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Turns out, my doctor only ordered TWO tests...

Ender

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Ender Apprentice
Ender
Posted

I called my former doctor's office yesterday to get a copy of my last lab results because they never gave them to me. I'd scheduled an appointment at a new clinic and wanted to bring copies of all my lab work to the appointment. After I received it, I took a second look at my celiac panel and saw this: TTG IgA and Endomyosial IGA.

*record scratch*

Err...where's the rest of it? :blink:

Reading the boards, I've learned that a proper celiac panel consists of FIVE tests. I was glad I didn't have celiac because I did harbor some hope that since I wasn't celiac, I might have something else that would clear up eventually and then I could enjoy lovely bread and bagels again.

Now I don't know what to think. :ph34r:

I'm not sure what this changes. I still don't think I have celiac. I suspect that I have non-celiac gluten intolerance because my symptoms clear up way faster than everyone else's on these boards and my most vexing symptoms are my numb/tingly limbs and insomnia (though I do have stomach problems too and have lost quite a bit of weight, still losing in fact). Also, within a few days of going gluten-free, I felt much, much better. Celiacs don't feel better after a few days. It takes months, years sometimes, right? I don't want to be that blunt to a new doctor because...well, we all know how docs are about this stuff. I figured I'd ask you guys instead because I've learned tons reading old threads and asking questions. So what advice would you give me? I didn't have the full panel and at the time of the test, and I'd only eaten gluten consistently for two weeks. Two weeks before that, I'd been on the FODMAP diet, consuming no gluten except what came in soy sauce etc. For the previous three months, I'd eaten it off and on...perhaps no servings for a few days if I'd made a pot of rice, perhaps once or twice a day if I baked some bread. So...I just don't know. The only thing I do know, is that I refuse to go through a gluten challenge. This is the second time I've asked a doctor for a celiac test and the second time they've f$#%ed it up (the first tested me for a wheat allergy, NOT celiac...I didn't know it at the time though). :angry:

In any case, I made a new appointment at a new clinic with a new doctor/PA for Monday. The doctor's focus is internal medicine and the PA has a few years experience focusing on gastroenterology according to their website. I need to know where to go from here, especially since I'm reacting to other foods (albeit waaaaay more mildly than from gluten) and still losing weight.

As always, any advice/knowledge would be appreciated. B)

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Judy3 Contributor
Judy3
Posted

I have Celiac and I must say I felt better after 3 days on the gluten free diet.. Yes the damage takes much longer to heal but the initial symptoms were better in just 3 days..   So it's not impossible.    My tests all came back negative at first until they did the genetic testing and biopsies.   My doctor told me that there are only two things that can make a person's insides look like raw meat  Cancer and Celiac and at that time he had already done the biopsies for cancer so he knew it wasn't that and was convinced it was Celiac.  The second biopsies and genetic testing proved him right so I have been gluten free since that day (5 yrs now) and never felt better. 

Ender Apprentice
Ender
Posted
  • Author

:blink: Oh really, now? :huh:

I've been thinking celiac was rather unlikely since I've gotten such good results on the gluten-free diet. Should I push for an endoscopy/biopsy then? 

notme Experienced
notme
Posted

not only is celiac difficult to diagnose, the medical community loses alot of $$$ if that is indeed what is wrong with you.  an undiagnosed celiac sufferer is a gold mine because your immune system isn't working properly, so you will be susceptible to many other things.  it is also a future gold mine, because chances are that you will develop other more serious complications are pretty certain.   it's my conspiracy theory that they really don't want to dx us because they will lose a ton of money.  

 

i used to get pneumonia, for example, every single year.  without fail - as soon as the weather started to change down here and the holiday stress started, i would get sick and have to take super duper antibiotics.  in the past 5 years (since i have been feeding my body the right 'fuel' and absorbing my nutrients and vitamins) i've not even caught the flu.  not even a sniffle.  because my immune system is working like a boss.  my husband even got knocked down with that nasty virus last year and spent 3 days in bed - NOTME!  lolz  :D

 

just sayin'  :)  good luck!

Ender Apprentice
Ender
Posted
  • Author

I've no doubt that some doctors (and dentists) are like that. :P 

However, I tend to use my own alteration of Hanlon's Razor in these situations: never attribute to malice that which is adequately explained by ignorance or laziness.

dsharr Newbie
dsharr
Posted

:blink: Oh really, now? :huh:

I've been thinking celiac was rather unlikely since I've gotten such good results on the gluten-free diet. Should I push for an endoscopy/biopsy then? 

I would think the opposite: good results on gluten-free diet = gluten intolerance. An endoscopy/biopsy may show nothing, depending on how long you've been on the diet and your villi have been healing. Better to request genetic testing.

Ender Apprentice
Ender
Posted
  • Author

I should have said QUICK results rather than good. 

I've read about genetic testing. I'm interested in seeing whether or not I have one of the genes (though if 40% of Americans do, it's fairly likely). Where would I go to get genetic testing though? 

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