• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Antibodies Still High
0

7 posts in this topic

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 . . .

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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!

1

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites
Ads by Google:


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. :)

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,805
    • Total Posts
      932,565
  • Member Statistics

    • Total Members
      64,299
    • Most Online
      3,093

    Newest Member
    Lauren Leon
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi kelzz..........the only way you will find out if the increase is from gluten exposure is to have your doctor run the correct test.  I have said this a million times on this forum but I will say it again.....the DGP/IgA tests for reaction to gluten ingested. The tTg/IgA tests for intestinal damage and that can be elevated from other autoimmune diseases, or from ingested gluten.  So you are either being glutened in sneaky ways OR you may have another autoimmune issue going on. Sorry my answer is so late but I have been on vacation. I hope this information helps you!
    • Ok, so long story, but I'm hoping some knowledgeable folks can chime in and tell me if a) I'm not crazy for thinking this sounds a lot like celiac and not a lot like anything else and  are the tests being run the right ones? I had malabsorbtion symptoms my whole life, rashes on the inside of my elbows and knees, chronic constipation, chelisis, brittle cracking nails, my hair sheds a ton, irritation on the edges of my scalp, blistery rashes on my hands, low iron, low blood sugar, bloating, painful gas (like bring me to my knees type). I pretty much just accepted it as my normal, and when I went to get the skin issues checked out in my early 30s, I was just told it was eczema and sent away. The rashes on the insides of my elbows and knees went away when I was about 15 or so, but in my 20s I started seeing a blistery, itchy rash on my elbows occasionally. Fast forward to 2015, and I have a terrible outbreak of GI symptoms (always constipation with me, with the occasional horrible D experience sprinkled in) along with a pretty bad itchy rash on both elbows. I start researching and find that a lot of what I have experienced sounds like DH/celiac. By the time I get my referral in and appointment to the GI doc, I've decided to cut milk out of my diet. I thought back to when I had the last period of time where I had no GI symptoms, and it was when I was last deployed. The dairy in the chow hall was either expired or near it, so I lived on eggs, rice, and chicken, and hot sauce. ;p. Once I cut out milk, and I saw a pretty impressive relief of most of my symptoms. The chelisis is gone, my rash disappears, bloating is much better, gas pains are gone. I get tested for celiac- negative, lactose intolerance- negative, SIBO- positive. Two rounds of antibiotics 6 months apart and my SIBO (methane type) clears up. Basically they said I had IBS-C and my skin issues were likely unrelated. I'm pretty sure my issue with milk is casein-related, because my son has the same issues with casein, and I sure have GI issues when I drink it. (TMI... mucousy rabbit poo). So I figure most of my issues have cleared up, no active rashes, good right? Nope. Since then, I had a couple outbreaks on my elbows, but they went away fairly quickly, My scalp rash thing ebbed and flowed, and my hair still sheds a ridiculous amount. About a month ago, I had another rash outbreak on both elbows, a couple blisters on my hands... and it stayed. After a month of rash, I finally contacted my doc and said "look, this rash is active, please take a look." Just as if it sensed it, the rash started clearing, that same day. :-< By the time I saw her a week and a half later, it was gone, save for a couple scabs. So, good news is my doc disagreed with the GI doc and said it sounded auto-immune to her. I'm military, so I get what I get for referrals, labs, and doctors, but she's luckily very good and knowledgeable. She ran the following tests: Complement Panel: Awaiting results C-Reactive Protein: Awaiting results Celiac Disease Ab IgA Panel: Awaiting results Tissue Transglutaminase Ab IgA: Awaiting results
      Gliadin Ab IgA: Awaiting results Endomysial Ab IgA: Awaiting results Rheumatoid Factor: NEG Comprehensive Metabolic Panel W/eGFR: Normal with the exception of a higher than normal Urea Nitrogen/Creatinine (indicates poor kidney function or bleeding in intestines (ding ding ding) My GFR was normal, so kidneys are probably okay. ESR: 9 (normal is 0-20) Indicates inflammation  
    • I've tried 3 shampoos and a skin cream, sorry can't recall names! It can keep it under control but I want to know why it happened in the first place. I was already gluten-free, and never had it in my life beforehand. Just looking for a magic cure
    • There isn't a cure that I'm aware of. Mine is much, much better since I went gluten free but it's liable to recur, especially if I get run down. Nizoral is most effective shampoo but it contains wheat protein so take care!
    • Currently, a gluten-free diet is the only way to manage celiac disease. Can a celiac vaccine change that? One company thinks so. ImmusanT corporation has developed a therapeutic vaccine, Nexvax2, that is specifically designed to treat celiac disease. The vaccine is an adjuvant-free mix of three peptides that include immunodominant epitopes for gluten-specific CD4-positive T cells. The vaccine is designed to neutralize gluten-specific CD4-positive T cells to further antigenic stimulation. View the full article
  • Upcoming Events