Is Diagnosis Necessary?

[justlovlie]

Hi all,

 

Is an official diagnosis truly necessary for adults?  Aside from knowing with certainty, are there situations or reasons it would need to be official?

 

Here's why I'm asking.  My 4yo daughter is currently dx "presumed celiac", and we are waiting genetic testing results to offer us another good clue one way or other.  (Our family doc told us to go gluten-free for a few months to see if her digestive and other issues resolved, and unfortunately I followed her advice before learning that we should have had testing first.  Pedi GI says everything is screaming celiac except for the actual labs, so here we are.)

 

The rest of the household is mostly gluten free now as well since we've changed our cooking and habits for my 4yo.  This has led me to me realizing that I absolutely feel it when I do have gluten foods, now that I have so little.  I'm also realizing that the odd little issues and skin rashes I've had over the years but never inquired about could be related...and the not so little and hugely confounding health issues that have come up in the last 2 years could be related...and the Hashimoto's I was recently dx'd with could be related...etc, etc, etc.  There are many clues now apparent, and I wasn't even looking for them.

 

I guess I have two choices...start eating "normal" amts of gluten again and get myself tested in a few months.  Or just decide to call myself 'presumed celiac' and go off gluten, and not bother with testing.  The part that makes this much less black and white is that I'm currently pregnant.  I really can't in good conscience continue eating gluten while pregnant knowing how much better I feel without it - and feel as though I shouldn't eat it given that there's a chance that I have celiac, that it could very well be doing me real harm.  Obviously my daughter's genetics results will be very revealing, but I am left wondering if there is any practical reason why I should be diagnosed?  Should I even bother?

 

Thank you for reading, I appreciate any replies!

[Jmg]

Your post struck a chord, I feel like I'm in almost exactly the same situation, aside from the pregnancy of course!   I can't offer any advice as I'm still struggling with the same question.  I can see pro's and cons on both sides, even if I'm beginning to lean towards simply self diagnosing and getting on with my life, but I wish you and your family well. 

[kareng]

I wouldn't do a gluten challenge while pregnant.  That could harm or kill the baby.

 

Reasons to have a diagnosis as an adult-

- Helps with a reason to get your kids tested

- Hospital & other health care places should feed you gluten-free (some are still clueless about the gluten-free diet)

- Ever want to participate in research studies

- New medications coming out that will help digest a little accidental gluten - a doctor might not prescribe it because you aren't diagnosed.

- many people can't maintain a gluten-free diet for life, as is required with Celiac, without a diagnosis

- follow-up testing to make sure you are healing

-explains related medical issues - osteoporosis, infertility, miscarriage, etc.

[IrishHeart]

In addition to what Karen has posted, many celiacs require follow up care beyond regular checkups (blood work, other GI testing, referrals to an endocrinologist, possibly and also a dietician if needed) and a diagnosis will get you that easier than no diagnosis.

 

I am not the "norm" but I needed physical therapy, bone DEXA scan and follow up with a neurologist and it helped with insurance. codes and payments. I also had a follow up endo and biopsy and colonoscopy and I never could have afforded that out of pocket.  

[GFinDC]

There was a recommendation to not feed children gluten until they reach 6 to 18 months from some group.  Sposedly decreases the chance of the kid developing celiac disease.   Getting diagnosed can  open the possibility of claiming a tax deduction in the USA.  But it usually isn't worth the hassle to collect the receipts and it only counts the difference between normal gluteny foods and gluten-free foods.  so not much to begin with.

 

There  are reasons on both sides for doing a challenge or  not doing a challenge.  I agree tho, during pregnancy is not the time to do it and possibly cause a malnutrition problem.

[BlessedMommy]

I think that getting DX'ed is a more important for kids, than for adults. Adults have total freedom of choice to eat whatever they want and refuse whatever they want. 

 

I still would suggest that every adult who reasonably can, gets a diagnosis, because it is a lot easier to deal with other people if you have a DX. But you can eat a gluten free diet without one. Some doctors believe that patients won't take the gluten-free diet seriously without a biopsy, but in my case (see story below in my sig), I figured that if a $3,000 hospital bill wouldn't make me take the diet seriously, than a biopsy probably wouldn't do much better. LOL!

[justlovlie]

Hi guys,

 

I apologize for the delayed reply, life got busy!  Your answers to my question were just what I was looking for, thank you!

 

My daughter's GI doc called today with her gene testing and other lab results.  I probably won't get a hard copy with the whole scoop until her next appointment in October, but we did discuss quite a lot on the phone.  She has one copy of the DQ8 and "another lesser genetic indicator".  She didn't elaborate on the latter; I assume a partial copy or some such thing?  I will find out when we follow up in person.  In any case, we're still somewhat in the land of inconclusivity...obviously a positive genetic test (and not an incredibly strong one at that) is not proof of anything, just another clue.  I'd love opinions on my daughter's issues, and will make a new post.  Continuing to watch and wait and see at this point - but knowing that she does have the potential means that I potentially have the potential.  Ha!  So, knowing that I do feel better without, I will continue to be gluten free and discuss it with my doc at some point after the pregnancy.

 

Thanks again!

[Fenrir]

The advantages are that if you want to be treated for celiac and have a better chances of getting your claims paid by insurance you should have the official DX. If you are not DX'd as a celiac your insurance may not pay for some things or at the same rate. Celiacs need to be monitored for nutritional deficiecies and antibodies to insure diet is correct and some of the testing may not be covered unless you are DXd.

 

Like others have said, the other benifits might be that people are more likely to accomidate your needs if you have a confirmed medical condition.

[Questore]

I did not want to go through the hassle with my doctor to get a diagnosis...getting referred here and there, and then only blood tests, which only show Celiac when its really throwing antibodies into the blood, when not all Celiac diagnoses have antibodies in the blood.

 

I have decided to start out with the EnteroLab, and ordered everything on their menu...as I want to rule out everything they can test for except for acute colitus, since I am not bleeding into my stools.

 

They are testing me for antibodies for:

Celiac showing in the genes...only one panel, but I can get the other later.

Gluten (gliadin)

Tissue Transglutaminase,

Oat protein

Dietary yeast Saccharomyces cerevisiae (as a test for Crohn’s Disease),

Milk,

Egg,

Soy,

Corn,

Rice,

Sesame Seed,

Garbonzo Bean

Almond

Cashew

Walnut

White Potato

Pancreatic Elastase Stool Test (Fecal Elastase),(enzyme production function of the pancreas)

Intestinal Malabsorption Stool Test (Quantitative Fecal Fat Microscopy), (whether gluten sensitivity or another cause has impaired digestion and/or absorption of nutrients)

Triple Parasite Stool Test (Enzyme Immunochromatography Test for Amoeba, Giardia, and Cryptosporidium) 

Beef

Chicken

Pork

Tuna 

 

However, I plan to take the results into my doctor, and see what he says to what shows...I already have two auto-immune diseases...Diabetes Melitus II, and Fibromyalgia, and my niece is positive for Celiac, although she had to get to the Mayo Clinic to get a diagnosis, so my likelihood of sensitivity to gluten is high, while Celiac may not show until I get deathly ill, and I'm not waiting for that. 

 

I think of all the bad years I've had because of bad digestion, and everything that is wrong with me relates to other things that are wrong with me, so going to my doctor without some ammunition is pointless for me.

 

But even if nothing shows, it will rule out a lot, and that is what I am paying for.  The gluten free diet is a given at this point...after a week of on wheat one day, and off the next, I can definately tell gluten bothers me significantly, as does milk. 

 

I ordered the tests today, and also went gluten free today as there is no difficulty about the stool sample not showing sensitivity to gluten if the antibodies are there...it is not however something you might want to do if you are not already showing strongs signs of multiple sensitivities, which I have been collecting since 1st grade.  42 years of increasingly bad health should have been noticed by somebody, had they cared to look.

 

The entire full set of tests costs $1,047.00 as a package deal...not cheap, but aimed at what I need...information.

 

My doctor may be unimpressed, but then, none of my doctors have ever been impressed by my constant, and increasingly difficult health challenges, nor diagnosed much of anything until it shows up blatantly in my yearly physical.

 

For those looking for just proof of gluten sensitivity, the basic test runs $250.00.