Am I Glutening Myself?

[Karrin]

It's been about a month now that I started the non-gluten diet (blood test tested positive for celiac) and after roughly a week into it, for five blissful days I was better than I've ever been. I haven't changed anything between that week and now with my diet, except 2 possible cc's that following week (it's been at least 2 weeks since those cc's) and I have been extra careful with dishes (I haven't eaten anything but a microwaved hot-dish because we can't afford new pots and pans right now). I'm taking multi-vitamins based off recommendations here. I've even given the chore of feeding our pets to my husband in case the dry food was setting me off. My stomach is as distended as ever and I am varying degrees of exhausted on any given day, not to mention everything else that comes with it. I just saw my doctor and he is checking me for possible other autoimmune conditions (rheumatoid arthritis and parathyroid-something or other), but in the meantime I'm wondering if my bath products might be doing me in. I'm really getting frustrated here!! I've not had one day like those five wonderful days before or since, though I do feel slightly more clear headed, which is almost worse given I have the mind to do things, but no energy to even lift a finger to change a tv channel.

Here's a list of what I use. They appear gluten free to me, but I could be missing something. I've tried looking most up, but the posts I find are old and I'm afraid to trust them. I can type out the ingredient lists too, if anyone likes... or even a list of what works for you would be great! Thanks in advance!

Tresemme Volume Shampoo

Tresemme Anti Frizz Conditioner

St Ives Apricot Scrub (sensitive skin) - use rarely because my face is so dry

Ivory or Dove bar Soap

Colgate MaxFresh with Mouthwash Beads

Secret Platinum Clear Gel Deodorant (english bloom)

Suave Skin Therapy Lotion with Vitamin E

[The Fluffy Assassin]

It's been about a month now that I started the non-gluten diet (blood test tested positive for celiac) and after roughly a week into it, for five blissful days I was better than I've ever been. I haven't changed anything between that week and now with my diet, except 2 possible cc's that following week (it's been at least 2 weeks since those cc's) and I have been extra careful with dishes (I haven't eaten anything but a microwaved hot-dish because we can't afford new pots and pans right now). I'm taking multi-vitamins based off recommendations here. I've even given the chore of feeding our pets to my husband in case the dry food was setting me off. My stomach is as distended as ever and I am varying degrees of exhausted on any given day, not to mention everything else that comes with it. I just saw my doctor and he is checking me for possible other autoimmune conditions (rheumatoid arthritis and parathyroid-something or other), but in the meantime I'm wondering if my bath products might be doing me in. I'm really getting frustrated here!! I've not had one day like those five wonderful days before or since, though I do feel slightly more clear headed, which is almost worse given I have the mind to do things, but no energy to even lift a finger to change a tv channel.

Here's a list of what I use. They appear gluten free to me, but I could be missing something. I've tried looking most up, but the posts I find are old and I'm afraid to trust them. I can type out the ingredient lists too, if anyone likes... or even a list of what works for you would be great! Thanks in advance!

Tresemme Volume Shampoo

Tresemme Anti Frizz Conditioner

St Ives Apricot Scrub (sensitive skin) - use rarely because my face is so dry

Ivory or Dove bar Soap

Colgate MaxFresh with Mouthwash Beads

Secret Platinum Clear Gel Deodorant (english bloom)

Suave Skin Therapy Lotion with Vitamin E

Check your ingredient lists against the wheat, barley and oat lists here:

https://www.celiac.com/gluten-free/index.php?showtopic=8351

You might want to consider giving up dairy. Some folks here say that as many as half of celiacs are also casein intolerant. I might be giving it up myself shortly.

Good luck to you, regardless. I hope you find your answer soon.

[GlutenFreeHub]

Hi Karrin, check out the Open Original Shared Link and our Open Original Shared Link from GlutenFreeHub.com. They all matter because they can all get in your mouth! We'll be updating both of these lists soon, so check back on the website soon!

[Matt007b]

how long were you sick until you were diagnosed karrin?

Ugh i'm on week 3..and I just found out some of the rice milk I have is glutened and possibly the cambell's chunky soup (split pea) might have a problem with it ..can't confirm it so yeah..frustrating!

[heatherjane]

I've heard that Dove is supposed to be pretty good about clearly labeling their gluten ingredients. I've also heard that all Softsoap products are gluten-free. I use the Giovanni (hair products) line and love it. I use Crest toothpaste. Also, check any lip products that you may use and any medications (glutenfreedrugs.com can help w/ meds). Basically, try to think of anything that could possibly go in and/or around your mouth that could be intentionally or accidently ingested.

Let me recommend that you eat as simply as possible. Try cutting out dairy and see if that helps. I've heard that dairy products can mimic celiac symptoms. Also, cut back on as many processed foods as you can - you'll greatly reduce the risk of cross-contamination that way. It also may be a good idea to avoid restaurants for a little while, at least until you get a better handle on things. If you're still using your old toaster you will need to stop until you can get a brand new one. Toaster crumbs are hard to remove entirely.

If you have gluten eaters in your house, you will need to make sure that all of your stuff (food, condiments, utensils, dishes, etc) are stored separately from everyone else's to avoid cross-contamination (condiment jars...mayonnaise, peanut butter, etc, could have left over bread crumbs inside...so could utensil drawers).

And, as you may have heard, the healing process can take a good deal of time, depending on the person, and symptoms can come and go. I'm still trying to get my symptoms under control after being diagnosed 6 months ago.

Hang in there...it will get easier!

[ang1e0251]

Good advice from the PP. I would add that you may be ingesting sneaky gluten. It's in something you're eating that you don't suspect. What spices are you using for your food? I didn't realize for a long time that some of the spices I used occasionally I had probably double dipped with gluteny spoons back in the good ol' days. Toss out anything like that. Also read through everything in your spice cabinet carefully. Blends are often made with gluten. I made the mistake of buying a generic spice blend that I like to use that was safe. I assumed and didn't read the label. The generic did have wheat! I felt so dumb and sick. Now I am much more careful.

Are you eating gluten-free replacement foods? Conveniance foods like mixes? Some mixes that are labeled gluten-free actually have small amounts of gluten. If you are very sensitive, you will react to these. As the PP pointed out, if you go back to simple, whole foods that you prepare yourself, you will be able to see a pattern of what is bothering you. The food journal sounds kind of elementary, but it really is vey helpful to catch problem foods that are bothering you.

Also I noted one of the products you listed has vitamin E. Some vit. E is derived from wheat. You have to look it up or call the company on that one.

Good luck! Let us know how you do.

[OptimisticMom42]

Blends are often made with gluten.

Hello, just wanted to throw this in there. I just spoke with Connie of The Vegetarian Express. She has a granddaughter who is gluten free and another relative who has celiacs. So she knows her gluten. Her company makes spice blends, gravy mixes ect.

I love her Parma Zaan Sprinkles (made from almonds, dairy and gluten free) and the All Purpose Veggie Salt.

They are working on more gluten free soup mixes et. and adding a recipe tip section to their website. It's a small company, Connie and Laurie still answer the phone themselves and are happy to answer questions about ingredients, processes, cooking hints......

Check them out if you're looking for gluten free flavor.

Take Care RA

[Karrin]

I've heard that Dove is supposed to be pretty good about clearly labeling their gluten ingredients. I've also heard that all Softsoap products are gluten-free. I use the Giovanni (hair products) line and love it. I use Crest toothpaste. Also, check any lip products that you may use and any medications (glutenfreedrugs.com can help w/ meds). Basically, try to think of anything that could possibly go in and/or around your mouth that could be intentionally or accidently ingested.

Let me recommend that you eat as simply as possible. Try cutting out dairy and see if that helps. I've heard that dairy products can mimic celiac symptoms. Also, cut back on as many processed foods as you can - you'll greatly reduce the risk of cross-contamination that way. It also may be a good idea to avoid restaurants for a little while, at least until you get a better handle on things. If you're still using your old toaster you will need to stop until you can get a brand new one. Toaster crumbs are hard to remove entirely.

If you have gluten eaters in your house, you will need to make sure that all of your stuff (food, condiments, utensils, dishes, etc) are stored separately from everyone else's to avoid cross-contamination (condiment jars...mayonnaise, peanut butter, etc, could have left over bread crumbs inside...so could utensil drawers).

And, as you may have heard, the healing process can take a good deal of time, depending on the person, and symptoms can come and go. I'm still trying to get my symptoms under control after being diagnosed 6 months ago.

Hang in there...it will get easier!

A big thanks to everyone for their suggestions and those product links! After responding here I am off to label read what I use with the info provided there.

Heatherjane, do you have your own set of silverware/dishes? I have been using the same utensils (washed in a dishwasher) and ceramic bowls/plates etc as my husband, who eats bread, but little, if any other source of gluten (he's a meat and potato kind of guy, despite my efforts to get more veggies in there). I've not used the pots or pans for a few weeks now, for fear of cc. I also haven't dared use any of my makeup since being diagnosed, not even chapstick (I believe I own lipsmackers, if anyone knows they are safe?). Oh, and I even have my own butter container as well as my own bag of sugar and have avoided our toaster like the plague. I don't even wipe the kitchen counters down anymore - poor husband.

I've also been eating quite simply, which makes my continuing symptoms more frustrating. I'm a 'grazer', so I tend to go to the fridge and just grab what is available; a bag of cherries, carton of blueberries etc. My diet is mostly fruit these days and probably will continue to be until we can afford new pots and pans for me. I never thought I'd say it, but I'm getting really tired of fruit! In the beginning I had eggs for breakfast one week, and that was about all I could stand!! I've even done boiled lately, just because the fruit doesn't fill you up for long.

Oh, and thanks for the softsoap mention! I hadn't even thought of that - luckily we do have softsoap already!

[Karrin]

Good advice from the PP. I would add that you may be ingesting sneaky gluten. It's in something you're eating that you don't suspect. What spices are you using for your food? I didn't realize for a long time that some of the spices I used occasionally I had probably double dipped with gluteny spoons back in the good ol' days. Toss out anything like that. Also read through everything in your spice cabinet carefully. Blends are often made with gluten. I made the mistake of buying a generic spice blend that I like to use that was safe. I assumed and didn't read the label. The generic did have wheat! I felt so dumb and sick. Now I am much more careful.

Are you eating gluten-free replacement foods? Conveniance foods like mixes? Some mixes that are labeled gluten-free actually have small amounts of gluten. If you are very sensitive, you will react to these. As the PP pointed out, if you go back to simple, whole foods that you prepare yourself, you will be able to see a pattern of what is bothering you. The food journal sounds kind of elementary, but it really is vey helpful to catch problem foods that are bothering you.

Also I noted one of the products you listed has vitamin E. Some vit. E is derived from wheat. You have to look it up or call the company on that one.

Good luck! Let us know how you do.

The most spice I've used lately is salt, and it has always been kept in a separate cabinet from the other spices. Most our spices are new - about 2 months tops, and have never been spoon dipped-(all have handy shakers that we just shake into a dish or onto meat). I believe they are all safe, unless they are hiding gluten that isn't listed on the label? The ones we use most often (or that I did) is chili powder, onion powder, garlic powder and seasoning salt (the latter has all clear ingredients-like paprika etc), but like I said I haven't had anything these days but perhaps a sprinkle of salt or a spoon of sugar from my own new bag of sugar (everyone else is banned from it).

Ugh!!

[Karrin]

how long were you sick until you were diagnosed karrin?

Ugh i'm on week 3..and I just found out some of the rice milk I have is glutened and possibly the cambell's chunky soup (split pea) might have a problem with it ..can't confirm it so yeah..frustrating!

Looking back, I think I've had it my whole life, though probably to a lesser extent than these past years. There were many periods where I was really tired, red rashes on my face and arms and digestive problems. But I didn't get really sick until about six years ago, with my symptoms gradually getting worse over time - it got harder and harder to write them off as me simply being tired from work. It really kicked in about the same time my grandmother and my mother's boyfriend died, though I'm not so sure it was that stress that set it off. I'd already been losing weight - I thought because I was eating healthier than I ever have, and I know that was part of it, but looking back the rate I lost it was way too good to be true. I went from about 140lbs to skin and bone 99lbs in under 3 months - with my only exercise being standing in place at my job or taking walks around my neighborhood. It was really hard finding a doctor that would take me seriously (one tried to tell me I anxiety disorder and should maybe look into a therapist) and then a good two years of seeing various specialists, fighting to get diagnosed for endometriosis (which I thought at the time explained all my symptoms) before one thought to check for celiac disease abt two months ago! He's an amazing doctor. I owe him a lot. I'm still working with him, as he suspects I have another underlying immune problem.

I think you and I are at about the same place in our diagnosis/diet. Do you get the 'preggo' belly bloat? Mine went away for the week I felt 200%, but it has returned and not gone away since! I find it one of the more aggravating symptoms. I hate having to wear loose baby doll shirts all the time to hide it! Thank God they are in style.

Mmm, split pea soup! I miss that. I have a bag of dried peas, but I haven't the pots or pans to cook them into soup yet. I've avoided all the commercial/processed foods like cambells because I read gluten can hide in the msg and some of the other vague ingredients like natural flavors. I'm still trying to figure out what's making me sick, but I have found a really amazing soup line, which is, I believe, organic and most are labeled gluten free near the bottom of the ingredient panel. I've had their fire roasted pepper tomato soup and it is really amazing! I'm not sure where you shop, but I find it at Woodmans. It's called Pacific Natural Foods. You get quite a bit of soup in one box, about 4 good sized bowls and they taste like homemade!

[ang1e0251]

I didn't change pots and pans or silverware. I share all that. We cook all gluten-free now but with one exception, they are all the old stuff well cleaned. DH still has bread but I clean the counters and just wash my hands afterward. We do have 2 toasters, 2 PB's, 2 jellies, etc.

Seasoned salt is one of those to be careful with. Lawry's is gluten-free but generics have wheat.

The simple way you are eating makes me think you are sensitive to some other item. Start the food journal and see where it leads you. Are you taking any meds or supplements?

[OptimisticMom42]

I've had gluten like tummy troubles after using Lawry's on chicken breast and from an off brand chili powder we used to make taco seasoning. No trouble so far with McCormick's spices or The Vegetarian Express spices.

I also have my own PB and my own jelly. The Family likes grape. Blahhh, I like marmalade.

[GFinDC]

I've also been eating quite simply, which makes my continuing symptoms more frustrating. I'm a 'grazer', so I tend to go to the fridge and just grab what is available; a bag of cherries, carton of blueberries etc. My diet is mostly fruit these days and probably will continue to be until we can afford new pots and pans for me. I never thought I'd say it, but I'm getting really tired of fruit! In the beginning I had eggs for breakfast one week, and that was about all I could stand!! I've even done boiled lately, just because the fruit doesn't fill you up for long.

Oh, and thanks for the softsoap mention! I hadn't even thought of that - luckily we do have softsoap already!

You might be getting fruity. LOL Fruit generally has lots of sugars in it, and can make some people gassy. Some people can't digest the fructose sugars also. If you haven't noticed a problem with fruits before, then it probably isn't a total fructose intolerance (my guess). But after going gluten-free, your gut needs time to adjust the colonies of little critters that live down there. Any sugar can set off a rapid multiplication of the gut critters and cause discomfort. So my suggestion is to avoid sugars for a few days and see if things settle down. You could also consider a probiotic but many of them have some dairy.

I didn't change all my pots and pans either. Just boiled soapy water in them for a while and scrubbed 'em good. I feed my cat Muffin every day and just wash my hands afterwards.

[Karrin]

I didn't change pots and pans or silverware. I share all that. We cook all gluten-free now but with one exception, they are all the old stuff well cleaned. DH still has bread but I clean the counters and just wash my hands afterward. We do have 2 toasters, 2 PB's, 2 jellies, etc.

Seasoned salt is one of those to be careful with. Lawry's is gluten-free but generics have wheat.

The simple way you are eating makes me think you are sensitive to some other item. Start the food journal and see where it leads you. Are you taking any meds or supplements?

I have Lawry's seasoning salt! Phew! Our pots and pans are pretty old and the frying pans are badly scratched (teflon). Would a good scrubing do it? It would be such a relief not to have to buy new ones. I've already had to get rid of so many items!

I'm just started taking a few vitamins and all of the packaging lists them as gluten free. I take a multivitamin with c and iron, d & calcium (the 'calcium and c might be the other way around), and a liquid b12. As for the cc, I think I might have just stumbled upon the culprit after scrutinizing my bath products with the lists everyone here provided me with...both my Tresemme shampoo and conditioner have wheat! - the rest of my bath items are still under suspicion.

Ugh, I could kick myself. I'd checked them so carefully (or so I thought). I've also just written the other companies so when I hear back I will be sure to post up what is what.

[Karrin]

You might be getting fruity. LOL Fruit generally has lots of sugars in it, and can make some people gassy. Some people can't digest the fructose sugars also. If you haven't noticed a problem with fruits before, then it probably isn't a total fructose intolerance (my guess). But after going gluten-free, your gut needs time to adjust the colonies of little critters that live down there. Any sugar can set off a rapid multiplication of the gut critters and cause discomfort. So my suggestion is to avoid sugars for a few days and see if things settle down. You could also consider a probiotic but many of them have some dairy.

I didn't change all my pots and pans either. Just boiled soapy water in them for a while and scrubbed 'em good. I feed my cat Muffin every day and just wash my hands afterwards.

Thanks for the suggestions - It's a relief not to have to replace any more items! And it'll be nice to be able to cook something! (Never thought I'd say that)

I've never noticed any reactions to fruit before. In fact, I usually feel better when I eat a lot of it (helps my pipes...er, move). The 'preggo belly' is just sort of always there, fruit or not. Sometimes it is gas that I can't get rid of, but usually it's just this annoying appendage. Cabbage sure will puff it up on occasion though. I try to steer clear of that - and cauliflower!

[Karrin]

I've written a few companies and will be posting their responses here for all of you as they come in. Hope this helps... looks like I need to find a new deodorant.

(I don't know about the rest of you, but the second paragraph is extremely disturbing to me. A lot of what we put on our skin is absorbed through it into our bloodstream!!)

------

Hi! Karrin,

Thanks for contacting Secret.

We know Celiac is a serious disease, so we want to give you clear information regarding the use of our beauty care products. If wheat and/or gluten aren't directly added to a product by us, these ingredients won't be listed on our packages. Like many companies, we often purchase the scents for fragranced products from outside suppliers, and the components of these substances are proprietary information belonging to those companies. Therefore it's possible that a very small amount (generally parts per million) of gluten may be present.

We sought advice from physicians; they told us it would be very unlikely a person with Celiac disease would have a reaction from a trace amount of gluten coming into contact with his skin or hair. This is because wheat, rye, barley and/or gluten generally cause symptoms when they're ingested. Since our beauty care products are designed to be used externally on the skin, their use shouldn't be an issue for someone with this disease.

Since gluten sensitivity can vary among people, it would be best if you consulted with your physician about the use of all types of consumable goods, if you haven't already. You might even consider using one of our fragrance free products that doesn't list gluten or wheat extracts on the label.

Thanks again for getting in touch with us. I hope this response has been helpful to you. For more information about Celiac, you may want to check out Open Original Shared Link and Open Original Shared Link

I'm sorry we don't publish a list of our products and whether they contain gluten or are gluten free. We make over 300 products at P&G and such a list would not be possible to publish and maintain.

Here's a few of our beauty care products that are gluten free, but this list is not all inclusive:

Hair Care:

Head & Shoulders (US Shampoos, 2in1's and Conditioners)

All USA/CA Head & Shoulders products are Gluten Free

Skin Care:

All Olay Pro X Products are Gluten Free

Personal Cleansing:

All Gillette Body Wash Products are Gluten Free

Olay Sensitive Skin Bars & Body Wash

Thanks for writing us.

Dianne

Secret Team

[Pac]

I was through a similar period of 'mysterious glutening' and I can assure you it's not gluten in my case. I'm still not ok, six months after I was diagnosed. To a great extent I don't know what is causing my trouble, I'm just guessing, working try-and-fail style, but I'm getting better, so I must be on the right track.

I had mild symptoms since early childhood, it got suddenly worse about the age of 12 and worsening ever since, last few years I was merely surviving. My doctor refused to do any tests, "it's normal that people with allergies are more tired and sick" she would tell me. The alergologist would tell me that I have to find out myself what I'm allergic to, the tests are only to confirm my findings. When I repeatedly told her that I have no idea what might be causing it, she did the test (February '09) and told me I'm allergic to gluten and should try to eat gluten-free for a month, to see if it helps.

I didn't know what grains/potatoes/rice I could eat, so I ate only fresh meat, fruit, veggies, plain yogurt and milk the first few days. From the first day I avoided gluten like the worst poison, ingesting it only three times since then. Once my dear mom "poisoned" me using unwashed cutting board. (Here I must add it wasn't her fault as much as mine - I said I didn't want to eat, but then changed my mind and ate the left-overs) Reaction was mild - I wouldn't notice it if I didn't know I got glutened. Twice I tried to eat gluten buns intentionally before my blood tests and endoscopy. After getting so sick that I couldn't get up from my bed, I realized how insane it was. (blood tests were negative and gut showed some slight damage only after very thorough searching, nevertheless, doctors agreed I most probably have coeliac.)

The first week on gluten-free diet, I felt great. I never felt like this ever before and - unfortunately - ever after, not even close to this. After only two days I noticed my wrecked body wasn't quite able to cope with this pace. It wasn't the usual numb-tiredness caused by gluten, it was ordinary exhaustion from too much work and I even enjoyed it a bit. Slowing down wasn't an option, I needed to save my studies, get proper blood tests and endoscopy done before it's too late... I found out I can eat rice and potatoes, so I added them to my diet and that's probably where my trouble started. Symptoms, one by one started creep in again. None reached their previous severity, but some were close to it. I felt a numb again, got extremely tired after eating (potatoes gave me the worst reaction), needed more and more sleep... I tried to make cake from 'polenta' (pure maize meal) and home-grind millet four, I got 'glutened'. I made cake from millet flour only, I got 'glutened' again. I washed the millet grain, scrubbed them like crazy, dried, ground them, made apple pie using just this millet flour and got 'glutened'. I ate (washed, peeled, washed, rinsed 3 times) potatoes, I got 'glutened' even worse. I ate cantaloupe - I got 'glutened', cucumber - 'glutened', carrot (from our garden) - 'glutened'. I could eat small amounts of pure, full-fat, unsalted and unflavored diary, beef, pork (both with no salt or spices) and sometimes strawberries and dried apples, everything else made me sick. I tried drink apple juice and I ended up vomiting everything for the following three days, including water. Stupid me I tried drinking pineapple juice the next week with 'surprisingly' similar result. I started to gain weight again because I wasn't able to eat enough calories, so I started using carnithin and it helped me at least maintain the 120lb I still have. (140lb was my max, should have 105lb) My body was getting sicker and weaker, I had my period 6 times in 3 months, I didn't even know that was possible, I felt desperate. I looked for gluten everywhere, including tap water. Gluten-paranoia unleashed. It was becoming too obvious that gluten is not the cause. I started searching for other possibilities. I tried 'anti-candida' tea, it made me terribly sick the first time, but afterwards it seemed to help. The food I could eat was actually 'anti-candida' diet, so I just stopped trying to 'enrich' it with fruit, sugar and starch. It seems to help with digestive symptoms as well as the numbness and fatigue. I'm taking vitamin D, Calcium and Magnesium - tested several brands before I found one that didn't make me sick (all of them were 100% gluten-free) and seemed to help avoid muscle fatigue and neurological symptoms. Recently I started taking B vitamins (can't find the brand that helps here, so I'm taking B6 only), again to improve my brain and muscle symptoms plus to improve digestion.

As for now, I'm still on the same sugar/starch free diet - yogurt and fresh cheese, meat (salt and pepper only), eggs, veggies, sunflower and flax seeds, small amounts of berries (anything sweet makes me sick, fruit included). Even though the symptoms do reappear, they are gradually less and less severe and most times they strike after eating something "candida-friendly". - I ate normal gluten-free food on the plane and apples with hard cheese on the bus while travelling here to Dawson, plus tried eating potato and teff tortillas while here. Paired with overall change of environment (I was in central Europe before), it enabled candida struck back pretty badly. On top of that, my body pretends 'glutening' whole week before my period. It actually looks more like Crohn's disease, but I'm not diagnosed with that. During this time I can eat small amounts of yogurt, cream and even smaller bits of meat (no salt and spices), but fasting is a way better, pain-free option.

And one more thing that helped me - I stopped trying to live "full-time", keep up with others. I give my body time to rest, when I feel tired I lie down and rest, I don't have a full-time job yet, I still avoid much of the social life. My body is still too weak for all that. I should have paid more attention to the signs of this when I started gluten-free diet and I could have spared myself much troubble.

[Karrin]

I was through a similar period of 'mysterious glutening' and I can assure you it's not gluten in my case. I'm still not ok, six months after I was diagnosed. To a great extent I don't know what is causing my trouble, I'm just guessing, working try-and-fail style, but I'm getting better, so I must be on the right track.

I had mild symptoms since early childhood, it got suddenly worse about the age of 12 and worsening ever since, last few years I was merely surviving. My doctor refused to do any tests, "it's normal that people with allergies are more tired and sick" she would tell me. The alergologist would tell me that I have to find out myself what I'm allergic to, the tests are only to confirm my findings. When I repeatedly told her that I have no idea what might be causing it, she did the test (February '09) and told me I'm allergic to gluten and should try to eat gluten-free for a month, to see if it helps.

I didn't know what grains/potatoes/rice I could eat, so I ate only fresh meat, fruit, veggies, plain yogurt and milk the first few days. From the first day I avoided gluten like the worst poison, ingesting it only three times since then. Once my dear mom "poisoned" me using unwashed cutting board. (Here I must add it wasn't her fault as much as mine - I said I didn't want to eat, but then changed my mind and ate the left-overs) Reaction was mild - I wouldn't notice it if I didn't know I got glutened. Twice I tried to eat gluten buns intentionally before my blood tests and endoscopy. After getting so sick that I couldn't get up from my bed, I realized how insane it was. (blood tests were negative and gut showed some slight damage only after very thorough searching, nevertheless, doctors agreed I most probably have coeliac.)

The first week on gluten-free diet, I felt great. I never felt like this ever before and - unfortunately - ever after, not even close to this. After only two days I noticed my wrecked body wasn't quite able to cope with this pace. It wasn't the usual numb-tiredness caused by gluten, it was ordinary exhaustion from too much work and I even enjoyed it a bit. Slowing down wasn't an option, I needed to save my studies, get proper blood tests and endoscopy done before it's too late... I found out I can eat rice and potatoes, so I added them to my diet and that's probably where my trouble started. Symptoms, one by one started creep in again. None reached their previous severity, but some were close to it. I felt a numb again, got extremely tired after eating (potatoes gave me the worst reaction), needed more and more sleep... I tried to make cake from 'polenta' (pure maize meal) and home-grind millet four, I got 'glutened'. I made cake from millet flour only, I got 'glutened' again. I washed the millet grain, scrubbed them like crazy, dried, ground them, made apple pie using just this millet flour and got 'glutened'. I ate (washed, peeled, washed, rinsed 3 times) potatoes, I got 'glutened' even worse. I ate cantaloupe - I got 'glutened', cucumber - 'glutened', carrot (from our garden) - 'glutened'. I could eat small amounts of pure, full-fat, unsalted and unflavored diary, beef, pork (both with no salt or spices) and sometimes strawberries and dried apples, everything else made me sick. I tried drink apple juice and I ended up vomiting everything for the following three days, including water. Stupid me I tried drinking pineapple juice the next week with 'surprisingly' similar result. I started to gain weight again because I wasn't able to eat enough calories, so I started using carnithin and it helped me at least maintain the 120lb I still have. (140lb was my max, should have 105lb) My body was getting sicker and weaker, I had my period 6 times in 3 months, I didn't even know that was possible, I felt desperate. I looked for gluten everywhere, including tap water. Gluten-paranoia unleashed. It was becoming too obvious that gluten is not the cause. I started searching for other possibilities. I tried 'anti-candida' tea, it made me terribly sick the first time, but afterwards it seemed to help. The food I could eat was actually 'anti-candida' diet, so I just stopped trying to 'enrich' it with fruit, sugar and starch. It seems to help with digestive symptoms as well as the numbness and fatigue. I'm taking vitamin D, Calcium and Magnesium - tested several brands before I found one that didn't make me sick (all of them were 100% gluten-free) and seemed to help avoid muscle fatigue and neurological symptoms. Recently I started taking B vitamins (can't find the brand that helps here, so I'm taking B6 only), again to improve my brain and muscle symptoms plus to improve digestion.

As for now, I'm still on the same sugar/starch free diet - yogurt and fresh cheese, meat (salt and pepper only), eggs, veggies, sunflower and flax seeds, small amounts of berries (anything sweet makes me sick, fruit included). Even though the symptoms do reappear, they are gradually less and less severe and most times they strike after eating something "candida-friendly". - I ate normal gluten-free food on the plane and apples with hard cheese on the bus while travelling here to Dawson, plus tried eating potato and teff tortillas while here. Paired with overall change of environment (I was in central Europe before), it enabled candida struck back pretty badly. On top of that, my body pretends 'glutening' whole week before my period. It actually looks more like Crohn's disease, but I'm not diagnosed with that. During this time I can eat small amounts of yogurt, cream and even smaller bits of meat (no salt and spices), but fasting is a way better, pain-free option.

And one more thing that helped me - I stopped trying to live "full-time", keep up with others. I give my body time to rest, when I feel tired I lie down and rest, I don't have a full-time job yet, I still avoid much of the social life. My body is still too weak for all that. I should have paid more attention to the signs of this when I started gluten-free diet and I could have spared myself much troubble.

I've had so many of the symptoms you've described. The head fog has yet to return in force, but at my worst I couldn't even concentrate long enough to read a sentence. I understand completely. It's absolute torment having all your faculties stripped away until your little more than a vegetable. I had to quit my job about four years back because I just hadn't the energy or mental capacity for it. I was a supervisor at a bank and the math was torment on my foggy days. I could barely hold numbers in my head to add up what I was doing and we had no chairs so I had to stand all day. Unfortunately, my inability to work has put quite a strain on my poor husband (and our finances) whose had to take up the slack. He's an amazing guy though and has been so understanding, even at his tiredest and when visit after doctor visit turned up nothing and most people would and had written me off as a lazy mooch. I still can't help feeling guilty for the burden I've become, and I really pray I can get up my energy again to go back to work to take some of that load off of him. There are days, hours when I think maybe, soon, but not long after the thought has passed I'm back, collapsed on the couch again after the effort of a simple shower or walk to the mailbox.

I had a terrible time getting doctors to listen to me as well. I went through so many. I got to a point I could tell a minute into our conversation whether or not they were going to help me. I wasted a lot of my time and money on a few that obviously did not care, wouldn't even listen to my symptoms, or hadn't the time to care to 'diagnose' me except to guess in the fifteen minutes in which they saw me. When my blood tests would come back normal, I'd be dubbed nuts. I struggled quite a few times, wondering if what they were telling me was true - that I was nuts or overreacting and it was all in my head and maybe I was just lazy, or my cramps and endometriosis symptoms were just 'cramps'. It's really infuriating looking back, knowing what damage might have been prevented had they not been so (at best) overworked, at worst, pompous and unconsidering. Thank god I finally found the awesome doctors I eventually did. On my next visit I think they'll all be receiving a box of goodies.

Good luck on your quest. Your thoughts on the bacteria overgrowth is interesting. I'm on a pretty basic diet myself and can't even begin to start adding things until I can get my symptoms in some semblance of control. I finally found my source (hopefully the only one) of poison. Sadly, I'm without any ideas or means to wash my hair until I find a safe brand. Ugh!

[heatherjane]

Heatherjane, do you have your own set of silverware/dishes? I have been using the same utensils (washed in a dishwasher) and ceramic bowls/plates etc as my husband, who eats bread, but little, if any other source of gluten (he's a meat and potato kind of guy, despite my efforts to get more veggies in there). I've not used the pots or pans for a few weeks now, for fear of cc.

It seems like you've already gotten a great deal of info since my last post, but to answer your question, I live alone so I don't have the worry of sharing anything. But, I am using the same silverware from my gluten-eating days. I just ran them through the dishwasher and made sure they were free of scratches and caked-on food. You do need to avoid using damaged or scratched dishes, pots and pans, but if they are in good condition, I think a run through the dishwasher would take care of it.

I don't know what the latest word is on Garnier hair products, but they've been noted as gluten free in previous posts. You may want to check on that as a possibility.

[Karrin]

It seems like you've already gotten a great deal of info since my last post, but to answer your question, I live alone so I don't have the worry of sharing anything. But, I am using the same silverware from my gluten-eating days. I just ran them through the dishwasher and made sure they were free of scratches and caked-on food. You do need to avoid using damaged or scratched dishes, pots and pans, but if they are in good condition, I think a run through the dishwasher would take care of it.

I don't know what the latest word is on Garnier hair products, but they've been noted as gluten free in previous posts. You may want to check on that as a possibility.

I used to love Garnier, but a year or so ago I noticed it started leaving this strange film in my hair no matter how long I sat under the spout - almost like I hadn't washed all of the product out. I actually was worried it was another bizarre symptom of what was wrong with me, which at that time I had no idea what that was. I was pretty bummed though. I used to love garnier. I tried it again a couple months back and had the same thing happen! As soon as I switch shampoo it goes away.

My frying pans are pretty severly scratched. I'm still on the fence about whether or not to risk using them. They were my parents and are probably 20 years old or more. After reading everyone's posts I'm pretty positive our cooking pots should be okay for me to use though. Yay! I'm going to concoct some plain chicken soup tomorrow with lots of fresh carrots and potatos.

[ang1e0251]

I use an apple cider vinegar rinse on my hair every day. It takes out any build up and leaves your hair so shiny and smooth. Once you rinse out, there is no vinegar odor.

[Karrin]

More responses from various companies. Colgate has been the most helpful thus far. The rest are disappointing, to say the least:

Thank you for contacting us with your question. We appreciate the opportunity to provide information regarding grain derived ingredients in Colgate Palmolive products.

We do not intentionally add gluten to the following Colgate Palmolive products. However, we cannot guarantee that the ingredients used are not exposed to any glutens.

Afta Shave products, all variants

AJAX Cleanser

AJAX Dish Liquids - all variants

Cashmere Bouquet Bar Soap

Colgate Toothpaste, all variants

Crystal White Octagon Lemon Dish Liquid

DERMASSAGE Dish Liquid

Gel-Kam Home Care Gel

Irish Spring Bar Soap, all variants

Lady Speed Stick Deodorants and Antiperspirants, all variants

Mennen Speed Stick Deodorants and Antiperspirants, all variants

MURPHY OIL SOAP - all variants

Orabase Paste

PALMOLIVE Bar Soaps, all variants

PALMOLIVE Dish Liquids - all variants

PALMOLIVE Gel Dishwasher Detergent

PALMOLIVE Triple Action Tabs

Peroxyl Rinse

Phos-Flur Rinse

Prevident Gel

Softsoap Liquid Soap, all variants

Softsoap Body Washes, all variants

TOTAL Floss

Ultra brite Toothpaste, all variants

Viadent Rinse

Viadent Toothpaste

Sorbitol is an ingredient which can be grain derived and may be found in toothpastes. Our sorbitol is corn-derived.

Once again, thank you for taking the time to contact us. We hope this information is helpful.

--------------

Dear Mrs. Gray,

Thank you for taking the time to contact Alberto Culver regarding your interest in VO5. It is always a pleasure to hear from our consumers and we are happy to respond.

It would be difficult to list every product without possibly missing something from the list. Wheat-derived ingredients are clearly listed as wheat germ oil, hydrolyzed wheat protein, wheat amino acids, etc. Oat ingredients are also listed in this format. We would also advise to get recommendations from a physician.

Many of our personal care products do not directly contain wheat, but they are not produced on gluten-free production lines. We cannot guarantee that they do not contain trace amounts of gluten from other products or other production lines within the same factory.

Thank you again for contacting Alberto Culver.

-----------------

Hi Karrin,

Thanks for writing!

We do not specifically test our products for the presence of gluten, a sticky protein found in some grains such as wheat. Gluten may be present in products that contain derivatives of wheat, oat, rye, and barley. In labeling our products, our company follows the guidelines established by the International Nomenclature for Cosmetics Ingredients (INCI) process. Therefore, if we use an ingredient derived from a grain such as wheat, oat, rye and / or barley, those names will appear on the label.

Example

One common example is "Hydrolyzed Wheat Protein" If you see this name on the label, the material was derived from wheat, so the product may contain gluten.

We recommend that you consult with your physician as to whether your exposure to grain derivatives from the use of personal care products will cause the symptoms of Celiac-Sprue Disease.

Since product formulations change from time to time, we do not have a printed list of products that identifies those products that contain specific allergens or gluten.

We hope this information is helpful,

Your friends at Suave

SC

[Karrin]

Dear Mrs. Gray,

Thank you for contacting Alberto Culver regarding your interest in our company and its products.

Many of our personal care products do not directly contain wheat, but they are not produced on gluten-free production lines. Therefore we cannot guarantee that they do not contain trace amounts of gluten from other products or other production lines within the same manufacturing facility.

St. Ives Collagen Elastin Body Lotion and Mineral Facial Mositurizer are formulated with gluten-derived ingredients. To determine if a product is formulated with gluten-derived ingredients, please refer to the ingredient list on the back panel of the product.

We hope this information is helpful. Thank you again for contacting Alberto Culver.

Sincerely,

Casey Collins

Consumer Relations Representative

[Korwyn]

Hi Pac,

Reading through your post you sound like me. You probably have a throughly compromised digestive system and complete bacterial imbalance in your small intestine. Take a look at the GAPS diet which is specifically designed for rebuilding your intestinal flora and allowing your intestinal tract to heal and repair. I've been prepping for a few weeks getting meats and veggies and will be making sauerkraut and yogurt this week and next week but just doing the 'intro' portion of the diet has made a world of difference and is helping a lot.

[txplowgirl]

Karrin,

Was wondering if you have eaten any potatoes and tomatoes? These are in the nightshade family. Celiacs are also sensitive to these. Potatoes, tomatoes, eggplant and all peppers. Just trial and error. But it is worth it. Also like others have said check your dairy intake as well as caffine, sugars and some people which I am one has a problem with aspartame. ARRhhh. Hang in there

Vicky