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Why to get a diagnosis?
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14 posts in this topic

Hi everyone, I was needing to know if there is a good reason to get "tested". I have been doing the homeopathic thing for a couple years and have found a consideral gluten intolerance. When reading the definition of Celiac, I have all the symptoms except the dermatitis, ie. depression, anxiety, constipation, bloating, gas, mouth ulcers, etc. I have been gluten-free for 1 year now and ALL of those things have gone away!!!!!!!!!!!!! I have never been formally diagnosed with Celiac, and was wondering if there is a need. After all, there is no cure, except for what I am doing anyway. I need your input, good and bad. Thanks, Debbie

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Hi Debbie, welcome to the board!

In my opinion if you have been on a gluten-free diet for a year and all the symptoms of celiac disease have disappeared in addition to your feeling better I would continue the gluten-free diet and not worry about getting tested. Why mess up a good thing, right?

You are right there is no cure except for what you are doing and you would have to gluten load for a month or more for the tests. If you could convince a doctor that you think you have celiac disease and need to be tested. Even then there is a possibility the test would come back negative. Do you really want to do that and have all your symptoms return? Personally for me my symptoms were SO terrible I would NEVER put myself through that again!

Of course if you need validation for family, friends, school or work then I would suggest Enterolab . You could always email Dr. Fine and ask him how long you would have to eat gluten in order for the stool test to come back accurate.

I hope this helps you. I think you are very smart for listening to your body and taking care of it!

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Hi Debbie,

After a year gluten free, there really is not point to bother with conventional testing, but Enterolabs is good, if you want to know "for sure". They can do a gene test, it costs around $150, and if you wanted they could also do a stool panel test to check for antibodies to gluten in your stool. Now this stool panel may very well show that you are not producing any antibodies, and that would be good, since that would mean you are 100% gluten free. The gene test would not tell you if you actually had celiac disease, but it would tell you if you carried one (or more) of the two main genes know to be responsible for Celiac Disease. Knowing you have the gene, and that all of your symptoms have improved so much on a gluten-free diet, should be enough to know for sure. There is no point in damaging your intestines again just to get a blood test and/or a biopsy, that are known to be unreliable anyhow.

One question though, do you have kids? If not, if you ever do have any kids keep in mind that they could also have the gene and possibly get sick with the disease. I personally did both the Enterolab tests and the conventional tests, since I had not been gluten free yet, and needed someone to believe me that I had the disease, so that I could get my 3 kids tested. They are all symptomatic, but not terribly severe, so everytime I would go to the doctor their symptoms would just be brushed off. I feel a concrete diagnosis is important with children, since they are not able to be in charge of the food everywhere that they go (ie school, church, friends houses, parties, etc...) and a diagnosis for a child helps people believe that there is actually something there and the diet needs to be adhered to. Adults are responsible for the food they put in front of themselves, so I don't feel it is to terribly important for an adult to have that diagnosis unless they want it.

One other point though is that whether you get a doctors diagnosis, or you are self diagnosec, we still need to band together and make Celiac known to the general public and the medical community as a whole. Too many of us had to go for years suffering chronic illness until either some doctor stumbled upon the disease, or we found it ourselves. In Europe the average time between onset of symptoms and time of diagnosis is three weeks, and in the US it is 10 years. For me it was 30 years! This is just unacceptable.

I hope this helps you decide what you need to do. I think you are very wise to have realized what was wrong and take the steps needed to correct your health.

God bless,

Mariann :)

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There are several good reasons to be tested:

*Accurate Family Medical History

*To have a letter of diagnosis for travel outside of the U.S.

*To have a letter of diagnosis for tax deductions on food products

*Piece of mind :D

Just a thought (not meaning to sway one way or another) I have noticed that many people who do go through Entero lab have their regular medical doctors reject the diagnosis. You might want to go a more formal route? Depending on what you are needing a formal diagnosis for.

Best of luck!!

-Jessica :rolleyes:

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There are several good reasons to be tested:

*To have a letter of diagnosis for tax deductions on food products. -Jessica

Jessica,

Are you sure of this? It does not seem possible that you can deduct the cost of gluten-free foods when you can't deduct so-called normal foods when you are ill with any other condition. Don't we have to eat regardless of our medical conditions? We don't have to take medicine even when sick--though of course it helps, sometimes. Food probably should be considered medicine (the real stuff) but I for one am doubtful that the government will agree with Edison that we should let our food be our medicine and our medicine our food. Or was it Pythagorus who said that? Anyway, please let us know how we can check this out for ourselves. I'm sure you have done your own checking, and I appreciate your posting this information, but I'm wondering if your source(s) can be trusted. Thanks. --Aldo

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In the United States (not sure where you live) you may deduct the price difference between a normal product and a gluten free product. For example: if a normal loaf of bread was 1.50 and a gluten free loaf of bread is 5.00 you may deduct $3.50 on your taxes.

However you MUST keep all reciepts for varification.

As far as my sources...you can find them right here on celiac.com they have some wonderful pieces of information if you take the time to look.

Here is the text from celiac.com

Tax Deduction for Gluten-Free Foods as a Medical Expense for Diagnosed Celiacs Only See your ad here!

Site Sponsor:

The following guidelines were received from the Oct. 1993 CSA/USA National Conference in Buffalo, NY:

1) You can claim only the EXTRA COST of the gluten-free product over what you would pay for the similar item at a grocery store. For example, if wheat flour costs $0.89 per 5 lbs. and rice flour is $3.25 per 5 lbs., the DIFFERENCE of $2.36 is tax deductible. You may also claim mileage expense for the extra trip to the health food store and postal costs on gluten-free products ordered by mail.

2) The cost of xanthan gum (methylcellulose, etc.) used in gluten-free home baked goods is completely different than anything used in an ordinary recipe, so in the opinion of the IRS, the total cost of this item can be claimed.

3) Save all cash register tapes, receipts, and canceled checks to substantiate your gluten-free purchases. You will need to prepare a list of grocery store prices to arrive at the differences in costs. You need not submit it with your return, but do retain it.

4) Attach a letter from your doctor to your tax return. This letter should state that you have Celiac Sprue disease and must adhere to a total gluten-free diet for life.

5) Under MEDICAL DEDUCTIONS list as "Extra cost of a gluten-free diet" the total amount of your extra expenses. You do not need to itemize these expenses.

Suggestions:

1) You may want to write the Citations (as given below) on your tax return. Always keep a copy of your doctor's letter for your own records.

2) Your IRS office may refer you to Publication 17 and tell you these deductions are not permissible. IRS representatives have ruled otherwise and this is applicable throughout the US Refer them to the following Citations:

Revenue Ruling 55-261

Cohen 38 TC 387

Revenue Ruling 76-80, 67 TC 481

Flemming TC MEMO 1980 583

Van Kalb TC MEMO 1978 366

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Thank you all for your help. Yes I do have children. One was just like I was, he has been gluten-free for 6 months. It is difficult at school, but he takes his lunch everyday and seems to do fine.

To the person who said I may need a letter for traveling outside the U.S., why? That I guess is my main question. Are there advantages to having it "official". Say, I get put in the hospital for any unrelated issue, I need a gluten-free diet. Do I have to have a letter from a doctor to get it. This is the reason I need to know. Things outside my control that I cant see yet.

I see more of the disadvantages than than advantages. One disadvantage I see is having a pre-existing condition as far as medical, and life insurance goes.

And I aggree, I would never go through that gluten diet again for anything in the world, except my kids. If I need to for documentation, I will.

On another note, I was diagnosed by an altenitive medicine technition. She used a biomeridian machine, which tests your acupressure points. She also gave me a homeopathic drop bottle which has stuff in it to combat my symptoms when I accidentally get into something I shouldn't. She called it Phenolics. She takes the chemical compound of what I am alergic to and makes an "antidote". Most of the time it works like a charm! It doesn't take away all of the physical side effects, but it takes away the emotional ones. There are some times I can't find what I ate, and this helps. Just a thought.

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If you are going to travel outside of the U.S. and want to pack gluten free food in your suitcase you MUST have a letter that states your diagnosis. Most of the time they won't let you take the food with you if you don't. Seeing as it is so hard to find food while traveling (different gluten-free standards in different countries) most folks like to pack a few things to take with them.

-Jessica :D

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Thanks, Jessica, for the IRS info. (I'm surprised by it, but hooray, in this case, for the IRS.) Another good reason, as you say, for getting tested, especially if your family has several members with the condition. Aldo

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Hi,

I am just beginning a gluten-free diet--started off wheat free a few weeks ago, but still having problems. I have been reading extensively & have reluctantly decided that I am probably a celiac. My Dr. suggested it might be my problem & I brushed him off. NOT ME--I'm not going there.

Misery made me change my mind. Now my question is: If there is only one solution to the disease--going off gluten--& it works --why go through the expense & misery of many tests. Just wondering. Thanks

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Hi Arcy,

I decided to go through the agony of all the testing for confirmation of Celiac Disease. Personally for me, I was tired of going to the dr. and telling them I didn't feel well and for them to tell me I was fine. Like I was a hypochondriac. I wanted the diagnosis in my charts so I don't have to go through the whole thing whenever I go to the doctor. Luckily for me, I finally have a doctor who recognizes celiac disease and it's effects and is helping me get better. Further down the road, if I have another illness that pops up, the Dr. knows which direction to look for treatment.

Hope this helps!

Lily

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Unfortunately, I think the medical community has contributed to this dangerous "self diagnosis" trend by their unwillingness to accept the prevalence of Celiac Disease. For someone such as yourself, who has gone a year or more on the diet, it will be difficult to go back to gluten to get a diagnosis. But I think you should try.

The reason I say that is in addition to all the excellent reasons already mentioned, your doctors are going to blow you off about anything in the future that might be related to Celiac unless you have a diagnosis from "one of them". Also, in addition to the tax deductibility, even more beneficial is if your employer has a flexible spending account, many of those will reimburse you for the cost difference in the foods.

Another factor are some medications contain gluten. Will your doctors be willing or even think to prescribe gluten free medications if you do not have that Celiac diagnosis in your file?

Again, it is sad that people have to try to diagnose themselves. I don't blame you, I blame the medical community. Please try to find a Celiac experienced gastroenterologist and go talk to him about all of this.

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One other possible reason (this coming from a self-diagnosed celiac who isn't going back on gluten for a real diagnosis any time soon):

Some medications may have gluten right? Particularly generics, I would guess. But your insurance company may not cover a gluten-free alternative to a medication unless there is PROOF that you CANNOT take the particular one that they cover.

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Hi Mariann

You say that in Europe they diagnose in three weeks. What tests are they using there? Do they use the Enterolab or is in blood tests. If it is blood tests do you know if they are different than the U S? Or is it that the doctors just believe the patients symptoms and head right for Celiac?

Robin

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