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Antibodies Still High
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Hi all -

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 . . .

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It could be.

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.

Good luck!

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We are going through similar problems with my dd. Her antibody levels have progressively gone up her last 3 checks in spite of us being stricter and stricter with things. We at first were only having her meals gluten free, and then the whole house has gone gluten free. I would start looking at that. For us I believe her primary problems have been cross contamination. You may be missing things there. Do you go out to eat at all? Are there other people around you that you live with that still eat gluten?

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You may be one who reacts to very low levels of gluten, even in gluten free foods, but without overt symptoms. I am symptomatic with a lot of them. You may need a whole foods diet like I do.

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I just had the same thing happen to me, my blood test still showed elevated levels despite the fact that I have been very careful with all the foods I have been eating and have been feeling better too. When I got the results I rechecked everything I was eating and also my toiletries. I figured out that my hand sanitizer, hand lotion, face moisturizer and foundation all had wheat or barley in them after calling the manufacturers. I was shocked since I did check the ingredients on each of them and didn't see anything that would have made me think that they contained gluten. Lesson learned, call the manufacturers to double check. Here I thought I was doing a great job and I was covering my face and hands with gluten. :)

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I totally agree with dilettantesteph. I've had high levels of antibodies every time I was tested for blood work since I've been diagnosed and I've been gluten free for 18 months. I was feeling a lot better after 5 months on the gluten free diet, but still not 100%. My reactions are so subtle I didn't even notice it. I know it's so frustrating. I did finally figure it out. I was getting cross contamination from supposedly "gluten free" vitamins and some gluten-free processed foods. I even have trouble with Glutino products which are supposed to be one of the better companies. This is the only gluten-free processed food company I buy from now, but I still can't eat it everyday. It seems like every once it a while I get a bad box of cereal.

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. :)

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Wow - so much to think about, but thanks for all the useful information! I really have tried to avoid most processed food since going gluten-free, but I certainly haven't eliminated 100% of them. And my household isn't gluten-free; my partner's good about eating gluten-free most of the time, but he still keeps his own bread, cereal, etc. in the house. We just finally started using separate butter, but I bet I've been getting CC'd from simple things like that. And we do eat out a lot. I know right away when I've been glutened at a high level - my borborygmi (sp?) kicks in within 10 minutes - but it makes a lot of sense that I could be reacting to even small amounts of CC. And while I always ask for the gluten-free menu, and/or ask wait staff to check with the kitchen before I order, I guess I really can't trust the options or the answers.

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!

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
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