VioletBlue
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The DNA tests are, um, interesting. I believe there is a lot that is not understoodd about Celiac Disease, Gluten Intolerance and the differences between the two. And that includes in the realm of DNA. Also the results of the DNA depend on whether a doctor sticks to a strict interpretation of what a "celiac gene" is. The understand of which is which and how much it matters is changing and evolving.
My suggestion would be to find out which genes the test found and start googling the specific genes for yourself to see what kind of information comes up. You will find more current information on the web about DNA than exists in your doctors head.
And BRAVO for asking!
Hi Everyone,
I posted over a year and a half ago about possibly being a false negative for celiac disease. After a number of cross-contaminations that left me out of commission for a few days each, I have decided to take matters into my own hands.
I am nearly certain that I have celiac disease, and also frustrated with the distinction between celiac and gluten intolerance, since it seems that many people in this forum have symptoms as debilitating as those who have the official diagnosis of celiac disease. I also just don't believe that doctors understand this well enough to know if their methods of diagnosing are accurate.
I was never offered a blood test before I stopped eating gluten, and I was never willing to take the gluten challenge, so they did a biopsy of my small intestine and a DNA test. The biopsy looking for flattened celia was somewhat useless, since I had not been eating gluten for some time, and The DNA test came back as non-celiac. I posted on here wondering if there was anyone I still could have been a false negative, since my symptoms when glutened (bowel movement problems which I won't detail here, IBS, vitamin deficiencies, brain fog, etc) all point to celiac disease.
I know it shouldn't matter, but it does matter to me, because sometimes it makes me feel crazy when people treat this as a food fad when I tell them what I can and cannot eat. Some people can be very mean about it.
So, I called the doctor who did the DNA test to get my exact results. I hope this will lead to more clarity. I can't believe it took me a year and a half after that first posting to do so. I was just kind of proud of myself for finally asking.
Sometimes it's the little things....
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I second what SoyBoy is saying. To me, your symtoms sound like what I experience when my blood sugar dips. HYPOglycemia seems to plauge people with celiac disease for some reason. It can also be made worse by consuming large amounts of carbs in one setting, or snacking on carbs.
Items 3-7 sound familiar to me.
I borrowed a blood glucose meter from a diabetic friend for a couple weeks. I noticed that when my blood sugar levels were low, I would get 1. shaky hands 2. fatigue 3. headaches 4. difficulty focusing
The hunger symptoms you describe also sound familiar.
I would get a whole other set of symptoms when my blood sugar went too high. The bottom line is that for a period of 6 months or so, I had poor glucose control.
Things are better now (although my body does give me reminders now and then to keep me in line). How did things improve? I tried to eat like a diabetic, excercised as much as I can, and took my vitamins (B12, B-complex, multivitamin)religiously. Above all, I avoided my nemesis - soy. I understand that the solution might not be that simple for most.
What does your doctor think of the L-glutamine? How do you react if you were to eat something with MSG?
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I've never gotten Chebe pizza crust really crisp all the way through. It's always chewy in texture as is every other chebe product. But if I put it directly on the rack instead of a pan that does help crisp it up a little. Takes some manuevering to do that but it helps.
It also helps if you pre-cook toppings and drain them so there's less grease or in the case of mushrooms and olives moisture going onto the crust. That keeps it a little crisper, but that works for any pizza crust.
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No, it's not all in your head. It never is, but that's the best answer doctors can come up with. They get frustrated and intimidated when they can't "cure" someone with a pill or an operation and they tend to write you off as a head case. They know they can't cure psychological issues so that "diagnosis" lets them off the hook in their minds.
I think you know it's not all in your head. Just as I knew years ago that it wasn't all in my head no matter how many doctors tried to tell me it was. You know your body better than anyone else ever could; you live in it!
It does take some time to feel better. Some people take longer than others. Four months may not be enough time for you, particularly if celiac disease caused anemia or other vitamin deficiencies.
One of the symptoms for me of food allergies is exhaustion. I've weeded out other food allergies that way in addition to gluten intolerance. Could you have other allergies you're not aware of?
You have been through a lot, but one thing I've learned over the last couple years is that everything life throws at me is much much easier to deal with if I'm physically well. One little bit of gluten or soy or citrus and suddenly everything in my life gets blown out of proportion. There's a huge difference for me between how I feel when bad things happen and I'm physically well, and how I feel when bad things happen and I've just been CC'd by gluten.
And I know many others here have heard the "It
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Well, I can say from my personal experience that most of the physical problems that you have I also had. They all went alway when I stopped eating gluten and uncovered a few other food allergies. Even the COPD.
I can't say it was easy. I can't say it will be easy for you. It takes while to get the hang of all the things gluten is in and weed them out of the pantry and frig. But the trade off would be feeling better than you have felt in a long time.
And if I can do it ANYONE can do it
I will start of by say sorry for spelling issues. I was told of my celiac last year. They told me I was allgeric to wheat and glucan and to stay awayfrom it gave me a book asked me to change my diet and well that was it. Me being the know it all I am thinking well try to stay away from wheat bread ect... Did not relized it was A autoamumun disease or how severe it really was thinking my bad allergies I already had, was thinking thats all I had to do. I was watching TV the other day is when I relized on Dr Oz how bad it was.
I have been in my room angry, depressed out of my mind, bad mood, really not a pleasant person to be around barely stand myself as company for almost 2 months with no energy and thought of suicide because of how horriable I have been feeling. the pain physcially and emotionally is so severe I can't even explain it. I ache everywhere, I hardly ever sleep, my stomach cramps r so bad feels like there is an alien about to burst out, ear aches, migraines and now in the last 2 weeks a rash from hell that itches burns and painful.........Oh did I mention maybe u all should call a wambulance......lol.
Whinning has never been something I have done or usually do, but boy have I made up for it in the last few years, feeling sorry for myself never was big on either, now I am a big fan...... motivation what in the world is that.....mine is on layaway and can't get it out. And to whine more on top of all that I also have COPD and empazemia...... r u done reading yet....lmao
So my world has opened up to a new begining and a new lease on life and a bit happier hahaha the food is expensive, I am on disability and live with my best friend who god help her these days for hanging in there with me.
I don't know where to start or what to do, all I do know is I need help and need to feel better soon and well it would be a awesome thing if this rash would go away....lol.
with regards whiney
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I don't think that's the consensus. McCormick has traditionally been very good about labeling. I've used them for years without issue. I may have just gotten a bad batch, they may have forgotten to wash the machinery off between gluten-free and Non gluten-free runs or not used enough water pressue, a batch of onions may have been contaminated in their country of origin (China) or I may just have become super sensitive and what got me wouldn't have bothered most people.
I can't stomach buying McCormick again, once bitten twice shy, but the best judge of what you can and cannot eat is your own stomach.
I am just getting ready to make a salmon pate that uses McCormick onions. Is it a consensus of opinion that McCormick onions aren't safe to use?
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"Loose twenty pounds and all your problems will go away."
"Yeah, ah, the joint pain and the nausea too? Really?"
"Absolutely."
I never went back to him. He was way too young anyway, and his hands were clamy and cold and shook when he examined me.
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Also, she brought it out without the gluten-free sticker and goes, 'guess ya don't need a sticker now'
That would have sent me over the edge. Was she the manager? If not I would have screamed for the manager and given him/her a piece of my mind. Then I would have gone to my computer and contacted corporate through their website. Her attitude is unacceptible from someone who's JOB IT IS to provide food and customer service.
But that's maybe just me
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I've considered just drying my own minced onions, but I'm not about to try it in the summer and I'm not willing to buy a dehydrator.
But if their onions can be CC'd than so can anything else, so it's not just onions I need. I grown some of my own herbs, but some things I just can't grown here and or produce the way spice companies can.
Have you tried buying fresh and freezing? I get onions cut some up fine and some in chunks and then freeze them on sheets and when frozen I dump them into a bag. That way they don't lump together. I think this would work with many spices.
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Having just gotten glutened badly by CC in a new bottle of McCormicks plain dried minced onions I've decided they can't be trusted. Yes, it had to be the onions, I tried them three times to be sure and each time the reaction was obviously a gluten one. I've never had that happen with McCormicks before, it's possible I've just gotten more sensitive, but whatever the reason I couldn't buy another bottle of McCormicks now for anything. I'm also not thrilled with the "Product of China" stamp on the back.
We have two grocery stores up here and nothing else closer than an hours drive. The grocery stores carry precious few brands with McCormick dominating the spice shelves.
So what brand does everyone consistently use? I'm trying to avoid shopping on line or a two hour round trip just to buy spices. I'm on a VERY fixed budget these days so cost is everything. I'd go without before I'd splurge on spices. I'm hoping I get lucky and hit on a brand one of the stores carries.
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You did better than me on that website. I couldn't find an ingredient list. But I'm assuming it's got citrus in it? That would make it impossible to drink for me.
Secondly, on the VEMMA vitamin fact sheet found on their website. The kid's version specifically states GLUTEN-FREE. The adult version does not. I'd definitely contact the company before giving it a try. Almost every company I have contacted has responded quickly and (so far) honestly. I really would LOVE to find a liquid multi - I'll be contacting them when I have a a few free seconds.
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I was looking for something different to make with one of the Betty Crocker gluten-free cake mixes. I came across this one and decided to try it only with the chocolate cake mix. It's amazing. After you make it stick it in the frig overnight and the cake will have the consistency of a cake brownie. It's not overly sweet because of the tang of the strawberries. I'll have to try it "properly" next with the yellow cake mix
Ingredients
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Perhaps I'm strange then. With every box of cereal I've ever had invariably no matter how hard I try some of the cereal gets out of the bag and slides back into the box when you tip the box back up after pouring.
I read the ingredient list on the box. It mentions wheat five different times, and soy twice. Do these people have a clue what they're eating?
From now on I will apparently have to specify to every seller "Do not ship your product in old food boxes of any kind." What an odd thing to have to say to anyone.
My thoughts exactly. It's probably fine. Ask a friend to open it outside if you are concerned. The book may be wrapped in something else like plastic or paper inside the box, in which case it didn't even touch the box. The box probably never came into contact with much of the cereal anyway.
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I realize my whole "No gluten" lifestyle is alien to the majority of people. I get that. But I thought I'd been through every possible culture shock since I went gluten-free in 2006. I've weathered them all; the ones I anticipated and even the ones I could never have expected.
My house is gluten-free, 100% no ifs ands or buts. In addition I have maybe a dozen other food allergies I have to watch out for.
And I shop on ebay quite a lot for my business that I run out of my home. I mostly buy from individuals.
I bought a vintage collection from a very nice woman, or so she seemed last week. It arrived today at my PO Box. The box was wrapped in wrapping paper which I thought was odd and it felt kind of soft, like it wasn't a "normal" box. But I never gave it a thought. I cut the wrapping paper off the box when I got home and found my self face to face with the box for "Raisin Bran Granola with Wheat Flakes". I literally froze. Then I panicked. Then I screamed. Then I screamed some more. I left the box on the counter. I haven't opened the box yet. I'm still too stunned.
The thing is, I go to all the trouble and grief to live this life and I don't expect anyone to understand or agree or even participate in it, then some ding bat ebayer sends me a box that once contained poison. I'm beside myself here and I'm lost. I guess I can open the box but the box is surely been CC'd as have most like the contents, one of which is a small book which you can't really scrub clean now can you?
If it were you, what would you do?
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You might try taking an anti-histamine.
I can't eat Udi's because they appear to use sunflower oil in everything so I've never tried it. I'm highly allergic to anything sunflower.
Well, I knew it. Ate 1 piece of Udi's bread 30 minutes ago. I now have a rash on the side of my neck. Not only does it itch, but it actually hurts. First time a rash has ever hurt on me. First time i've had a rash in close to 20 years infact. But I also have a rash on the back of my right shoulder and under my left breast. On top of that I feel like i'm running a fever. I am hot as all get out. As i'm typing this the palm of my right hand is starting to itch, my ring finger on my left hand and my left ankle. This is ridiculous.
As far as I can tell that's all that's happening at the moment. I'm gonna take some l-glutamine and hope that helps.
Can anyone think of anything else that might help?
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For me, feeling hot is part of an allergic reaction to something. Once I eliminate the offending food the hot flashes go away. Yeah, we women get to call them hot flashes. That's part of how I know I've been cross contaminated by something I'm allergic or intolerant of. It's also unfortunately how I know there's a new allergy popping up
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Sucks having to cram six different size clothes into the closet doesn't it
I was about ten years older than you I think when I was diagnosed. When I look back at some of the choices I made in my life I can't help but wonder if I would have made them if I didn't have untreated undiagnosed Celiac Disease. I kicked that around for years before I finally realized the the past is gone and the future is all I can change. Yeah, sorry, that sounds terribly cliche but it sometimes helps to remind myself of that.
I used to excuse the cleaning thing as being what I did when I was upset. Some people scream and cry; I'd clean. But I will say in my own defense that I never came to at 2am with a toothbrush in hand.
But for awhile there I had one damn clean apartment.One of the things I came to realize after I went off gluten is that other things were bothering me too. Other foods besides gluten make me manic. Things that are traditionally mood altering substances like chocolate and ibuprophen and night time cold medicines have bad effects on me; effects they're not intended to have. If I take Nyquil I'm up all night and my mind is racing. If I take more than one ibuprohpen I go into a manic rage. The same is true if I eat too much chocolate. I sometimes wonder if those of us with neurological reactions to gluten aren't just more sensitive all the way around to mood altering substances. I don't know.
I was also told when I got on this ride that it would take about 18 months to truely see the difference. I poo pooed it, but, ah well, they were right. The first year of being gluten-free was a black hole of a nightmare that I have since sucessfully erased from my memory banks. Don't bother asking about it because I cannot remember it.
You mentioned that you're taking time off work becuase you don't feel well. Couldn't you kind of sort of time one of those unwell days to coincide with one of those meetings that's a 2 hour drive away? I know it's a long way, but it might be worth trying just once? I am the queen of "You want me to do what". I bought a new car in 2005 and it has less than 19,000 miles on it. You do the math. I live in the middle of Goddess foresaken nowhere on top of a mountain, but I've been known to plan a trip down the mountain to hit Whole Foods, Clarks and Henry's and stop for some Pollo Loco chicken on the way back up. Yeah, it's a whole day out of my life but it's a ME day.
I also treat myself to a couple hours at the lake just enjoying the water. Is there some other way you could be good to yourself, something you'd enjoy besides eating? Not that I poo poo eating as entertainment, but sometimes with you're Celiac eating can be stresful. I personally keep Hagan Daaz in the freezer and buy really good coffee; two of the things I can still enjoy. A lot of things get taken from some of us when we're diagnosed. It does help if you can find something or give yourself permission to have something that makes you feel like you're being given something back instead of just having stuff taken away, if that makes any sense.
For years of my life I was ANGRY..... I was impossible to be around..to the extent that I couldn't even stand to be around myself. I was MANIC....I would get home from work at a little past 5 and start cleaning, too many times to count, the next thing I would remember is scrubbing grout in my bathroom at 2am, all the time between 5pm and 2am completely erased from my mind, only a clean apartment to let me know what I had done. I got diagnosed with cervical cancer...DEPRESSION....finally I sought assistance from a wonderful psychiatrist. She diagnosed me with DEPRESSION due to the cancer diagnosis and turning 30 in the same month. She said I exhibited traits of BI-POLAR disorder, but she wasn't completely convinced that I was, and she diagnosed me with MANIC-DEPRESSIVE disorder. She started treatment with a number of medications and that is when the fun begin.
The first few we tried really did nothing. She upped the dose, I started going 5 days at a time with no sleep. One or two nights after I would sleep for 2-3 hours then the cycle would repeat itself. She gave me sleeping medications. First one we tried..I was getting up taking showers at night with no knowledge of this..only my wet hair and dirty towel on the floor (a girl who scrubs grout with a toothbrush at 2am doesn't leave dirty towels on the floor when she is conscious) to let me know what I had done. The next one worked great! I slept days and almost got fired from work for being a no call / no show for two days..only a letter from my doctor saved me from that fate. The next one didn't work and she upped the dose and every morning when I awoke and got out of bed...I fell down! I literally fell on the floor. It didn't matter whether I just jumped right out of bed or sat on the edge for a few minutes before rising to my feet, I FELL DOWN EVERY MORNING!
Enough! I said to myself after 3 months of this madness. I cleaned all the half used bottles of medications out of my cabinet filling a plastic grocery bag with 50 different half used "treatments". I ended my sessions with the psychiatrist, wouldn't answer the phone when she called...life turned to "normal" for the next few years.
Unexplainably, I went from a size 16 to a 20 in a matter of 6 months. I blamed it on over eating due to the depression and the fact, that for the meantime, i wasn't manically cleaning my apartment (no exercise).
Failed relationship after failed relationship. Failure to advance at work due to my "attitude". Failure to be social with my friends..failure to feel anything but psychotic..praying for death, but to chicken to actually do anything about it.
4 years later, 2 more failed relationships, I start a low fat, high fiber diet. (Awesome way to go for an undiagnosed Celiac---NOT!) I am now a size 14 and I have a new boyfriend..things are looking up right? WRONG boyfriend moves in, psychosis begins again. Yelling at him when he doesn't use a coaster, not allowing him to help clean, make the bed or wash the dishes because he "didn't do it right". He didn't like low fat, high fiber, so I started packing the pounds back on and am back up to a size 20 and sometimes a 22.
1 year later, Celiac diagnosis, boyfriend gone, cramping pain and inability to eat pretty much anything while by body expelled this newly known to me poison called gluten. I lost 48 pounds, back down to a 14 and sometimes a 12. 8 months have passed as I write this. I am alone...I am afraid to meet people...people I meet are enthusiastic to learn of my illness, but quickly tire of it. I hoard food, I can barely close my freezer and my cupboard looks like a gluten free product warehouse. I spend weekends cooking obsessively. The only person I will allow to prepare my food other than myself if my mom and only if I pretty much stand over here while she does it. I do go out to eat at two local restaurants on occasion, since I am trusting of them (not my own mother, but strangers who are chef's in a restaurant..really??? )
I feel like my life is in shambles. I feel like the Celiac is the root of it all. If only I had been diagnosed early in life??? If only I hadn't been diagnosed at all? I am miserable at work, I use my illness and my FMLA as an excuse to miss work. I am in a hole and I don't know how to get out. I am afraid to get out, it's kinda nice in here..well, not nice exactly, but safe...yes, I guess that safe is a better word. My friends and the lovely people on this forum offer suggestions, tell me even in the small town I live in there must be something to do, some way to make new friends...the nearest support group is 2 hours away and I would have to miss work to go to it. I have alienated everyone...except you all who read this, and offer support....
That's all I got. Thanks for reading.
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The local ice cream truck sells a Blue Bunny ice cream on a stick that is gluten-free. Tastes great. Blue Bunny is pretty well known for their accurate labeling and gluten-free products.
I thought NO way would this be gluten free, but my husband found it and said it was.....here is a link to the product. I don't see anything, but I am newer, so I want to be sure.
Open Original Shared Link
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I had breast pain for years starting in my late 30's. No lump, nothing showed up. It did not go away when I went gluten-free. It only stopped once I realized I was allergic to soy and cut that out of my diet. Even then it took a couple weeks for the pain to go away. So it's possible it's just one of your bodys ways of telling you something is still bothering you. Caffeine never seemed to make a difference for me either.
I often experience days of breast pain (and not before my period) and wonder if anyone else has this. There is no real pattern to this, it just happens for about a week or so and then goes away. The nipples especially can be very sore. I don't breastfeed (I have no children) and have also gotten mammograms and sonograms but have been told that I have no problem. They say that you can get bouts of breast pain at odd times. I'm 32 years old. I wonder if this has anything to do with celiac disease (just got diagnosed 2 1/2 months ago but I think I've had it for over 10 years).
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Actually you DO have symptoms. You are anemic. That is a symptom of Celiac Disease. You have trouble gaining weight and keeping it on. That is a symptom. You DO have symptoms.
Is it weird that I have no symptoms...the only reason I got tested was because I was anemic. I ate wheat chex every single day and never felt sick once. Just doesnt make sense ot me. I feel like I am starving constantly. Hate to be on this diet for nothing. I cannot afford to lose weight, I only weigh 102 pounds. Anyone else have this problem?
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Yes, I can relate. Unfortunately for me, it's not just gluten I react to that way. Other food allergies have the same effect on me. I'm thinking part of it may be a histamine response and my reaction to that but I don't know. But the downward spiral is exactly how I describe it as well. I know what I'm feeling is not how the world really is but I can't talk myself out of it. There is literally a physiological effect going on there and no amount of talking seems to matter. I wonder if some of us just aren't more prone to neurological reactions to foods we're intolerant or allergic too.
My question is, when I ingest gluten (it's not often but I know I haven't been 100% diligent) is it possible that it affects my mood? I find that after eating even miniscule amounts of gluten my whole demeanor changes. I get really really down, agitated, moody and just overall negative. It's so hard to snap out of it and this usually lasts for about 3 days then I'm back to myself. It's kind of scary to slip into such a downward spiral emotinally that you can't pull out of. This is new for me as I haven't reacted to gluten like this before. I figure gluten causes so many other things, why not this? At least if gluten is at the heart of it I can pull my socks up and really make sure I'm 100% gluten-free. Just looking for some advice as I'm totally new to this whole brutal disease.
Thanks for listening.
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I have to second the Mission Tortilla brand endorsement! Every other brand I've tried I've reacted to. Mission is the only regular corn tortilla brand that truly seems to be consistently safe from CC. The same is true of their tortilla chips, and since they don't use sunflower oil, I CAN ACTUALLY EAT THEM.
I've never been a fan of the rice tortillas; they've always been too heavy and bulky for me. I do also sometimes make wraps from the basic Chebe mix when I want something softer and more pliable.
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Ataxia is a change in neurological functions that results in coordination issues and can include speech or communcation problems. Gluten Ataxia is ataxia caused by your body's immune response to gluten.
For me that means difficulty balancing, changes in my speech and my ability to choose the right words. I still accidentally slam parts of my body into walls and furniture. Fortunately that part has gotten better over the years since I went gluten-free. It spills over into my writing often.
The gluten immune response seems to cause changes in the cerebelum in particular. It's been suggested that the symptoms are similar to those that MS patients have.
What is the ataxia? I have had the issues of focusing the eyes and the brain fog and issues similiar? Man, it does take work but the normal docs don't have all the answers, prayers coming your way.
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Different people have different problems challenges intolerances and allergies. I've been gluten free since December 06. But guess what, I'm still rooting out allergies and intolerances and new ones pop up periodically and I could go on about that for pages but I won't.
As for restaurants, well that depends on where you live. Not everyone lives in a big city or even a marginally large city. We have two grocery chain stores here and the only organic store went out of business last year because of the economy. About all we've go in the way of chain restaurants are fast food places, not an Outback or Olive Garden in sight. So yeah, I cook every meal rather than trust Jo Schmo at the italian restaurant/pizza parlor to understand what gluten is.
What I'm trying to say is that you cannot judge another person's life or experience by your own experiences.
Industry Warned Over Nutritional Content
in Publications & Publicity
Posted
I have two concerns about this "warning". For starters anyone who eats bread looking for protien iron calcium and other vital nutrients deserves what they get. Bread should not be a significant source for those things, not even wheat bread. Now if you go dumping ten thousand additives into it the way the mainstream food industry does, maybe, but IT'S NOT SUPPOSED TO BE THAT WAY. A so called dietician ought to be counseling people to eat whole foods, not look for what their body needs in overly processed bread products.
Secondly, many Celiacs have additional allergies and food intolerances. The more crap you dump into a product the higher the likelyhood that fewer people will be able to eat it. Yeah, dump a load of soy protein into a loaf of bread to beef up the protein content and watch how many people suddenly have to pass on your protein fortified gluten-free bread. Again this dietician doesn't seem to understand the struggles some gluten-free people are dealing with.
And does she REALLY think that manufacturers are going to run out and track down buckwheat flour, or more likely, are they going to find the cheapest thing they can find to bulk up the bread. This is just more evidence to me that most dieticians don't have a clue when it comes to what a truly healthy diet should be.