Positive Blood Test - Didn't Even Really Notice Any Symptoms?!

[GFAnnie]

Wow!  Hi everyone.  I just found out this week that I have celiacs.  I'm a little shocked, considering I wasn't really noticing any symptoms, I just have a niece that has it, and I read an article about how women with untreated celiacs have very small babies!  So I mentioned it to my naturopath while at an appointment for my small baby (who I suspect has a gluten issue) and she said "Want me to test you?"  So I said "Sure!" not actually expecting a positive result.  So here are my preliminary questions:
 

She just did the blood test on me.  It was positive.  So that's that, right?  I keep seeing mentions of some kind of biopsy.  Should I get that?  Or is that only for when the blood test comes out negative but you still think you might have it?

I will say that ever since she told me on Monday, I have gone ahead and eaten gluten, since we shop on Fridays, so I told myself I'd give myself the week to prepare for this big change. I'm glad I did this because now I swear I AM feeling symptoms!  I am a classic "shrug it off" type, and the past few years of my life have been insane, to put it lightly, so I'm guessing I've been basically too distracted to notice what was going on with my body.  Obviously my symptoms are very mild compared to most of you though.

 

Also, I have a three year old who will be tested this week, though he is showing no symptoms.  It makes sense to do this now, I guess, because he has been eating gluten all along. After this week he will be gluten free with me, but I don't want to disallow things like cupcakes at parties, etc. if it turns out he doesn't have celiacs.

And last, how and when will I ever know if my one year old has it?  He was having major weight gain issues and eczema, so I cut out the little bit of gluten he was getting (mainly non-gluten-free oatmeal and barley) and he instantly started gaining weight and sleeping better.  He's still a peanut, and I don't want to go back to giving him gluten, so when and how can he be tested for celiacs?  My understanding is that he needs to be consuming gluten for quite a long time for the blood test to be accurate.

 

Oh I lied, one last question.  Since my symptoms seem to be so mild, how do I judge if I need things like gluten-free makeup, shampoos, if I can play with playdough with my kids, eat oats, etc?  It seems like people are judging that by whether or not they get symptoms.  I'm just not sure if I'd pick up on my very mild symptoms everytime I put on some makeup or used shampoo with some wheat deritive in it. 

 

All right, I'll stop here.  Thank you to anyone willing to take a stab at my questions!

 

 

[kareng]

Maybe you could post what tests you had done? and the results?  I'm afraid that many "naturopaths" do some unproven testing.  

 

This whole website has information form actual doctors that study and treat Celiac Disease.

 

 

Open Original Shared Link

[GFAnnie]

It was just a standard blood test that checked for antibodies, and she said they were there.  In my state naturopaths are very much licenced doctors.  Sorry I didn't mean to throw anyone off with that. I forget that in many states "naturopath" means nothing. She's an ND - the test went to your standard laboratory.  But she didn't go into detail as far as an official name for the test.  Like I said, this was all very unexpected so it's not like I had done my homework ahead of time.  She said it was rather ironic because people come to her wanting to be tested all the time, feeling like they have so many of the symptoms and they're always negative - then in comes me with no real symptoms except small babies and whammo - there arethe antibodies!

[kareng]

It was just a standard blood test that checked for antibodies, and she said they were there.  In my state naturopaths are very much licenced doctors.  Sorry I didn't mean to throw anyone off with that. I forget that in many states "naturopath" means nothing. She's an ND - the test went to your standard laboratory.  But she didn't go into detail as far as an official name for the test.  Like I said, this was all very unexpected so it's not like I had done my homework ahead of time.  She said it was rather ironic because people come to her wanting to be tested all the time, feeling like they have so many of the symptoms and they're always negative - then in comes me with no real symptoms except small babies and whammo - there arethe antibodies!

I would still get a copy of the blood test to make sure she did the standard ones. There are some that do not diagnose Celiac that non- MDs do. I just want you to be certain before you undertake such a big life change and take on a life- long diagnosis.

[GFAnnie]

Okay, thanks.  I'll be there tomorrow for my son's appointment so I'll get a copy.  How do I know if it's the right test?  All I know is that she said I "definitely have celiacs" based on the results. 

[kareng]

I gave you a link to a medical center. It might be good for you to look over that site. You could post the tests and ranges and results here, too, if you would like.

If your child is diagnosed with Celiac, you will want an official diagnosis. Many schools, hospitals, camps, etc will not accommodate without a note from an MD. Lots to think think about.....

[GFAnnie]

Sorry, I just saw the link posted by kareng. I will get a copy tomorrow and check it out. 

[C-Girl]

Okay, thanks.  I'll be there tomorrow for my son's appointment so I'll get a copy.  How do I know if it's the right test?  All I know is that she said I "definitely have celiacs" based on the results. 

I was in the same camp as you - I thought I had picked up a bug when I suddenly had diarrhea. The blood tests were a lark, even the gastroenterologist was stunned I had celiac as I had only just picked up the symptoms. The blood test should consist of four different tests - together they are better than 95% accurate for celiac disease according to the scientific research I have read. The biopsy will tell you how bad off you are - in my case, I had complete villous atrophy, meaning I'd had celiac for years without any symptoms.

 

I would take this very seriously and just give up gluten. Life isn't so bad without it, and I'm sure your children can grow up just fine without wheat/barley/rye etc. Clear out the whole house and go 100% gluten free! Otherwise you run the risk of serious health problems due to malabsorption of nutrients.

[GFAnnie]

Thank you coffngrl - I definitely will go the full distance with this. I have a feeling once I am gluten-free I WILL realize I was having a lot of symptoms.  I've had two babies in the past three years, so I think I've been attributing so much to not really getting a full nights sleep in the past three years!  It has also dawned on me that my periods (many of them) have been really heavy and really painful, but I wrote it off as just a post baby kind of thing.  Also have been remarking to myself that I must be getting a litle lactose intolerant as I've been feeling very bloated whenever I have dairy, but wrote that off with "lactose intolerance is really common."  Oh and floating poop - sorry, TMI - never realized that was a sign of a health issue either!  Now I'm kind of connecting the dots.  Also have had a lot of rashiness and skin issues, that I wrote off with "sensitive dry skin."  I'm guessing this all began around the time of my first pregnancy.  Crazy!  Glad to know I'm not the only one with a surprise diagnosis!

[NoGlutenCooties]

I too had no noticeable symptoms - other than having osteopenia at 40.  Celiac runs in my family so when I heard there was a blood test for it I asked my doctor to throw it in with my annual blood test panel - feeling confident it would come back negative because I didn't have any symptoms.  Sure enough - I have it.  They followed up with an endoscopy with biopsy to make sure nothing else was going on and the biopsy showed moderate to severe villi damage.  I was shocked.

 

That was 4 months ago.  I got the news on Oct 1 and haven't touched gluten since (barring one accidental glutening about a month ago - which felt like getting food poisoning).  I do feel better - have more energy, can get in better workouts without feeling drained, wake up faster in the morning (never been a morning person), etc.

 

So even if you have no symptoms, the antibodies are doing damage to your body.  My advice - go gluten-free - don't wait to start having symptoms.  Some of the symptoms are nasty!  And sometimes they don't show up until a substantial amount of internal damage has been done.

[KCG91]

Just chucking a similar experience in - I had no major gastro symptoms, although I wasn't feeling great but, attributed it to being run down (marathon training). Luckily I saw a very keen young locum doctor who tested me for coeliac. I was familiar with the illness but never, ever would have thought I had it. Now that I've been gluten-free for a few months and have begun to get problems with anaemia and other malabsorption under control I'm feeling so much better than what had just become normal. I feel like a souped-up version of 'old me' Hope you get some answers (and some sleep!) soon. 

[GFAnnie]

Well, I have a copy of the test results but I'm not really sure how to read it!  The tests done were the Immunoglobulin A - Tissue Transglutaminase AB, IGA.  The Gliadin (Deamidated) AB (IGG, IGA). 
Anyway, my three year old got tested today too so I'll be curious to see what happens. Hopefully it's just me.  And I have no idea how my one year old will be tested since I'm pretty sure he's definitely got a sensitivity to gluten at the very least, so I really can't give him any so he can be tested.

Thank you all for your responses.  I've been gluten-free for over 24 hours now and so far so good. I do still need to figure out soaps, shampoos and cosmetics though.  "Souped of version" of the me right now, that sounds nice! Here's hoping for some positive unexpected results of being gluten-free, and even if I don't notice any great changes, it's certainly nice to know I'm not inadvertantly poisioning myself on a daily basis!