Still Have Active Coeliac Disease

[Mack the Knife]

I was diagnosed at the start of January this year by blood work and biopsy. I have been on a very strict gluten free diet since then. I don't cheat. Not ever.

However I haven't gotten any better and still feel like crap most of the time. I have continual gastro-intestinal issues, fatigue, nausea, inability to concentrate and I am cold all the time. It's not really severe but I fell low-level crappy most of the time.

I went back to my specialist and he said that it was definitely not normal to still be feeling sick after more than five months. So I got the coeliac serology blood tests redone and they've come back positive. And my specialist says that they should be negative by now. So basically, I still have active coeliac disease which is why I still feel sick. My specialist has booked me in for another gastroscopy so he can see if my villi are repairing.

So I am either (i) still getting glutened on a regular basis from somewhere, or (ii) have refractory coeliac disease. I'm a bit freaked out by option two even though I know it is unlikely.

I just don't know where i could be getting glutened from. I am really, really careful. I hardly ever eat out, have sorted through all my food and labelled everything clearly, and I think I have replaced everything in my kitchen that could be a cc problem. That said, I do use three kitchens on a regular basis (home, work and my girlfriend's) and none of them are completely gluten free. But they're all reasonably under control. Everything's labelled, I clean surfaces and don't share pots, pans or colanders.

So does anyone have any ideas what could be making me sick?

I do have dedicated bench space. But do I need to be more careful about wiping the handles of the fridge door and drawers and cupboards? Also, do I really need t throw out my old tupperware?

Could I be getting sick from gluten free flours that have been cc? I avoid ones that say they may contain traces of gluten but the rest have no label at all re gluten.

[mushroom]

I was diagnosed at the start of January this year by blood work and biopsy. I have been on a very strict gluten free diet since then. I don't cheat. Not ever.

However I haven't gotten any better and still feel like crap most of the time. I have continual gastro-intestinal issues, fatigue, nausea, inability to concentrate and I am cold all the time. It's not really severe but I fell low-level crappy most of the time.

I went back to my specialist and he said that it was definitely not normal to still be feeling sick after more than five months. So I got the coeliac serology blood tests redone and they've come back positive. And my specialist says that they should be negative by now. So basically, I still have active coeliac disease which is why I still feel sick. My specialist has booked me in for another gastroscopy so he can see if my villi are repairing.

So I am either (i) still getting glutened on a regular basis from somewhere, or (ii) have refractory coeliac disease. I'm a bit freaked out by option two even though I know it is unlikely.

I just don't know where i could be getting glutened from. I am really, really careful. I hardly ever eat out, have sorted through all my food and labelled everything clearly, and I think I have replaced everything in my kitchen that could be a cc problem. That said, I do use three kitchens on a regular basis (home, work and my girlfriend's) and none of them are completely gluten free. But they're all reasonably under control. Everything's labelled, I clean surfaces and don't share pots, pans or colanders.

So does anyone have any ideas what could be making me sick?

I do have dedicated bench space. But do I need to be more careful about wiping the handles of the fridge door and drawers and cupboards? Also, do I really need t throw out my old tupperware?

Could I be getting sick from gluten free flours that have been cc? I avoid ones that say they may contain traces of gluten but the rest have no label at all re gluten.

This must be incredibly frustrating for you. I can just imagine!

The only real alarm bells start ringing at the three kitchens part. Work you have no control over, your girlfriend presumably cooperates to the best of her ability, and your own, I presume you do not let any gluten in there. So I would start looking at the work kitchen first. What do you do there, what precautions do you take, do you always wash your hands and all surfaces that food could come in contact with? Do you heat your own containers in a microwave, or put them on foil in a toaster oven, or whatever? Explain to us what you are doing and we might be able to help you track it down.

[codetalker]

Have you given any thought to gluten sources other than food?

Not to be indelicate but could the gluten be coming from gluten-containing suppositories or perhaps hemorrhoid medication? Gluten can enter both ends of the digestive system.

Does your job or occupation bring you in contact with gluten? For example, do you strip wallpaper?

For me, the hardest glutenings to figure out were the ones not related to food.

[ravenwoodglass]

Have you given any thought to gluten sources other than food?

Not to be indelicate but could the gluten be coming from gluten-containing suppositories or perhaps hemorrhoid medication? Gluten can enter both ends of the digestive system.

Does your job or occupation bring you in contact with gluten? For example, do you strip wallpaper?

For me, the hardest glutenings to figure out were the ones not related to food.

I second this. One of my worst glutenings came from doing drywall work. Also if your girlfreind uses makeup and lipstick are those gluten free? Do you consume gluten grain distilled alcohols? Not all of us react but some do. If your girlfreind is a gluten eater does she brush her teeth really well before you kiss? That can be a source of CC. Do you use toiletries and such that contain gluten ingredients? That can be a problem for some of us. Do you take supplements that contain barley or wheat grass? If you do find some new ones. Do you consume items with codex wheat starch? That is used quite a bit in Europe but many of us will react even though it is thought to be gluten free.

[Mack the Knife]

I have my own toaster at work so that's fine, but I do use the work microwave. I also use work plates, cutlery and glasses but I always rewash these before using them. Again, I am wondering about touching the fridge door and drawer handles. The work kitchen is not particularly clean. There are always crumbs everywhere but I am pretty fastidious about cleaning surfaces.

My kitchen at home is pretty good. I do have a housemate but she keeps all her gluten stuff in a separate area and doesn't bake or use flour. My girlfriend is really careful but she has a housemate who tries to help but is pretty messy.

I'm going to go through my kitchen on the weekend and make sure I haven't overlooked anything really obvious.

[Mack the Knife]

I second this. One of my worst glutenings came from doing drywall work. Also if your girlfreind uses makeup and lipstick are those gluten free? Do you consume gluten grain distilled alcohols? Not all of us react but some do. If your girlfreind is a gluten eater does she brush her teeth really well before you kiss? That can be a source of CC. Do you use toiletries and such that contain gluten ingredients? That can be a problem for some of us. Do you take supplements that contain barley or wheat grass? If you do find some new ones. Do you consume items with codex wheat starch? That is used quite a bit in Europe but many of us will react even though it is thought to be gluten free.

I don't take any supplements or medications except for iron tablets. I have already checked these.

My girlfriend has fructose malabsorption and can't tolerate wheat so she eats mostly gluten free. When she does eat gluten she always brushes her teeth before kissing me. She doesn't wear lipstick much at all.

No, I am not near any construction.

I'll check all my toiletries this weekend too.

[Roda]

Could anyone be using "your" toaster at work without your knowledge?

[dilettantesteph]

Some of us, myself included, are more sensitive to low levels of gluten than others. You might want to try only eating gluten free food that comes from gluten free facilities. Even better would be a diet of only unprocessed foods.

[Skylark]

Have you tried going off all cow's milk and casein? Some celiacs respond to casein in a very similar manner to gluten.

Open Original Shared Link

[Korwyn]

Having just read a study (Open Original Shared Link) about CC in the gluten-free grains, I would suggest you try eliminating all grains for a while. Are you around baking with regular flour? Airborne gluten can cover everything and it is virtually impossible to clean every exposed surface and utensil that might be exposed. You can get CC days later if you are preparing food in a non-gluten-free kitchen where baking has taken place. Also there is 'transfer' CC. Which is where someone throughly cleans a glutened surface with a dishcloth, and then you come along and clean a (supposed to be) gluten-free surface or item.

I have gotten reaction just from baby formula that was mixed on a separate counter in our kitchen. After cleaning, a pot roast was prepared on a different (adjacent) counter and I spent quite a bit of time in the bathroom that evening.

[Mack the Knife]

My diet is already almost all unprocessed foods. Really the only processed food I have is specialty gluten free items like pasta.

I am seriously considering cutting out most grains and flours. I have really gotten into gluten free baking and am using a big variety of gluten free flours from a range of sources. If they are cc then I definitely eat enough to be getting glutened

Do you think store gluten-free bread mixes and pasta are ok? I live in Australia where we have the strictest gluten free labelling laws in the world. Products have to test under 5ppm to be labelled gluten free and if a product contains wheat, barley, rye or oats then they must be listed.

[Mack the Knife]

Could anyone be using "your" toaster at work without your knowledge?

I'm pretty sure they're not. The guys at work are messy and careless but not malicious. They know coeliac disease is serious and I've made it very clear that they can't use the toaster.

[T.H.]

I don't know if this will apply to you or not, but I can tell you what I was told by my GI. He sort of specializes in Celiac Disease, so he tends to get a lot of us celiacs who have serious problems. He said that in his experience with his celiac patients, if they have other issues with foods - allergies or sensitivities, for example - sometimes their serology will come back still positive for gluten, with no healing in the gut, even though they aren't getting any gluten.

That was the case with me. After going gluten free, I had nausea, dizziness, mental fuzziness...felt generally awful. Turns out I was reacting to other foods, too. I had no hives or traditional 'allergy' symptoms, and even after testing for food allergies and going off what came back positive, I still had to avoid a few more foods before I felt normal.

The way I finally started feeling better was to go down to single ingredient foods - fruits, veggies, meats, or whole grains - and keep a food journal of how I felt, and what I ate. But it was still hard - even salt and baking powder can have contaminants, like corn in iodized salt, or potato or corn starch in baking powder. And it turns out I reacted to corn, so I was sick all the time, because I had iodized salt every day.

While keeping a food journal, one method for checking if other foods may be a problem, that seems to work the fastest, is to eat the same foods for a couple days, then switch to completely different foods for the next couple days - even the salt would be different. Iodized salt for 2 days, and then sea salt for the next two days.

Eating basic foods like that, I know I finally started feeling better, and my reactions spaced out enough that I could track them. Like I said, some of the 'bad' foods tested positive as allergies, but some, like corn, did not. But I'm happy to say that my doc is pretty good about that, too. In his opinion, if I notice a reaction to food, note it down, because 'the tests don't tell us everything.'

I don't know if this is how it is going with you, as I know the non-responsive celiac disease is a legitimate concern, but if you care to try a food journal, who knows, it might help you out, too.

I wish you luck, and hope that you can find out what is causing this problem, and that is has an easy fix, as well!

Shauna

My diet is already almost all unprocessed foods. Really the only processed food I have is specialty gluten free items like pasta.

I am seriously considering cutting out most grains and flours. I have really gotten into gluten free baking and am using a big variety of gluten free flours from a range of sources. If they are cc then I definitely eat enough to be getting glutened

Do you think store gluten-free bread mixes and pasta are ok? I live in Australia where we have the strictest gluten free labelling laws in the world. Products have to test under 5ppm to be labelled gluten free and if a product contains wheat, barley, rye or oats then they must be listed.

[dilettantesteph]

Do you think store gluten-free bread mixes and pasta are ok?

They aren't O.K. for me. That includes the ones from Australia. We get some here in the U.S. I can eat grains if I sort and wash them first. Do they use shared harvesting equipment in Australia too?

[Mack the Knife]

They aren't O.K. for me. That includes the ones from Australia. We get some here in the U.S. I can eat grains if I sort and wash them first. Do they use shared harvesting equipment in Australia too?

Seriously? You can't eat flours at all? Even pre-packaged gluten free ones?

Hell, that would be bad. Baking is a real passion of mine and I'm getting really good at gluten free baking. I actually think I would be ok with not being able to eat store bought mixes (I'm not a fan) but I don't think I could cope with not being able to bake. Are there any types of flour that you think would be safe? I can't find any place in Australia that sells certified gluten free flours. Maybe I should ring some manufacturers and see what the likelihood of contamination is.

Also, I thought that products that tested under 5ppm would be safe for everyone. 5ppm is absolutely miniscule.

Can you eat all grains if you sort and wash them properly? Also, do you ever grind your own flour from the grains?

[ravenwoodglass]

Also, I thought that products that tested under 5ppm would be safe for everyone. 5ppm is absolutely miniscule.

For most but not for everyone. Some of us are 'supersensitive' and then there is also the issue of items that have been 'processed' and rendered 'safe' by the processing. I don't think many companies test every single batch that comes off the line so there could be some variation. There are also folks who react to gluten in stuff that is technically gluten free like the distilled gluten grains in vinegar and alcohol.

It might be worth considering deleting the items that might be an issue for a while, like the flours and processed items that are 'gluten free by processing' and items that are made in shared facilities for a while and seeing if that helps. Go with fresh foods and drop the baked goods and processed items for a bit. If after a while your symptoms and numbers go down then you can add back your favorites one at a time and see if you react.

[dilettantesteph]

A representative from Amy's Food told me that they test everything to 5 ppm. Certainly 5 ppm is very small. Yet, you can read lots of posts on this forum from people who react to Amy's food. I have reacted to it. I guess it isn't so small after all.

[dilettantesteph]

Seriously? You can't eat flours at all? Even pre-packaged gluten free ones?

Can you eat all grains if you sort and wash them properly? Also, do you ever grind your own flour from the grains?

I can't eat the pre-packaged gluten free ones. I grind my own. I don't want to go without baking either. I love my cookies and bread.

[gf-soph]

I am going through something similar - I am non-celiac gluten intolerant, have been gluten-free for over 18 months. After about 6 months of being gluten-free I had some significant improvements but still wasn't great, I got glutened a couple of times early on so I waited a while before doing more testing.

I also can't get my blood levels back in the normal range, so I have got stricter and stricter - I only eat out at one place, a dedicated gluten-free restaurant. I've checked all my food and medications, have dedicated cookware, have checked my toiletries, I prepare ALL my own food, the gluten was moved out of the kitchen - it's actually got to the point where I have just had to let go of it and try and focus on my basic nutrition, as I am still deficient in a lot of things and I think that is what is making me the sickest. I'm not saying not to worry about the antibodies, just that in my case I have had to let it go for a while.

I went to a dietician who put me on the RPA elimination diet. I'm not sure where you live, but I imagine there would be lots of dieticians trained to use this across the country. Also, I got a medicare rebate for a few of these sessions, which is a bonus. It's an extremely thorough approach to finding sensitivities that are due to chemicals in many foods, rather than only looking for single foods (which they can also do). It could be worth a try.

It's good that your gastro is taking your situation seriously, but if you don't get any answers then it could be worth seeing a dietician and getting them to help you work out of you could have food chemical sensitivities that are making you feel unwell. I have read that there may be other things that can keep your antibodies elevated, but I would love to hear from anyone who knows more about this!

[Mack the Knife]

I went to a dietician who put me on the RPA elimination diet. I'm not sure where you live, but I imagine there would be lots of dieticians trained to use this across the country. Also, I got a medicare rebate for a few of these sessions, which is a bonus. It's an extremely thorough approach to finding sensitivities that are due to chemicals in many foods, rather than only looking for single foods (which they can also do). It could be worth a try.

I'm in Melbourne. I've heard from lots of people that the RPA elimination diet is the bees knees of elimination diets. I think I'll probably give that a try soon. I am going to Germany in five weeks though so I won't be able to try it until after that. I'll have enough trouble eating as it is while I am away.

[Mack the Knife]

thanks everyone for your responses. They helped a lot.

I have decided to ditch all flours and grains and gluten free packaged foods for a while. I might keep rice though and just wash it really thoroughly. I am going to drop all processed food as well. I'll go back to basics and hopefully eliminate all potential sources of gluten. If that helps me get better, I'll start slowly adding stuff back in later on.

I have also stopped using the kitchen at work and my girlfriends kitchen. I'll just bring food that doesn't need any prep.

I have completely gone through my own kitchen and got that sorted, I think.

I'll let you know how I go.

[dilettantesteph]

I hope it works out. I recently cut out all grains including rice. My son eats the same diet as me and also has celiac disease and was having DH. It went away when we cut the grains and a bunch of other stuff out. I think I improved slightly, but not much. We are currently doing challenges to figure out what it was. Haven't gotten to the rice yet.

[TimothyRyan]

I was diagnosed at the start of January this year by blood work and biopsy. I have been on a very strict gluten free diet since then. I don't cheat. Not ever.

However I haven't gotten any better and still feel like crap most of the time. I have continual gastro-intestinal issues, fatigue, nausea, inability to concentrate and I am cold all the time. It's not really severe but I fell low-level crappy most of the time.

I went back to my specialist and he said that it was definitely not normal to still be feeling sick after more than five months. So I got the coeliac serology blood tests redone and they've come back positive. And my specialist says that they should be negative by now. So basically, I still have active coeliac disease which is why I still feel sick. My specialist has booked me in for another gastroscopy so he can see if my villi are repairing.

So I am either (i) still getting glutened on a regular basis from somewhere, or (ii) have refractory coeliac disease. I'm a bit freaked out by option two even though I know it is unlikely.

I just don't know where i could be getting glutened from. I am really, really careful. I hardly ever eat out, have sorted through all my food and labelled everything clearly, and I think I have replaced everything in my kitchen that could be a cc problem. That said, I do use three kitchens on a regular basis (home, work and my girlfriend's) and none of them are completely gluten free. But they're all reasonably under control. Everything's labelled, I clean surfaces and don't share pots, pans or colanders.

So does anyone have any ideas what could be making me sick?

I do have dedicated bench space. But do I need to be more careful about wiping the handles of the fridge door and drawers and cupboards? Also, do I really need t throw out my old tupperware?

Could I be getting sick from gluten free flours that have been cc? I avoid ones that say they may contain traces of gluten but the rest have no label at all re gluten.

[TimothyRyan]

Hey man-

To Inspire some hope, it sounds to me like you are for sure still being glutened. Which is not uncommon in the first few years of getting used to Celiac. I have had it for 8 years, and still occasionally find myself being glutened, probably once a year at least. Anyway, when I first had it, I remember it taking months for me to feel better anyway, even being on a gluten free diet. Some bodies take longer to heal, especially depending on how damaged you intestines were. Mine were pretty bad. I was sick for like 8 months eating gluten everyday before they "discovered" celiac, and then it took me at least 3 months to start feeling better.

Hang in there. And in the meantime, if you are worrying a lot or feel like you are over worrying, get yourself some xanax to relax. I do. But be careful with that as well, because oddly enough, even some of those companys that make xanax contain gluten. Wal-mart brand is gluten free.

While on topic - Check all your medications as well.

Hope you feel better.

-Tim

[Mack the Knife]

Hey man-

To Inspire some hope, it sounds to me like you are for sure still being glutened. Which is not uncommon in the first few years of getting used to Celiac. I have had it for 8 years, and still occasionally find myself being glutened, probably once a year at least. Anyway, when I first had it, I remember it taking months for me to feel better anyway, even being on a gluten free diet. Some bodies take longer to heal, especially depending on how damaged you intestines were. Mine were pretty bad. I was sick for like 8 months eating gluten everyday before they "discovered" celiac, and then it took me at least 3 months to start feeling better.

Hang in there. And in the meantime, if you are worrying a lot or feel like you are over worrying, get yourself some xanax to relax. I do. But be careful with that as well, because oddly enough, even some of those companys that make xanax contain gluten. Wal-mart brand is gluten free.

While on topic - Check all your medications as well.

Hope you feel better.

-Tim

What is Xanax?