My celiac antibodies in my blood went up

[Drake429]

I was diagnosed with celiac December 2011. I have been gluten free since. I started having some more problems, the doctor did some labs and it turned out that my celiac antibody in my blood went up (SIGNIFICANTLY) since I have been gluten free!! Any idea why or how this could happen??

[ciamarie]

Do you live in a household with gluten-eaters? If so, what do you do to avoid cross-contamination? Those are the questions I come up with right off the top of my head, but I'm sure others may have other questions. We'd need more details about what you eat and where you eat, do you cook for yourself? Do you eat out frequently? So now I added 2 more questions.

Having the answers to those questions would be a good place to start, and I'm sure you'll get lots of good advice and questions from others too.

[MitziG]

My guess would be that when you were first dx, your body had just started the auto-immune response, so antibodies were only slightly elevated. But, celiac is progressive. You are getting gluten somewhere, the immune response is still being triggered, so the antibodies are going to keep building up, even though you aren't intentionally eating it.

So...time to be a detective. Tell us how you eat, where you eat, who you eat with...we will try to help you track it down!

[Drake429]

Do you live in a household with gluten-eaters? If so, what do you do to avoid cross-contamination? Those are the questions I come up with right off the top of my head, but I'm sure others may have other questions. We'd need more details about what you eat and where you eat, do you cook for yourself? Do you eat out frequently? So now I added 2 more questions.

Having the answers to those questions would be a good place to start, and I'm sure you'll get lots of good advice and questions from others too.

I have my own toaster and keep all my gluten free seperate from the non-gluten free foods. Dinner is always gluten free. If we go out to eat, we go to places that have gluten free menus and I order from there; no, we do not eat out very often.

[Drake429]

My guess would be that when you were first dx, your body had just started the auto-immune response, so antibodies were only slightly elevated. But, celiac is progressive. You are getting gluten somewhere, the immune response is still being triggered, so the antibodies are going to keep building up, even though you aren't intentionally eating it.

So...time to be a detective. Tell us how you eat, where you eat, who you eat with...we will try to help you track it down!

I eat things marked gluten free EXCEPT for items my doctor told be was okay. Like: dairy, ice cream, peanut butter, jelly, butter, mustard......things like that. Could dairy and soy cause my antibodies to still be high? Or, are those two seperate food intolerances?

[dilettantesteph]

Different celiacs respond to different levels of gluten. A study by Fasano was used to show that most celiacs don't react to 10 mg per day: Open Original Shared Link

In that study one of the participants suffered a complete relapse and dropped out. This study was used to support the 20 ppm limit.

Some of us do react to these items, like the guy who had to drop out of the Fasano study, and like me, and are better off with a diet of whole foods.

More info: Open Original Shared Link

You may fall in this category, or you may have just gotten regular ole contamination.

[eatmeat4good]

Just going to think here about the ways you can get glutened in a gluten-eating household.

Gluten-eater makes a sandwich and goes to watch TV.

You wash your hands and dry them on a towel a gluten eater just picked up or used. (glutened)

You open the refidgerator to make your gluten free sandwich after the gluten eater put their sandwich bread on a plate then opened the fridge to get out their mayo or cheese. (glutened)

You take a nap on the couch where the gluten eater ate their sandwich while watching Tv...and your face is where their bread crumbs are. (glutened)

gluten eater finishes their sandwhich and then puts their plate in the dishwasher.

You do the same thing right after they did....touching the same handle and picking up gluten.

Then you open your gluten free dessert and eat it with your hands.

Wash your hands to eat and open the cupboard for a plate...where the gluten eater just opened the cupboard while making a sandwich...glutening the handle.

Gluten eater empties the dishwasher....with gluten on their hands from eating that sandwich.

You come along and grab a plate they just put away...glutened.

Gluten eater brushes their teeth. Glutening the toothpaste tube.

You come along to brush your teeth...glutening your hands....then slurp water from your hands and get glutened.

If they use wheat flour in the kitchen...the four can hang in the air and it gets everywhere too. You can breathe it and swallow it or touch surfaces where flour dust has landed.

I assume gluten is everywhere in my sister's kitchen.

She uses flour...so it's on all the plates and surfaces I figure. She and her kids touch every surface and handle in the house...so I easily get glutened there. They eat pizza in the living room too, which is a normal family thing to do...but I assume all furniture has gluten on it because of that.

Before I knew that gluten could be transferred by touch, I didn't take these precautions....or think of the above scenarios. But since I kept getting sick at her house....without eating her gluteny food...I realized the kind of things I wrote about above.

Maybe not everyone has to be that careful.

But some of us do.

I'm not saying it isn't possible to live with gluten eaters and stay safe....But it does take extra precautions.

[StephanieL]

Did they use the same lab? If they didn't it could explain some differences.

[squirmingitch]

Do you kiss a gluten eater? I have no idea if you are male or female or married or what. I'm saying to you suck face with a gluten eater? Does that person brush their teeth before kissing with you? You can get glutened that way. Have you checked lotions, shampoos, conditioners, hair products of any kind, moisturizers & so forth to make sure they are gluten free? If you have lotion on your hands & it's not gluten free & you eat something with those hands or touch your lips with those hands then you can get glutened. If your shampoo has gluten & it gets in you mouth while you're in the shampooing then you get glutened. Anything gluten that your hands touch can then touch your mouth & transfer the gluten.

When you eat out how confident are you that the facility is truly SAFE? What do you order to make sure you are safe? I would order a baked potato UNCUT that way they haven't stuck a knife in it that I don't know where else that knife has been. And I would not eat the skin; I would scoop the insides out only.

[MitziG]

Take a look at your personal care products. A lot of shampoos, toothpastes, lotions, lipstick/chapstick contain gluten. Anything that gets on your hands can easily end up in your mouth.

The possibility that you are super-sensitive is a real one. My son and I are not easily sickened at other peoples houses, but my daughter has gotten glutened from doorknobs and computer keyboards. Our whole house is gluten-free for that reason. (That and my non-celiac hubby is in the minority!)

[ravenwoodglass]

One thing that wasn't mentioned is meds. Have you checked all script and OTC meds as well as supplements for gluten? Some supplements will say gluten free but still contain wheat and/or barley grass so you need to read the whole label. Other non-food sources of gluten contamination would be in pet foods, art and craft supplies and glues and items used for home remodeling like wallpaper paste and drywall mud etc.

[kareng]

I was diagnosed with celiac December 2011. I have been gluten free since. I started having some more problems, the doctor did some labs and it turned out that my celiac antibody in my blood went up (SIGNIFICANTLY) since I have been gluten free!! Any idea why or how this could happen??

Get an actual copy of the blood test resulformula Dec and now. I had something go up on my blood work and the doc thought it was because I was still eating gluten. I wasn't and when I got a copy, it had nothing to do with Celiac. He didn't know what any of the tests mean.

The other thing is: are you reading the ingredients on these items your doc said are OK to eat? Some ice cream does have gluten, especially as an added thing like an Oreo. Not to insult you but we have had people eating corn flakes every day because thier doc said it was OK. But, of course, regular corn flakes are not gluten-free. Mustard could be made with beer, etc. I would really check what you are eating and make sure you aren't sharing things like PB or butter with a gluten eater.

[frieze]

separate condiments, ie, butter, peanut butter, gluten free mustard, etc

saying that is there any possibility of purposeful contamination?

[cd42]

Just so you know you are not alone--my daughter is in a similar situation. She has been gluten-free for nearly a year, but her ttG levels remain pretty much unchanged from her original diagnosis. In our case, her symptoms went away almost immediately on the gluten-free diet, but the numbers fail to come down (still at 120). While I suppose there could still be some hidden sources of gluten and high sensitivity, her absence of symptoms suggests otherwise.

Do you continue to have symptoms? If you do, it could be that you are still getting gluten as suggested by others here, but alternatively the symptoms could indicate other GI diseases (Crohn's, IBD), which apparently can also cause high tTG.

[Drake429]

Just so you know you are not alone--my daughter is in a similar situation. She has been gluten-free for nearly a year, but her ttG levels remain pretty much unchanged from her original diagnosis. In our case, her symptoms went away almost immediately on the gluten-free diet, but the numbers fail to come down (still at 120). While I suppose there could still be some hidden sources of gluten and high sensitivity, her absence of symptoms suggests otherwise.

Do you continue to have symptoms? If you do, it could be that you are still getting gluten as suggested by others here, but alternatively the symptoms could indicate other GI diseases (Crohn's, IBD), which apparently can also cause high tTG.

Yes, I still have symptoms and will be getting a capsule endoscopy done on July 3rd. My doctor asked me if I am following a strict gluten free diet and I am.

[Drake429]

Thanks to everyone who has posted suggestions! You all have been extremely helpful. I hadn't considered other forms of contamination like soaps and lotions. I really appreciate all your advise!!