Doctor Says "You're Not Alergic, But Don't Eat Gluten..."

SunnyLu3
SunnyLu3 Posts: 41
in Food and Nutrition
So I'm just kind of confused and wondering what opinions or information people have on this. One of my doctors (a rheumatologist) told me it was a good idea to avoid gluten due to the symptoms I have AFTER my celiac test came back *negative*. The nurse told me that meant I wasn't even allergic to wheat or gluten.

I followed the advice to see if it would make me feel better. It wasn't a miracle, but after an initial first 4 days of terrible, I felt a little better, but the weird thing is not only did I drop 8 lbs the first two weeks but continued to lose weight at a healthy, steady rate without really trying after that. This is weird for me because previously I'd had no success despite efforts that would cause most people to lose.

Even though weight loss wasn't my primary concern, I am overweight and do need to lose for my health. I am wondering why in the world, if I'm not allergic to gluten, does taking it out of my diet feel right?

I am asking because I'm not sure how to defend this decision to others. I don't know what to say at all, besides that my doctor said to do it and it seems to help. I know I don't have to defend my dietary choices to others I just wish I knew more about why it effects me the way it does. If I don't have an allergy, why do I feel better without it? Why can I suddenly lose weight when I couldn't before?

Thanks for anyone who can help out :)
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Replies

  • knittnponder
    knittnponder Posts: 1,954 Member
    IMO, blood tests are not the end all/be all of determining if you've got an issue, especially with something like gluten. I don't have an "official" gluten allergy but I am definitely intolerant. I get very achy, migraines, so, so tired and extremely emotional. My kids are the same way but when we steer clear, we're fine.

    I have a friend who is so sensitive that if her husband eats something with gluten in it and kisses her she is extremely sick for days afterward. She had blood tests but they all came back negative. Her doctor told her that regardless of what the tests showed, clearly she is unable to tolerate gluten and to avoid it. She avoids gluten and feels good, she eats it, she's sick.

    I would suggest if you realize you're feeling better without the gluten, stay away from it for a few weeks at least. Then have a gluten filled day and see how you feel afterward. If you suddenly feel like crap or have a return of your symptoms then I think it's pretty clear.

    I know the general consensus here is that gluten free is the current fad but for some of us we really can't handle it. I would happily eat gluten again if it didn't make me feel so horrible and I wrestled with giving it up for a long time.
  • NoirDancer
    NoirDancer Posts: 62
    You may not be allergic, but you may have a sensitivity so for the sake of justification just say that you're sensitive to the negative effects of gluten.
  • neandermagnon
    neandermagnon Posts: 7,436 Member
    I know the general consensus here is that gluten free is the current fad but for some of us we really can't handle it. I would happily eat gluten again if it didn't make me feel so horrible and I wrestled with giving it up for a long time.

    that isn't what most people say here. Most people here would advise someone who has an actual medical condition that's made worse or caused by gluten to avoid gluten, or if gluten makes them feel ill, even if it's not from a diagnosed medical condition to still avoid it, because it's a bad idea to eat foods that are obviously making you ill.

    the fad is people who don't have any such condition avoiding it because someone told them it was a "bad food" and that it makes everyone ill. There are a lot of people who don't have any symptoms at all from eating gluten, whose bodies cope with it just fine, who are avoiding it either because they fear some imaginary (for them) health problems from it or because they believe it to be the sole cause of their obesity. Even when some of them lose weight just by giving up gluten, it's because they are now eating fewer calories, which they could have achieved without giving up gluten. It's these people who the comments about gluten free being a fad is aimed at. Gluten allergy, intolerance, celiacs, etc have all been known about for decades, but it's only recently that people with no issues at all with gluten are being convinced to give it up for no reason. Telling these people that they can eat gluten and shouldn't worry about it =/= telling people that there's no such thing as gluten allergy/intolerance/etc.

    OP: if gluten is making you ill, don't eat it. As has been said in the thread already, the blood tests for things like allergies don't correctly diagnose in all cases, i.e. just because the blood test says you're not allergic of intolerant, that doesn't mean you're not allergic or intolerant. Your doctor knows that, your nurse doesn't (nurses are not qualified to diagnose conditions or prescribe treatment) so avoid gluten. Any comments about avoiding gluten being a fad are not aimed at you.
  • iamspdd
    iamspdd Posts: 134 Member
    "It hurts when I do this," I said to my doctor.

    His reply, "Well, then don't do that."
  • pitchf0rk
    pitchf0rk Posts: 34 Member
    For my thesis I did a case study together with Schaer (the gluten free brand). I studied business administration, not medicine or similair, so I am not sure if I use the right terms and everything correctly. But what I learned from that is:

    There are different people who don't eat gluten for different reasons:
    - Celiac disease
    - Gluten intolerance/sensitivity
    - lifestyle/diet reasons

    Celiac disease can be tested. And doctor's know why celiac people cannot eat gluten. (they explained me, but in German and I don't want to repeat it in English - but I think if you're really interested you can look it up somewhere)

    There are also some intolerances that can be tested.

    But there are even more people that for whatever reason have bad reactions to gluten and the doctor's don't really understand why. But as mentioned in the posts before: if you're body shows bad reactions to something, don't eat it!

    And there is the lifestyle/diet/weight loss people. This is total nonsense. I asked several times if a gluten free nutrition has some health benefits, the specialists from the company (who obviously want to sell their products) always neglected.
    Of course you would lose weight if you don't eat gluten as you will most probably lower your carb intake (pasta, bread, cookies etc). BUT if you start substituting the real products by the gluten free ones, you will even start to gain weight and those products are not natural at all. This food is processed even more as the gluten needs to be removed from the grain. Gluten is what makes a dough sticky. So if you remove the gluten, you'll need to add other things. Additionally the food doesn't taste the same. And as we all know fat is a flavor enhancer. So what do a lot of companies do: they add more fat so the food tastes better. And as the company had so much work to create those foods, the price is also much more expensive.

    So my advice to you: If you feel better without eating gluten, please continue. You don't want to harm your body.

    My advice to all the lifestyle people: Don't buy gluten free pasta etc: They're more expensive, over processed, contain more fat and are not healthier than normal pasta.
  • Whambam087
    Whambam087 Posts: 170
    IMO, blood tests are not the end all/be all of determining if you've got an issue, especially with something like gluten. I don't have an "official" gluten allergy but I am definitely intolerant. I get very achy, migraines, so, so tired and extremely emotional. My kids are the same way but when we steer clear, we're fine.

    I have a friend who is so sensitive that if her husband eats something with gluten in it and kisses her she is extremely sick for days afterward. She had blood tests but they all came back negative. Her doctor told her that regardless of what the tests showed, clearly she is unable to tolerate gluten and to avoid it. She avoids gluten and feels good, she eats it, she's sick.

    I would suggest if you realize you're feeling better without the gluten, stay away from it for a few weeks at least. Then have a gluten filled day and see how you feel afterward. If you suddenly feel like crap or have a return of your symptoms then I think it's pretty clear.

    I know the general consensus here is that gluten free is the current fad but for some of us we really can't handle it. I would happily eat gluten again if it didn't make me feel so horrible and I wrestled with giving it up for a long time.
    I agree the blood tests do not always come out positive when you have a sensitivity. If you feel much better without it I would say that's proof right there that you're better off not eating it
  • fattybumclaire
    fattybumclaire Posts: 91 Member
    My doctor said the same to me - blood tests came back negative but I (and my mum, sister and daughter) get very obvious and debilitating symptoms with even a small amount of gluten. His response was simply 'don't eat it anymore'. There are many people on mfp that eat gluten free for this reason and we are all happy to share recipes and meal ideas. Befriend a few of them and ask for help. I would recommend avoiding processed gluten free food as it is very easy to gain weight - a regular slice of bread has at about half the calories of a gluten free equivalent!!!

    The main difference between coeliac and a sensitivity is the longterm effects on the body, if a person with coeliac eats any gluten it damages the vilia in their stomach, stops nutrient absorbtion and can lead to miscarriages, cancer, fertility problems etc. With a gluten sensitivity the symptoms are more short term, once you have stopped eating gluten your body repairs itself (it takes a while tho). However, if you continue to eat gluten you will experience problems associated with inability to absorb nutrients such as low calcium, iron etc.

    Either way - if you experience symptoms from eating gluten - the best thing for your health is to stop eating it. The blood test is irrelevant.

    Good luck.
  • strawmama
    strawmama Posts: 623 Member
    My doctor said the same to me after testing negative for Celiac. I had been having severe heartburn and every other gastrointestinal issues known to man. I was always having headaches and migraines on a weekly basis. I just felt like crap. So, I decided since I needed to lose weight that I would again try a low-carb approach...which is gluten free as well. I feel like a million bucks compared to before. The answer was clear for me. Gluten allergy? No. Gluten sensitivity? Very much so.
  • Jett_05
    Jett_05 Posts: 95 Member
    According NFCA: an estimated 1out of 133 americans have Celiac disease.

    6 times that amount have a non celiac gluten sensitivity.

    That's around 1 in every 23 People in america. Its a legitimate food sensitivity that can indeed cause interesting results when cut out of the diet.
  • Greytfish
    Greytfish Posts: 810
    Even for those without gluten allergy or sensitivity, gluten causes inflammation. If you have a specific inflammatory process going on, you will likely see improvement if you decrease gluten.

    You'll get 5 million responses that say there's not reason to avoid gluten unless you are Celiac. The flaw in this is that gluten is processed into foods that do not naturally contain gluten (it's good marketing, and it's cheap), so you can eat a diet that looks identical to one eaten in the 1920s and your gluten intake is many multiples higher.
  • arrseegee
    arrseegee Posts: 575 Member
    He is a rheumatologist not a dietician. Any doctor who advises a restrictive diet like this without cause needs to go brush up on their nutrition skills.

    It annoys me when I see that doctors have said this sort of thing. I have a sister with Celiac Disease and know how hard it is for her to maintain that diet while getting essential nutrients. I have also given nutrition education to trainee doctors and where I come from they get a total of 20 hours of nutrition instruction during all their medical training. Most of them are 18 and don't even bother listening because nutrition is seen as the easy subject in comparison to all the rest of the stuff they have to learn... and knowing the effort they put into learning about nutrition I would never take nutrition advice from a doctor unless I knew they really had done their research.

    Don't forget, doctors are just as susceptible to all fads as any other member of the population, and in my opinion they let that overrule good medical practice in some cases.

    Unless you react to gluten don't go on a gluten-free diet. And if you do have a medical reason not to eat it (even if you don't have Celiac) please get the help of a dietician rather than trying to do it on your own.
  • _Zardoz_
    _Zardoz_ Posts: 3,987 Member
    It's very strange that people have been eating Wheat and Gluten products for thousands of years and only in the past 10 years or so has everyone and there dog suddenly become intolerant.
  • EngineerPrincess
    EngineerPrincess Posts: 306 Member
    It's very strange that people have been eating Wheat and Gluten products for thousands of years and only in the past 10 years or so has everyone and there dog suddenly become intolerant.
    It is interesting, but we are also more aware of medical issues in the past years. We haven't actually been eating wheat in the quantities we do today for thousands of years though. Food was much different even hundreds of years ago. Not too long ago doctors chalked most food sensitivities up to "poor health" and didn't investigate or know as much about the immune system. Also it's only recently that the huge majority of wheat, corn and soy products in the US have been genetically modified, thanks to Monsanto and corn subsidies. Very little research has been done on the long term effects of genetic modification on allergies, because it hasn't been around long enough to complete.

    I break out into a rash and get overheated and restless when I have wheat, so I avoid it too. You don't have to defend your eating habits to anyone. I just say it makes me feel sick and that does it.
  • donohuge
    donohuge Posts: 9
    It's very strange that people have been eating Wheat and Gluten products for thousands of years and only in the past 10 years or so has everyone and there dog suddenly become intolerant.

    Great point. I always tell people to try making their own bread before they cut it out. Most of them come back to me and say that they're fine when they make the bread themselves but not when they buy it...I can't give a causal explanation but it's interesting stuff...unless of course you are a celiac sufferer, in which case it wouldn't help.
  • Greytfish
    Greytfish Posts: 810
    It's very strange that people have been eating Wheat and Gluten products for thousands of years and only in the past 10 years or so has everyone and there dog suddenly become intolerant.

    They did not eat these wheats, and they did not eat this quantity of gluten. Changing the composition of a diet is never without consequence. Sometimes the changes are good, sometimes not so much.
  • Flab2fitfi
    Flab2fitfi Posts: 1,349 Member
    One cause for concern is that if you had a test for coeliacs and it has come back negative and a then Nurse told you the negative result means you are not allergic to gluten. Coeliacs is not a gluten intolerance or allergy but an auto immune issue and having the test will only prove you dont have coeliacs not that you are allergic to wheat or gluten. I' have got coeliacs and if I took an allergy test would probably get a negative reaction. If I had a nurse tell me this I would go back and ask for someone who actually knows what they are talking about.

    I agree that cutting out gluten can sometimes be beneficial to those who have problems with their joints
  • IntegratedBodies
    IntegratedBodies Posts: 10 Member
    Wheat went through genetic modification back in the 50's similarly to what corn is going through now, thank god people are more aware this time around. Issues with things like this won't show up over night and so it takes awhile for it to become an issue in society. I personally don't have celiac but I am definitely gluten intolerant and stay away from it at all cost
  • strawmama
    strawmama Posts: 623 Member
    It's very strange that people have been eating Wheat and Gluten products for thousands of years and only in the past 10 years or so has everyone and there dog suddenly become intolerant.

    Funny you say that...my dog is allergic to wheat. Never would have imagined.
  • Greytfish
    Greytfish Posts: 810
    It's very strange that people have been eating Wheat and Gluten products for thousands of years and only in the past 10 years or so has everyone and there dog suddenly become intolerant.

    Funny you say that...my dog is allergic to wheat. Never would have imagined.

    Feeding vegetables to a carnovore is inefficient at best, and fairly damaging, but profitable.
  • SunofaBeach14
    SunofaBeach14 Posts: 4,932 Member
    I know the general consensus here is that gluten free is the current fad but for some of us we really can't handle it. I would happily eat gluten again if it didn't make me feel so horrible and I wrestled with giving it up for a long time.

    that isn't what most people say here. Most people here would advise someone who has an actual medical condition that's made worse or caused by gluten to avoid gluten, or if gluten makes them feel ill, even if it's not from a diagnosed medical condition to still avoid it, because it's a bad idea to eat foods that are obviously making you ill.

    the fad is people who don't have any such condition avoiding it because someone told them it was a "bad food" and that it makes everyone ill. There are a lot of people who don't have any symptoms at all from eating gluten, whose bodies cope with it just fine, who are avoiding it either because they fear some imaginary (for them) health problems from it or because they believe it to be the sole cause of their obesity. Even when some of them lose weight just by giving up gluten, it's because they are now eating fewer calories, which they could have achieved without giving up gluten. It's these people who the comments about gluten free being a fad is aimed at. Gluten allergy, intolerance, celiacs, etc have all been known about for decades, but it's only recently that people with no issues at all with gluten are being convinced to give it up for no reason. Telling these people that they can eat gluten and shouldn't worry about it =/= telling people that there's no such thing as gluten allergy/intolerance/etc.

    OP: if gluten is making you ill, don't eat it. As has been said in the thread already, the blood tests for things like allergies don't correctly diagnose in all cases, i.e. just because the blood test says you're not allergic of intolerant, that doesn't mean you're not allergic or intolerant. Your doctor knows that, your nurse doesn't (nurses are not qualified to diagnose conditions or prescribe treatment) so avoid gluten. Any comments about avoiding gluten being a fad are not aimed at you.

    ^ This. The advice you received is from a MD and giving it up is helping you. That is absolutely not what many of us who are critical of the anti-gluent bandwagon are talking about. What we are talking about is the numerous homeopaths and chiropractors out there generally advising people to give it up or try giving it up for a while. The proportion of the population who is actually celiac (or otherwise believed to be gluten sensitive) is quite small.

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