Antibodies Still High
Posted 07 March 2011 - 11:39 AM
This is my first forum post, though I've been reading almost every day since being diagnosed via biopsy 6 months ago. I can't tell you how invaluable your insights have been!
At any rate, my question is this: I just recently had my 6-month follow-up. Since going gluten-free, I've felt SO much better . . . but my antibody levels still came back really high. In fact, they're almost as high as they were before I was scoped.
Has this happened to anyone else? Still being new to this, I'm sure I'm tripping up on some ingredients and getting accidentally glutened, but I'm really surprised by those results, especially considering how much better I feel. Could it be possible this is a cosmetic/shampoo/personal product issue? Man, what pain . . .
40 years old
Diagnosed via biopsy 8/2010
Posted 07 March 2011 - 01:31 PM
The first thing to check is cross-contamination in factory (assuming you already know all the labeling laws). I'd go through everything that's processed (and even things like trail mix) and check online or call the company to make sure they're gluten free and made on gluten-free lines.
Also check your vitamins, prescriptions, and herbal supplements. Nothing is automatically safe--meats can have wheat added to them, drinks like tea and instant coffee occasionally have gluten, etc. You really have to check everything.
You also might want to chuck gluten-free stuff that falls under the 20 ppm but is made on shared lines. The 20 ppm might be too high for you.
You might also react to distilled alcohols that were made from grains (like wheat vodka.) This isn't common, but it does happen.
Recheck everything you're eating outside the house, your cross contamination precautions inside the house, and then, yes, things like toiletries and pet food.
Posted 07 March 2011 - 04:42 PM
Posted 08 March 2011 - 04:51 AM
Posted 08 March 2011 - 05:58 AM
Posted 08 March 2011 - 07:17 AM
What helped me is I just went completely on a whole food diet -all fresh meats, veggies & fruit. I didn't feel any better so I knew it was the vitamins. So I changed the vitamins and then I all my subtle reactions went away and I started to feel 100%. Then once a week I added one of the gluten-free processed foods to see if I reacted. I also keep a food journal and documented how I was feeling. I found out that I always react the next day when it comes to gluten. I also had to stop eating most of the gluten free cereal I was eating. But the food journal really helped me figure it out. When I started to see the pattern from my journal, I knew I must one of the sensitive ones & I just couldn't eat a lot of gluten free processed foods. It's a bummer, but we adjust. And these processed foods really aren't good for you anyway, so it's just not worth it.
I had my most recent test in Dec. It was 29 - which is the lowest it has ever been. My GI doctor wants me to have it tested again soon. He said it should be down to normal by now. He thought I was getting gluten in my diet still for the last year. I really had no idea. It was getting so frustrated, because I'm so super careful. I have a gluten free home (everyone eats gluten-free), I wasn't eating out at all, all my beauty products are as gluten free as far as the companies know, so I know it had to be food that I was buying for my home.
I hope this helps! I'll have to let you know what my blood work results are next time. I'm really hoping they are down to normal.
Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09
Posted 08 March 2011 - 11:26 AM
BTW, my level when I was first tested was around 120. Six months after going gluten-free, it's 90.
But, I guess practice makes perfect, right? :-)
Thanks again for all the suggestions . . . I still have a lot of work to do!
40 years old
Diagnosed via biopsy 8/2010
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