Blood tests

[BethanyE.]

Hi,

I’m new to the forum and the celiac world. I recently was suspicious for celiac due to several autoimmune thyroid problems and some GI symptoms. I did home Celiac testing through Imaware with a result of “quite likely to have celiac”- tTg Ig A 181 (normal <5.4), tTg IgG 113 (normal <6.4), DGP IgA 151 (<14.7), DGP IgG 156 (<10.5).  I didn’t want to believe it so I got some more blood work done  . DGP IgA, DGP IgG, and tTG A all > 250, Endomysial IgA positive, 1:320.  I have a GI appointment scheduled in a few weeks. I guess my question is how long it took other people with really high levels to start improving? I’ve read a lot of posts from people with slightly elevated antibodies, not a lot from people with high ones. Any insight would be appreciated. Right now all this seems pretty daunting. 
 

Thanks

[trents]

Your question begs another question: Have you already started eating gluten free? If so, you need to get back to eating gluten until after your endoscopy/biopsy is complete. The Mayo Clinic guidelines are the daily consumption of two slices of wheat bread (or the equivalent) for at least two weeks prior to the biopsy.

Be aware that some people experience "withdrawal" at the beginning of the gluten-free journey and actually fell worse for a few weeks. It commonly takes about two years for adults to experience complete healing of the small bowel villi once going gluten free, but usually start to feel much better within weeks of going gluten free. 

Be aware also that there is typically a significant learning curve involved with eating gluten free so that must be factored into the equation as well. It's easy to eliminate major sources of gluten but learning how gluten can steal it's way into our diet because of being hidden by terminology or because of cross contamination is more challenging. Eating out is the probably the biggest source of cross contamination since you have little control as to how "gluten-free" items are handled back in the kitchen. For instance, gluten-free spaghetti noodles being boiled in the same pot with wheat noodles or the bunless meat patty being cooked on the same grill with breaded fish patties, that sort of thing.

Edited July 3, 2022 by trents

[BethanyE.]

2 minutes ago, trents said:

Your question begs another question: Have you already started eating gluten free? If so, you need to get back to eating gluten until after your endoscopy/biopsy is complete. The Mayo Clinic guidelines are the daily consumption of two slices of wheat bread (or the equivalent) for at least two weeks prior to the biopsy.

Be aware that some people experience "withdrawal" at the beginning of the gluten-free journey and actually fell worse for a few weeks. It commonly takes about two years for adults to experience complete healing of the small bowel villi once going gluten free, but usually start to feel much better within weeks of going gluten free. 

Be aware also that there is typically a significant learning curve involved with learning how to eat gluten free so that must be factored into the equation as well. It's easy to eliminate major sources of gluten but learning how gluten can steal it's way into our diet because of being hidden by terminology or because of cross contamination is more challenging. Eating out is the probably the biggest source of cross contamination since you have little control as to how "gluten-free" items are handled back in the kitchen. For instance, gluten-free spaghetti noodles being boiled in the same pot with wheat noodles or the bunless meat patty being cooked on the same grill with breaded fish patties, that sort of thing.

Thanks for your help. I’m definitely a bit overwhelmed by the things I can’t control! Don’t worry, I’m working through a bucket list of gluten foods over the next few weeks.  I’m getting myself ready to go gluten free and am looking forward to feeling better.

[trents]

Looking forward, this might be of help in getting off to a good start: 

Yes, it is daunting in the beginning. The hardest thing probably is the impact on one's social life. Eating out, family gatherings and invitations for meals from friends all present dangers to the celiac. Eventually, you make adjustments and it becomes the new norm.

[Scott Adams]

You blood test results are so high--over 30x the high marker for tTg Ig A 181 (normal <5.4), that I'm not even sure why you would need a biopsy to confirm it. Newer research points to diagnosing celiac disease if your tTg levels are 5-10x the CD level, and you can see more info about this, including links to the research, in this article:

 

[BethanyE.]

Thanks for the help. I appreciate the information.