Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Big Question


danikali

Recommended Posts

danikali Enthusiast

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........


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



killernj13 Enthusiast

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

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

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

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

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
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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jenvan Collaborator

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
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

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
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

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

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

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

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
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
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
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

There is no argument.

The answer is no, no cheating.

That's the end of that.

-Jackie :)

gabby Enthusiast

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

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,187
    • Most Online (within 30 mins)
      7,748

    Jackie49
    Newest Member
    Jackie49
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...