Gluten free

I eat gluten free (among other restrictions). What's the problem?

I have just found out im Gluten intolerant. My head hurts, including the feeling of pressure in my head when I eat gluten. Once I stopped I felt much better. Now I have to see my doctor about it.

prettyash777 wrote: »

I have just found out im Gluten intolerant. My head hurts, including the feeling of pressure in my head when I eat gluten. Once I stopped I felt much better. Now I have to see my doctor about it.

Just fyi: if you want to be tested for celiac disease you have to continue eating gluten until you are tested by your doctor or the test doesn't work. It will return a false negative if you have already stopped eating gluten. This also affects a diagnosis for Non Celiac Gluten Sensitivity and wheat allergies as celiac can't be reliably ruled out.

Please don't cut out gluten from your diet without consulting your doctor first.

@smolmaus we posted at the same time!

Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.

The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.

I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).

Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.

We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).

MikePfirrman wrote: »

Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.

The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.

I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).

Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.

We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).

I have Celiac disease as well. The medical dx is necessary because Celiac is an auto immune disease. Just being intolerant won't affect you the same as the disease. The disease attacks your small intestine and leads to other organ damage. Celiac disease has caused me to be anemic, vitamin B and D deficient (because the celiac region does not absorb nutrients) it caused me to have all kinds of food allergens because of leaky gut. It attacked my kidneys and my gallbladder, gave me migraines (severe inflammation)... Oh and I've developed peripheral neuropathy. I just turned forty in January- I've always been healthy with the exception of severe "allergies" and anemia. Now everything is off!

You don't need to pay for endoscopy if you don't want to but at bare minimum, go see a Gastroenterologist and ask for all THREE blood tests on Celiac, you MUST eat gluten for 2-3 weeks or your inflammatory markers will go down and you may get a false negative. I've likely had Celiac since my teens. I've been gf for three+ years now but healing is very slow. I just began keto diet and I think that helps... No carbs, grains or sugar which worsens inflammation.

It's worth a few hundred in lab and doctors fees to know if you're just sensitive or have an auto immune disease. Big difference between the two!

MikePfirrman wrote: »

Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.

The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.

I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).

Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.

We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).

The tests for celiac disease show and autoantibodies response. If a celiac is GF, the tests will be perfectly normal because they've stopped the autoimmune response.

The tests for celiac are tissue transglutiminase IgA and IgG, deaminated glia din peptides IgA and IgG, and endomysial antibodies IgA, as well as a total IgA test as a control (1 in 20 celiac are deficient in IgA so all IgA based tests give false negatives).

I was tested in tTG IgA and EMA IgA. After 6 months GF, my EMA IgAa was normal but the tTG IgA was still a bit high. After one year GF, everything was finally normal.

They say for most celiac so, you need to eat the equivalent of 1-2 slices of bread a day for 2-3 months in order to make yourself sick enough to test positive. For some, if they eat more gluten, they can do it a shorter time. The endoscopy just needs a month of gluten to show positives.

Even after all that, a quarter if all celiac so get false negatives on some tests.

The tests are mainly useful to know what degree of GF you need to be. As a celiac, I rarely eat out - it isn't very safe. I can't use others' toasters or even their butter. I remember going to a pig roast where they stuffed the pig ( so I couldn't eat it), and then the salad had croutons, the roasted veggies had Worcestershire sauce on it and the scalloped potatoes had crumbs cooked on it. I ate raw veggies. LOL. Someone without celiac might be able to get by with picking out croutons or risking the stuffed pig. KWIM?

It's also handy in places where meals are served like schools, campuses, hospitals and senior residences. Some places won't make accommodations unless you have a diagnosis.

On the other hand, medical and life insurance can get more expensive after a diagnosis. You might want that in place before you get tested. I can never let my life insurance lapse now because we set it up before my diagnosis. Now, I could never afford to start it again.

nvmomketo wrote: »

MikePfirrman wrote: »

Why do you need to continue to eat gluten, so the tests work? Just curious, I went GF three years ago to support my wife, who was advised to go GF/Dairy free for chronic pain, which helped her greatly.

The ironic thing is if we go out and things get cross contaminated -- happened in Mexico two years ago - they told us they were corn tortillas, turned out they were flour that was deep fried, I'm miserable for days and have a "celiac" rash for a long while before it goes away.

I've been told by a few celiacs I'm likely celiac, just didn't know it. I'm self-employed and to get all this testing, etc can cost you thousands of dollars. Why continue to eat gluten and why do I need it then? I understand if I'm doing testing it will not be accurate but why continue to eat it if I know it's going to make me sick for days? Seems counterintuitive. I actually don't mind being GF. It's actually fairly easy to be honest. Dairy free? That's the painful part and very, very hard to go out avoiding the dairy (my wife's primary allergy).

Not trying to be a smartass, just wondering what the benefits would be. I know I get sick as hell eating gluten and I'm careful to avoid it. Why get diagnosed then? I know that I had other slight symptoms before that I never put together. I suppose the benefit would be knowing for sure but I'm also not sure I'd want to put myself through that.

We go out to eat very little and if we do, and I'm not 100% sure that it's GF, I ask. If I'm still a little weary, I take a gluten digestive enzyme before eating (like I'm worried about Soy Sauce, something like that -- I would never try bread or similar).

The tests for celiac disease show and autoantibodies response. If a celiac is GF, the tests will be perfectly normal because they've stopped the autoimmune response.

The tests for celiac are tissue transglutiminase IgA and IgG, deaminated glia din peptides IgA and IgG, and endomysial antibodies IgA, as well as a total IgA test as a control (1 in 20 celiac are deficient in IgA so all IgA based tests give false negatives).

I was tested in tTG IgA and EMA IgA. After 6 months GF, my EMA IgAa was normal but the tTG IgA was still a bit high. After one year GF, everything was finally normal.

They say for most celiac so, you need to eat the equivalent of 1-2 slices of bread a day for 2-3 months in order to make yourself sick enough to test positive. For some, if they eat more gluten, they can do it a shorter time. The endoscopy just needs a month of gluten to show positives.

Even after all that, a quarter if all celiac so get false negatives on some tests.

The tests are mainly useful to know what degree of GF you need to be. As a celiac, I rarely eat out - it isn't very safe. I can't use others' toasters or even their butter. I remember going to a pig roast where they stuffed the pig ( so I couldn't eat it), and then the salad had croutons, the roasted veggies had Worcestershire sauce on it and the scalloped potatoes had crumbs cooked on it. I ate raw veggies. LOL. Someone without celiac might be able to get by with picking out croutons or risking the stuffed pig. KWIM?

It's also handy in places where meals are served like schools, campuses, hospitals and senior residences. Some places won't make accommodations unless you have a diagnosis.

On the other hand, medical and life insurance can get more expensive after a diagnosis. You might want that in place before you get tested. I can never let my life insurance lapse now because we set it up before my diagnosis. Now, I could never afford to start it again.

Thank you, very useful. I don't think I'm as severe as you. I'm OK as long as it's not eating bread or dough or something like meatballs, sauce, beer, etc. (obvious things).

I'm also very, very concerned about medical insurance and life insurance too. My wife is already labeled with Fibro. We're in our mid 50s and I'm self-employed and don't get any help through subsidies. I'm already paying over 20K a year now on average between premiums/out of pockets for just OK insurance. Don't need that to go up any more!

kommodevaran wrote: »

That's two problems in one - celiac disease, which means you have to stay away from gluten to avoid getting very very ill, and falling for hype, which means you are cutting out a staple of your diet to feel hip and cool and health conscious, and creating all kinds of difficulties for yourself, for no good reason.

There’s also gluten allergy which is different from celiac where it’s an actual allergy, celiac disease is actually a problem with the intentional track

@MikePfirrman that link you posted-I remember it well! I was part of the moderating team there for 8 + years and anytime the enzyme topic was brought up, things would sometimes go downhill quickly. One thing is certain-enzymes do nothing for an autoimmune reaction.
There are many people who choose to just remain gluten free without a diagnosis. Some for insurance reasons like yourself and others simply don’t want to go back on gluten for testing because they feel so much better off of it. The treatment is the same either way. There are potential serious health concerns for Celiacs, which have been covered here already, (anemia, brain fog, peripheral neuropathy, vitamin and mineral deficiencies, edema, depression, anxiety, etc) with the most serious being intestinal lymphoma. FWIW, The last time I saw my gastroenterologist in 2016 I was told they didn’t feel the need for me to have any more follow up endoscopic testing (I was diagnosed in 2005). Celiac is an autoimmune disease, and irregardless of symptom severity, people with it need to be scrupulous about their diet. In other words, you can’t go by how severe your reactions are. I’ve seen people who were incapacitated by their symptoms and a woman who had absolutely none. She was tested only because her sister was diagnosed and she came up positive.
Best of luck with everything!

Thanks, still trying to learn. A lot to think about. TBH, I've been mostly focused on my wife's health for around 5 years. I've largely ignored anything related to my health because since going GF, I've felt pretty good and have seen signs that I might have been more sensitive than I'd like to admit in the past (probably TMI, but things years ago like bloody stools, etc). I'll probably look into it soon. Sorry to ask so many questions on a thread that I didn't start to the OP!! I apologize for that!