High Antibodies After Three Months

[Nugget]

Hello Everyone,

This is my first post, although I have been logging on here A LOT in the past three months...maybe a little bit obsessively at times. This post is a little bit long because I want to be as precise as possible.

I was diagnosed with Celiac Disease the last week of November (via endoscopy after positive antibody blood tests). The day I got diagnosed with Celiac I immediately went 100% gluten free. My husband and I replaced pots and pans, cooking utensils, tupperware, and started from scratch in our cupboards and refrigerator. We bleached the entire kitchen from top to bottom. Everything that I ingest is gluten free, either inherently or certified gluten free packaged products. I either already used or switched to gluten free makeup (Bare Escentuals and Nars lipstick), lip balm (Chapstick/Burt's Bees), shampoo (Dessert Essence), face wash (Cetaphil), soap and body lotion (Kiss My Face), vitamins (Nature Made, Viactiv), Toothpaste (Tom's of Maine). Also, our dog has food that only has rice in it. No other grains. Plus, I wash my hands every time I feed her. We use Dawn dish soap (gluten-free). I make my own lunch to bring to work and don't eat out often. My husband keeps his gluten stuff in his own cupboard. I don't use the toaster at all.

I got blood tests back taken the first week of March, which means I was gluten-free for three months, and one antibody (Iga, I think) was at 122 from 130. My doctor said it should be below 20. The other antibody (forgive me, I forget what the antibodies are) was previously 32 and now it is at 33 (that's right. higher!). According to my doctor my levels could not be this high from a single glutening, so he thinks that I am ingesting gluten daily. I have since double checked or I am in the process of double-checking everything that I possibly could ingest in a day. So far, everything is gluten free.

In all of your experiences, my gluten free friends, what are your opinions? I have come up with two theories, but I honestly don't see how these possible scenarios could make my antibodies levels this high. But I'm new, so you never know:

-cross contamination from residual gluten on dishes? My husband drinks beer in glasses that we share.

-antibiotic ointment or bandaids with gluten? I have an awful nervous habit of biting at my cuticles and picking at my lip...and I've been really bad in the past month because I've been stressed so I've had bandaids and generic neosporin on my finger constantly. I can't find info on the ointment I've been using.

-spices I use to cook. per the nutritionist I saw, singular spices shouldn't contain gluten and i switched to McCormick anyway, just in case. i don't use blends.

I am getting blood tests in two months. I'm keeping a food journal in the meantime to try to figure this out. Any ideas, however farfetched, would be appreciated.

Thank you!

[mushroom]

Hello, and welcome.

Two thoughts: kissing your husband after he has eaten gluten; gluten in OTC and prescription meds and supplements. If you are particularly sensitive you can get gluten from door and kitchen knobs/handles so you should always wash your hands before touching your food. Do you have your own tubs/jars of spread, peanut butter, etc., to prevent contamination from crumbs? You really have to be a detective to find it all

[Nugget]

Hello, and welcome.

Two thoughts: kissing your husband after he has eaten gluten; gluten in OTC and prescription meds and supplements. If you are particularly sensitive you can get gluten from door and kitchen knobs/handles so you should always wash your hands before touching your food. Do you have your own tubs/jars of spread, peanut butter, etc., to prevent contamination from crumbs? You really have to be a detective to find it all

Hello, and thanks for the quick reply.

I steer clear of my husband when he has eaten gluten. He also switched to gluten free chapstick. We've made a couple of mess-ups in the past three months....once I actually got sick from it, but not enough gluten-kissing to keep my antibodies up, I would think. Kitchen knobs and handles are something I did not even think of! Thank you for that. I have my own peanut butter and we switched to squeeze bottles on everything else.

One more theory I woke up with this morning. My dog's shampoo has oatmeal in it. I figured I could use up the bottle we have and just clean out the tub and wash my up after. We wash her at home in the tub and she doesn't get rinsed that thoroughly. Is my dog coated with gluten? is that crazy? I pet her all of the time and she sheds like crazy. Just another theory. I'm getting desperate here!

Thanks!

[sa1937]

Welcome to the forum! I totally agree with what mushroom said.

For what it's worth, I was really bummed that my tTG was 10 in Jan. after being gluten-free for nine months (over 8 is positive on Quest Diagnostics lab test). That was the first follow-up test I had done. My IGG and EMA positive on my celiac panel are now negative. On my original celiac panel, my tTG was over 100. I should say that I live alone and have a gluten-free kitchen. I am so careful but was concerned that I was getting hidden levels of gluten in gluten-free foods. I was expecting a total negative on all tests. I cook a lot, don't eat out, etc.

My GI doc explained to me that we really don't know what that original tTG number really was...could have been 350 or even 1,000 since the lab testing only said over 100. He thinks I'm doing great. Kinda put my mind at ease and wants me retested before I go back for a yearly follow-up. I've also read that it can take a year or two to heal. While I've made a lot of progress, I still have a ways to go. And perhaps because I am older, that makes a difference.

At three months I was still having a lot of issues but I have no idea what my test results would have looked like at that time. I do hope you can pinpoint what might possibly be preventing your antibody levels from going down although I don't really know what should be expected at only the 3-month mark. Good luck!

ETA: Just curious...how do you feel now compared to when you had your celiac panel and EGD done?

[WW340]

My original numbers were very high. My GI said he would not be retesting those in the first year because they could fluctuate for a while and I would likely get frustrated.

It was actually longer than that before I was retested, because I didn't feel the need. I know I am staying as gluten free as possible.

You might look at how many gluten-free prepared foods you are consuming. There is enough cross contamination in the gluten-free products, that I will react if I eat very much.

The level of acceptable gluten is not zero, so the more prepared products you consume, the more low level gluten you are consuming as well.

[MsCurious]

Welcome to the forum! I totally agree with what mushroom said.

For what it's worth, I was really bummed that my tTG was 10 in Jan. after being gluten-free for nine months (over 8 is positive on Quest Diagnostics lab test). That was the first follow-up test I had done. My IGG and EMA positive on my celiac panel are now negative. On my original celiac panel, my tTG was over 100. I should say that I live alone and have a gluten-free kitchen. I am so careful but was concerned that I was getting hidden levels of gluten in gluten-free foods. I was expecting a total negative on all tests. I cook a lot, don't eat out, etc.

My GI doc explained to me that we really don't know what that original tTG number really was...could have been 350 or even 1,000 since the lab testing only said over 100. He thinks I'm doing great. Kinda put my mind at ease and wants me retested before I go back for a yearly follow-up. I've also read that it can take a year or two to heal. While I've made a lot of progress, I still have a ways to go. And perhaps because I am older, that makes a difference.

At three months I was still having a lot of issues but I have no idea what my test results would have looked like at that time. I do hope you can pinpoint what might possibly be preventing your antibody levels from going down although I don't really know what should be expected at only the 3-month mark. Good luck!

ETA: Just curious...how do you feel now compared to when you had your celiac panel and EGD done?

Hey Sylvia,

I just had a thought after reading that your test results were higher than you'd hoped they would be. Its just a stab in the dark, but I remembered you commenting on the Centrum vitamin post, that even though they can't say they are gluten free, you were still taking them. This could be your culprit, if you're taking them on a daily basis. Just a thought. Hope you can figure out what's CCing you, and that ya feel better!

[sa1937]

Hey Sylvia,

I just had a thought after reading that your test results were higher than you'd hoped they would be. Its just a stab in the dark, but I remembered you commenting on the Centrum vitamin post, that even though they can't say they are gluten free, you were still taking them. This could be your culprit, if you're taking them on a daily basis. Just a thought. Hope you can figure out what's CCing you, and that ya feel better!

I swear I just replied to this question. lol I have no idea why my antibody levels are slightly elevated. Nor would I have any clue if I'm getting CC'd or not. Or how long it takes for healing (I've read it could take a couple of years). And I am old. HA!

But the bottom line is that I feel great...very few problems. So a lot of progress has been made in the past year. One year gluten-free today. Yay!

[T.H.]

The level of acceptable gluten is not zero, so the more prepared products you consume, the more low level gluten you are consuming as well.

I'd second that. Gluten free just means 'below X amount of gluten,' where X is defined by a country's laws.

There are no laws in effect in the USA to say how much this is and regulate it. :-( The assumed level is 20ppm daily, but without regulation, a lot of companies are pretty much on their honor system. And products like lipstick and soap and shampoo - ask them if they test for gluten, some time. I have yet to find a company for hand/face/soap products that says yes. They just don't add any on purpose and so it's 'gluten free.' Which means there can be a HUGE difference between one company's gluten-free product and another's.

To be fair, I'm sure there are some around who test - I just haven't seen 'em yet.

If you chew on your nails a lot, I would honestly ditch the lotion for a little while. Use a gluten-free edible oil on your hands if you have to, one that's been actually tested for gluten, but I'd get rid of whatever you put in your mouth that hasn't been tested for gluten, at least.

Chapstick - IS there some that is gluten free? I had always heard that they all contained gluten.

Burt's Bees - I'd ditch that like a hot rock. The company was taken over by Clorox a few years back and they will no longer guarantee that ANY of their products are gluten free, if you really pin them down on it. They also have started adding in all sorts of crap to their stuff, so...yeah. A real shame.

As my family unfortunately found out, having gluten-free products only means that we're getting less gluten, not 'no' gluten. :-(

Although, as an aside - are you around a lot of baking or construction? There is a lot of gluten dust in the air in both cases, enough that you can inhale and digest enough to make you sick.

[Roda]

I would say that your dog has gluten on her from the shampoo. Commercial oats are crosscontaminated with wheat. Then you have around 10% of the celiac population that can't tolerate any oats at all even certified pure gluten free oats. I unfortunately fall into that catagory. In those sensitive people it can cause the same symptoms, and IMHO the same damage as the other offending grains. This happened to me as the light bulb went on for me one day. I realized I was reacting to Bob's Red Mill products. I believe them to be crosscontaminated from the processing of the gluten free oats they carry. They don't test for the protien (avenin) in oats though only the gliadin. So I would say it is a possibility and I would ditch the doggie shampoo.

[Nugget]

Hello everyone and thanks so much for all of the feedback.

I am glad to hear that a few of you feel that testing after three months is early.

On gluten-"free" packaged food, I really don't eat a lot of it, but I had tried out a lot of different things in my 3rd month because I had started getting cravings for bread, so maybe I was over-doing it right before my blood test.

Regarding gluten free status of bath/beauty products, it's true that most manufacturer's can only guarantee that gluten isn't added. Who knows about cross-contamination? I have directly contacted every company about the products I use and they have confirmed their gluten-free status. I'm not sure what else to do.

I also found out that a hair product I was using is full of gluten from wheat. The old packaging didn't indicate this. I'm have very short hair and I'm always twisting it so I guess my hands are just covered in wheat. Between that and my oat-covered dog, maybe it would be enough to keep the antibodies up? Right now I'm going back to whole foods until my blood tests (2 months), we washed the dog with Dr. Brommer's this weekend and we chucked the dog shampoo and the hair product.

I was feeling fabulous for the first two months being gluten free. I was sleeping better than ever before and I had more energy and I am a lot more calm in general. I didn't realize how the gluten affected my mental well-being. The past month I've been gassy and more irritable, I am breaking out in terrible acne, and I can't sleep well at all. I've also had a lot of life stress so I thought that was the problem.

Thanks again for all of your feedback!

[Evangeline]

The Gluten Free Society says that about 45% of Celiacs cannot eat any gluten, this includes the gluten in corn and rice, not just the gliadins in wheat, barley and rye. I saw two different studies published that stated that corn gluten damaged the intestines of Celiacs just as much as wheat gluten. I know I am definitely one of those people. Although I didn't notice any reaction to corn before I removed it from my diet, after I removed EVERY TRACE of it for 2 months, I had a little corn and had the BIGGEST GLUTEN reaction I've ever had in my life. My hair also began falling out again. Wheat is 79% gluten, corn is 55% gluten and rice is 5%. Corn is in citric acid, ascorbic acid and in vitamins and supplements. Also avoid soy, another common intolerance. Best of luck!

I found a blog where a Celiac documented his IgG levels while on a grain-free diet:

"My IGG level dropped from the 70's initially [after beginning a gluten-free diet], but never got any lower than 33. My doctor suggested in 2005 that if the IGG level was still in the 30's after a couple years on the diet, it probably would not improve, and I most likely had some permanent damage from the disease that kept it still high. So I stopped testing at that point, deciding it was not worth the cost to track my progress. Out of curiosity, I decided to retest these antibodies again [after a grain-free diet] and to my amazement, my IGG level was at a 2, the lowest it has been since diagnosis and within normal range which is 0-19. This was exciting news.

Also, his absorption levels increased:

"Ferritin previously at 26 was now 73 (normal 10-291)

Vitamin B12 previously at 320 was now 451 (normal 211-911)

Vitamin D previously at 33.1 was now 39.2 (normal 4.8-52.8)"

"To me this is confirmation that Dr. Osborne and Elaine Gottschall were on the right track although years apart. So here I am on a grain-free diet hoping to share the wonderful information these two have given me with you."

Source: Open Original Shared Link

[Nugget]

The Gluten Free Society says that about 45% of Celiacs cannot eat any gluten, this includes the gluten in corn and rice, not just the gliadins in wheat, barley and rye. I saw two different studies published that stated that corn gluten damaged the intestines of Celiacs just as much as wheat gluten. I know I am definitely one of those people. Although I didn't notice any reaction to corn before I removed it from my diet, after I removed EVERY TRACE of it for 2 months, I had a little corn and had the BIGGEST GLUTEN reaction I've ever had in my life. My hair also began falling out again. Wheat is 79% gluten, corn is 55% gluten and rice is 5%. Corn is in citric acid, ascorbic acid and in vitamins and supplements. Also avoid soy, another common intolerance. Best of luck!

I found a blog where a Celiac documented his IgG levels while on a grain-free diet:

"My IGG level dropped from the 70's initially [after beginning a gluten-free diet], but never got any lower than 33. My doctor suggested in 2005 that if the IGG level was still in the 30's after a couple years on the diet, it probably would not improve, and I most likely had some permanent damage from the disease that kept it still high. So I stopped testing at that point, deciding it was not worth the cost to track my progress. Out of curiosity, I decided to retest these antibodies again [after a grain-free diet] and to my amazement, my IGG level was at a 2, the lowest it has been since diagnosis and within normal range which is 0-19. This was exciting news.

Also, his absorption levels increased:

"Ferritin previously at 26 was now 73 (normal 10-291)

Vitamin B12 previously at 320 was now 451 (normal 211-911)

Vitamin D previously at 33.1 was now 39.2 (normal 4.8-52.8)"

"To me this is confirmation that Dr. Osborne and Elaine Gottschall were on the right track although years apart. So here I am on a grain-free diet hoping to share the wonderful information these two have given me with you."

Source: Open Original Shared Link

Hi Evangeline,

Thanks for posting. This is very interesting to me. I've noticed that I feel a lot better completely off grains... I was totally grain free for the first month after diagnosis. I've been considered doing the Paleo Diet. I think I may go grain free until my next blood test.

[GuyC]

Interesting discussion. I was diagnosed late October 2010 and my antibodies were 83. My retest in early January 2011 came in at 26. My doc just retested me and we're awaiting the results now. I live in a house with 3 gluten eaters so I'm always worried about CC.

[Gfreeatx]

If you are feeling good and know that you are eating gluten free I would not worry just yet if your numbers haven't moved too much. I was told by my dr. that it is pretty common for antibodies to take awhile to drop for some people. I was one of those people that it took about 8 months to see decent improvement on my numbers and I know others that it took a year or more.

[Nugget]

If you are feeling good and know that you are eating gluten free I would not worry just yet if your numbers haven't moved too much. I was told by my dr. that it is pretty common for antibodies to take awhile to drop for some people. I was one of those people that it took about 8 months to see decent improvement on my numbers and I know others that it took a year or more.

That makes me feel better. I have been so paranoid since I got my bloodwork back that I'm thinking about this day and night. I have a family member with Celiac and she didn't get tested until the 1-year mark. We'll see how the next blood test goes.