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

toddis

I'd concur you don't need to defend your choice. If you feel better, don't eat it, it's not exactly necessary. Just make sure you are getting similar nutrients from other foods.

Gluten does to be the current demon/money maker for many a book/talk show/store item. I personally believe at least some of the hubbub is due to the nocebo effect.

As far as wheat not being similar to what our ancestors ate. Meh. Neither are the carrots/potatoes/tomatoes/etc.

Primeval_Princess

First of course, I'm not a Dr (or pretend to be).

I have RA along with several other autoimmune disorders, including Hashimoto's Thyroiditis. I have and have had several Drs. I truly believe that cutting out gluten or any other food is unnecessary UNLESS there is medical need. While an autoimmune patient may not have an allergy, gluten has been associated with causing issues with SOME autoimmune diseases. The concept is called “molecular mimicry,” and is generally thought of as immune cells being activated by a foreign antigen, see the same antigen in self tissues, and get confused, thereby unintentionally attacking yourself.

I have been in denial of my disease and wanting to make changes for a very long time. I've done much research over the years trying to sort out all the claims and the medical studies associated with my diseases. I played devil's advocate, because frankly cutting food out is a pain in the butt. I have found to date that almost all the studies on both sides of this anti-gluten and pro-gluten studies came to the conclusion that Celiacs and Hashimoto's autoimmune patients should not consume it. The data on RA patients however was a mix.

Perhaps your physicians could direct you to data that supports their theory and you can educate yourself and make a decision that's right for you.

SunnyLu3

OP, in regards to the weight loss and how you felt after removing gluten, how much gluten containing foods were you eating before? What did your diet mainly consist of?

I am not sure how to answer that so forgive me since this is just a long string of food I ate often. I ate a lot of fruit, greek yogurt, whey or plant protein shakes when lifting weights or just not eating much protein-- always factored into daily calorie allowance, nuts (especially almonds), avocados, salads that had croutons and the like, leafy greens and other veggies, juiced veggies occasionally, drank matcha tea, almond milk, ate rice, quinoa, lentils, chia seeds, whole wheat bread, nut butter, whole wheat pasta, some meat like chicken or fish. I am not a big meat fan and even ate vegan for a while at which time I ate a lot of seitan, made almost entirely of wheat gluten. One time I craved seitan as a non-vegan so I was like what-the-hey and made some (before there was any mention of gluten intolerance). I usually didn't eat a lot of sugar unless it came from fruit and sweetened (still do) drinks with stevia. I did however also drink diet cokes so that was kind of a waste. I've stopped that now. I'm not saying my diet was super healthy. I tried, to an extent, and it was stuff I liked.

Basically I was of the mindset that "whole wheat" meant "good for you" so I ate those things a lot. I didn't eat much meat, so I probably filled that void in my tummy with more starch which often meant more wheat.

I felt hungrier when eating wheat. A few days into removing gluten from my diet, both times I began to feel an appetite suppressing effect. I don't get cravings, I just get hungry at reasonable times for reasonable amounts of food, which is pretty sweet since the food I eat is lower in calories. So I get to basically stuff my face and be full all the time. I call that a win. Perhaps that is the reason?

Flab2fitfi

Celiac or Coeliac diseas is NOT an auto-immune disease. It causes an immune response.

Maybe you would like to argue this with Coeliac UK
https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/

ahamm002

Perhaps your physicians could direct you to data that supports their theory and you can educate yourself and make a decision that's right for you.

Unfortunately, physicians have a business to run. The 50 bucks your insurance pays for each follow up office visit isn't enough for any doctor to spend 30 minutes with each patient discussing peer reviewed literature. If you want to go over peer reviewed literature with physicians you'll probably have to either find a concierge physician who doesn't take insurance, or go to medical school.

Nissi51

The truth is usually the best way to go: "doctor said try this, I did, I feel better so I continue". What's wrong with that? If you want additional ammunition to defend your choice there are many studies, articles etc. online around gluten and health, google it and start categorizing your responses to those who inquire

Glad you are feeling better!

willowfae

I was tested for coeliac and it came back negative. However both my GP and consultant agreed that I am clearly intolerant of it and I should cut it out. I have been gluten free since September and I do feel better without it. Not perfect, which suggests there are other issues, but it has made a great start.

laserturkey

I'm not technically allergic to gluten, but I have a couple of chronic conditions that tend to have flares after I've had it, so I avoid it because I feel better when those symptoms are not riled up.

J72FIT

OP, in regards to the weight loss and how you felt after removing gluten, how much gluten containing foods were you eating before? What did your diet mainly consist of?

I am not sure how to answer that so forgive me since this is just a long string of food I ate often. I ate a lot of fruit, greek yogurt, whey or plant protein shakes when lifting weights or just not eating much protein-- always factored into daily calorie allowance, nuts (especially almonds), avocados, salads that had croutons and the like, leafy greens and other veggies, juiced veggies occasionally, drank matcha tea, almond milk, ate rice, quinoa, lentils, chia seeds, whole wheat bread, nut butter, whole wheat pasta, some meat like chicken or fish. I am not a big meat fan and even ate vegan for a while at which time I ate a lot of seitan, made almost entirely of wheat gluten. One time I craved seitan as a non-vegan so I was like what-the-hey and made some (before there was any mention of gluten intolerance). I usually didn't eat a lot of sugar unless it came from fruit and sweetened (still do) drinks with stevia. I did however also drink diet cokes so that was kind of a waste. I've stopped that now. I'm not saying my diet was super healthy. I tried, to an extent, and it was stuff I liked.

Basically I was of the mindset that "whole wheat" meant "good for you" so I ate those things a lot. I didn't eat much meat, so I probably filled that void in my tummy with more starch which often meant more wheat.

I felt hungrier when eating wheat. A few days into removing gluten from my diet, both times I began to feel an appetite suppressing effect. I don't get cravings, I just get hungry at reasonable times for reasonable amounts of food, which is pretty sweet since the food I eat is lower in calories. So I get to basically stuff my face and be full all the time. I call that a win. Perhaps that is the reason?

Perhaps it was not the wheat in and of itself but the overall amount? That said, if you feel good and are getting results more power to you.

I was paleo/primal (whatever that really means) for a few years and felt great after removing bread, pasta etc... (I ate a lot of it too). I stopped maybe 3 - 6 months ago (felt too restricted, bored and got way too hyper sensitive about food choices), started to include bread again (couple of slices a day for sandwiches if I want one or a bagel now and then with butter to go with my eggs) and have felt no ill effects. For me, I think it has a lot to do with the amount. I am in no way eating the same amount I used to, but am getting great pleasure from eating those foods again.

Anyhow, that was my journey. You'll have your own. Do it until it no longer works for you, and when that happens do not be afraid to try other things...

Best of luck!

craftywitch_63

I have several friends that are gluten sensitive but not allergic. I hope I can shed some light on this for you. Sometimes people can be sensitive to certain substances - which means ingesting them or being around the substances causes the person discomfort of some sort. With gluten it's usually bloating and gastric discomfort but this is not a true allergy. In a true allergy, proteins called antigens are released to fight the substance. In many cases, an allergy is a life-threatening situation (such as nut allergies). Your doctor was testing for antigen response with the blood test. What you have is probably Non-Celiac Gluten Sensitivity (NCGS).

Just because you do not have a true "allergy" or Celiac disease, does not mean that you should not avoid gluten. If the gluten causes you distress, avoidance is the best medicine in this case.

It's really no one's business whether you choose to avoid gluten, but if you feel you must tell your friends and acquaintances anything, tell them you have a gluten "sensitivity" and have been instructed by your healthcare provider to avoid gluten. Your friends will accept your explanation. If your acquaintances encourage you to have "just a little taste" - avoid them along with the gluten!!

Here's a website that might help: http://www.celiaccentral.org/non-celiac-gluten-sensitivity/

tulip_in_a_cup

you don't have to be allergic to have an intolerance or a sensitivity

Healthy_4_Life2

Bump for later!

FatFreeFrolicking

Even though you tested negative for Celiac, you can still have a gluten intolerance.

cwsreddy

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

because while you may not be full blown "allergic", pretty much everyone is sensitive to gluten in one way or another.

KaiserNiner

There's an easy reply, especially if you made glue-paste from flour and water at school as a child...

You've seen that stuff dry to a rock-like consistency?

That's tough for the body to break down.

My metabolism has seemed to increase significantly since dropping the gluten.