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megsybeth

Member Since 27 Sep 2012
Offline Last Active Sep 25 2014 08:19 AM
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Topics I've Started

Risks Of Delaying Second Endo To Determine Refractory Celiac?

25 September 2014 - 08:24 AM

According to my bloodwork, I seem to be taking quite a while to heal though I've been strictly gluten free and am aware and vigilent about cross contamination (eg I don't do fries in most restaurants, don't do most restaurants actually, don't do generic oats, etc.). I think I've had celiac since I had mono at six and was 35 when diagnosed. It's now two years later and two years of the diet. The malabsorption issues such as fatigue have dramatically improved and GI isn't bad, but never really was.

 

I've relocated and new GI wants to do a repeat endoscopy because my TTG IGA is still elevated. She wants to rule out refractory celiac and has told me and I've been reading about the risks of untreated refractory celiac. But even though I'm elevated, I'm trending decidedly down.

 

My first labs were through primary and I was positive across the panel but the range of TTG isn't accurate or useful since from Quest (and I don't remember it =)) 

-second, a few months into diagnosis, was TTGI IGA of about 95 (university lab);

-a year later about 45 (university lab)

-and now about 23 at a new hospital lab where positive is above 15 (nurse thought it was same range as my university lab tests)

 

My thinking is since my symptoms aren't troublesome and I just switched plans, I'd rather not use my deductible to pay for an endoscopy if it's not absolutely necessary. I would think she'll see blunting...but she hinted that she wouldn't jump to steroids, would just try to make my diet stricter. I'd rather just follow repeat labs and then, if not continuing down to negative, do an endo next Jan or later when I can pay my deductible for the year. 

 

Any advice? I think I will also just stop restaurants or eating anywhere I don't trust 100% but my gut tells me (pardon the pun) that it just takes a while when active celiac is ignored for so long.


Great Gluten Free Cake Mix?

15 November 2013 - 10:22 AM

I scored the coveted dessert spot on 5yo DS's Thanksgiving party at school. I want to make some fun gluten free Turkey topped cupcakes because it's his rare chance to eat the "real" treat. Dont' have time for experiments so I was wondering what the best, moistest yellow cake mix is. Was thinking of going with Barbara's since I use other products and like them. They're four so probably will care more about the candy and frosting on top but I'd love to avoid a sandpaper texture.

 

Thanks!
Megan


Over A Year Out And Still Highly Elevated Ttg Iga =(

12 November 2013 - 04:40 PM

I've never cheated, I think I'm pretty knowledgeable about what I eat. I'm not super strict about possible CC outside the home, for example at chipotle I don't usually ask them to change gloves, because I've found my son (more sensitive) and I both are symptom free. But I limit how often I eat out and only have a certain list of places, I kind of go with my gut about if they really know what they're doing (pun intended =)).

 

My first bloodwork was done at a quest but I had a strong positive on all markers. I've since done follow-ups at UCSD which has good labs and I see a celiac specialist there.

 

My TTG IGA results have been:

 

Sept., 2012, strong positive but don't have numbers, went gluten free immediately because I was breast feeding

 

dard Range
1/28/13 5/1/13 9/20/13   Endomysial Ab, IGA Titer
<1:10
1:20 H <1:10 <1:10   TTG IgA Ab
0 - 19 Units
94 H 49 H 45 H

 

I also have consistently had elevated white blood cells. Have to see GI for follow-up, she thinks it might be another AI disease. Also mentioned maybe needing to go back in for another endoscopy. I'm worried about what else might be. Any btdt?

 

-Megan