Thursday, February 22. 2007
So can't eat wheat but not allergic to it
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I've had exactly the same experience - up to the skin test. I must say, I've not tried the more modern blood tests. The fact is though, that wheat makes me feel awful for weeks.
Like you, I can eat oats, barley and rye. I had a biopsy for celiac twice - the second time I ate wheat before hand to make sure the test was valid. The test itself took a few hours, but eating wheat make a waste of several weeks, so that test took about two months! I don't have celiac.
If it makes you feel crappy, it doesn't really mater what the medical tests say, the ultimate test says don't eat it!
Like you, I can eat oats, barley and rye. I had a biopsy for celiac twice - the second time I ate wheat before hand to make sure the test was valid. The test itself took a few hours, but eating wheat make a waste of several weeks, so that test took about two months! I don't have celiac.
If it makes you feel crappy, it doesn't really mater what the medical tests say, the ultimate test says don't eat it!
I too can't eat wheat- it makes the glands in my neck swell and leaves me lethargic, and if eaten on a regular basis I become almost narcoleptic... Yet I too have had skin prick and coeliac tests and have had a negative result. I dont know what it is but I am definetly allergic to wheat. So I have not eaten it for 5 years, but it never gets any easier to find nice food when Im out at lunch or dinner that wont make me feel crap for the next few days or weeks. Its good to know others have the same issue, even though it would be great to have some medical backup!
I was diagnosed with lymphocytic colitis in Jan and have not responded well to medication (Asocol and 4 Immodium per day - still goin to the loo a lot!!) So in addition to following a vegetarian diary free diet (personal choice) I have now been advised to go wheat free too. After 10 wheat free days my joint pain has almost disappeared I feel more energetic and my moods have improved, plus a slight decrease in trips to the loo and have come off the Immodium. Today on Dr's advice I tried a vegetarian sausage (contains wheat) sandwich -within 40 minutes I was running for the bathroom and have spent the day feeling lethargic and grotty. Looks like its wheat free from now on!
I have been ill for most of my adult life. I kept going to the Doctor saying I must have arthrits with all the pain I was in.I've had many tests and been diagnosed with fibromyalgia and put in many meds that nocked me out, IBS and had my Gallblader removed in 92 which was going to solve all my problums. I was told by one Doc I was allergic to dairy, not true,and one said I needed to see a mental Doc. But I did not have one Doctor sugjest a wheat allergy. I have a friend that I meet after I moved that can't eat wheat, she is ceiliac. Gess what, she told me all my simptoms before I could tell her. Now I am wheat free for two yrs. and even though I am limited on where I eat and what food I by, I have my life back after 15 yrs. of being sick and I'm off all the strong meds. I've had the ceiliac biopsy and was negative. That dosen't mean I don't have a wheat allergy and I had to learn some things the hard way such as licking the envelopes for my daughters wedding invites, wheat paste. So if you suspect wheat listen to yourself!!! Look all around and be thankfull you can have better health.
I have the book on how to eat right for your blood type and it says that people who have O blood type should not eat wheat!
I fall asleep within an hour or 2 of eating wheat and may even get heart arrthymias from it. I'm still figuring it out. I have IBS and GERD. I have been tested for allergies and came back positive for a Latex allergy. It seems that the proteins of foods and latex are similar including wheat. You may be allergic to something similar and that's why you react the way you do.
Most people either don't have allergies, or have more than one allergy, according to my allergist. According to that theory, if you know you have one allergy, it won't be a surprise if you discover more, even to totally unrelated substances.
Thank you for shedding light on what my problem could be. It is as if you are describing my symptoms and guess what? I have a sensitivity to latex!
It's been very useful for me reading through your site - the links have taken me in an unexpected direction, as I've been puzzling for ages why whenever I eat wheat it's as if my digestive system almost shuts down for a day or two in protest (so, no diarrhoea then!) plus the lethargy, bloated belly, and (weirdly enough) an itchy scalp.
Lately this has got a lot worse, but following some hints from your site, now it's looking like what I'm dealing with is IBS with wheat as the trigger. Sigh... Spelt was looking promising for a while, but now I seem to be developing an intolerence to that too. Apart from avoiding wheat & spelt, I'm finding that psyllium husk and barley grass (for the chlorophyll) is a big help in 'keeping things moving', as well as not eating for a few hours before going to bed.
The frustrating thing for me is that up until now, all the info I'd been given by doctors said: wheat intolerance always leads to diarrhoea, you don't have that, so sorry and off you go. Good luck, us...
Lately this has got a lot worse, but following some hints from your site, now it's looking like what I'm dealing with is IBS with wheat as the trigger. Sigh... Spelt was looking promising for a while, but now I seem to be developing an intolerence to that too. Apart from avoiding wheat & spelt, I'm finding that psyllium husk and barley grass (for the chlorophyll) is a big help in 'keeping things moving', as well as not eating for a few hours before going to bed.
The frustrating thing for me is that up until now, all the info I'd been given by doctors said: wheat intolerance always leads to diarrhoea, you don't have that, so sorry and off you go. Good luck, us...
Food intolerances are tricky, since there isn't a correlation between specific symptoms and a specific food intolerance.
This article on how to self-test for allergies ( *link removed by moderator after reading article as we do not recommend self-testing, indeed it can be dangerous to embark on elimination diets without proper medical direction*) might give you some helpful ideas.
This article on how to self-test for allergies ( *link removed by moderator after reading article as we do not recommend self-testing, indeed it can be dangerous to embark on elimination diets without proper medical direction*) might give you some helpful ideas.
I am quite incensed that you would edit my comment, and remove a link because you don't agree with the article. How about leaving the link, and letting people decide for themselves? You could add your opinion as a reply to my comment, but censoring the link out shows a lack of respect.
It is for this reason that I have removed the link from my links page to your blog - I don't agree with your editorial policy.
It is for this reason that I have removed the link from my links page to your blog - I don't agree with your editorial policy.
I'm sorry that you don't agree with our editorial policy, however our policy is firm on matters concerning self-diagnosis.
And I'm disappointed to hear that in a fit of pique you have removed your link to our site.
No-one should enter into an elimination diet, especially for long periods of time without professional supervision.
Once again I'm sorry we have incensed you, however we have to be careful that people using this website, especially those who suspect they have a food allergy or intolerance, seek professional help rather than trying to self-diagnose.
And I'm disappointed to hear that in a fit of pique you have removed your link to our site.
No-one should enter into an elimination diet, especially for long periods of time without professional supervision.
Once again I'm sorry we have incensed you, however we have to be careful that people using this website, especially those who suspect they have a food allergy or intolerance, seek professional help rather than trying to self-diagnose.
It is true that professionals can be of help to some people, but they are not helpful to everyone.
Self-diagnosis worked for me, where as "professionals" were unable to find the problem.
Keep in mind that professionals (doctors) are responsible for thousands of deaths a year due to bad drug interactions.
Is it really reasonable to put 100% faith in professionals and 0% faith in one's self?
I think not!
I believe that blind faith in professionals is dangerous, as helpful as they can be.
I also fail to see the harm in an elimination diet.
You have a narrow view on this in my opinion. You are perfectly entitled to your narrow view, by the way, perfectly welcome to it. But I don't subscribe to such a limited view of the world, hence I'm not going to go out of my way to direct visitors at my website to come visit yours. I'm not going to tell anyone they shouldn't visit your website either.
Self-diagnosis worked for me, where as "professionals" were unable to find the problem.
Keep in mind that professionals (doctors) are responsible for thousands of deaths a year due to bad drug interactions.
Is it really reasonable to put 100% faith in professionals and 0% faith in one's self?
I think not!
I believe that blind faith in professionals is dangerous, as helpful as they can be.
I also fail to see the harm in an elimination diet.
You have a narrow view on this in my opinion. You are perfectly entitled to your narrow view, by the way, perfectly welcome to it. But I don't subscribe to such a limited view of the world, hence I'm not going to go out of my way to direct visitors at my website to come visit yours. I'm not going to tell anyone they shouldn't visit your website either.
Wow, does this ever sound familiar. I have gone wheat free by choice, but keep eating rye and oats without problems. I find it fairly easy to listen to my body and can tell if something has irritated me or not. I find starches a bit of a problem too, so I tend to limit my rice and potato quantities. It is only recently that I have tried a wheat free diet but I've had good results and seem to be feeling better. I too am curious as to whether it is an allergy or intolerance or something else. Its puzzling. I have what I have only once seen referred to as "apple belly" but it described my condition perfectly. (Very round, almost pregnant looking belly.... which is usually flat) Has anyone else heard anything about this ? Rebecca
I have been suffering with extreme bloating for over a year and a half, and have gone to my general practitioner and a gastrointestinal doctor with no results. I recently saw a naturopathic doctor, who wants me to try a wheat-free diet for the next week until my appointment. It has only been three days, but the bloating is still there. The ND told me that I would have to be patient, but I'm just curious as to how long others have to go wheat-free to see results. I have heard people say that it could take up to 6 weeks. Just wondering about other people's experiences. Thanks!
I have had severe bloating and midback pain for more than six months. When my belly would bloat---i looked about five months pregnant and that is when my back would hurt. I finally went to the doctor. I was fortunate to have one that listens and was tested for food allergies. Turns out I am allergic to wheat. It took two weeks for my bloating to go away. My back pain also stopped. If i accidently ingest something with wheat---benedryl helps calm it more quickly. Hope this helps.
Hi there I just would like to comment on the way these problems are dealt with in the medical profession. I too have felt tired, dead tired for about 10 years. My stomach pains are so bad that some evenings after supper I am unable to leave the couch. I have pin pricks all over and sometimes am so itchy that I could scream. My doc has prescribed zoloft, prozac, and some other thing and I never take it. I am not depressed I am at my wits end with this. Is there any advice any one can give? (I did go to a natuopath who took me off wheat for 3 weeks and I felt normal again. But went back on it to get tested for celiac.)
Hi Patty...have you considered that it might be related to a Candida Yeast problem? The itching you describe sounds like yeast problem. Not too many doctors are familiar with it, but there are some, and of course, lots of information at a health food store.
Does this sound like wheat intolerance or allergy or even coeliac? Since late teens I have suffered from lethargy, which strikes unexpectedly and can last for days. I have discomfort, which can become pain, in the top right hand quarter of my abdomen and I am usually quite constipated, with occasional bouts of diarrhoea for variety, constant mild nausea which is temporarily alleviated by eating (so I eat too much).
When I eat wheat, or barley, but not oats, I feel a drying and burning in my throat and gullet, but I love bread, pastry, pasta etc. I have reluctantly guessed at wheat intolerance and cut it out for several weeks. Yesterday I had to drive for about six hours and stopped for food. There was nothing that didn't have wheat, so I risked a focaccia. I started driving again and, within an hour, found myself unable to concentrate or keep my eyes open. I stopped again and ate (more wheat, unfortunately) and made it home fine, but have felt grotty ever since.
Cutting out wheat would be inconvenient, but not the end of the world. Is there much point in going onto a medical merry-go-round of expensive and uncomfortable tests just to tell e what I've already guessed for myself? Is there anything vitally nutritious I would miss if I cut out wheat permanently?
When I eat wheat, or barley, but not oats, I feel a drying and burning in my throat and gullet, but I love bread, pastry, pasta etc. I have reluctantly guessed at wheat intolerance and cut it out for several weeks. Yesterday I had to drive for about six hours and stopped for food. There was nothing that didn't have wheat, so I risked a focaccia. I started driving again and, within an hour, found myself unable to concentrate or keep my eyes open. I stopped again and ate (more wheat, unfortunately) and made it home fine, but have felt grotty ever since.
Cutting out wheat would be inconvenient, but not the end of the world. Is there much point in going onto a medical merry-go-round of expensive and uncomfortable tests just to tell e what I've already guessed for myself? Is there anything vitally nutritious I would miss if I cut out wheat permanently?
I AGREE THAT NOBODY SHOULD SELF-MEDICATE, GO ON SPECIAL DIETS AND STOP TAKING MEDICATIONS WITHOUT DOCTOR SUPERVISION. HOWEVER, I UNDERSTAND HOW FRUSTRATING CAN BE GOING ON DOCTORS APPOINMENTS EVERY DAY, GETTING TESTED, GETTING POKED AT AND STILL NOT KNOWING WHAT'S WRONG.
I DO HAVE A GREAT ALLERGIST AND I AM BEING VACCINATED FOR A NUMBER OF ALLERGENS (CATS, DOGS, POLLEN, DUST MITES, ETC, ETC) BUT WHEN IT COMES TO WHEAT I HAD TO DEAL WITH THAT ON MY OWN AND LEARN THE VERY HARD WAY THAT I CAN'T EAT IT WITHOUT BEING MISERABLE AFTERWARDS. I DON'T KNOW IF IT'S A ALLERGY BUT IT SURE IS A PROBLEM [INEXPLICABLE WEIGHT GAIN, UNBELIEVABLE WATER RETENTION, HEADACHES, INTOLERANCE TO HIGHT TEMPETURE, ITCHES, RASHES, DEPRESSION AND IRRITABILITY] MY ALLERGIST PROPOSSED A FEW FOOD TESTS BUT I DECIDED AGAINST IT, AFRAID THAT A TEST RESULT WOULD CONTRADICT MY INSTINTS - I KNEW IT WAS SOMETHING I WAS EATING [AND NO DOCTOR COULD TELL ME OTHERWISE] BUT WHAT? AFTER LONG WEEKS OF ELIMINATION DIETS [FIRST DIARY THEN SALT, THEN WHEAT]I FOUND MY ENEMY TO BE "WHATEVER BREAD IS MADE OF". I WILL ALWAYS REMEMBER MY FIRTS WHEAT FREE WEEK : I URINATED HEAVILLY EVERY 10 MINUTES, IT WAS LIKE MY BODY WAS GETTING RID OF YEARS AND YEARS OF RETAINED WATER. I LOST 4 PUNDS. AFTER THAT THE WATER ELIMINATION SLOWED DOWN A BIT BUT MY BODY KEPT SHAPING FOR THE BEST. IN TOTAL I LOST 10 POUNDS IN A MONTH. I EAT BETTER NOW, I FEEL MUCH BETTER, I HAVE MORE ENERGY THAN EVER AND IT HASN'T BEEN SO HARD AT ALL. ONCE IN A WHILE I EAT WHEAT (HAVE TO HAVE A BURGER SOMETIMES) AND I MIGHT NOT GET AS BAD AS BEFORE BUT I GET BLOATED, AND MY ANKLES GET ALL ITCHY AND BREAK OUT IN LITTLE BLISTERS. IT HAS BEEN ONLY TWO MONTHS AND EVERYDAY I GET BETTER AT EATING BETTER, FROM MY ELIMINATION DIET DAYS I KEPT A NON-DAIRY HABIT [FEEL MUCH BETTER WITHOUT IT, REALLY], I ALSO EAT LESS SALT AND MY EATING HABITS IN GENERAL HAVE IMPROVED A LOT. I HAVE A FEW GOOD IDEAS TO SHARE ON HOW NOT TO MISS THAT GOOD OLD PASTA SO MUCH BUT WE CAN TALK ABOUT THAT LATER.
I DO HAVE A GREAT ALLERGIST AND I AM BEING VACCINATED FOR A NUMBER OF ALLERGENS (CATS, DOGS, POLLEN, DUST MITES, ETC, ETC) BUT WHEN IT COMES TO WHEAT I HAD TO DEAL WITH THAT ON MY OWN AND LEARN THE VERY HARD WAY THAT I CAN'T EAT IT WITHOUT BEING MISERABLE AFTERWARDS. I DON'T KNOW IF IT'S A ALLERGY BUT IT SURE IS A PROBLEM [INEXPLICABLE WEIGHT GAIN, UNBELIEVABLE WATER RETENTION, HEADACHES, INTOLERANCE TO HIGHT TEMPETURE, ITCHES, RASHES, DEPRESSION AND IRRITABILITY] MY ALLERGIST PROPOSSED A FEW FOOD TESTS BUT I DECIDED AGAINST IT, AFRAID THAT A TEST RESULT WOULD CONTRADICT MY INSTINTS - I KNEW IT WAS SOMETHING I WAS EATING [AND NO DOCTOR COULD TELL ME OTHERWISE] BUT WHAT? AFTER LONG WEEKS OF ELIMINATION DIETS [FIRST DIARY THEN SALT, THEN WHEAT]I FOUND MY ENEMY TO BE "WHATEVER BREAD IS MADE OF". I WILL ALWAYS REMEMBER MY FIRTS WHEAT FREE WEEK : I URINATED HEAVILLY EVERY 10 MINUTES, IT WAS LIKE MY BODY WAS GETTING RID OF YEARS AND YEARS OF RETAINED WATER. I LOST 4 PUNDS. AFTER THAT THE WATER ELIMINATION SLOWED DOWN A BIT BUT MY BODY KEPT SHAPING FOR THE BEST. IN TOTAL I LOST 10 POUNDS IN A MONTH. I EAT BETTER NOW, I FEEL MUCH BETTER, I HAVE MORE ENERGY THAN EVER AND IT HASN'T BEEN SO HARD AT ALL. ONCE IN A WHILE I EAT WHEAT (HAVE TO HAVE A BURGER SOMETIMES) AND I MIGHT NOT GET AS BAD AS BEFORE BUT I GET BLOATED, AND MY ANKLES GET ALL ITCHY AND BREAK OUT IN LITTLE BLISTERS. IT HAS BEEN ONLY TWO MONTHS AND EVERYDAY I GET BETTER AT EATING BETTER, FROM MY ELIMINATION DIET DAYS I KEPT A NON-DAIRY HABIT [FEEL MUCH BETTER WITHOUT IT, REALLY], I ALSO EAT LESS SALT AND MY EATING HABITS IN GENERAL HAVE IMPROVED A LOT. I HAVE A FEW GOOD IDEAS TO SHARE ON HOW NOT TO MISS THAT GOOD OLD PASTA SO MUCH BUT WE CAN TALK ABOUT THAT LATER.
i went through a variety of tests several years ago but tested negative for celiac (both biopsy & blood test). my gastro doc thought it might be a wheat intolerance and told me to omit it from my diet. he believed that may be what caused the anemia, gas, migraines, bloating and cramping. I did as he said and it worked! i admit, i do fudge a little now and then but end up paying for it later. only someone in our position can understand what this is like!
I have been tremendously encouraged by this page. I went 7 years under the care of various doctors,having never been sick before in my life. After years of therapy and being told I was neurotic I ended up on Ritalin and prozac which seemed to help the symptoms that had come on suddenly (over a 3 months period) They mimiced ADD so stronlgy that my therapist said that he didnt understand how I had lived the first 30 years without medication. I did a simple fast 5 months ago because of a constant skin rash that no one could get rid of and got the most incredible energy rush of my life. About 48 hours after wheat left my system I felt better than I had in years. All of the neurotic symptoms, the weight gain, the constant fatigue, is gone. My doctors did nothing but drug me and tell me I was crazy, the so called proffessionals in this country should be tarred and feathered for their lack of training in nutritional based syndromes. I lost 7 years to something with a simple solution. Thank you for such an informative page, and hopefully more of the AMAwill eventually get around to recognising this as a mahjor problem.
Wow, I'm so glad to hear you have licked the problem. After reading your story I am sorry you had to suffer so long, and glad I was only suffering the extreme fatigue and in my case weight loss (I hardly ate for several months) for less than 1 year before figuring it out. I still find it difficult but what a relief after so much discomfort. glad to hear others have the same experiences.
Rebecca
Rebecca
Wow. It's really encouraging to read so many positive stories from people who have been given their lives back through avoiding wheat. I too am in that position (although not officially diagnosed) and feel so lucky to have come through the seven year blur of being ill and told I was suffering from anxiety...you really do start to believe it in the end. I'd just like to say to those who have tried it, felt better but not stuck with it to....get back off the wheat. It really isn't that hard once you learn a few tricks and get into a pattern. Don't let the doctors put doubt in your mind. You know your own body. I used to pray (not sure who to) that I would find the answer and I was incredibly lucky to do so. I wish everybody the same luck. M x
I just found this site today and I haven't seen any posts by people who have the reaction to wheat that I do. I have severe arthritis in all my joints, but most painful in my hips and lower back. I have seen numerous doctors and all they say is "Your too young to have arthritis like this". I am 34 and spend most of my time in agonizing pain. I have no health insurance and can't afford to see the specialists I need to see, nor can I afford the hip replacements I will need soon. A homeopathic doctor suggested that I have a food allergy. I detoxed for 4 weeks and re-introduced all the suspect food. Ding ding...wheat!I have severe pain from any wheat product. Recently we had chinese food and specifically told them NO MSG...guess what? I had a reaction 24 hours later and am still suffering from the pain of it. I have found most doctors don't care and aren't interested in helping. Does anyone else have arthritis from wheat allergy? Please tell me I am not alone.
Thanks!
Thanks!
I have not experienced this but I wouldn't doubt that it can cause this as many of the other symtoms we have experienced are not recognized by doctors either. My most severe ones include: VERY 'bloated' belly, cramps and pains in the stomach, headache, some mild constipation..... I did find tho that a small amount of wheat after an extended period of discomfort actually helped get things flowing again.... though may not have been the best solution.... Thanks for sharing everyone, i always find it very interesting to read other's stories....
Thank you for your response. It's good to know there are others out there like me!
I have had a barium meal test and a endoscopy and nothing can be found - yet I am in constant pain and bloated - this has been going on for over a year and it has taken ages for me to get these tests. I have given up with getting tested as it is apparantly IBS cause by some intolerance and am suggested to avoid wheat, dairy, caffeine and alcohol, and perhaps gluten as they don't know what it is. What am I meant to eat!! I exercise 4 times a week, walk everywhere and have a very healthy diet, so I'm not sure what else I can do now. I am reading packets as much as I can, but I don't eat that much wheat etc anyway. I am having a colonic irrigation and taking very strong prebiotics (but I think these have wheat in them!!!) this week as the doctor ordered, apparantly it can help. I really feel for people with food allergies, as mine is only an intolerance I can't imagine how it would be to be in danger of a serious reaction. Any tips on how to cope with this dramatic lifestyle change would be greatly appreciated!
Hi Anna, I haven't had quite the extent of professional help as you have but here's what has worked for me 
No wheat... watch out for sauces and soups, etc... hidden large quantities of flour are found in these.
Lots of fruits and veggies, steamed or raw.
Don't eat after 7 pm or so in the evening.
I like to hear that you are walking and exercising, this is usually the best cure !!!
Don't forget you do need grains, I like wheat free bread and pasta, but not so much white rice especially as it is very starchy.
I find (not that I'm proud of it... ) that moderate quantities of alcohol seem to help me feel 'cleansed'.
Coffee I do have a porblem with, very rarely drink it.
Try natural Balkan style yogourt if you can handle it (no sugar, maybe a bit of honey)... and steer clear of pop, (soda), iced tea and other sweetened drinks.
I like to drink calcium enriched orange juice... its filling and great if you aren't drinking milk. hope this helps... let me know if you hear any other great tricks!
Rebecca
No wheat... watch out for sauces and soups, etc... hidden large quantities of flour are found in these.
Lots of fruits and veggies, steamed or raw.
Don't eat after 7 pm or so in the evening.
I like to hear that you are walking and exercising, this is usually the best cure !!!
Don't forget you do need grains, I like wheat free bread and pasta, but not so much white rice especially as it is very starchy.
I find (not that I'm proud of it... ) that moderate quantities of alcohol seem to help me feel 'cleansed'.
Coffee I do have a porblem with, very rarely drink it.
Try natural Balkan style yogourt if you can handle it (no sugar, maybe a bit of honey)... and steer clear of pop, (soda), iced tea and other sweetened drinks.
I like to drink calcium enriched orange juice... its filling and great if you aren't drinking milk. hope this helps... let me know if you hear any other great tricks!
Rebecca
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