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Antibodies Still High

Janerie

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Janerie Newbie
Janerie
Posted

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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starrytrekchic Apprentice
starrytrekchic
Posted

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!

teresasupermom Rookie
teresasupermom
Posted

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?

dilettantesteph Collaborator
dilettantesteph
Posted

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.

Gfreeatx Apprentice
Gfreeatx
Posted

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. :)

Tigercat17 Enthusiast
Tigercat17
Posted

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. :)

Janerie Newbie
Janerie
Posted
  • Author

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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      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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