Gluten Challange

[Guest melannen]

So about a year ago I became suspicious that all my health problems might have something to do with gluten. I convinced my doctor to run some blood tests, I had to really twist his arm. I can't think of which tests he ordered but I know it wasn't the full celiac panel...

Anyways, they came back split down the middle, one was positive, the other negative. My doctor told me to try going off gluten to see if it helped. It did and I felt soo much better! Now I'm thinking I should try to get properly diagnosed and have a biopsy. I know you have to be ingesting gluten (I remember reading somewhere that a month is recommended as a minimum) so next month I will be starting my gluten challenge.

My question for you is: Should I gradually reintroduce gluten over a period of days? Or just bomb and eat an entire pizza?

Also, I'm open to any opinions about whether or not I even need to be diagnosed by a doctor. I have had no problems sticking to the diet once I got the hang of it, I just wonder if it would be better to have it notated in my medical records to avoid problems in the future.

I've been going back and forth about this for a couple of months. Honestly, I'm scared to start eating gluten again. I've been told that it's affects are worse after you've had time to start healing....I'm worried about how it'll affect me now that I feel so much better.

[AndreaB]

If you decide to do a challenge to be tested it would have to be for a minimum of three months and eating the equivalent of 3-4 slices of bread a day.

Penguin on this forum did a gluten challenge recently and now is allergic to wheat on top of being intolerant. She breaks out in hives if any gluten touches her. There is a website another user posted. I think it is www.glutensensitivity.net. They have a story about there daughter. I haven't read it yet but something happened to her on her challenge also.

I, personally, don't think it is worth the risk of something worse developing. If you are satisified and can live with not having the biopsy then continue gluten free and healthier. Many people have mentioned problems with insurance with an official celiac diagnosis. It seems like the gluten intolerant label goes over better with insurance companies. This is from things I've read on this forum.

[Guest melannen]

Many people have mentioned problems with insurance with an official celiac diagnosis. It seems like the gluten intolerant label goes over better with insurance companies. This is from things I've read on this forum.

So having the "label" of celiac could potentially cause problems? It seems like I heard you can get a tax deduction but you have to get a doctors note saying you're celiac, so that could be good. But is that enough to compensate for the insurance trouble??

I hope that made sense; I'm just thinking out loud/rambling....I need to shut up and go to bed

[AndreaB]

So having the "label" of celiac could potentially cause problems? It seems like I heard you can get a tax deduction but you have to get a doctors note saying you're celiac, so that could be good. But is that enough to compensate for the insurance trouble??

From what I've read on this forum, the tax deduction is only for the cost over what the cost of gluten food would be. I've also read that that could be a flag for an audit. I'm assuming you would have to have a certain amount (like medical expense deduction) before they would allow the deduction.

[ravenwoodglass]

If you feel the need for the gluten challenge do it cautiously. As another poster said you would need to be consuming a fair amount over a 3 to 6 month period to get a possible positive result on the endoscopy. If you choose to challenge and you have been gluten-free for a bit your body may react VERY violently to the challenge. It is up to you whether you can take the pain for the sake of an official confirmation. You also need to be aware that you may still have a false negative on the endoscopic exam even if your consuming gluten.

In the US you can get a tax credit for the cost of the special gluten-free products that are over the amount of regular food. For example if your gluten-free bread is $5 and poison bread is $2 you can deduct the $3. You could only do this if you itemize and it is considered a medical expense so the rules for medical deductions would apply. In my family we did the reciept saving for a couple of months then realized we were saving so much on our actual medical expenses, our copays on medicals dropped from about 17 grand a year to less than $300, that we would not be able to deduct anyway. The supposed expense of the gluten-free diet for our family didn't turn out to be a reality. We consume mostly whole unprocessed foods and my food expenses are actually less now than before being gluten-free.

[Shalia]

Someone else posted this type of response to a gluten challenge thinking, and it *might* help you here.

WHERE ELSE in medicine are you going to be told to deliberately damage an internal organ that's healing in order to prove something to your doctor? Would a doctor tell someone who has high cholesterol that they should "start eating high cholesterol foods so we can find out if you have dietary high cholesterol or genetic high cholesterol, because I'd sure hate to make you go on a low cholesterol diet without knowing whether or not it's your diet that's causing the problem. However, you *could* have a heart attack, you *could* have permanent damage, you *could* have all sorts of horrid stuff happen, but it's important that we know it's your diet before we take away your tasty food."

Of course not. We'd sue that doctor for malpractice. And that doctor would just put the person on a low cholesterol diet anyways.

So why damage, potentially permanently, a vital internal organ? Just to prove a point to a doctor? That doesn't seem like the best of reasons to me.

Shalia

[CarlaB]

I would not do a gluten challenge ... actually, I did one, for too short a time and my tests were negative anyway, so I was sick for six weeks for nothing. If you know you're sensitive to it and aren't going to be eating it, it really doesn't matter how progressed the intolerance/disease is .... why would you want to make it worse before you make it better? Yea, I know, I did one, but that was before I found this place!!

[Guest melannen]

Thank you all for your replies! You've confirmed what I knew in my heart all along. Unless someone finds a way to force gluten on me, I'm never going back!! I was really stressing over this, now I can breathe again

Shalia - I like that way of looking at it, I'm going to use it when I tell my friends I've changed my mind. They were going to throw a "gluten party" (watch movies, stuff me with pizza, and watch me get sick )

Hugs to you all!!

[tarnalberry]

A couple things:

1. the tax deduction is only for the cost above and beyond regular food costs, and it's debateable if it's legal, since you don't have to spend that money (bread isn't necessary, you can eat rice instead, for instance). other caveats on the tax deduction - you have to be able to deduct medical expenses, meaning that you spend at least 7.5% of your AGI on medical, and it's a flag for auditing, and you need a doctor's note and to keep all your reciepts in the event of an audit.

2. some people have reported difficulty with insurance companies and getting private insurance after being 'labeled' celiac. on the other hand, there are sometimes difficulties getting accomodations if you don't have a doctor's note.

3. you don't need an official diagnosis to change your diet.

4. commonly cited numbers are, as mentioned, three months of 3-4 slices of bread a day (for adults) prior to biopsy to give the best odds of not getting false negatives on a biopsy.

5. how you respond to a gluten-free diet is the best test (even most doctors tack this on, at the end of their schpiel, if they're up to speed on the condition)