New - Need Help Understanding

[siNdreAd]

Hi all - I'm new to the diet and I was hoping you could help me understand something. I don't quite understand why it's so important that we avoid any tiny traces of gluten. I would think that a tiny bit of gluten would be better for us than a lot of gluten. However,from what I've read on the forums I'm getting the impression that a trace amount of gluten completely erases all our effort as if we just ate a loaf of wheat bread or something. Maybe I don't quite understand the condition, but less gluten is still better for us than a lot of gluten right? I have no desire to eat gluten but it's scary for me to think that if I slip up and and get some gluten in my system that all my work is lost and I'm starting over from ground zero?

Thanks,

Justin

[Mother of Jibril]

I used to think tiny amounts of gluten were no big deal... as long as I wasn't eating any obvious sources of gluten I thought I was fine. However, as my body has healed I really notice when I have a tiny bit. My last glutening (which must have come from cross-contamination) gave me diarrhea and a headache. A lot of people have even worse reactions... terrible fatigue, migraines, vertigo... so it makes sense to be VERY cautious. Some people are fine in a few hours or a few days... sometimes it takes longer to recover

Also, if you celiac disease... where an autoimmune reaction to gluten is destroying your intestines... then your body will react to even the tiniest bit. You might not feel it, but it sets the autoimmune process in motion and that can lead to cancer or other autoimmune disorders. I don't know for sure that I have celiac, but I do have at least two other autoimmune disorders and I do NOT want any more! So... I think extreme caution is a good policy. The more I learn, the more I see the need for it.

Welcome to the group!

[happygirl]

No - you haven't lost all ground! However, gluten sets off the autoimmune reaction, and the goal is to stop the autoimmune reaction (and subsequent damage and/or symptoms) from occurring.

Just do the best you can - you'll find a balance after trial and error.

[debmidge]

The point of avoiding trace amounts of gluten is to stop the body from

making antibodies to the gliaden - and knowingly eating gluten is different

that consuming something which may have trace amounts unknowingly.

For instance, Benefiber proports itself to be gluten free, yet the label will

say that there are so many parts of gluten per million. Ingesting that small

amount - they say - isn't a big deal, but imagine ingesting small amounts of

gluten at each meal and inbetween meals from products such as this, each

day, each week, etc. I would suppose that in some celiacs who are

sensitive (and that's is according to each person's system) they'd have

some kind of silent reaction at least.

I would not advise anyone to tempt the fates on this one.

[sbj]

Hi all - I'm new to the diet and I was hoping you could help me understand something. I don't quite understand why it's so important that we avoid any tiny traces of gluten. I would think that a tiny bit of gluten would be better for us than a lot of gluten. However,from what I've read on the forums I'm getting the impression that a trace amount of gluten completely erases all our effort as if we just ate a loaf of wheat bread or something. Maybe I don't quite understand the condition, but less gluten is still better for us than a lot of gluten right? I have no desire to eat gluten but it's scary for me to think that if I slip up and and get some gluten in my system that all my work is lost and I'm starting over from ground zero?

Thanks,

Justin

It is a bit scary, isn't it Justin? I had similar questions and the answers, unfortunately, aren't cut and dried. In my case I am what is called a silent celiac. I don't get outwardly 'sick' in any respect (no diarrhea, cramping, vomiting, etc.) but I do test positive via bloodwork, had a positive biopsy via endoscopy, and have the genetic capability. I also wondered what's the worry about a crumb - they haven't bothered me in the past? What's the worry about airborne flour? How can I eat off a gluten free menu when the reastaurant must have airborne flour? There seem to be many contradictions when you first learn about this condition.

My best advice? Talk to a nutritionist or dietitian who is familiar with your test results and your symptoms. A lot of your actions will depend on the severity of your symptoms and your ability to obtain regular testing.

My next best advice? - you should do your best to avoid gluten, and you should monitor how you are doing periodically with bloodwork and by watching your symptoms. It might be okay to ingest a bit of gluten by mistake, it might be okay to eat Fritos some of the time even though they may be processed on equipment that also processes wheat. It might be okay to eat out. It's going to depend on your responses (via bloodwork) and your sensitivity.

If you get a little bit of gluten by mistake it won't set you back to the beginning. It won't immediately lead to lymphoma - but you should still avoid gluten. Your immune system may, indeed, react to even the tiniest bit of gluten. It might be difficult to believe, based on your own symptoms, but some people are so sensitive to gluten that one crumb can lead to a week of agonizing sickness. However, this isn't true for everyone. You should not tempt the fates by eating - every day - a food that is processed on equipment that also processes wheat. However, if your system does not react violently it is probably okay for you to very occasionally eat this type of gluten free food. This is per a Kaiser Permanente dietitian commenting on my specific asymptomatic condition. You shouldn't eat a gluten containing cinnamon roll but you might be able to eat a steak dinner out some time. It's gonna depend on your particular reaction and your followup bloodwork.

Every 6 months or so you should have your bloodwork redone. You'll need to work this out with your doctor. At this point you will be able to see how your immune system is reacting to how you've managed your diet. You might find that the tiny bits of gluten you are getting are not enough to show up as positive. If that is the case you could continue with your program as is. Alternatively, you might find that the tiny bit of gluten you are ingesting by mistake (or via Fritos or whatever) is making you positive. In that case you will have to make adjustments.

Best of luck - don't believe everything you read (including my opinion!) - see a doctor, do your own research, evaluate everything. DISCLAIMER: I am NOT suggesting that it is okay to intentionally ingest gluten.

[Tallforagirl]

Hello,

As a fellow newbie, I thought I would add my two cents worth.

My dietician put it in a way that made sense for me, where others had failed. She said that by following the diet strictly , and avoiding cross contamination (crumbs and things) at home and in other situations where you have the most control to do so, this gives you a "margin for error" for when you do inevitably get "glutened" in a situation where you have done everything you can, but it is beyond your control (in a restaurant).

Yes one crumb will set off the reaction, but if you're doing everything you possibly can to be gluten free in your daily life (without being completely paranoid about circumstances beyond your control), then you will be alright.

Everyone gets glutened now and then. It's when you are being careless, and being glutened, even in tiny amounts, every day, is when it is a worry.

I also want to point out that the extent of your reaction does not indicate how much damage is done at the time. If you are asymptomatic, it is all still happening, you just don't get to experience it in full glory

Hope that makes sense, and that it helps.

[siNdreAd]

Hi all - thanks for all the replies! I see what you mean! My main concern is cross contamination or unknowingly eating gluten on a regular basis. I have noticed that I have become more sensitive to gluten after going gluten-free (gluten challenge was a nightmare) so maybe that will be enough of an indicator.

Thanks again, I'm sure I may have a few more questions and maybe in the future I'll be knowledgeable enough to answer some.

take care,

Justin