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danikali

By danikali
in Coping with Celiac Disease

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danikali Enthusiast
danikali
Posted

Well everyone, my family is finally getting tested for Celiac Disease....well, the people that have symptoms anyway. So, this doctor that they are seeing is supposed to be pretty knowledgable on Celiac. But my Dad told me something interesting that came right from the doctor. He said that eventually, I could cheat once in a while, especially with the help of 'over the counter things' for example, lactose-intolerant pills for people with lactose intolerance. I thought this was really really interesting........because from what I've heard, we are to never ever eat gluten again! What do you guys think? I thought this was a little weird........

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killernj13 Enthusiast
killernj13
Posted

You state the doctor said "eventually" which is possible. They are doing tests for certain medications however who knows when they will be available and what the side effects could be. I would take it myself down the road, if the side effects were not terrible, but if you read some of the posts a lot of people here would just stay gluten free.

As far as cheating now without the aide of medication all opinions are that it is not a good idea.

danikali Enthusiast
danikali
Posted
  • Author

Actually, he said 'eventually when my system gets back to normal.' Sorry I left that out. Are there any of you out there who 'cheat' sometimes, after being gluten-free for a long long time?

VydorScope Proficient
VydorScope
Posted

There is presently testing, human testing, a pill like Lactate, and if that pill is advertised, it could let you cheat. But as the poster above me mention, side effects and effectiveness are unknown still.

I would not use it to cheat, I would use it as prevention when eating out from CC though.

Actually, he said 'eventually when my system gets back to normal.' Sorry I left that out. Are there any of you out there who 'cheat' sometimes, after being gluten-free for a long long time?

THATS different, and I would say you probably could with out symptons, BUT it seems faily well accepted that damage is still being done reguardless of symptoins. So I would say NO. :)

jerseyangel Proficient
jerseyangel
Posted

Recently, my husband's Aunt told me she knows someone with Celiac. She told me the same thing--after 3 or 4 years (I don't know how she arrived at that time frame) I would "be able to eat gluten once in a while and get away with it". I told her that even if a person eats it and has no outward symptoms, they are still doing damage to their intestine. The autoimmune disease is lifelong, as is the reaction. Please, if I don't have it right, someone correct me :)

danikali Enthusiast
danikali
Posted
  • Author

Yeah Patti, I think you're right. For example, a lot of us in the first years of our lives didn't know anything about Celiac because we had no or very small, miniscule, symptoms. But the damage on the inside was still being done. So this doctor is saying, you won't feel bad, but in the meantime, your body starts to get off balance, regardless. So therefore, we should just avoid gluten all together. Plus, I don't know about anyone else, but if I have a little, and see that I'm okay, I start to think, hey maybe I can have a little more, a little more, etc. Until I have to kick myself for 'letting go.'

jerseyangel Proficient
jerseyangel
Posted
Plus, I don't know about anyone else, but if I have a little, and see that I'm okay, I start to think, hey maybe I can have a little more, a little more, etc. Until I have to kick myself for 'letting go.'

:D That's how I always was when I would try to diet! If I did it with gluten, I'd be in some big trouble!

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jenvan Collaborator
jenvan
Posted

Dani--If your doc is talking about gluten intol/Celiac, he is wrong. Lactose intol is different than gluten or casein intol. You should never eat gluten again b/c it will lead to damage. However, if you are lactose intolerant, you may be able to handle dairy again as your villi heal, or you could try lactaid, depending on how bad yours is. Lactose intolerance doesn't damage your system, or produce an immune response, it is GI symptoms caused by an inability to digest lactase, milk sugar.

dlp252 Apprentice
dlp252
Posted
Plus, I don't know about anyone else, but if I have a little, and see that I'm okay, I start to think, hey maybe I can have a little more, a little more, etc. Until I have to kick myself for 'letting go.'

Bingo! And, then it becomes a serious craving, then I have to start all over again with trying to break the habit, lol.

danikali Enthusiast
danikali
Posted
  • Author

Yeah, that's what I thought. Lactose intolerance isn't going to mess up your whole system, right? It's just annoying but not as dangerous as Celiac, right? I don't think that I have a problem with dairy. I'm like 99% sure that I don't, but just a question......can dairy cause severe muscle pains like the ones that I'm having right now? I feel like someone kicked the crap out of me, or I had a strenuous workout or something. (Neither apply). This is how I felt when I was eating gluten. Plus, I've been eating dairy for the past 3 weeks, sporadically, and it hasn't bothered me. It can't be that delayed, right?? (I have another post on here today that is about Balance Bars. I'm pretty sure I got cross contaminated by wheat on the product lines.)

Oh, hahaha and how true is it that you think you can have a little, and eventually, you're back to square one. And of course, not to mention the cravings that will add some control in the situation! What a mess, no thank you!

jenvan Collaborator
jenvan
Posted
It's (lactose intolerance) just annoying but not as dangerous as Celiac, right?
True Dani. If its not a severe case, a little lactaid can make eating dairy not bad at all for lactose intolerant. Huh, muscle pains...I would think they are unlikely caused by dairy. Tried to keep a journal of the food you eat and your symptoms and when they occur?
luvs2eat Collaborator
luvs2eat
Posted

I've found that the longer I'm gluten-free, the more sensitive I've become. I'm reading EVERY label EVERY SINGLE TIME anymore!!

ianm Apprentice
ianm
Posted

Cheating just isn't an option. I don't ever want to be that sick, fat or have my brain fogged up like that ever again.

jkmunchkin Rising Star
jkmunchkin
Posted

If this is the case I'm having one more Entemann's chocolate frosted donut. But unfortunately I think the reality is that we're all gluten-free for life; no cheating :(

mookie03 Contributor
mookie03
Posted

well, i know that everyone's body is different, but ive noticed recently (VERY recently) that my rxns are not as strong as they were. When i first went gluten-free in June, CC would make me REALLY sick- it was like i could smell or think about gluten and have a rxn! This is how i was for the first 6 months of being gluten-free, but i have noticed in the past few weeks my rxns havent been as bad. I was glutened once and was sick but not woefully ill and i think cross contamination the second time but i didnt have a full rxn, just didnt feel 100%. Too soon to tell, but it might be that now my rxns will not be as strong...but as everyone else has said, i really think ingesting gluten does just as much damage regardless of whether i feel it. Just my personal opinion, i will NEVER eat gluten again (purposely).

BTW Dani, congrats on your official diagnosis!! :D

danikali Enthusiast
danikali
Posted
  • Author
True Dani. If its not a severe case, a little lactaid can make eating dairy not bad at all for lactose intolerant. Huh, muscle pains...I would think they are unlikely caused by dairy. Tried to keep a journal of the food you eat and your symptoms and when they occur?

Actually, I have been keeping a diary, a very detailed one actually. And I've been feeling soooooooooooooooo amazing, and making note of it! But then Sunday (when I ate those Balance bars for the first time) things came back and then when I ate them a second day, things came back with a vengence. So I know what my culprit is. But I'm glad to hear that dairy is mainly or pretty much JUST a GI thing, because my GI problems seem to be doing pretty good! (Knock on wood, of course!)

lonewolf Collaborator
lonewolf
Posted
He said that eventually, I could cheat once in a while,

There's a little girl at my school (I'm a PE teacher) who has Celiac. Her mom told me a couple of months ago that her doctor had told her that she was doing so well that it would be okay to cheat sometimes. I was a little surprised, but since I'm not an expert, didn't want to contradict the doctor and act like a "know it all". I saw the little girl getting a school lunch last week with chinese noodles and regular soy sauce and asked if she was supposed to eat that and she just shrugged her shoulders. The kitchen lady said it wasn't our business and I should let it go-the mom had ordered the lunch. Sad to think that a doctor would tell this to a 9 year old.

Rachel--24 Collaborator
Rachel--24
Posted
So, this doctor that they are seeing is supposed to be pretty knowledgable on Celiac.

I'm thinking he can't be all that knowledgeable if he's saying people with Celiac can cheat once in awhile after they heal. Sure you *could* cheat and maybe not feel it....you could do whatever you want really. The fact is that everytime you consume gluten your immune system WILL react and that puts a strain on your body whether you feel it or not. Its an autoimmune disease so I dont think I'd want my body unnecessarily attacking itself just cuz I wanted a slice of pizza.

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted

There is no argument.

The answer is no, no cheating.

That's the end of that.

-Jackie :)

gabby Enthusiast
gabby
Posted

I would find another doctor. If you can't and you must see this guy, ask him what medical school he graduated from, and in what percentile he graduated. If he is anything below the 75th percentile, get another doctor. And if he won't tell you his percentile, then get another doctor.

Trust me, there's a big difference between a doctor who graduated with an A or A+, and a doctor who barely made it, scraping by with a C or C+.

just my two cents

Gabby

mouse Enthusiast
mouse
Posted

The doctor who diagnosed me thought I could cheat after one year of being gluten free. Needless to say I tried it and found out NO you cannot cheat. He knew how to diagnose the disease, but really his knowledge came from the 60's when he took his exam. We had a little discussion about this being an allergy and I said excuse me but I cannot take shots to make this go away, so how does an auto-immune disease become an allergy. He apologized and said I was right that it can't be an allergy. Now he wants to read the book "Dangerous Grains" and I will deliver it to him next week. At least he does not think he is one of the "God" doctors and is willing to listen and learn.

Do NOT cheat, it is not worth it.

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