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yankintejas

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yankintejas Newbie
yankintejas
Posted

Hi Everyone,

 

I have not started my gluten free diet, yet. My endocrinologist, who ordered my bloodwork, suggested I see a gastro. I'm wavering as to whether or not to do a scope, which is what she thought they would recommend. With 4 of 4 tests coming out positive, I'm not sure what the value of the scope would be. But, my endocrinologist said that she does not manage the Celiac aspect of patients which is why she wants me to see the gastro...

 

My kids have their annual check up tomorrow and I am going to ask their pedi to order bloodwork on the two oldest (8 and 6). Below are the tests I had done. Is there anythign else I need to request?

 

Test results:

 

Gliadin AB, Deamin, IgG- 85.0  (weak pos = 20-30, positive = >30)

 

Gliadin AB, Deamid, IgA- 56.9 (weak pos = 20-30, positive = >30)

 

TTG IgG 15.4 (weak pos = 6-9, positive = >9)

 

TTG IgA  32.2 (weak pos 4-10, positive = >10)

 

I also had a liver function panel in which everything was in range.  

 

 

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shiffy k Newbie
shiffy k
Posted

I had a endoscopy just Tuesday of this week, and he saw some problems with my gastric acid and could not exclude celiac. He found the problem with excess acid and was able to rule out a couple of other illnesses thanks to the endoscopy. It really wasn't a bad exam either. I was terrified, but trust me it may help the doctor find other stuff. As far as the blood work goes that seems like the same tests that they have done on me. Sorry I cannot help more. Good luck! =)

cyclinglady Grand Master
cyclinglady
Posted

The endoscopy has been considered the "gold standard" in diagnosing celiac disease (see the University of Chicago's celiac website for more information).  However, it is up to you.

 

I decided to do it, because I could not believe I had celiac disease!  I tested positive to only one of the tests.  Anemia was my main symptom and heck, I already had a genetic anemia.  I just went into the GI for a consult since I was finally old enough to get an colonoscopy screening.  My GI doc just guessed that I had celiac disease.  He was right!

 

The endoscopy was nice in that it ruled out other things like SIBO and determined the amount of damage to my intestinal villi.  

 

Getting my kid tested to was easy because I had a very solid diagnosis.

 

But, some folks have to wait months or a year to get the procedure done and waiting may not be worth it.  They just go with the blood tests and their doctors chart their celiac disease diagnosis.   

 

Good luck on whatever you decide.  

nvsmom Community Regular
nvsmom
Posted

I agree. With 4/4 tests positive, there can be no doubt that you have celiac disease.  Some doctors always want to do the scope as a standard part of their diagnosis, but I would discuss it with the doctor why that would be needed.  

 

I actually skipped my scope because I had very positive tTG IgA and EMA IgA.  The EMA IgA (endomysial antibodies) is 98-100% specific to celiac disease, so knowing that I felt there was no need for a biopsy and my doctor agreed.  The EMA IgA is the one test you did not have done, but with 4 positives, one being the DGP IgG which is very specific to celiac disease too, I think you can be pretty confident in your celiac disease diagnosis.

 

Those tests look good for your kids.  Again, the EMA IgA is missing, but it tends to indicate more advanced disease so it is not always positive in young children.  Be aware that if they test negative now, you still need to retest them every two years if they continue to eat any gluten.  Celiac can develop at any age so they'll need to be aware of it for their entire lives.

 

Good luck with the doctors, and welcome to the board.  :)

yankintejas Newbie
yankintejas
Posted
  • Author

Thank you so much for your replies. I got my boys' results yesterday and both of them came up negative (yay). We'll continue to test them every two years, much to their dismay. They weren't fans of that blood draw.

nvsmom Community Regular
nvsmom
Posted

That's great!  :)  I hope they stay negative forever, chances are good that they will.

 

Is your Gastro appointment coming up soon?  You could probably switch to gluten-light if it will be a while. A 1/2 slice of bread per day will probably be enough to keep your autoimmune reaction humming along without making you feel even worse.  If the gastro appointment is way in the future, you could go gluten-free and then resume eating gluten (for 4 weeks) if he wants to do the endoscopy (although with 4 positives I think it would be testing overkill ;)).

ravenwoodglass Mentor
ravenwoodglass
Posted

Did your test results also go to your GP? If you are very ill you might want to see if you can go in and talk to the GP. There really isn't much doubt you are celiac with those test results and you could ask your GP if he/she will diagnose you based on those results. The main follow up you need is testing for your vitamin and mineral levels and a complete blood panel to check for anemias. You should also have a follow up panel after 6 months gluten free to make sure your levels are going down. If your GI appoinment is far off you could also call and ask to be put on a cancelation list if you can get in on short notice. 

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yankintejas Newbie
yankintejas
Posted
  • Author

I actually don't have any symptoms other than being ridiculously tired (I'm ready to go back to bed about an hour after I wake up) and foggy- if that makes sense. I'll go to the store and forget what I was supposed to pick up, walk into a room and have to stop and think why I'm there, etc. I feel similar to when I was first diagnosed hypothyroid- just in a tired daze. But, I don't feel ill and I'm not in any pain, thankfully. My endocrinologist ordered the bloodwork initially b/c of my complaints that I just wasn't feeling like the synthroid was working. I have no energy.

 

My gastro appt. is on August 3rd. They had earlier appts- the group has about 20 doctors- but I'm going on vacation for a few weeks. 

yankintejas Newbie
yankintejas
Posted
  • Author

 The main follow up you need is testing for your vitamin and mineral levels and a complete blood panel to check for anemias. You should also have a follow up panel after 6 months gluten free to make sure your levels are going down. If your GI appoinment is far off you could also call and ask to be put on a cancelation list if you can get in on short notice. 

 

Is this something that is traditionally done by the GI? My endo doc did Vit D, B12, liver, and kidney function along w/ the celiac panel, but didn't check iron. 

ravenwoodglass Mentor
ravenwoodglass
Posted

Is this something that is traditionally done by the GI? My endo doc did Vit D, B12, liver, and kidney function along w/ the celiac panel, but didn't check iron. 

Those tests can be ordered by any doctor not just by a GI as celiac is an autoimmune disorder not strictly a gastrointestinal one the follow up tests, other than an endo if you choose to have one, can be done by any doctor you see.

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