Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Why to get a diagnosis?
0

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,872
    • Total Posts
      919,408
  • Topics

  • Posts

    • Help
      Ok so I had my colonoscopy & endoscopy last Thursday. Don't get results until July 13th as GI is on vacation. I've had bad pain in my lower left abdomen that wraps around to my lower back as well for the past 4 days..even hurts to touch lightly. Went back to the ER & they did an ultrasound & CT scan. The Doctor said that I have "prominent" lymph nodes in the area that is painful as well as thickening & inflammation of my Sigmond colon? Um ok what is that all about? Kind of freaking out over the whole swollen lymph nodes thing. Has anyone ever dealt with this before? 😒
    • Enormous Stool
      My 2 year old daughter has sufferd with extremely large stools for over a year. She will have a bm once or twice a week there has been blood sometimes i took her to the docs and they gave her some stool softner which didnt help they tried uping the dose which still didnt help and they told me it would eventually work which didnt she was then put on movicol which she was only supposed to get half a sachet still no diffrence i uped it to the the full sachet which helps a little she doesnt always have large stools but most of the time she does. She has got to a stage where she clenches and wont let it out because of how sore it is i try to put her on the toilet for it to come a little easier for her but she screams and will try hide herself in a corner and wont let you anywere near her it is heart breaking to watch her. If anyone has any in advice i would really like to hear.   Thanks.
    • Starting Over with GI Dr.
      Everything I have learned I have learned through this forum or simply from my last EGD results and labs and then looking them up on the internet.  The drs have given no information except for do a gluten free diet.  My understanding is that a repeat EGD is needed to confirm healing.  When I was tested about this time last year I was a Marsh3b.  Which in my research is pretty serious.  I am still having ill effects from god only knows what these days.  I went strictly gluten free June 2015.  I have had glutenings (not by choice) and the last one I had was because of an antibiotic that I took that has sent me through the roof with anxiety issues.  I try to be as careful as possible but it is like it doesn't seem to matter how careful I am I am either aching and hurting in my joints, tired all the time or OK one minute and the next feel like crap and that my world is about to end.  It is very frustrating to say the least when you go to the dr and you are expecting support or some sort of answer and don't get one.  I have eliminated milk from my diet as of about a month and a half ago.  That seemed to help, some.  But I still have days where I hurt and ache in my elbows and in my hands.  I have moments when I am about to freeze to death and sit with a heater and where I live the temps outside are 90+ degrees plus humidity and the AC is not even on.  Most of this has just started happening I would say in the past 4 months or so.  At night when I go to bed I wear sweat pants and a sweat shirt and sleep under 4 blankets and a sheet.  They say my thyroid is fine.  I feel like I have some issues with my nervous system but to be honest with you I haven't seen drs enough to mention this to them because all they are worried about is if I have diarrhea.  Cycling Lady I will be keeping any all records that I have and continue to gather the ones for anything I have done in the future.  .  I have been through health issues with my husband and would keep all of his records and labs so we would have proof.  Just seems like doctors don't care anymore.  The last GP I went to actually listened to me and I will see her again next month after the EGD.  I did give ALL of my records, EGD, labs, medical records, etc. to the new GI prior to our first visit back in January.  She said she reviewed them.  And told me we would re-draw the labs and schedule EGD to check healing when I went to her this month.  We have scheduled the EGD but no mention of labs.  JMG I am having the procedure re-done so that I can see if I am healing.  Mostly because of all the ailments I still have or seem to be developing every day.  I used to be a person who could remember things and get things accomplished but lately that has not been happening and scares me more and more every day. I understand that no procedure is risk free.  I have had 2 C-sections, wisdom teeth removed and tubal ligation.  Each one had its own issues after they were done.  I am a person who has to see it to believe it I guess.  If I don't see it, it is hard for me to understand it.  It is hard to figure this out when I am the one who usually takes care of everyone else but then when I need to be taken care of, nobody knows what to do.  I think that is it in a nut shell.  All that ya'll have told me is a big help.  Around here I have no support groups or even a good friend I can talk to about stuff that would even come close to understanding.  My husband will listen, but he doesn't understand.   
    • Loved ones with Celiac in nursing home
      It will be in Gluten-Free Living later this year, October I think
    • Prague Looks for Consensus on Adolescent and Teen Celiac Disease Management
      The Prague consensus report looks to shine some light on the best options for providing optimal transition into teen and adult healthcare for patients with celiac disease. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,906
    • Most Online
      1,763

    Newest Member
    staceyO1
    Joined