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Member Since 02 Aug 2013
Offline Last Active Sep 05 2013 04:23 AM

Posts I've Made

In Topic: Quest Diagnostics' Turnaround Time For Hla Typing For celiac disease Gene...

05 September 2013 - 04:25 AM

Just wanted to come back and update. I got my results on Tuesday (nearly 2 weeks after the draw).  I should have received them a few days earlier considering the specific lab that was doing the test said they have a pretty reliable turnaround of 8-9 days, but my Dr’s office was closed for a long holiday.


In any event, my HLA gene test results were negative.  I don’t have the written report yet but the nurse should be mailing it to me. I am very relieved to finally have a clearer answer as far as true Celiac or not. Regardless, I know for absolute certainty that I am gluten intolerant. Considering all that I mentioned in my original post and the fact that it appears to me that my RA is starting to act up after my gluten challenge (bloodwork a week ago shows RF is up but CCP is still down so staying off meds for now other than Ibuprofen), I am self diagnosing NCGI and will commit myself to a strict gluten-free diet. As far as my kids, I can rest a little easier now and not have to constantly worry about whether or not they have or can develop celiac disease. On the other hand, I'm sure I'll find something else to worry about with them. For instance, I still can't explain why they are much smaller/skinnier than their peers, including their cousins whose parents are shorter/smaller than DH and I.  

In Topic: Why Is Biopsi For Celiac Done As An Endoscopi?

28 August 2013 - 01:59 AM

I believe the Gastroscopy and Endoscopy is the same procedure. Just called by different names. In the US it can be called simply Endoscopy, Upper Endoscopy and EGD (esophogogastroduodenoscopy). All the same procedure.

The accuracy of procedure depends on taking a decent amount of biosies from several areas. The damage they are looking for can be patchy.

In Topic: Quest Diagnostics' Turnaround Time For Hla Typing For celiac disease Gene...

23 August 2013 - 08:41 AM

Appletree, I mean that I can not get the results directly from the lab. My state (Florida) does not allow the lab to provide me with the results at my personal request, nor can I partcipate in any app/service to get results sent to me directly. I was unaware of any option for the doctor to give authorization for me to receive a duplicate copy. I will have to check into that for next time. I usually get a call from the nurse with results and doctor instructions and then I go by and pick up a copy.

In Topic: What Kind Of Doctor/specialist To See For Leaky Gut?

13 August 2013 - 03:48 AM

Stri8ed – thank you for the tip on the test and the link. I am looking for all the info I can get. I never considered leaky gut until I had the IgG allergies and started researching it and leaky gut kept coming up.

Renaye – It doesn’t seem that many traditional doctors consider leaky gut to be a clinical finding, unfortunately. I did some local searches and have found that many Chiropractors also have holistic/alternative medicine practices (or “Wellness Centers”) that consider and treat leaky gut syndrome as part of their whole body “wellness” plan. Sounds like you found the same. Unfortunately, my insurance doesn’t cover ‘alternative medicine’ and I would have to pay for it out of pocket. $175 for first visit and $50 – $150 for each follow-up with going a couple times a week and tapering off. I can’t afford that right now, so, like you, I will have to try to deal with it myself. I also see a Rheumy for Rheumatoid Arthritis. I go back to her in a couple of weeks and will mention it to her and see what her take on it is. Maybe I can see if she will order the lactulose/mannitol test. It doesn’t hurt to ask.

Cyclinglady – thanks for the tip on tea tree oil. I’ve heard of that remedy but never tried it. I won’t use the systemic stuff because I just don’t want to risk side effects. I’ve tried the OTC stuff which does absolutely nothing. For several weeks I treated with apple cider vinegar soaks and applied vicks vapor rub. The vicks pretty much killed the nail and sort of detached it from the nail bed so I had to keep trimming them back really far. They grew back in an appeared fine but it wasn’t too long before the fungus came back.

In Topic: Question About Doing Blookwork After Limited Gluten Diet

06 August 2013 - 02:34 PM

Grrr!  I got a call from the Dr's office this afternoon.  But all she had was a "message" from the Dr that my Celiac Panel and my IgE flaxseed allergy tests both came back negative. "Oh, and your IgA was minimally low, but clinically insignificant so there is no need to be concerned."  I asked for the values.  She said she didn't have my actual report because the Dr hasn't released it yet, she only had his message. So I requested to pick up a copy tomorrow afternoon.  Ugh! This sucks! I was all prepared to accept a negative result based on my gluten intake possibly not being quite long enough to get an accurate reading.  But she just had to say "low IgA" so now I'm questioning the accuracy of this blood test AND the testing I had done 7 years ago. I'm not even sure WHAT tests they performed.  The lab's website under the test code says the main test is the tTG IgA and IF that test is positive then they do the Endomysial AB IgA test, IF that is positive then they do the Endomysial AB IgG test. They also do the total IgA and IF that less than the lower limit THEN they do the tTG IgG.   I guess I will have to wait until tomorrow to see what tests they actually did and obsess over the values.  I will be sure to update and see what others here think.  How "low" does the IgA need to be to affect the accuracy of the testing?


Regardless of what the blood tests say,  I am leaning towards remaining on a gluten intake (2 slices bread daily) for 3-6 months and going to another GI.  I would like to get the endo-biopsies at least one more time before I am comfortable enough to rule out true celiac disease.  I may also request the genetic testing at that time too. I'm just a person that has to know for sure. This time I will be sure to do some research to find a Dr in my area experienced with celiac disease/NCGI and Leaky Gut.  I also suspect I may have a Leaky Gut problem too.

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