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Member Since 08 Jun 2011
Offline Last Active Yesterday, 03:40 PM

#890148 Reactions To Non-Gluten Food

Posted by on 29 September 2013 - 11:02 AM

I have a hard time buying that too.  I guess if you have been suffering all sorts of symptoms, and then get rid of the gluten symptoms you could have the symptoms from your other food intolerances remaining.    But, why would you all of a sudden have much more severe symptoms to another food when you eliminate gluten?  Why would you be able to eat that food when you grow it yourself, but not when you get it from the grocery store?  That makes no sense to me.  In my mind it makes cross contamination the more likely culprit.

Steph, I don't know WHY, but it happened to me. I had mild digestive symptoms and bad psoriasis. When I first went gluten-free, all I ate was whole foods - meat, potatoes, veggies and fruit. My gut symptoms were gone and the psoriasis almost completely healed after YEARS of having it. Then after a few weeks I made some gluten-free cornbread and BAM!! Sick, and the worst psoriasis flare I had ever had. I couldn't even walk! Couldn't pick anything up because just bending my fingers was excruciating. I ditched the corn and it healed again. Now if I get any corn by accident I get sicker than I do with gluten.


Before going gluten-free I ate corn several times a week. My psoriasis never flared as badly as it did after going gluten-free. I have no idea why, but at this point it doesn't matter. I just know I'll never eat corn again. Maybe at some point I could get it back, but I'm not even interested in trying it. It limits me so much, but that limit is good, because it keeps me off processed foods. I've never eaten such a healthy diet in my life. If all of a sudden they found a cure for celiac and corn intolerance, I'd STILL keep eating the way I am now. :)

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#890139 Do You Take Your Celiac Disease Seriously?

Posted by on 29 September 2013 - 10:16 AM

Oh, we always point people to valid sources that provide the information about celiac myths: Tricia Thompson, Shelly Case, U of C , etc.

as Karen mentioned...and you know what happens?  People argue loudly with us anyway. I cannot tell you how many times someone

has vehemently  told me she was glutened by any of the following: envelopes, stamps, dirty seats on the bus, books, steering wheels,

carpets, pillows, dog hair,semen, walking in the bread aisle, riding the subway, bananas, their next door neighbor who borrowed a rake,  eggs, the post office desk where she used the pen.... (and I am not making any of those up)


After awhile, we just say "okay" because they believe it is so and you cannot convince them otherwise.

I think it's very possible to get glutened by YOURSELF if you touch the dirty bus seat that a toddler with gluteny hands and lots of crumb spillage sat in, and then pop food into your mouth. But who in their right mind wouldn't WASH THEIR HANDS before eating after touching a dirty bus seat anyway? That's all it takes to keep from getting glutened, or to prevent illnesses from germs for that matter. WASH YOUR HANDS! :lol:

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#890024 Do You Take Your Celiac Disease Seriously?

Posted by on 28 September 2013 - 09:52 AM

Although I don't want to do damage to my gut for fear of cancer and lupus and all of the other horrible things that can happen to a celiac who eats gluten, I'll tell you a "secret". As a smoker, I have to admit that all of those long term scares don't always work. I KNOW smoking can cause horrible things too, but I haven't quit yet.


But if smoking could cause DH...


Yes, DH is my greatest fear. I have read enough and seen the pictures of those who suffer from it, and I know I too could be one bite of gluten away from having it myself. There is NO WAY I would EVER risk that! So when the long term scare tactics don't work on someone who is playing Russian roulet with their health, I think they should all be required to go to the DH section here and read every post, look at every picture. I'd be willing to bet quite a few of them would wise up and stay STRICTLY gluten-free.

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#889938 Afraid Things Getting Worse

Posted by on 27 September 2013 - 01:18 PM

I notice your sig line says gluten-free 5/12, but your post says 5/13. I'm assuming the 13 was a mistake and you have actually been gluten-free since your diagnosis in 2012?


But I also notice you also say, "Normally if I accidentally ingest gluten, which I do sometimes because I still don't think about things on accident or whatever the case may be, all symptoms back - headache, the runs, cramps, anxiety, irritable, swollen abdomen, for about 10 days and back to normal."


It sounds like you have been getting "accidentally" glutened on a regular basis. If that is the case, you are still doing damage and thus have not healed. Your symptoms will naturally get worse over time. I'm not saying that ALL your current symptoms are gluten related, but they might be. Once the doctors have cleared you of all these other possibilities, it's time to get strict with yourself so you don't keep suffering like this.

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#888402 Feel Lousy

Posted by on 14 September 2013 - 12:08 PM

Withdrawal is HARD! I didn't have many symptoms of celiac (or at least I didn't THINK I did until I went gluten-free and my insomnia went away, my brain fog cleared up, my feet stopped swelling, not to mention the psoriasis cleared up as well as my minor bathroom issues.) But during the first couple or three weeks of gluten-free, I felt HORRIBLE. I had a headache every day, I was weak and spacey and shaky, and had a general sense of being unwell.


Hang in with it, and you'll start feeling better soon.

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#888077 Kraft Cheez Whiz

Posted by on 11 September 2013 - 07:28 AM

Crazy -  I always considered that stuff in the "plastic cheese" category, and would never even consider buying it. But lately I have had a craving for plastic cheese! There is a burger joint locally that had the best tasting, greasy burgers with plastic cheese on them, and every once in a while I would stop there in the old days. Yesterday I wanted one (along with their greasy fries) for lunch. Of course I would never really do it, but I was dreaming!


I can't have Cheese Wiz even though it's gluten-free because of the corn intolerance, so please, enjoy some for me!

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#887185 Blood Test Positive...biopsy Negative.

Posted by on 04 September 2013 - 12:16 PM

If you've been gluten-free for 2 years you will test negative on the blood tests and the biopsy. Your doctor should KNOW that. And both of them should know that you CAN'T eat a little bread once in a while. They are both idiots, IMO!

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#886922 New To This! Post-Gluten Recovery Time And Fatigue

Posted by on 02 September 2013 - 03:21 PM

Your friend with "chronic fatigue" just might have celiac too. If you're really good friends, maybe you can ask her to try a gluten-free diet for a few weeks and see if she notices any improvement.

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#885620 Horrible Relapse After More Than 3 Years

Posted by on 24 August 2013 - 01:54 PM

I think eating just fruits, veggies, and apple juice might be prolonging the problem. Those will give anyone D if that's all they are eating. Get some chicken or turkey and eat that. Maybe some potatoes.

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#884447 Second Guessing Diagnosis

Posted by on 15 August 2013 - 11:30 AM

Also, make sure they do at least EIGHT samples when they do your biopsy. Some "Doctors" only do two or three, and as the damage is often spotty, they miss the damaged parts.

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#884333 Kind Of A Silly Question But Do Children Need Gluten Foods?

Posted by on 14 August 2013 - 01:11 PM

Not at all! If you feed them the same nutritious foods that you eat they will be fine. The only thing I know of that is truly nutritious about gluten is the bread because it is vitamin fortified. If you give your kids a good multi-vitamin, they will get everything they need and avoid a lot of garbage they DON'T need. Most of the processed gluten foods are full of chemical preservatives, colors, and flavorings. That's not to say there isn't some of that same garbage in some of the gluten-free processed foods, but if you stick to mostly whole foods and do your own baking you will have more control and better tasting food.

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#883926 Terrified

Posted by on 12 August 2013 - 07:36 AM

OK, take a deep breath. Relax. It's going to be OK.


You need to read the Newbie 101 thread. It will explain a lot. You need to have all your own condiments - things that a knife or spoon might double dip in such as mayo, mustard, butter. You need to have your own toaster. You need to stop using any wooden spoons, cutting boards, scratched teflon or plastic containers and get your own. You can mark them. It's easiest if you have your own cabinet to keep your stuff in.


Sponges can retain gluten so it's a good idea to have your own. The drying rack should be no problem because the dishes are clean. It wouldn't hurt to have your own section of coutertop to prepare your food on, but if that's not possible, just make sure you wash the area well before using it. As for doorknobs and light switches, all you need to do is wash your hands before eating or preparing food. That's a good practice for anyone, gluten-free or not, to prevent colds or other illnesses.


Some processed foods are truly safe for us if we learn to read labels. Kraft for example, will always put the source of any of their ingredients - you might see something like, "malt (from barley)" on their labels. If you do, you know it's not safe. The law in the US is that ANYTHING that contains wheat must be labeled, and hardly anything uses rye, so barley is the one you have to watch out for.


It's a good idea though when you first start to stay away from processed foods, not because they are dangerous per say, but because simple plain whole foods - meat, veggies, fruit, are easier for a healing gut to handle. Once you are feeling better, there are lots of gluten-free foods you can find in health food stores and in some grocery stores. Udi's makes good bread and desserts. Against the Grain makes a great frozen pizza and breads. Canyon Bakehouse makes my favorite bread of all. There are cookies and Lara Bars (they come in all different flavors and are similar to granola bars or in some cases, cookies). And of course there is rice, there are gluten-free pastas, tortillas, and TONS of other foods that are safe.


You need to talk to your family and get them on board. If THEY are careful with their gluten foods, YOU will be that much safer from CC. They should also be tested because celiac runs in families.


Make sure you check any medications or supplements you are taking to see if they are gluten-free.


Have I left anything out? Probably, but there will be other folks coming along with more helpful tips. In the meantime, welcome to the board. Ask lots of questions and don't hesitate to rant or cry on our shoulders. We have all been there. But rest assured that it does get easier - to the point that it becomes second nature. Every one of us "old timers" have been scared and sad and angry at the beginning. Now we're easy going, happy and HEALTHY. You will be too. :)

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#883753 Gluten Free For A Week, All Symptoms Gone! Possible?

Posted by on 11 August 2013 - 08:55 AM

Somewhere on this forum is an early post I made stating that after a couple of weeks I felt better than I had since I was a kid. I hope this continues for you but I want to warn you that you may start feeling lousy again in a little while. Many of us do. For some of us, other intolerances rasie their ugly heads. For some, other AI conditions that were being masked by celiac raise their ugly heads. It's almost like that week or two of feeling wonderful is a sign that it IS possible, but it might take a while to get back there.


That being said, not all of us have these further problems. I sincerely hope you are one of those who feel great again permanently. But if not, don't give up hope. It might take a little longer to get back to the point you're at now, but you WILL. For now, try to stick to whole foods and skip the gluten-free replacements for a while. Take a good probiotic and some vitamins. It MIGHT not hurt to start a food diary so if you DO go downhill again for a while, you'll be able to single out which food is getting you. Dairy, soy, corn, and nightshades are problematic for some of us. BUT!!! Not ALL of us! You might be one of the lucky ones.


Also, read the Newbie 101 thread. It'll help you to ferret out the places gluten can hide and prevent you from getting cross-contaminated.

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#883655 Sad, Frustrated, Need Support

Posted by on 10 August 2013 - 04:13 PM

I'm so sorry your family is being unsupportive. I hear a lot of that here on this forum and it ticks me off to no end.


If you are still "making gluteny food" for your family it sounds to me like you are probably getting cross-contaminated. If you are using the same butter for your kid's sandwich and then using that butter yourself it is almost SURE that you are getting contaminated. You need your own butter, mayo, etc. Even if the knife looks clean, after it has touched bread it will contaminate the whole stick/tub/jar.


So, assuming you are getting glutened (and I would put good money on it that you are), you are now finding out one of the nasty facts of celiac disease - that the longer you stay away from gluten, the sicker it will make you when you do have it. It happened to me. My digestive symptoms were so mild I didn't know I had it. After being gluten-free for about a year I got contaminated by someone's cookie crumb. I was nauseous almost but not quite to the point of throwing up. I was so fatigued I just wanted to lie in bed for days. And I had bathroom issues for days.


Have you read the Newbie 101 thread? If not, get over there and read it right away.


You should probably stick to while foods right now - things like meat and vegetables and fruit. gluten-free foods that are commercially prepared, like breads and cookies are full of calories and have no nutrition. And a lot if not most of them have just as much ohter garbage in them as regular junk food. If there are more than five ingredients in anything I just put it back. Just yesterday I was looking at a gluten-free item in my local health food store and it had all kinds of artificial color and preservatives. Maybe someone like me who has been gluten-free for over two years now could handle that, but you are still healing. You need to treat your digestive system gently.


You may also have a lot of vitamin deficiencies. Unfortunately doctors who even get it at all and manage to give a diagnosis, often just tell their patients to stop eating gluten and send them on their way. If you have had celiac for a while you haven't been absorbing the nutrients from your food and most likely DO have deficiencies. Those too can lead to the symptoms you describe.


It can be overwhelming at first, especially when it seems that the ones who are supposed to love you are against you. I can't fix that part (unless you send her here so I can slap some sense into her :lol: ) but I can tell you that you have found the best support group anywhere, right here. We will answer any questions you have about the diet, what tests to ask your doctor for, which foods are best, and just about anything else that comes to mind. And if you need a shoulder to cry on or something to kick when you get frustrated, we're here for that too. ((((HUGS))))) to you.

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#883399 Significant Other To Celiac

Posted by on 07 August 2013 - 01:00 PM

No, Hon, I have not given you "attitude". What I have done is respond to your post honestly. You even went back and edited your original post because you knew that saying he was making your relationship "boring" and that you "couldn't take it" sounded bad. If you look around here at different threads you will find that many of us have had problems with family and friends and spouses who couldn't deal with our illnesses. A lot of us have been hurt by people who supposedly love us, so if I jumped on you, that is why.


I don't think there is anyone here who worries about packaging giving us CC. We wash our hands when we cook and we wash our hands before we eat, but other than spilled flour on the checkout counter, I don't think packaging is a big problem. People's gluteny hands touch doorknobs and other surfaces too. We just always wash our hands before putting anything in our mouths. Cleaning with vinnegar though is not any better than just using soap and water. I don't like harsh chemicals so I clean with Dawn dishwashing liquid and water. It does a good job.

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