseases and tests can have false positives and negatives, it is not so much a clear yes/no as multiple items of evidence.

I had celiac disease long before any positive blood tests. If I took those tests today I'd likely have negative results because of being gluten free but I would still have celiac disease.

With a US system of being quick for lawsuits, I don't think it is at all surprising that doctors are hesitant to make a definitive diagnosis of celiac.

As regards this discussion, I think there are self diagnosed celiacs who really have an undefined "gluten sensitivity", not necessarily auto-immune. I think there are people with celiac whose doctors failed to diagnosis either thru lack of knowledge or due to being overly cautious.

[Fiddle-Faddle]

sbj, I think the problem is the defining of when one HAS celiac disease.

If you say that you only have celiac disease after the villi are damaged enough to show up in the endoscopy, then you're saying that the first, I don't know, 10 years of the mechanism of celiac disease occurring in the body and causing damage doesn't count as celiac disease! (did you follow that?)

It's like saying someone doesn't have cancer until they have a huge tumor.

The symptoms of celiac start well before villi damage occurs.

"The thing is, the celiac blood panel correlates to villi damage even in the absence of a positive biopsy. Right?"

WRONG!!! DH sufferers can have NO villi damage. The autoimmune response is not limited to the intestinal area, and can bypass it entirely.

That's why so many of us self-diagnose as celiac, and ask that you NOT get stuck on those who "claim" to have celiac without positive bloodwork or biopsies.

You wouldn't tell someone whose mouth and tongue swell up and blister from peanuts that they're not allergic to peanuts unless they've had a positive diagnosis from a medical professional, would you? And most medical professionals wouldn't say, "Oh, go eat peanuts until you have an anaphylactic reaction, THEN we'll call you truly allergic, but for now, it's just an intolerance, so you don't need to be careful!"

One doesn't need a blood test to prove that one is pregnant.

For those of us who have text-book celiac reactions to gluten, that's proof enough. And more and more doctors (like mine) are agreeing with this.

Think of it from another perspective--$$$$. A doctor can KNOW that his patient has celiac by the symptoms, but orders bloodwork--that's hundreds of $--which is positive. Now he really knows, but he says that he must confirm with an endoscopy/biopsy. Now we're talking thousands of $$$$.

The outcome for the patient is the same either way--a gluten-free diet for life.