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Member Since 03 Jan 2008
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#632996 "gluten Free Is All The Rage Now"

Posted by on 19 August 2010 - 06:53 AM

Dr. Rodney Ford estimates that between 30 and 40% of the population react negatively to wheat :unsure:
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#632186 Can Symptoms Come And Go? Help Me Understand, New To This

Posted by on 16 August 2010 - 02:04 PM

Help. I am 42 yo and have been diagosed w ibs/ gerd..... Well for the past twenty years I have suffered with very painful diarrhea- an episde lasts hours and the pain is horrible, to the point I have passed out- vasovagal reaction. When I have a flare, I can't eat for the day and if I do, symptoms return. This usually lasts months at a time and then it magically dissappears. I have to take levsin during my bouts. Well about a year ago I saw a GI doc who thought I may have this celiac thing, but the initial test came back neg. So I dismissed it. He wanted to do a biopsy and I declined. Well this bout I noticed when I ate cereal by lunch time I was cramping again. Also I always "feel" it coming on - fatigued and fog headed on those days. I blamed it on depression and got on antidepressants, but it did not change any of my symptoms. So..... About a week ago I decided to stay away from all gluten, and have not had a return of the cramps... Feeling much better....and now I don't ever want to eat gluten again. Also my very first episode came on after eating a box of ritz crackers at 18yrs. I always thought it was the fat that upset my belly so, but guess it could be gluten. I am a carb freak but am pretty fit/ lean w 15% body fat. Other things, I am lactose intolerant and chronically anemic. Could this be that I don't have full blown celiac but just gluten sensitive and how come it's taken so damn long to figure this out!!!!

Hi and welcome to the forum.

Don't feel bad about how long it took you to figure it out - you were pretty speedy compared to me :rolleyes: And one of the main reasons is takes so long is we all get told by our doctors that we have IBS, when there really isn't a specific medical definition of what IBS is other than intestinal problems for which they can't figure out the cause :(

I used to get that vasovagal syncope too - in the bathroom trying to decide whether to throw up in the toilet or sit on it, and you would end up fainting on it or beside it :lol: Not a good way to live life. My symptoms were not constant either, but then in 1990 or so I became lactose intolerant - didn't know anything about lactose and gluten so no connection made. But the connection is that the enzyme that digests lactose is formed on the tips of the villi in the small intestine, these same villi which get damaged by gluten, so the ability to digest lactose is often the first thing to go. Others don't realize it until they cut out gluten and the cramping and diarrhea doesn't go away. The good news is that without the gluten your villi heal and you can once again digest lactose.

Pity about declining the biopsy, it might have short-circuited the process, but then again a lot of celiacs (about 20%) will test negative on both bloodwork and biopsy, so there are no guarantees. And no, I would say that if you cannot digest lactose you are not just gluten sensitive, but you have probably got intestinal damage and full-blown celiac. Anemia is also a symptom that goes along with celiac. Have you had testing for other nutrient levels, like Vit. D, B12, folate, potassium, calcium, and have you had your thyroid tested. These are all co-riders with celiac and gluten intolerance because you are not absorbing the nutrients from your food.

Either way, celiac or gluten intolerant, you really should not eat any more gluten because you know it harms you. Good luck on your gluten free journey through the rest of your life. Any questions you have, just fire away and we will do our best from our collective knowledge to answer them :)
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#632081 What Is Your Response When People Say.....

Posted by on 16 August 2010 - 09:25 AM

"I could have your thighs!"

Can't use this one, I do have her thighs :lol:
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#632071 Anyone Immune To Poisin Oak/ivy?

Posted by on 16 August 2010 - 08:39 AM

I was immune my first couple of exposures, but then year after year the reaction (systemic hives) got worse and worse to poison oak and I had to take so much prednisone I was reacting allergically to that - one of the reasons for my move from 'the golden state'.
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#631961 My Test Was Negative, But The Diet Works Wonders?

Posted by on 15 August 2010 - 06:54 PM

Hi Scuzy and welcome to the board. I think you have come to the right place for help. I hope we can collectively provide that.

Yes, it is unfortunate that most celiac patients know more than their doctors about the disease; as far as I know IBS is not an inheritable condition (because they can't even define it to my satisfaction :unsure: ) whereas celiac is a definitely identifiable disease and proven inherinitable. Unfortunately the identifiers they use do not catch all the cases of celiac, in fact maybe only a small percentage -- the research numbers keep changing all the time. But we do know it is an inheritable condition (you will not necessarily develop it just because you carry the gene, but your chances are greatly increased). This alone should ring some alarm bells with the docs with a father and his mother both diagnosed as having IBS, and now you???

The common wisdom today is that the blood tests and biopsy show a 20% false negative rate for celiac. Some doctors, upon negative testing, will just tell you to go away and be happy with your IBS :o ; the smarter ones will tell you to give the gluten free diet a trial and see if it works for you; in other words, you may be one of the false negatives. Many of those doctors will in fact give you a celiac diagnosis if you have a positive response to the diet and your symptoms go away. Patient is happy, doc is happy, all is good.

But some people do seem to need the piece of paper that says celiac on it. Many of us here are self-diagnosed after years of being told incorrectly that we had fibromyalgia and IBS -- well, actually some of us do continue to have some fibro symptoms, some of us are in denial about them, but we all know that gluten is a problem for us and that we should not consume it. We are happy enough with that because we feel so much better, our other symptoms lessen, sometimes go away, and we feel terrible whenever we get glutened. If you can live with this situation, then you don't need any more testing by anyone. You just live your merry gluten-free lifestyle (and have the hassle, I admit, of explaining to everyone you know why you eat the way you do - it comes with the territory.)

Now, that being said, it sounds like they just did the bloodwork and not the biopsy for you??? The biopsy is considered the gold standard of diagnosis - if you have the right intestinal damage you are definitely celiac, if you just have some abnormal antibodies you may or may not be... However, and it's a big however, it is possible to be negative on both bloodwork and biopsy, and still have problems with gluten - gluten intolerance, gluten sensitivity, whatever you want to call it. In order to have the biopsy you have to keep on eating gluten, and depending on how long you have been off it you may have to stay on it as long as two months, just to face the possibility of once again a negative diagnosis. And in the meantime you have suffered and done more damage to yourself. You are caught in a Catch 22 situation. So you can see if you can find someone to do the biopsy, or....

The other option is to order online testing from Enterolab. They will test you for gliadin antibodies in the stool (which hang around much longer, up to a year, than in the blood. They can/will also test you for parasites, GI bacterial overgrowth, candida overgrowth, sensitivity to dairy and soy, fat in the stool (which indicates you are not digesting your food properly) and they will/can tell you whether or not you carry a gene or genes for gluten sensitivity and/or for celiac. They cannot tell you you have celiac, but can give you some strong indications. But insurance does not cover this testing; it is out-of-pocket.

So now you have some different modes of approach and you will have to think about it and figure out what is right for you.

I hope others will chime in with things I have not covered or differences of opinion.
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#631844 "But You Can Eat Whole Wheat, Right?"

Posted by on 15 August 2010 - 08:44 AM

But very little does not equal none. Besides, he didn't make that distinction so she continued to eat cottage cheese, cream cheese, yogurt, etc.

Everyone has a different tolerance level. I was severely intolerant of milk, cream, ice cream and frozen yogurt. I could eat cheeses, cream cheese, sour cream, yogurt, butter, without any problem.
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#631827 Almost Diagnosed, Plus Some Questions About Celiac

Posted by on 15 August 2010 - 07:20 AM

Yes, Tori is right, zero gluten means -0- gluten, at least intentionally. We all slip up once or twice at first before we learn where gluten hides. You will find that once you eliminate gluten your body is so relieved that it will react even more strongly to smaller amounts when it encounters it again. That is the second reason for the zero tolerance policy. The first is that, of course, you want to heal as quickly as possible and every little bit does set you back somewhat.

If you are intolerant to lactose, and with villous atrophy I would expect you to be, then if you expect your gut to heal quickly you will have to eliminate that too. The enzyme that digests lactose is made on the tips of the villi, so you won't get that enzyme back until your villi heal. But there are plenty of other milks out there. There are milks made from rice, from almonds, from soy (although I wouldn't recommend soy right off the bat) and in the U.S. there is even hemp milk that are quite delicious to have with your new gluten free cereal in the morning in place of those 4-5 weetabix (that was a pretty heavy gluten load right there! :rolleyes: ) But it looks like you might be in U.K. so don't know what they have there. We don't get hemp in New Zealand (something to do with the dope connotation I think; not allowed to grow it :lol: )

You might be one of the lucky ones whose AS symptoms resolve once free of the gluten. If you are RA sero-negative and have not had them for long chances are quite good, but if you cheat the symptoms will probably flare on you. Good news is that there is gluten free pizza and beer, to a greater or lesser degree depending on where you are. The beer is brewed from sorghum and is quite decent. The gluten free breads range from decent to horrible; companies generally do a better job with biscuits and sweet things, but better to start off without the gluten substitutes unless you absolutely HAVE to have cereal for breakfast. Shop the outsides of the supermarket for fresh produce and meats, eat some rice and fish, things that are easy to digest for your damaged gut, and give it a chance to heal. You should notice an immediate difference, at least within a couple of weeks, but do expect to have ups and downs because you can't just turn off the gluten tap and be healed right away.

Good luck on your new lifestyle :)
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#631595 Asymptomatic Celiac, And Now That I've Gone Gluten Free Am Having Stomach...

Posted by on 13 August 2010 - 08:16 PM

Going gluten free does give one unexpected surprises. For me I knew that corn and soy were problem foods, but I never suspected that nightshades (tomatoes and potatoes, ferevvinsake) could be a problem. Those were my comfort foods. Pizza always made me feel good. My favourite side dish was ratatouille with most of the nightshade family in there. Nevertheless, I am intolerant of nightshades, as it turns out. What seems to happen is that our body is so busy trying to respond to gluten (in whatever way it figures how, and as you have discovered, in so many different ways for different people; e.g., I do not have osteoporosis despite having obviously been gluten sensitive for 30 years) that the response to other food intolerances is masked. Once the gluten is banished the other foods get a chance to have their voices heard. That is why celiacs ofen discover co-food intolerances that were previously unsuspected. I would suggest that you eliminate at least lactose for now (milk, cream, ice cream, frozen yogurt, soft cheeses) for now, and if that doesn't work than all dairy to see if that makes a difference to the way you feel. What have you got to lose except the discomfort, and you have your good health to gain. Of course, by eliminating diary you need calcium supplements, but if you have osteoporosis you need calcium and Vitamin D supplements anyway.
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#631289 Elimination Diet - Making Me Sick?!?

Posted by on 12 August 2010 - 08:41 PM

No, it doesn't necessarily mean you have a lot of damage, but it might mean that you have several other food intolerances. It took me a long while to figure out what mine were. Quinoa was one of them. You could be a lectin reactor (I sure hope note) but if you google lectins you will get some idea of what to avoid. Good luck on tracking this all down. I basically did it all by myself, but it takes a while that way, If you could find a good nutritional educator it might help. Good luck :)
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#631285 Too Much Time On My Hands...

Posted by on 12 August 2010 - 08:27 PM

Good for you Daisy. Sometimes gluteny does become disgusting :blink:

And then you have to deal with the people who are glainers or gloosers :blink: I was a glainer myself and can't seem to gloose -- maybe now that I have this glectin problem sorted??? :lol:
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#630608 Question Regarding Sensitivity

Posted by on 10 August 2010 - 08:16 AM

So aside from a few slip-ups here and there, I've been doing gluten-free for roughly four, maybe five weeks. I've been noticing lately that when I accidentally stumble into some gluten, the response is a lot worse than it was before I went gluten-free.

For example: Last night, without thinking, I ate some of my favourite candy. Also last night, I got a really bad sinus headache and an iffy stomach. I checked the box of the candy this morning (once I realized my mistake) and it said "may contain wheat starch." Ugh.

I've been having GI/sinus issues for the last couple of years, but I've always been able to eat this candy without having such a dramatic response. Is it because I've removed gluten from my diet, so my body is reacting stronger now? Does that make sense? The longer I go gluten-free, the more sensitive I'll be to the odd glutening here and there?

Is that logical? Likely?

Yes, I'm afraid that's the way it all too often turns out. When your body was being assaulted by gluten it could not fight back so well, it was overwhelmed. Now that you have done some healing and your body has built up its reinforcements, new assaults are likely to be met with much more resistance. :lol:
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#630522 Lectin

Posted by on 09 August 2010 - 04:54 PM

For all of you that are nighshade and Lectin sensitive any help for a newbie? I've been reading older post and I feel like I need to try these diets. I'm not sure which direction to head in and what do I eat? It seems overwhleming, but I don't want to bloat or have pain. Thanks!

Diagnosing lectin sensitivities is not an easy task because there are so many lectin families, of which the nightshade one is perhaps the most prevalent on the board. Of course there are lectins in gluten too and in many other grains, including buckwheat, millet and quinoa. I do not tolerate quinoa but the other two are okay. I was sensitive to so many legumes that I have excluded the whole family, including green beans and peas (these I challenged - and reacted to - because I had read that I might tolerate those)., Corn is also a common lectin intolerance, as is dairy. And soy and peanuts rank highly too. So to do it the proper way, you would cut out alll those lectin families, and introduce members of them one at a time. That would mean a diet of meats, rice (preferably white), non-nightshade vegetables, fruits,seeds, kind of the basic paleo diet.

To test lectins,I would start with potato, and then tomato. If both of these are okay you will probably be okay with the rest of the nightshadest. Do not muddy up your testing. Take one lectin food at a time and go through one group at a time. Then move on to the next. When testing a food, try to make it a single ingredient food, or that ingredient combined with only known safe foods, so that the results are clear.

Good luck, and let us know how you get on.
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#630518 Too Much Time On My Hands...

Posted by on 09 August 2010 - 04:33 PM

How about a Glu-sty for a place that is contaminated with gluten.
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#630275 "But You Can Eat Whole Wheat, Right?"

Posted by on 08 August 2010 - 08:41 PM

I think this is the reason people roll their eyes :rolleyes: , when other people have carried things to ignorant extremes and screwed up the pitch for the rest of us who do, perhaps, know what we are talking about. To not wear wool when it is shorn from a sheep which does not hurt it at all (and which incidentally needs to get rid of all that wool), or for people to think that we shouldn't pick the cotton.... it just doesn't even bear thinking about. But I do like the cows laying eggs analogy :lol: . Now if you really want to be an ovolactovegetarian, go ahead, but let's keep things straight; you can even be a pescatarian if that's what floats your boat, but does a pescatarian wear wool??? :blink: I can see not wearing fish scales or chicken feathers - but do you have to rest your head on a polyester pillow?

Sorry, it is late at night and the brain tends to run away a little...... Hope I have not offended anyone with these ramblings. Not intended.
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#630162 Cysts Went Away!

Posted by on 08 August 2010 - 12:41 PM

Okay, don't want to rain on anyone's wonderful cyst-free happiness parade but, I had terrible fibrocystic breasts ALL of my life. They finally are not bothering me after being gluten-free for over 3 years. Just wanted to add that so people who may have been sick for a long time, prior to diagnosis would not get discouraged when they aren't "cured" quickly.

I was always getting called back for extra mammo films and ultrasounds, had four neg. biopsies; since gluten free 1 year have had no further callbacks.
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