Blood Tests Still Coming Back Positive--help!

[jmengert]

I'm looking for help from those of you who may have experienced similar things. I've been gluten-free for nearly two years. I am *very careful*. I never eat out, I only cook my own foods, and every food that I put in my mouth has been verified gluten-free, as are my toiletries, makeup, or anything else that could end up in my mouth.

So, I've been feeling awful for the past few months, so I had the celiac panel run again, and my blood tests came back positive--not nearly as high as when I was first diagnosed, but still positive. Any idea at all what could cause this? My GP ran these tests, and I have an appointment with my GI specialist on Oct. 18, but in the meantime I'm afraid to eat--how am I having a positive blood test?

[gf4life]

Do you live with people who have gluten foods in the house? This can be a very large source of contamination.

[jmengert]

It's just my boyfriend and I in our house, and he eats gluten. However, we have separate areas of the kitchen, use separate pans, separate condiments, he doesn't bake gluten, etc. I don't see how it would be from that.

I'm wracking my brain here, and I can't think of *anything* that could have gluten. This is so frustrating!

[gf4life]

He brushes his teeth before you kiss?

Are you sure he is careful about crumbs?

Are all of his lotions and body products gluten free too?

[happygirl]

if you really want to be thorough, tell us some name brands/products you use regularly. Meds, things like that. I know you KNOW your stuff! However, you never know...we all (including myself, and every single person on this board) have made mistakes. You know we all want to help

What about cat/dog food.

The other thing I have heard is that for some people, it can take years for their levels to go down. Have you had biopsies yet?

[jerseyangel]

Julie--that's really dissapointing news

Laura had a great idea--when you can, list everything you use/eat that you can think of. We'll do our best to help you figure this thing out

What about a collander? Detergents/soaps/personal care stuff--

Do you do take out or regularly eat at any place in particular?

[jmengert]

You all are the best--thank you for being so supportive

Okay, here's the rundown: I haven't eaten out in 1.5 years and cook all my stuff, so there's nothing there. I make my boyfriend brush his teeth before kissing, and I never kiss him on the cheek or anything because of his toiletries.

As far as what I eat/use:

Toiletries: Dove shampoo, conditioner, hairspray

NARS cosmetics

Crest toothpaste

Neutrogena face wash and acne solution

Contact lens solution (Opti-express)

I use Palmolive dish soap and usually use paper plates and forks--we don't have a dishwasher in our house, so this is faster for me.

In a normal day for breakfast, I eat eggs or a Food by George english muffin, with Polaner all fruit spread. Sometimes I drink 365's Vanilla Rice milk, and then I have Mott's apple juice. I also throw in pancakes or waffles made with Pamela's mix every now and then.

Lunch is usually small: a banana, Mott's applesauce, leftovers from dinner, an Enjoy Life bar (any combination of these), some times fish sticks or chicken nuggets from Ian's.

Dinner depends: Usually Tyson chicken, often Minute Rice, egg salad (using Mission corn tortillas or Green Mountain Gringo corn chips), tuna salad (with Whole Foods' tuna), Hellman's mayo, Annie's natural mustard, Annie's dressings, Delmonte veggies, potatoes, sweet potatoes, pasta salad (using the condiments above), fresh cantelope I slice myself, deviled eggs, potato salad--both using the condiments above.--I'm sure there's more, but these are the common foods.

My only thoughts are that I'm foods that are contaminated at the factory--maybe Annie's dressings/mustard? Most everything else I eat is either meat, fruit, or veggies, or foods made in a dedicated gluten-free bakery. I also am dairy and soy free.

Whew--sorry that's so long! Thank you all *so* much again for your help!

[jerseyangel]

The only things that jump out at me are the processed foods--those could be cross contaminated at the factory.

Focus on the products that you tend to eat often--if you eat a food often or every day, it could make you feel constantly sick. Not to mention keeping your blood tests positive.

Could you try and eat nothing processed, get to feeling better (hopefully) and then try your favorites one at a time?--that should tell you what's causing the problem.

I had a similar thing happen with Lay's potato chips.

[clbevilacqua]

I know this sounds picky-but you seem to be very sensitive in your gluten reactions. It only takes 1 gluten protein to cause a reaction. So your boyfriend brushing his teeth isn't always going to do it. And does he drink beer? And do you share a dishwasher or wash dishes in the same sink? Since a gluten protein does break down in normal daily living-it can "lurk" in your kitchen. It sounds like you are getting cross contaminated in your own home somehow. Good luck in figuring it out. I know it's difficult to try to pin down-but hang in there!

Sorry-my bad-I didn't proof read as well as I thought.

Should be since the protein does NOT break down in normal daily living.

[kbtoyssni]

Okay, here's the rundown: I haven't eaten out in 1.5 years and cook all my stuff, so there's nothing there. I make my boyfriend brush his teeth before kissing, and I never kiss him on the cheek or anything because of his toiletries.

It sounds like his toiletries may contain gluten. Would he be willing to use gluten-free brands? I can only imagine - he puts gluten lotion on his face, it gets on his hands, he touches something in the kitchen... It's just too risky.

Do you share condiments? If the open mustard goes into his gluten area of the kitchen it might get airborne crumbs in it or he may touch the jar with his gluten hands...

[Guest Kathy Ann]

Have you ever tested for other food allergies? I know my dairy, soy, egg and other allergies give me trouble as a group nearly as much as the gluten does. Maybe there is one extra allergy you have never discovered that keeps your body on "red alert." Since you're so careful, maybe the gluten is under control and it's another allergy. Just a thought.

[gf4life]

If your boyfriend's toiletries contain gluten, and you spend anytime touching him anywhere on his body, then you are getting gluten on your hands and unless you wash your hands everytime you touch him, then you could be ingesting gluten. I assume you sleep together (in the literal and non-literal sense), so there is a high risk there.

Also I agree with the previous statement about gluten "lurking" in the kitchen. I hope you don't mind if I share an expereince we had at my house. My husband usually would eat oatmeal at breakfast, and we didn't have issues with that. One day he decided to switch to Zoom (100% wheat hot cereal). I was nervous about it, but he said he would be careful. It was the ONLY gluten item in the house at that time. He would cook the cereal in his own pot, eat it from his own private bowl, wash the dishes separately with his own sponge, yet we still got sick. He ate it every day for a week. The first few days he didn't believe me that we were getting glutened. All 4 of us on the gluten-free diet had stomach issues that week and my husband kept saying it was a bug. It finally took both my daughter and I breaking out in DH for him to believe me. This was the only gluten in the house and we never ate out that week. There was no other possibility for glutening and our symptoms got better when he got rid of the Zoom. He was very careful, yet we still got sick. After that he rarely brings gluten into the house and when he does, most of the time he eats it outside. I know this iseems extreme, but sometimes you have to be.

[mouse]

I am not trying to hijack this thread, but what test do I ask for to see if I still have gluten in my body. I am having some ataxia moments and I got the impression when I was diagnosed, that if I stayed gluten-free, then it would not progress. So, I thought maybe I should be retested for gluten. But, I don't see the need for the whole panel.

[CarlaB]

It sounds like his toiletries may contain gluten. Would he be willing to use gluten-free brands? I can only imagine - he puts gluten lotion on his face, it gets on his hands, he touches something in the kitchen... It's just too risky.

This was what stood out to me.

My whole house went gluten-free except for individually packaged foods that the kids take to school for snacks. I was just getting too much contamination at home. My husband eats gluten only away from home, and never on "date night". All the products in our house are gluten-free.

and when he does, most of the time he eats it outside. I know this iseems extreme, but sometimes you have to be.

LOL Good to know someone else does this!!! I just said last night that it is going to be funny that my kids will consider donuts and pizza to be good weather foods!!

[jmengert]

Thank you everyone for your great ideas. I've thought of making our house gluten-free (even our dog eats gluten-free ) but I hate to make my boyfriend eat gluten free when he doesn't have to. However, I do feel like now I'm justified in doing so, but I just don't want to be too pushy....argh! This is very frustrating.

Also, I believe most of his toiletries are gluten-free--his face lotion is, as is his body lotion, and he doesn't use hair gel or anything like that. His shampoo/conditioner is also gluten-free, so I'm doubting issues from that.

Maybe it has come to that--maybe it's time to make our whole house gluten-free. We do share a sink, and we don't have a dishwasher, so that could be it, even though we use separate pots and pans.

One last thing--would positive blood levels indicate any other illness? (crohn's, colitis, etc.)

Also, Armetta, I had the celiac panel run--all 5 tests. I would suggest doing all 5 just in case.

[Adelle]

Do u2 use the same sponge to clean the dishes?? U may have already thought of it, but I just thought I'd throw that out there

[Drama-Queen]

usually use paper plates and forks-

Hellman's mayo,

These are what I think is the culprit of your problems. Check your condiments for binders. Often times they are used to make the food not seperate out.

Paper plates and forks, wierd I know, but it is just like the glue on stamps. They use wheat fiber to bind the fibers of the paper together in paper plates. You could be poisoning yourself unintentionally. Check with the company on what they use to make their paper plates. Or just resort to washing dishes in the sink. Chore, I know, but think of it as your daily meditation or break from your hectic life.

Mayo, once again here is the problem of binders. Also, check the vinegar they use, white vinegar is made from wheat. The gluten is probably hidden somewhere and you are not seeing it. I switched to a mayo that is strictly gluten free. Don't be afraid to call companies or send them a letter! Squeaky wheel gets the oil!

Also thought of something else....Your apple juice, is it from concentrate? Sometimes those made from concentrate can be iffy. I only use straight squeezed juice not from concentrate and processed in a clean facility. This is realllllllly picky but it may help. I am also extremely sensitive like you it seems, I get full body hives from just touching the outside package of a loaf of wheat bread. I also get anaphalaxis symptoms when I walk into a regular bakery from all the flour in the air.

Maybe you just need to be extra careful like me!

Hope this helps!

[Pilgrim South]

Thank you everyone for your great ideas. I've thought of making our house gluten-free (even our dog eats gluten-free ) but I hate to make my boyfriend eat gluten free when he doesn't have to. However, I do feel like now I'm justified in doing so, but I just don't want to be too pushy....argh! This is very frustrating.

Also, I believe most of his toiletries are gluten-free--his face lotion is, as is his body lotion, and he doesn't use hair gel or anything like that. His shampoo/conditioner is also gluten-free, so I'm doubting issues from that.

Maybe it has come to that--maybe it's time to make our whole house gluten-free. We do share a sink, and we don't have a dishwasher, so that could be it, even though we use separate pots and pans.

One last thing--would positive blood levels indicate any other illness? (crohn's, colitis, etc.)

Also, Armetta, I had the celiac panel run--all 5 tests. I would suggest doing all 5 just in case.

I was just reading through these posts and hope its not intruding. I don't usually post here, but...I just discovered that my paper plates/cups possibly can contain gluten. I contacted the manufacturer and they told me there was a possibility they could contain traces of gluten. Also, dishwasher soap can! Its amazying where tiny amounts can be hiding that we just don't know about. Maybe by now you have discovered your culprit but thought you might want to know about these two things too.

[Jestgar]

They use wheat fiber to bind the fibers of the paper together in paper plates. You could be poisoning yourself unintentionally.

Are you kdding me!!! I would have never considered that!!

Thanks for bumping this Pilgrim South, I missed this post before.

[happygirl]

Mayo, once again here is the problem of binders. Also, check the vinegar they use, white vinegar is made from wheat. The gluten is probably hidden somewhere and you are not seeing it. I switched to a mayo that is strictly gluten free. Don't be afraid to call companies or send them a letter! Squeaky wheel gets the oil!

Hellman's Mayo is gluten free. Distilled vinegar is gluten free. Now, if you are reacting (which, you don't say that you are, necessarily), it is beyond the gluten free status; some people react to vinegar for other reasons.

Also, you might need to be re-scoped....higher numbers for extended periods of time can be indicative of refractory celiac.

I am so sorry for you to go through all of this. You might need to really find a Celiac 'expert' (someone like Dr. Green or Dr. Fasano) to help you deal with this.

[daffadilly]

besides the kitchen cross contamination, I would highly suspect the gluten-free waffles and pamelas mixes etc. It is my opinion that the grains they use have some cross contamination. I love some of those products but I will get glutened most every time. It is just not worth it. I mostly eat whole foods, except when I feel I must have something sweet, I will use gluten free pantry brownie mix, or make something from scratch, and this is rarely.

I never use gluten-free pasta, the glutening is just not worth it to me - when i can just use rice.

also, you might check your paper plates, they might have wheat or something in the manufacturing process.

I would only use a glass plate.

you are probably getting glutened from a combination of sources, the gluten in your kitchen and the gluten free grains that in my opnion are cross contaminated. Some people can tolerate it and some cannot.

[oceangirl]

besides the kitchen cross contamination, I would highly suspect the gluten-free waffles and pamelas mixes etc. It is my opinion that the grains they use have some cross contamination. I love some of those products but I will get glutened most every time. It is just not worth it. I mostly eat whole foods, except when I feel I must have something sweet, I will use gluten free pantry brownie mix, or make something from scratch, and this is rarely.

I never use gluten-free pasta, the glutening is just not worth it to me - when i can just use rice.

also, you might check your paper plates, they might have wheat or something in the manufacturing process.

I would only use a glass plate.

you are probably getting glutened from a combination of sources, the gluten in your kitchen and the gluten free grains that in my opnion are cross contaminated. Some people can tolerate it and some cannot.

Julie,

If you're still reading this, thank you for this thread. I just had my panel rerun after 5?ish months gluten-free and my tTg is positive again. Low, but, what the heck? I am also experiencing symptoms and, like you, cannot find the culprit. I think the people who advised using nothing processed for awhile have a good point. I am going to try excluding the chips I eat every day and I still haven't found a gluten-free dogfood in my area so I'll try harder. I just wanted to tell you you're not alone and it's daunting having those numbers in front of you. You asked if the positive tests could indicate other diseases. I believe the tTg can be an indicater of inflammatory bowel diseases or liver dysfunction- have you been biopsied? I figure for myself as they didn't see any other bowel disease after endoscopy and colonoscopy that it seems likely linked to gluten intolerance. If you google the tTg (anti-tissue Transglutaminase) it explains some of these things.

Good luck to you and I hope you find the answer and heal soon!

lisa

[Guest nini]

I was told it takes an AVERAGE of two years to heal, if you were really sick to begin with it could just be taking you longer. Also, dairy can be a big factor, it can irritate already irritated villi if you aren't healed yet. I would look at multiple food intolerances before refractory sprue, refractory sprue does exist, but it very rare for someone to have true refractory sprue.

That being said, I would suspect either the paper plates or your boyfriend... I know my hubby isn't very careful with his gluten around the house and I have to be super vigilant if I don't want me or my daughter to get sick. Also, his body oil he was using after his bath has wheat germ in it... ACK and that stays ALL over him and gets into the bed and on the dog if he pets the dog... on and on... I suffer from mysterious glutenings quite frequently at home and that's all I can figure it to be... (unless I too am having a problem with dairy again).

[eKatherine]

Julie,

If you're still reading this, thank you for this thread. I just had my panel rerun after 5?ish months gluten-free and my tTg is positive again. Low, but, what the heck? I am also experiencing symptoms and, like you, cannot find the culprit. I think the people who advised using nothing processed for awhile have a good point. I am going to try excluding the chips I eat every day and I still haven't found a gluten-free dogfood in my area so I'll try harder. I just wanted to tell you you're not alone and it's daunting having those numbers in front of you. You asked if the positive tests could indicate other diseases. I believe the tTg can be an indicater of inflammatory bowel diseases or liver dysfunction- have you been biopsied? I figure for myself as they didn't see any other bowel disease after endoscopy and colonoscopy that it seems likely linked to gluten intolerance. If you google the tTg (anti-tissue Transglutaminase) it explains some of these things.

Good luck to you and I hope you find the answer and heal soon!

lisa

Solid Gold makes a low-carb dog food that is grain-free. Solid Gold products are carried by Open Original Shared Link. Probably either one carries that type or you could talk one into getting you a case.

[oceangirl]

Solid Gold makes a low-carb dog food that is grain-free. Solid Gold products are carried by Open Original Shared Link. Probably either one carries that type or you could talk one into getting you a case.

eKatherine,

Thank you for that. I will look for that at a pet food store. I am getting a little tired of seeing the glutenous dogfood strewn all over the kitchen floor! Thanks.

lisa