Scared Of Eating Gluten For celiac disease Test! Not Sure What To Do.

[Thi8]

Hi there! I'm new to the forum and I'm really hoping that I can find help here because I feel at crossroads here. I first suspected Celiac Disease 2 years ago when I began experiencing the following symptoms:

- bloating and gas

- extremely itchy rashes after eating gluten

- mood swings and depression

- stomach pains

- inconsistent stools which can be hard or loose, sometimes with blood in them

- extreme fatigue

- trouble breathing

- brain fog

I've been gluten free for nearly 2 years now and feel much better and happier. Although sometimes I accidentally eat gluten and get some of the symptoms again.

I've seen several doctors and had a blood test done which was likely a false negative since they told me I didn't have to be eating gluten prior to testing. I then saw my family doctor who does not know much about celiac disease. He referred me to a gastroenterologist. I saw her a few weeks ago. She said that if I want to get tested for celiac disease then I need to be on a gluten diet for 3 months. That's an extremely long time so I'm quite scared of what's going to happen to me. I'm still not sure if I want to go through with the test. The doctor at the clinic on my school campus recommends that I go through with the test to confirm if I have celiac disease since it can lead to other serious illnesses like cancer. He also believes this will end questions about whether I truly have celiac disease or not since it's still up in the air.

At the moment, I feel trapped and helpless. I just read that after being gluten free for so long, going back on a gluten diet for 3 months won't guarantee accurate test results. And frankly, I'm not willing to go through this torture for nothing. Also, I dont' know if there's a point in being tested if I know I feel better being gluten free. The only upside of being tested is that I'd know if I have celiac disease and also the tax breaks I'd get if I do since gluten-free food is insanely expensive.

Can someone please tell me if 3 months on a gluten diet prior to testing is recommended? I'm hoping to get others' opinions and advise concerning my dilemma. I feel so helpless! Any help at all would be much appreciated!

[gfp]

Hi there! I'm new to the forum and I'm really hoping that I can find help here because I feel at crossroads here. I first suspected Celiac Disease 2 years ago when I began experiencing the following symptoms:

- bloating and gas

- extremely itchy rashes after eating gluten

- mood swings and depression

- stomach pains

- inconsistent stools which can be hard or loose, sometimes with blood in them

- extreme fatigue

- trouble breathing

- brain fog

I've been gluten free for nearly 2 years now and feel much better and happier. Although sometimes I accidentally eat gluten and get some of the symptoms again.

I've seen several doctors and had a blood test done which was likely a false negative since they told me I didn't have to be eating gluten prior to testing. I then saw my family doctor who does not know much about celiac disease. He referred me to a gastroenterologist. I saw her a few weeks ago. She said that if I want to get tested for celiac disease then I need to be on a gluten diet for 3 months. That's an extremely long time so I'm quite scared of what's going to happen to me. I'm still not sure if I want to go through with the test. The doctor at the clinic on my school campus recommends that I go through with the test to confirm if I have celiac disease since it can lead to other serious illnesses like cancer. He also believes this will end questions about whether I truly have celiac disease or not since it's still up in the air.

At the moment, I feel trapped and helpless. I just read that after being gluten free for so long, going back on a gluten diet for 3 months won't guarantee accurate test results. And frankly, I'm not willing to go through this torture for nothing. Also, I dont' know if there's a point in being tested if I know I feel better being gluten free. The only upside of being tested is that I'd know if I have celiac disease and also the tax breaks I'd get if I do since gluten-free food is insanely expensive.

Can someone please tell me if 3 months on a gluten diet prior to testing is recommended? I'm hoping to get others' opinions and advise concerning my dilemma. I feel so helpless! Any help at all would be much appreciated!

I feel very strongly on this so sorry if this sounds strong. I very much doubt your doctor would put themselves through this or their child!

What your doctor is asking is for you to deliberately go and damage an internal organ.

Smoking also causes cancer... imagine going to the Dr. and saying your concerned because you have chest pains etc. your so concerned you quit smoking for 2 years and they x-ray you and find a suspect lump.... then they biopsy and find its benign. Would your Dr. then suggest you go back to smoking?

Eating gluten to damage the intestine enough simply to get a 'test' is IMHO beyond sick. Any Dr. who even suggests this should be sued until they end up begging on the street. I can't express how SICK this is...

I once read one medical paper written by a Dr. who spent seven years giving what was initially a young child repeated gluten challenges and 7 years later he got a positive biopsy.

How he could publish this is beyond me... this sort of behaviour should end in nothing less than a very long custodial sentence for the MD. The actual aim of the gluten challenge is to damage the intestine sufficiently to be found on a biopsy.... If this wasn't real life I'd be convinced, its the sort of thing House would do with a throw away statement like "it will either kill them or we get the diagnosis"

In this 3 months you will be wrecking your villi and they might never heal (unlikely at your age but possible) and also taxing your thyroid and immune system risking neurological damage and cancer ... and If the test is positive the result will be (wait for it) A gluten Free diet.

[celiacgirls]

You do have to be eating gluten for the testing to be as accurate as possible. Even then, a negative result doesn't mean it is okay to eat gluten.

Personally, I wouldn't do it. You could do Enterolab testing which I think would be enough to get the tax break. The tax break isn't very much anyway, if you are in the US. You can deduct the difference in the price of the gluten-free food over regular food after your total medical expenses exceed 7.5% of your adjusted gross income. Only if you itemize.

I think the increase in cancer from celiac disease is mostly from not being on the diet. You are on the diet so it won't matter. Even if it is not from eating gluten, the treatment for celiac disease is the diet. There isn't anything else you can do.

My mother went back to eating gluten for a while to do the test and it was negative. She has never been able to get back to the very strict level she was at when she started.

[Ursa Major]

I completely agree with gfp. Any doctor who tells you to purposely destroy your villi for a test should be sued. Because this 'gluten challenge' could be causing irreparable damage to your neurological system, your digestive system, and glands like your thyroid or adrenal glands.

Not to mention possibly causing severe depression and other emotional problems.

It is a completely callous, insane idea. Please don't do it. You already know gluten is poison for you. Why don't you just leave it at that and go on your merry gluten-free way?

[Fiddle-Faddle]

I agree with everyone, and I want to add that the gluten-free diet is NOT insanely expensive!! Only the gluten-free convenience foods that substitute for the (already) unhealthy gluteny convenience foods are insanely expensive.

Fresh fruit, fresh vegetables, frozen vegetables,canned vegetables, fish, chicken, beef, rice, potatoes--NONE of these are insanely expensive. In fact, they are all much cheaper than take-out pizza, take-out Chinese food, Quizno's sandwiches, and McDonald's take-out--which is what most of America is living on.

If (like most of us) you are occasionally desperate for pizza, or brownies, or chocolate chip cookies, or a good piece of bread, then it is not expensive AT ALL to make them from scratch, nor does it take a ridiculous amount of time unless you make them for every meal.

There is a recipe floating around here for flaxmeal skillet bread that tastes as good as any gluteny bread I've ever had--and start to finish, it takes less than 30 minutes. I can make a very good pizza crust from scratch and have pizza on the table in the same amount of time that it takes to get one delivered.

I have 3 children and a full-time job, so it's not like I am suggesting anything that I'm not doing myself!

So--any other reasons why you would want to consider destroying your villi for an invasive test with lots of false negatives?

[BRob66]

Have you considered seeing a naturopathic doctor??? i just tested positive for celiacs through blood work and a saliva test. My levels were extemelely positive even though i have been gluten free for 2 months. i agree with the rest,,,don't do that to your body. There are alternatives,,,good luck

[gfp]

It is a completely callous, insane idea.

It really is.... I honestly think if we looked at this out of context it is the sort of thing you would see on a TV programme like house!

1/ We have a patient becomes ill when eating gluten

2/ (optional) We have blood tests showing this

3/ We have a patient respond well to a gluten-free diet

4/ We ask the patient to damage themselves so we can have a 'golden test' for our diagnosis

5/ We do a biopsy... its either positive or not certain. So we either continue to subject the patient or not.

6/ Regardless of 5 we are back where we started ... a gluten-free diet.

The only value of a biopsy is to check for any other damage .(and this does not require eating gluten) .. even if its genuinely negative (not a false neg which cannot be sure) then what does it mean... there is a large (I would say very large) chance the patient will eventually develop enough damage to be positive if they keep eating gluten.

In the meantime... as Ursa said, neuro damage, depression, thyroid problems ... can develop.

If this was any other disease it would seem crazy to deliberately make a patient ill to diagnose what cannot be treated other than a gluten-free diet.

If it was something required drugs with a lot of (potentially dangerous) side effects then obviously that is different ... but it's not.. there ae no drugs, just a gluten-free diet which is perfectly healthy ... and if 1:1000 are incorrectly on a gluten-free diet because of lack of testing ??? Its not like they are taking a dangerous drug ... they will probably have a healthier diet gluten-free anyway and no harm is done.

[dadoffiveboys]

I have a now 3 1/2 yr old (2 1/2yr old when he stopped eating solid foods due to gluten) in which they did all the tests and came back NEGATIVE. He was in the <1 th % weight and diagnosed as failure to thrive dropping off the curve for both weight and height dropping two levels on the growth curves in 4-6 months. He has now been gluten-free for 8 months....

In that time (8 months).. he has gone from 24 lbs to 32 lbs (YES 8 LBS!) and grown 4 INCHES! :)

Do I have a doubt it is the gluten which caused his problem? Absolutely not. He is very healthy but still scared to eat normal food because of the pain it caused him when younger. The doctor asked us to keep him on Gluten while they were working up to the biopsy.. which we did for a little bit until my son STOPPED EATING solid food and was complaining of pain all the time. So when they asked if he was eating gluten I said no because I wasn't going to force him to eat it if it hurt him. Yes.. so all his tests were 'negative' but at the highest end of normal. With a TTG of 20 (20 being the highest end of normal) and eating NO GLUTEN AT ALL.. I assume he has celiac. The diet is the confirmation and the doctors can't refute that he went from the 20th percentile in height to the 75% (yay!) and from the 1th percentile in weight to the 20th percentile in 8 months. I'm just glad I found this out before permanent damage occurred.

Oh.. btw.. after his negative tests the doctor said "It's ok to still feed him Gluten because I was wrong and he doesn't have celiac". I followed up with the gluten-free diet.. sent the results to the SAME doctor (which I'll never see again) and he said "oh I guess you were right but he doesn't have Celiac he's just allergic to Gluten". WHATEVER! Anyhow.. I keep finding more friends who test negative and have problems.. so the doctors tests are only good for positive. IE if you test positive.. you have Celiac. If you test negative - it means nothing.

[Offthegrid]

You've been on a gluten-free diet for 2 years. You feel better. What more proof should you need?

I think a responsible doctor would write whatever note you may need for tax purposes. I personally have a note that I carry around from the doctor that says I need to travel with food (just in case some stupid movie theater or amusement park manager decides to give me a hassel). I declined the biopsy.

[bluejeangirl]

I'm in the same situation and all I can say is I did'nt want to damage what I've spent so long (2years) healing. We buy our own health insurance and the deductable is very high so we would have to foot the bill for most of the tests. So that makes me not want to do it. Then I'm not sure if having the diagnosis would be smart just because your considered a risk for cancers. Health insurance is so high its insane even if your consisdered health.

So save the villi from damage and yourself from pain and forget what a doctor writes on a piece of paper. I agree its not worth it for tax purposes.

Gail

[hathor]

Short of the unlikely or marginal tax benefit -- which would be offset by the need for a lot of record keeping (your time is worth something too!) -- it makes no difference if you are "celiac" or not. I don't see the point of feeling lousy and potentially injuring yourself just to satisfy some doctor's curiosity.

Yes, celiac can lead to serious problems IF untreated. The way to avoid those problems is not to eat gluten. What happens if you continue avoiding gluten, even if you aren't celiac? (Not that people are that certain what the risks are -- some believe there are serious consequences to eating gluten if one has non-celiac gluten intolerance, too) Let's see -- you "feel much better and happier," but some clinic doctor won't have a test result to put in your file. Either way, whether you are celiac or not, the best thing for your health is not to eat gluten.

I don't see any reason to eat the gluten to get tested if the test result will not change how you eat whatever the result. I think some doctors just have a problem going with anything that relies on what the patients tell them -- they want some test or other.

There are plenty of false negatives too and I'm not sure that three months would be enough, after being gluten-free for two years. So a negative test would not even serve the purpose of eliminating uncertainty.

This sort of reminds me of what I went through several years ago when my knee suddenly and inexplicably froze, with a great deal of swelling and pain. X-rays and MRIs were inconclusive. The doctor wanted to do surgery to look around and see what was wrong. While waiting for the surgery date, though, I was getting physical therapy and my knee continued to improve. I cancelled the surgery because I saw no reason to do it just to satisfy curiosity or have some definitive, documented explanation in my medical chart. The surgeon got angry with me. But later, when my knee was completely better, he said he was glad "we" had decided against it.

I know it can be hard to go up against what a doctor tells you to do, particularly if you are young. (Not that I was, when my knee went kerfluey ) But remember that the decision is yours because it is your body. You don't have to convince your doctor of anything. He has to convince you. If he doesn't -- and it sure sounds that way given what you have said -- don't do the gluten challenge.