Self Diagnosed and curious

[atheresa]

I was told by my endocrinologist (hypothyroid) that I have insulin resistance. Two years ago I did an elimination diet and discovered that gluten seemed to be the source of all of my health problems. Headaches, 15 years of diarrhea, depression, fatigue. All gone. I have stayed off of gluten since then, and seldom have a problem with contamination. I have often wondered if I have celiac, or just an intolerance to gluten. Does it matter? Is there a way to get diagnosed now? Does a diagnosis make any difference, or is it ok that I just avoid gluten? 

[bartfull]

The only way to get a diagnosis now would be to do a gluten challenge. (Eat gluten for 12 weeks.) The only reasons to put yourself through that would be if you have kids (so you can get them tested), if you are in school (so you can force them to feed you gluten-free foods), or to possibly cover yourself should you have to go to the hospital or a nursing home. (Otherwise they'll feed you a gluten diet.)

[atheresa]

Thanks Bartfull. I do NOT want to eat gluten again. I would have to take Immodium and an antidepressant again. I am ok to just continue this way if it doesn't matter.

[nvsmom]

Perhaps ask your doctor for a diagnosis of non-celiac gluten sensitivity (NCGS) and possible celiac - just so it's in the records.

I too have IR and hashis.  I really enjoyed Dr Bernstein's Diabetes Solution book as a guide to how to change my diet.  Good luck with it.  :)

[Boatguy]

On 11/6/2015, 2:14:03, bartfull said:

The only way to get a diagnosis now would be to do a gluten challenge. (Eat gluten for 12 weeks.) The only reasons to put yourself through that would be if you have kids (so you can get them tested), if you are in school (so you can force them to feed you gluten-free foods), or to possibly cover yourself should you have to go to the hospital or a nursing home. (Otherwise they'll feed you a gluten diet.)

I am self diagnosed. I would never voluntarily subject myself to gluten. The damage gluten does to me is devastating. The pain is simply intolerable. It is quite enough to be accidentally exposed to gluten on occasion.

[MsMarginalized]

This disease is SOOOO frustrating in so many ways: The sheer cost of "gluten free" alternative foods. The run around we get from family, friends and restaurant employees. The time we spend in the bathroom fighting cramps, in a darkened room fighting one of "those" headaches. The grieving we go through every time a Papa John's/Dunkin Donuts/Pillsbury/Keebler/Oreo commercial comes on. Then there are the commercials that poke fun at "gluten free" eating (Holiday Inn and Audi come to mind right off the bat). And let's not even mention the lunk-head celebrities who think gluten-free eating is a good weight loss fad diet!

The fact is there IS another medical test you can request from a Doctor. It's kind of costly, though. The genetic testing will show if you have the Celiac markers.

The question is: should you pursue a  medical diagnosis? ABSOLUTELY! Why? Validation. The fact is, you DO NOT KNOW FOR SURE. Yes, you do have a reasonable hypothesis. You even have 99.99% positive results from eating gluten free. But the practice of medicine is an ART and not SCIENCE. American Doctors are SOOOOO far behind on the curve with Celiac disease! They didn't even routinely test for it even 15 years ago (& some won't even, now!) Why? Because they were under the impression that it was "a wasting disease" so, to have it, the patient HAD to be emaciated by definition. And most Americans are NOT.

I hope my post helps you & anyone else in the future reading it. It really is important to know for sure, and The ONLY way to know for certain IS by medical testing.

 

[maseymn]

The only reason I can see for doing a gluten challenge and getting a diagnosis, is if you think there's a possibility that Celiac is not what you have, which would mean you could then start eating gluten again. It doesn't sound like that's a possibility for you. I was diagnosed with a blood test and never had the small bowel biopsy, so I run into this a certain amount. I'll never eat gluten again as long as I live, so I'm not going to satisfy a doctor's curiosity. If it made a difference in medications and treatment, then it would be necessary; but the "cure" for celiac is a gluten free diet, no meds required. I wouldn't (and won't) risk my health and well being for what to me looks like no gain. My 2 cents worth.

[Beverage]

You could do the DNA test without ingesting gluten and making yourself sick.

The DNA test will show if you have the Celiac gene, the POSSIBILITY to develop this disease.  If it comes back NEGATIVE, you could NOT possibly have Celiac's, so  NCGS would probably be the cause of your symptoms when you were eating gluten.  If it comes back POSITIVE, you may or may not have developed Celiac's, but you have the potential to, and so staying gluten-free, especially with your symptoms when you were eating gluten, is a fantastic thing to do.  Also, this is a genetic disease, and blood relatives could also have the gene and should know, and if you test positive, you would be able to guide the ones you love to this possibility for them.  If someone has the gene, going gluten free before developing Celiac's will prevent this disease and all its malnutrition/malabsorbtion and other auto immune diseases that are more common with people that have Celiac's.

Not all Celiac DNA tests are the same, the prices vary widely, and don't always test the same bits of the DNA.  I found that the cheaper tests usually only test the most common, and the more expensive ones test more.  You have to make sure that the company tests the full thing.  There are a lot of good articles about it.  

I was diagnosed by a naturopath doctor based on gluten senstivity that showed up in my blood tests (which does not prove Celiac's, but shows at least gluten sensitivity), plus signs of malnutrition/malabsorbtion.  The blood tests do require that you are eating guten, so not an option for you unless you want to do that, and given your own results, isn't necessary in my opinion.  I did not want to go through an invasive biopsy of the upper colon to prove Celiac's (this requires eating gluten also and since the places where the damage in the intestines are can be spotty, does not necessarily prove you do not have it, could be that it was missed, but if the damage is found it is a conclusive positive of Celiac's). 

So I went with getting the DNA test, which I tested positive for on one of the lesser common bits of the DNA, and that was enough for me to mentally set in my mind that the Naturopath is right and I have Celiac's, and that staying gluten free for the rest of my life was my path to better health.  This reality is helping me stick with the program so to speak.

I got my Celiac test done by Open Original Shared Link  It cost me $249 (test name is "Celiac Disease DNA Test, HLA-DQ Alpha and HLA-DQ-Beta").  They are in Canada.  I paid extra to have the swab kit sent to me Priority, and it arrived within a few days.  There were instructions in the swab kit about sending the swabs back by Priority, which I didn't do (it took almost 2 weeks to get back to them, and the waiting was excruciating), but given how long USPS took, I would do it that way.

GOOD LUCK TO YOU!  B.

 

 

[bartfull]

Hi Beverage. Could you tell us what blood test it was that showed gluten sensitivity?

[Beverage]

It was part of a 95 most common food allergens panel, which looks for antibodies to different foods.  It showed me high in all dairy (which is common for Ceiac's because of the damaged intestines), and also in Barley, Gliaden, Gluten, Malt, and Wheat.  Most everything else was fine.  I got this through the Naturopathic doc...a traditional doc never in 20 years of gradually increasing jcomplaints and problems ever ever ever suggested this kind of testing and the ND figured it out after 1 office visit and the results of this one test.  Sigh.

[bartfull]

Ah, but that is a test for allergies, which are a totally different thing from sensitivities. Allergies are most often breathing and hives related. Sensitivities are the things that give celiac-type symptoms without the villi damage.

Now that being said, if you have true allergies to certain foods, you should have an epi pen. Even if your allergic reaction to something is mild, the next exposure could put you into full blown anaphalactic shock which can kill you.

[Beverage]

Celiac's is an auto-immune disease that does cause the damage to the villi in the upper intestines, right, not just a food sensitivity.  The results of this test panel were used as an indicator, according to the doc.  It was the malnutrition/malabsorbtion signs in addition that he came up with the diagnosis.  Anyway, just trying to help atheresa figure out what to do next without having to get sick again by eating gluten, and the DNA test is what I suggest. 

Atheresa...keep us posted...I want to hear what you decide and how it all goes!  Good luck!

[bartfull]

I'm not questioning that you have celiac. With the malabsorption and other symptoms I'm sure your doc is right and you do have it. I just wanted to be sure that you know that test was for allergies and that you have an epi pen in case you should need it. I saw my Dad die from anaphalactic shock and I'd hate to think there's someone out there whose life might be at risk.

[Beverage]

Oh gosh, I am so sorry to hear that, how horrible!

No, I was just trying to clarify how I was diagnosed, since it was not with the biopsy.  So much to learn since I was diagnosed just this past June, and it can be so confusing.

I don't I have food allergies that have been discovered (so far), but I have had anaphalactic reactions to things I have inhaled (fresh wood chips in the garden, candles...), so I always have an epi pen handy, but you have reminded me to check those expiration dates!  ;o)

[bartfull]

Have you read the Newbie 101 thread in the coping section? It will cut down on some of the confusion. Also, please feel free to ask questions here on the board. We want to help.

That goes for you too, Atheresa. Sorry your thread got sidetracked.