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lao512

Member Since 05 Jun 2013
Offline Last Active Jun 19 2013 07:27 AM
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Posts I've Made

In Topic: Not Sure What To Think - Just Got Blood Test Results

19 June 2013 - 07:27 AM

Thanks for the input, everyone!

 

Could you go to another doctor or get into a gastro in a timely manner?  If not, you could try ordering a home Biocard test which tests for IgA and tTG IgA (in high levels). At least with the Biocard test you would know if your other IgA based tests are accurate.

 

I called this morning and scheduled an appointment with a gastro on July 29th - the earliest they could get me in. The practice was recommended to me by a friend who has celiac, so I'm hopeful that they will know what they're doing.

 

There are online labs where you can order complete celiac blood panels...and anything else you want. I'm in the US...don't know where you're at.

 

Thanks for the tip! I'm in the US, too, so I will definitely check that out. It might given me some extra info to share with the doc - and save time of him having to order it.


In Topic: Not Sure What To Think - Just Got Blood Test Results

18 June 2013 - 07:23 AM

I'm back! Finally heard back from the doctor's office today and I am infinitely frustrated. The nurse said she talked to the lab and they said that the panel that was done (TTG IgA, AGA IgA & IgG, and RETICULIN IgA) is entirely sufficient for diagnosing celiac, and that therefore the doctor will not order any additional tests (such as DGP IgA & IgG and total IgA).

 

Apparently the lab did suggest that they test me for food allergies (including wheat), but the doc doesn't want to do that either. The nurse asked if I'd had any changes in my bowel movements, and I said it's hard to say, because they've never been regular - sometimes I won't have one for days on end, and then other times I'll have D for several days in a row - she said "well, if it's always been like that, then there's no change." I can't help but think, though, that it shouldn't have "always been like that" in the first place - that's like saying the brakes on my car have never worked, so I'm not going to fix them now.

 

I asked again about the b12 deficiency and the nurse said to keep getting the monthly shots and have my levels tested again in 10 weeks. She then said that the doc did want me to get an EMG / nerve conduction test (because one of the b12 symptoms I'm having is peripheral neuropathy). I just had one in March (and it was normal)! I told the nurse that and all she could say was "oh, the doctor must not have seen that." That makes me wonder if she's even looking at my chart at all - it was just a few months ago, it's not like it would be buried somewhere from years ago!

 

any chance that you take any type of PPI or acid suppressing drug?  they can lower B12.  however if you're getting enough of it, and you're still deficient in it, that indicates malabsorption.  the answer "some people are just B12 deficient," is a cop out IMO

 

I am not taking any type of PPI or acid suppressing drug, so that can't be causing the b12 deficiency. Does anyone here with b12 deficiency have any advice? Would a gastro doc be able to help diagnose what's causing that? I'm thinking maybe I could kill two birds with one stone by seeing one - find out what's causing the b12 deficiency and get a better idea of whether or not celiac or NCGS is involved.

 

As I mentioned before, I started keeping a food/symptom journal last week. I also started to eat gluten more consistently - as I was not necessarily eating it every day. I don't know if it's just because I've been paying closer attention, but I feel like I have been more bloated, gassy, and had more urgent bowel movements in the past week and half that I've been eating gluten every day. It's not always consistent, though. Sometimes an hour or two will go by before I have symptoms, sometimes it won't be until the next morning, and sometimes it's right away. I had pasta and garlic bread for dinner one night last week and felt ok that evening and then the next morning I looked like I was 4 months pregnant. Then on Saturday morning I ate a bagel and immediately had D and felt sick to my stomach for most of the rest of the day. Is this inconsistency common with celiac or NCGS?


In Topic: Not Sure What To Think - Just Got Blood Test Results

10 June 2013 - 10:07 AM

So, the doctor's office called me back on Friday to answer my questions. Regarding the Total Serum IgA, the nurse said the doctor never orders that test, because it's too specialized and only GIs should order it.

 

Regarding the AGA IgA/IgG vs the DGP IgA/IgG, she said they don't know anything about how sensitive the AGA tests are vs the DGP tests and that they would have to call the lab and ask them. Based on what the lab says, the doc will decide if she will order the DGP tests (but she will not order the Total Serum IgA).

 

I also asked what could be causing the B12 deficiency if it's not celiac (we know I'm eating enough of it and we've ruled out pernicious anemia). The nurse's response was "some people are just b12 deficient." That doesn't make sense to me. If I'm eating enough of it, and my levels are low, there must be a reason my body isn't absorbing it.

 

They haven't checked any of my other nutrient levels, such as iron, vitamin D, etc. I pointed that out to nurse and she said she would ask the doc about it.

 

So, I'm once again waiting for them to call me. In the mean time, I've started to keep a journal of what I eat and how I feel. I had some pretty bad GI issues over the weekend and spent most of yesterday laying on the couch not really feeling like doing anything. I don't know if this is all in my head, like confirmation bias - someone said the word "celiac" and now I'm viewing every little thing through that lense. Or if I really have been missing/writing off symptoms for a while and now I'm just more aware.


In Topic: Not Sure What To Think - Just Got Blood Test Results

05 June 2013 - 02:39 PM

I emailed the doc to ask about the DGP igg/iga and total iga tests. I'm waiting to hear back and will post again when I hear from them.

As for my thyroid, my most recent TSH was 1.3. I've noticed great improvement in many other thyroid related symptoms (hair loss, dry skin, brittle nails, menstrual issues) since getting it down to that level. I'm slated for a TSH/Free t4/Free t3 test next month, so I'll be interested to see what that shows.

Thanks for all of the input. If anyone else has anything to add, I'd be happy to hear it!

In Topic: Not Sure What To Think - Just Got Blood Test Results

05 June 2013 - 07:44 AM

Are you still eating gluten? If you went gluten-free before the test it could be false negative.

 

I am still eating gluten, although I wouldn't say that my diet in general is high in gluten, as I try to eat mostly "whole" foods such as fruits, veggies, and unprocessed meat. My preferred "starch" side dishes are rice and quinoa. I love bread and pasta, but only eat those a few times a week. I try to stay away from processed foods, so I doubt I'm getting much gluten from additives.