Should I Get More Strict?

[Roda]

May '09

Gliadin IgA = 23

Gliadin IgG = 66

Feb. '10

Gliadin IgA = 15

Gliadin IgG = 61

19 Units or less:........Negative

20-30 Units:.............Weak Positive

31 Units or greater:.....Positive

There is some difference but not a whole lot. I'm not IgA deficient. I know the gliadin IgG is positive still, so should I be looking for hidden gluten or cross contamination? I'm having a hard time with instilling any more rules on the husband and children. I know he is willing and the kids will adapt just fine, but he won't be completely happy about it. I had a normal gallbladder ultrasound, so I'm going to probably have the Hida next. I feel the best when I don't eat anything. About 15-20 min. later my stomach is bloated up and it seems to take forever for it to empty. Could other food intolerences cause this? The thought of giving up anything else, well frankly just sucks to me. I'd do it but wouldn't be happy. How would I start out eating to figure out what would be causing the problem? I know all of my medicications/supplements are gluten free. Shampoo/lotions etc. I'm unsure of but can check.

[mushroom]

May '09

Gliadin IgA = 23

Gliadin IgG = 66

Feb. '10

Gliadin IgA = 15

Gliadin IgG = 61

19 Units or less:........Negative

20-30 Units:.............Weak Positive

31 Units or greater:.....Positive

There is some difference but not a whole lot. I'm not IgA deficient. I know the gliadin IgG is positive still, so should I be looking for hidden gluten or cross contamination? I'm having a hard time with instilling any more rules on the husband and children. I know he is willing and the kids will adapt just fine, but he won't be completely happy about it. I had a normal gallbladder ultrasound, so I'm going to probably have the Hida next. I feel the best when I don't eat anything. About 15-20 min. later my stomach is bloated up and it seems to take forever for it to empty. Could other food intolerences cause this? The thought of giving up anything else, well frankly just sucks to me. I'd do it but wouldn't be happy. How would I start out eating to figure out what would be causing the problem? I know all of my medicications/supplements are gluten free. Shampoo/lotions etc. I'm unsure of but can check.

Yes, I think you should check all your personal care products, cleaning products; make sure you use separate sponges and cloths for dishes and clean-up, stuff like that.

If that doesn't do it, from my perspective if there were additional food intolerances the most likely culprits would be soy and corn. Those would be what I would try first, although not at the same time

Good luck on your Sherlock Holmesing.

[ravenwoodglass]

Yes, I think you should check all your personal care products, cleaning products; make sure you use separate sponges and cloths for dishes and clean-up, stuff like that.

Ditto. Also try to go with as much unprocessed food as you can and make sure you are checking all your meds both script and OTC.

[Roda]

All my meds are fine, I'm pretty sure of that. Kitchen towels/dishcloths could be one source of problem. I eat very little processed food. I already make most everything from single ingredients. There are a few things such as condiments and our marinade but I know those are gluten free, but I know the outside of the containers are not so I always wash before I handle my food. I've replaced almost all of my herbs/spices. I can't see where my cookwear is a problem. They are all caflon and they don't have a teflon surface. There is the griddle and one pot I don't use anymore since they are strictly for the husband. It probably is a cc issue with my husbands bread, crackers, bagles and crumbs on the counter. He will walk around the house with sandwiches etc. so he probably touches everything. The dog is on a grain free food, but the cat is not. I don't think the animals are the issue. I do think I have something else going on besides a cc issue. I can't even exercise lateley without my stomach hurting and wanting to throw up. I may start with dairy and see if it helps. Frankly though it does not really seem to matter what I eat.

My labs from May '09 was the first time I had those tests done and it was at six months gluten free. I did not get upset by it at that time since I never had a baseline before gluten free. I asked for them to be redone so I could see if there was a change. Not much to count.

[Lynayah]

Be careful with the meds and over the counter stuff. I was "pretty sure" too, and it turned out some had gluten, including vitamins and digestive enzymes. Call the company, always.

After much trial and error, I now use stainless steel cookware only, and I've asked my family to use our other cookware (including Calphalon) for gluten containing foods.

Dish towels are indeed a good source of problems. We have a kitchen at work. I kept getting glutened -- it got better only when I brought my own dedicated plate, bowl, silverware, cutting knives (which I keep in a container in my office) AND started using paper towels for washing/drying instead of kitchen towels.

Plastic storage containers: Unless they are brand new and dedicated to my food only, I cannot use them. Even if washed in a dishwasher, I cannot use them. I purchased wide-mouth glass Ball jars (canning section at store), and I love them. If I need a plastic container, I buy new Gladware, mark it with "gluten-free," hand wash it and store it in a gluten-free area I created for myself.

It is so frustrating at first. You try and try and TRY, yet something keeps "getting" you. I know, I know. Part of it comes from it being hard to believe that such minor little things can cause such big problems . . . but they do.

And it isn't just us who feel this way, our family feels the same. At first it seems okay to walk around with a sandwich . . . "how can it hurt?" My hubby was the same way. When I kept getting sick, he finally began to realize that maybe it really IS true that just one little misplaced crumb is like an atom bomb in my stomach.

Is all of this a pain in the wazoo? You bettcha. But after a while, it all comes together and just feels normal, especially when family finally starts to "get it." The good news: It will all get better!

[Roda]

My levothyroine is from Mylan and it is gluten free. My liothyronine is from Padock and I confirmed it is gluten free also. My folic acid and b12 are Nature made and it states gluten free on their website and bottles. My probiotic the same thing dds I think. I take slow Fe when I remember. Occasionally I will take a generic zyrtec usually cvs brand. I think I will completely decomtaminate my kitchen (again) and sit down with my husband and try and work out a solution. It won't be easy to sell him on this. Putting things in perspective I can see many problems. Kids eating pretzels, crackers, poptarts etc all over the house. I do make them wash their hands when they are done, but I'm not always here. I'm just a little overwelmed right now because I'm frustrated and tired. I would love to have the house completly gluten free, but I don't see the rest of them compromising to that extreme. Overt glutenings I am symptomatic very soon. I think this possible cc issue is more subtle.

[Lynayah]

PS: Even my toothpaste had gluten in it! It took weeks before I found out.

I was also using hand lotion with gluten . . . not too much of a problem as long as I didn't have a cut on my hand . . . but whoops! I'd eat something with my hands and touching the food before it went into my mouth cross contaminate me. Gluten in shampoo or conditioner: not good if any of the water runs into your mouth as you rinse your hair. Lipstick is another common source.

CHECK EVERYTHING.

[Lynayah]

My levothyroine is from Mylan and it is gluten free. My liothyronine is from Padock and I confirmed it is gluten free also. My folic acid and b12 are Nature made and it states gluten free on their website and bottles. My probiotic the same thing dds I think. I take slow Fe when I remember. Occasionally I will take a generic zyrtec usually cvs brand. I think I will completely decomtaminate my kitchen (again) and sit down with my husband and try and work out a solution. It won't be easy to sell him on this. Putting things in perspective I can see many problems. Kids eating pretzels, crackers, poptarts etc all over the house. I do make them wash their hands when they are done, but I'm not always here. I'm just a little overwelmed right now because I'm frustrated and tired. I would love to have the house completly gluten free, but I don't see the rest of them compromising to that extreme. Overt glutenings I am symptomatic very soon. I think this possible cc issue is more subtle.

For my family, it was easier for me to make a dedicated gluten free area on my kitchen counter. I put newspaper down to mark the area, and when I'd use the area, I'd put fresh newspaper down. I also use dedicated chopping boards which I've Sharpee-marked marked with GLUTEN FREE (tons of things in this house are Sharpee marked MOM or GLUTEN-FREE). I feel like a school kid!

[tarnalberry]

Honestly, if there are that many crumbs on the counter and around the house, I'd pretty much say that you're not gluten free.

I'd also say, you gave a good shot, for a year, trying it a way that was more generous to your family. Happy or not, they need you healthy, and you need you healthy. I'd crack down on the crumbs/eating around the house. (My husband, for instance, eats his bread over a plate - never just "out in the open").

[GFinDC]

How about tea or coffee? Some flavored teas have barley. Not sure on the coffees but seems worth checking. If you are doing any processed foods, even if they claim to be gluten-free, you might just try eliminating those for a while and see if things improve.

You might want to look at the top allergens lists also and see if there is anything there. Additional food intolerances seem to be pretty common among us.

[T.H.]

I would also wonder about CC for the gluten-free spreads you have - does anyone with gluten foods dip the knife into these after they have already touched their bread with the knife?

But re: food issues - if it's all the time? I would think the best thing to start with would be what you eat daily, yeah? Tea or coffee? (I found out I was allergic to coffee after I went gluten-free) And tea bags are sealed with gluten, i understand.

Others that come to mind for me would be soy, dairy, or corn, as they are the base for so many ingredients. Corn is a HUGE one, if you haven't researched that one. It was getting me, and I finally found out it contaminated almost everything I had as a powder: morton's salt, baking powder, etc...

May '09

Gliadin IgA = 23

Gliadin IgG = 66

Feb. '10

Gliadin IgA = 15

Gliadin IgG = 61

19 Units or less:........Negative

20-30 Units:.............Weak Positive

31 Units or greater:.....Positive

There is some difference but not a whole lot. I'm not IgA deficient. I know the gliadin IgG is positive still, so should I be looking for hidden gluten or cross contamination? I'm having a hard time with instilling any more rules on the husband and children. I know he is willing and the kids will adapt just fine, but he won't be completely happy about it. I had a normal gallbladder ultrasound, so I'm going to probably have the Hida next. I feel the best when I don't eat anything. About 15-20 min. later my stomach is bloated up and it seems to take forever for it to empty. Could other food intolerences cause this? The thought of giving up anything else, well frankly just sucks to me. I'd do it but wouldn't be happy. How would I start out eating to figure out what would be causing the problem? I know all of my medicications/supplements are gluten free. Shampoo/lotions etc. I'm unsure of but can check.

[Roda]

I know for sure there is no double dipping in any jars. Most everything is in squeeze bottles. I've made a list of things for me to check on. If anyone knows the status I'd appreciate it. I've been researching and contacting. Gold Bond lotions, Johnson's baby wash and lotions, equate liquid soap-milk and honey, windex, lysol antibacterial kitchen cleaner, cascade action pacs, pamolive dish soap, crest whitening plus scope, burts bee's lip balm, loreal true match naturale gentle mineral makeup, gas ex liquid gels, tums, and my rx vit. D. I did a little digging and I believe the toothpaste, lip balm gas ex, and tums are gluten free. The gold bond and johnsons lotions I think are probably fine. I sent emails just in case. So at this point I don't know about the cleaners, makeup liquid soap and diswasher/dish soap. I'll look into my vit. D too.

I don't drink coffee, so no problem there. I will occasionally drink iced tea and we use lipton just plain no flavorings and no sugar. I am going to gradually convert the kids cereals to ones that are gluten free and feed them the gluten free pasta (they don't care). I am going to scrub down the fridge in the morning and give them a crisper drawer to keep all the crackers/bagles in one spot. I am banning play doh and will be replacing it with a gluten free alternative. My husband has agreed to pay more attention to details. I should have done this a long time ago, but I thought I could make it work. I still think there is something else wrong. I felt great today, but that was after about 12+ hours of not eating. I ate a little supper and feel alright, not great. I've decided to keep a food journal to see if anything sticks out. I have not eliminated anything else yet. It may come to that though. I am also going to go back and get rid of some more stuff in the kitchen (bakewear and stuff)

[Roda]

Well at least something is going right.

Feb. '10 tTg IgA = 6

May '09 tTg IgA = 10

Sept '08 tTg IgA = 75 or 78 (I think)

reference range 19 and up positive

[Lynayah]

Roda, you ROCK! Keep up the good work! Please keep keeping us advised.

Many others here are going to learn from all you post. Everything you are going through will not be in vain. You are a blessing.

[jackay]

After being tested for additional food intolerances and avoiding those foods, I keep a food journal. So far I haven't been able to pinpoint any foods so I could possibly be getting cc. My husband isn't careful so I am super careful. I wash my hands constantly. If I'm not sure of something, I don't eat it.

I've been feeling worse lately. Sleep, which was never good, isn't as plentiful. My back and shoulder pain is worse and I've had lots more headaches. The D isn't as bad but I still have it some days. In the past, gluten didn't seem to be the cause of my headaches so it could possibly be other food intolerances. Once I eliminated all the additional foods I tested intolerant to (still having a little rice as it is in supplements), I thought I'd be feeling so much better, not worse. I'm very discouraged.

[climbmtwhitney]

Hi Roda,

Just a thought.....you mentioned that the dog is on a "grain free" food but the cat is not. Are you washing your hands after feeding the DOG or when she licks you??? I myself researched & purchased 3 different brands of "grain free" dog food that don't add any gluten ingredients. And know what? All 3 brands tested POSITIVE for gluten using the EZ Gluten test kits. After calling the different manufacturers I discovered that they are all made on the same lines as grain dog food. Guessing they don't sanitize the production lines for pet food as well as the lines for human food. So, if you're feeding the pup and thinking you don't need to wash up that may be your problem. I know our pup loves to lick too, so we are constantly washing around here. Ugh.

Hope you figure it out soon.

Best,

Jillian

[Roda]

Roda, you ROCK! Keep up the good work! Please keep keeping us advised.

Many others here are going to learn from all you post. Everything you are going through will not be in vain. You are a blessing.

Thanks for the encouragement. It still goes to show that it is always a learning process no matter how long it has been.

[Roda]

Hi Roda,

Just a thought.....you mentioned that the dog is on a "grain free" food but the cat is not. Are you washing your hands after feeding the DOG or when she licks you??? I myself researched & purchased 3 different brands of "grain free" dog food that don't add any gluten ingredients. And know what? All 3 brands tested POSITIVE for gluten using the EZ Gluten test kits. After calling the different manufacturers I discovered that they are all made on the same lines as grain dog food. Guessing they don't sanitize the production lines for pet food as well as the lines for human food. So, if you're feeding the pup and thinking you don't need to wash up that may be your problem. I know our pup loves to lick too, so we are constantly washing around here. Ugh.

Hope you figure it out soon.

Best,

Jillian

For the most part it is the kid's job to feed the animals. I always wash after I play and pet the animals. Dog is not a licker, but cat is sometimes. They get fed once a day after school so no food is ever sitting in the bowl to get knocked around. They usually clean it up. I am considering putting the cat on the same brand as the dog food. I am currently feeding the dog Taste of the Wild. I think they have a cat food too.

[Roda]

I felt the best I have felt in awhile last night. Where I had not eaten my blood sugar dropped way low and I was a royal b***h. I cooked dinner and actually felt really good after. I was hungry later and ate some nut thins and even ate some icecream. I did not start getting any heartburn until around 2:00 am, took 4 tums and went to bed. Feel good for the most part this morning. Doctors office called to tell me what I already knew and to urge me to take the kapidex for at least two weeks and if it did not help call back. Recheck what I could be doing different since my gliadin antibodies were still high. They don't want to order the hida scan, but will do a scope if I insist enough. I was told if I have an ulcer or gastritis that they would have me take the kapidex anyway. I just don't want to mask something with pills in the event something else could be wrong. Maybe I am looking to far into it. I suppose if it is cc it could have taken this long to build up. It is just taking so long to feel relief. The stomach distension/discomfort has subsided for now though. I just don't know what to do. I discovered a few nights ago my dried cranberries on the computer desk. I asked who was eating them (I don't usually care). MY oldest son had and I then questioned him further and he had been eating goldfish crackers and going back and forth beteween containers. He was sorry, but I told my husband he needed to watch them better. Also hubby was emptying some pretzels out of a tub into a bag and then turned around to empty the diswasher! I told him to stop and wash his hands first! It really makes me wonder what goes on when I'm not home (at work). He should know better! They all know that the gluten free stuff is on the bottom and middle shelf of the pantry. I don't care to share things but they don't need to contaminate it. I believe everybody else in the house, after I started feeling better, has gotten a little lazy. Until now I just didn't know how much. I've already warned my parents how things would be when they come to visit. Basically my mom gets it but dad does not. As long as we keep him out of the kitchen things will be alright. I also don't know how to deal with visiting my inlaws. The weekend in Jan. that we went I started having symptoms the next day. I did eat her food and hubby said he watched her carefully. That does not mean the stuff was not contaminated. We were already having a strained visit (her and I) so I know if I refuse to eat her food she would make the visit very uncomfortable. I don't want to come off as the bad guy, but have really decided it is not safe for me to eat anything there that I don't make myself. Then of course I get to hear about her brother's mother in law who is celiac, but eats regular cake and is fine. So she is hinting that she thinks I'm neurotic. Things are changing, I just hope everyone weathers the storm!

[Lynayah]

I felt the best I have felt in awhile last night. Where I had not eaten my blood sugar dropped way low and I was a royal b***h. I cooked dinner and actually felt really good after. I was hungry later and ate some nut thins and even ate some icecream. I did not start getting any heartburn until around 2:00 am, took 4 tums and went to bed. Feel good for the most part this morning. Doctors office called to tell me what I already knew and to urge me to take the kapidex for at least two weeks and if it did not help call back. Recheck what I could be doing different since my gliadin antibodies were still high. They don't want to order the hida scan, but will do a scope if I insist enough. I was told if I have an ulcer or gastritis that they would have me take the kapidex anyway. I just don't want to mask something with pills in the event something else could be wrong. Maybe I am looking to far into it. I suppose if it is cc it could have taken this long to build up. It is just taking so long to feel relief. The stomach distension/discomfort has subsided for now though. I just don't know what to do. I discovered a few nights ago my dried cranberries on the computer desk. I asked who was eating them (I don't usually care). MY oldest son had and I then questioned him further and he had been eating goldfish crackers and going back and forth beteween containers. He was sorry, but I told my husband he needed to watch them better. Also hubby was emptying some pretzels out of a tub into a bag and then turned around to empty the diswasher! I told him to stop and wash his hands first! It really makes me wonder what goes on when I'm not home (at work). He should know better! They all know that the gluten free stuff is on the bottom and middle shelf of the pantry. I don't care to share things but they don't need to contaminate it. I believe everybody else in the house, after I started feeling better, has gotten a little lazy. Until now I just didn't know how much. I've already warned my parents how things would be when they come to visit. Basically my mom gets it but dad does not. As long as we keep him out of the kitchen things will be alright. I also don't know how to deal with visiting my inlaws. The weekend in Jan. that we went I started having symptoms the next day. I did eat her food and hubby said he watched her carefully. That does not mean the stuff was not contaminated. We were already having a strained visit (her and I) so I know if I refuse to eat her food she would make the visit very uncomfortable. I don't want to come off as the bad guy, but have really decided it is not safe for me to eat anything there that I don't make myself. Then of course I get to hear about her brother's mother in law who is celiac, but eats regular cake and is fine. So she is hinting that she thinks I'm neurotic. Things are changing, I just hope everyone weathers the storm!

It can be hell, no two ways about it. I'm still going through it. Last weekend, hubby and I cooked together, and I couldn't believe how many times I had to remind him how not to cross contaminate things. He doesn't mean to do things wrong--he really cares! Yet, years of doing things the "other way" make it difficult for him to get it.

Example: He peeled some onions and then threw the peelings away . . . but it did it by tapping the container against a surface that might be glutened. Then he started to reuse the container. If I hadn't been watching, and if I hadn't warned him not to do it, he would have done it, and I never would have known about it.

One of the most frustrating things about having to adapt to all of this is trying to figure out WHERE THE HECK the gluten is coming from . . . this is but one of many examples of how easily it can happen . . . even with those who love us and care about us.

Heck, I've done it to myself! Mistakes live everywhere, alas.

Old dogs, new tricks. It's TOUGH, really, really, really TOUGH!

I'll hang in there if you will! Sending a hug.

[Roda]

Lynayah--Hubby does really care too. We both have adapted to his chronic condition and I would much rather deal with gluten than what he has had to deal with in the last 4 1/2 years. We'll get through it. I know what you mean, I've glutened myself before too! Last dumb one was eating some little milkyway bars I stole from the kids halloween candy. Later I realized they were not safe. It's nice to have you to talk to for support.

[Lynayah]

Lynayah--Hubby does really care too. We both have adapted to his chronic condition and I would much rather deal with gluten than what he has had to deal with in the last 4 1/2 years. We'll get through it. I know what you mean, I've glutened myself before too! Last dumb one was eating some little milkyway bars I stole from the kids halloween candy. Later I realized they were not safe. It's nice to have you to talk to for support.

I so get it. What a crazy life we lead, yes?

I cling to the belief that everything happens for a reason. I must believe that my going through this is for the best, even if I do not understand all the reasons why right now.

Every night, I send hope that others will learn from my mistakes.

Somehow, that makes it all okay -- at least a little.

[CarbQueen]

May '09

Gliadin IgA = 23

Gliadin IgG = 66

Feb. '10

Gliadin IgA = 15

Gliadin IgG = 61

19 Units or less:........Negative

20-30 Units:.............Weak Positive

31 Units or greater:.....Positive

There is some difference but not a whole lot. I'm not IgA deficient. I know the gliadin IgG is positive still, so should I be looking for hidden gluten or cross contamination? I'm having a hard time with instilling any more rules on the husband and children. I know he is willing and the kids will adapt just fine, but he won't be completely happy about it. I had a normal gallbladder ultrasound, so I'm going to probably have the Hida next. I feel the best when I don't eat anything. About 15-20 min. later my stomach is bloated up and it seems to take forever for it to empty. Could other food intolerences cause this? The thought of giving up anything else, well frankly just sucks to me. I'd do it but wouldn't be happy. How would I start out eating to figure out what would be causing the problem? I know all of my medicications/supplements are gluten free. Shampoo/lotions etc. I'm unsure of but can check.

I had to give up cat sitting for a friend because the cat was making me sick whenever she licked me.

It was even harder to leave a relationship because of the gluttening from kissing.

As much as we love our SO they can make us deathly sick. He didn't wash his hands or brush his teeth before establishing contact. I was sick for 6 weeks after. He met me after work so his clothes were contaminated as well.

I withdrew from friends and relatives, then signed up for various support groups on the net, until my immune system improved. Loved ones can communicate with me via a prominent social group. I'm educating them while still maintaining a safe distance from contaminants. Even a hug will do me in.

It is definitely a crazy life we lead. Most people think we are paranoid. What's interesting is that this is hereditary. Those same people are suffering from allergies and food sensitivities, and they are living in denial.

Hopefully, they will learn something from us, and one day thank us for educating them about GI/Celiac Disease/Autoimmune diseases.

[Lynayah]

I had to give up cat sitting for a friend because the cat was making me sick whenever she licked me.

It was even harder to leave a relationship because of the gluttening from kissing.

As much as we love our SO they can make us deathly sick. He didn't wash his hands or brush his teeth before establishing contact. I was sick for 6 weeks after. He met me after work so his clothes were contaminated as well.

I withdrew from friends and relatives, then signed up for various support groups on the net, until my immune system improved. Loved ones can communicate with me via a prominent social group. I'm educating them while still maintaining a safe distance from contaminants. Even a hug will do me in.

It is definitely a crazy life we lead. Most people think we are paranoid. What's interesting is that this is hereditary. Those same people are suffering from allergies and food sensitivities, and they are living in denial.

Hopefully, they will learn something from us, and one day thank us for educating them about GI/Celiac Disease/Autoimmune diseases.

Clothes an issue -- that is interesting! Did he work in a bakery or restaurant?

[Roda]

Still having some heartburn, but not as bad. I took my first kapidex and it did help. However, I'm not going to take anymore at this time. I don't want the rebound acid reflux by stopping them. The Bloating and burping have come back ugg! I'm going to call Monday and ask for the Hida scan. I don't see what it will hurt and it will rest my mind. I quit doing a food diary, so I'll get back on it. On a positive note, everyone seems to be stepping it up some. The soy-yer dough came in today and my little boy and I love it. The scents are very subtle and are not overpowering. Some of them I can't even tell they have been scented. I scrubbed down all of his play-doh toys so we could play with the new stuff. I know what I will be doing tomorrow. It's going to be nice not to worry about what he is touching after playing with it and I can dig right in too.