Jump to content
  • 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

95% Gluten Free Any Good?


UnhappyCoeliac

Recommended Posts

UnhappyCoeliac Enthusiast

I have been trying to be gluten free and have been doing ok

11 days now which is my longest.

Today I had hot chips....they probably were cross contaminated i didn't even ask....basically I had been up for 35hrs without any sleep and starving and I thought basically stuff it im getting some chips.

Ironically 4 days ago I also had a slip up where I was told hot chips were gluten free but I dont believe they were.

As well as milk chocolate eggs, use to be gluten free... assumed they still were but they are not cross contamination BS or something

So 3 stuff ups in 11 days, and this is the only time since being diagnosed (one year) that I have even tryed to be gluten free. I feel like I am getting nowhere and I might as well go back to my favourite foods because I am getting gluten accidentally anyway, are these stuff ups complete tearing down any small progress I night have made>


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Well, unfortunately, 95% gluten-free doesn't quite do it. Neither does 99%. You must maintain a completely gluten-free diet. That's 100% gluten-free, and 100% of the time. Your small intestine is damaged every time you slip up, whether an intentional glutening or not.

However, only you can make the resolve to remain gluten-free. It can be as easy or as difficult as you make it.

It is so very worth it, and it really isn't difficult when you get right down to it. So the question you need to ask yourself, is how healthy do you want to be? Not just in terms of how you feel now, but a few decades from now. Like so many diseases, catching celiac disease early, is key to avoiding the more serious health problems. If you are fortunate enough not to have done years of damage, take advantage of that fact, and do yourself a favor for the rest of your life, which money cannot buy.

It's up to you...

Hummingbird4 Explorer

The best suggestion I have is to keep some gluten-free food with you at all times. Keep some trail mix or a gluten-free energy bar in your bag or car in case you're away from home and feeling hungry. It's hard to keep your resolve when you're hungry and there's nothing around to eat but gluteny foods. Preparation is key.

Jenny (AZ via TX) Enthusiast

You really need to be 100% gluten free. I know it's hard in the beginning, but it's getting easier. At least I can go to the grocery store without freaking out. If I'm going out for a while, I try to carry something with me like cashews or a banana or chocolate.

Every little bit of gluten is going to damage your small intestines. Then that leaves you open to so many other things. For me, one auto-immune disease is enough. I don't want another.

It's been almost a year for me. Most days are really great and I don't miss the gluten that much. I still have some days, very few, where I would really like a gluteny thing. Then it passes. I have cheated on every diet I've ever been on except this. For me there is no choice. I simply cannot have gluten. You can do this!

Gentleheart Enthusiast

NOPE. 95% isn't any good. :)

I have learned that you can't just go gluten free with no effort. It takes a reasonable amount of planning ahead. If you don't plan ahead, you get yourself in situations where you are starving and vulnerable to slipping. You just have to decide if you are serious about all of this or not. 99% isn't any good either. So make your decision one way or another and go for it! You can't sit on the fence with gluten intolerance.

LuvMoosic4life Collaborator

all this advice is really good. I would definitly keep snacks you KNOW are gluten-free handy wherever you go. Also, I'm not sure what your diet is like, but it is really helpful to eat NON-Processed whole foods. I know the typical diet of the average person today is anything but this, but the more you stick to relying on whole foods over processed, the less likely you will be glutened (of course unless they are CC'd in the preparation process)

I notice that all those processed gluten-free foods really dont make me feel well either...sometimes I almost feel like I have eaten gluten, even if they are 100% gluten-free. I eat nearly all whole foods everyday....maybe a couple times a week I will have a processed snack. It really takes a while to get used to eating this way....I know it's something I gradually had to work myself into...otherwise I would go into binging on junk that I really shouldnt have.

just a suggestion...

good luck. it will get easier

mindwiped Rookie

I agree with all that everyone above has said, but just wanted to add to it. OK, you've slipped, you know it wasn't what you should be doing, and you're making a plan to keep it from happening again (at least I hope so), at this point, don't beat yourself up for slipping. Everyone has the occasional glutening, be it through CC or not checking a label that just changed. Get back on the horse, learn from your slip and move on.


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



Celiac.com Sponsor (A8-M):



Gentleheart Enthusiast
I agree with all that everyone above has said, but just wanted to add to it. OK, you've slipped, you know it wasn't what you should be doing, and you're making a plan to keep it from happening again (at least I hope so), at this point, don't beat yourself up for slipping. Everyone has the occasional glutening, be it through CC or not checking a label that just changed. Get back on the horse, learn from your slip and move on.

I agree totally. When you do slip, just get back up and keep going. However, never allow yourself to have the "it doesn't matter if I slip once in awhile because nobody's perfect" attitude with gluten. Don't PLAN to slip. It has been said that it can take from 3 weeks to even months for your gut to recuperate from one single glutening. So if you slip frequently, you can see how you might never make any real progress at all. Accidental glutenings are going to happen and you can't necessarily control them. So take control of all the rest and PLAN to not eat gluten 100%. You can do this. :)

Tallforagirl Rookie
...Accidental glutenings are going to happen and you can't necessarily control them.

I second this. This is the primary reason why it's important to be in control of your diet 100 per cent of the time when you can control it.

There will be times, for instance in restaurants or at a friends house, when no matter how hard you try to let peoplw know your needs, you are not in ultimate control, and you will get glutened, so in order to minimise the impact of those accidental glutenings on your body, the rest of the time you should aim to conform to the gluten-free diet 100 per cent.

As others have said, being prepared is a good way to stay in control. It's hard not to grab whatever is at hand when you're starving hungry, so you need to make sure you have something at hand that is gluten-free.

Don't beat yourself up about past mistakes though, just learn and move on.

UnhappyCoeliac Enthusiast

first wanting to thank the people for answering as always. The only reason I ask is these accidental gluten are destroying my resolve and eroding my will to comit to a gluten-free lifestyle as I simply keep messing up and going back to square one. Just had another incident now it is very depressing and really getting to me.

Since I have ignore the disease for 6mths plus and now I try and the accident gluten is probably doing as much damage as what I was when I simply ignored it :huh:

Bit of a rant because im tired pissed of and glutened but meh tomorrow we are back to day one... the fourth day one of quest to remain gluten-free

bread butter, fruit, and meal replacement that's gluten free is all that's on the menu this way i cant fail but have to go hungry :(

prop to riceguy notice you in a few of my threads being helpful

JNBunnie1 Community Regular
bread butter, fruit, and meal replacement that's gluten free is all that's on the menu this way i cant fail but have to go hungry :(

You know what else is gluten free?

chicken

beef

turkey

rice

avocado

fish

celery

carrots

lettuce

peas

corn

cheese

milk

broccoli

green beans

kidney beans

squash

potatos

sweet potatos

loxleynew Apprentice
first wanting to thank the people for answering as always. The only reason I ask is these accidental gluten are destroying my resolve and eroding my will to comit to a gluten-free lifestyle as I simply keep messing up and going back to square one. Just had another incident now it is very depressing and really getting to me.

Since I have ignore the disease for 6mths plus and now I try and the accident gluten is probably doing as much damage as what I was when I simply ignored it :huh:

Bit of a rant because im tired pissed of and glutened but meh tomorrow we are back to day one... the fourth day one of quest to remain gluten-free

bread butter, fruit, and meal replacement that's gluten free is all that's on the menu this way i cant fail but have to go hungry :(

prop to riceguy notice you in a few of my threads being helpful

Look at it this way too. If you do accidentaly gluten yourself you don't jump back to day 1. It's not like you take 2 steps forward and 2 steps backward. It's more like 2 steps forward and 1 step backward. So yes you have to stay 100% gluten free to your best efforts but when you slip up it's not like all the work you did before is for nothing.

Also gluten free is generally more healthy, can always think of it that way ;)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    3. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    5. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.