Jump to content





   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Degrees Of Gluten Intolerance?


  • Please log in to reply

25 replies to this topic

#1 scoutfinch

 
scoutfinch

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 08 April 2005 - 07:27 AM

I have relatively "silent" celiac symptoms - low iron, maybe depression and irritability (who can really tell? :wacko: ) I don't get any immediate "feedback" when I ingest gluten, like so many people who have the terrible GI effects. I asked my gastroenterologist about it - at first he told me to follow a "strict" gluten-free diet, and also told me that he thought oats would be okay. This seemed contradictory to me, and I asked him about it at the next visit. The crux of his response was that I probably didn't need to worry so much about the minute contaminant levels of gluten, since I didn't get the diarrhea and other effects. I said "but isn't it still doing the same damage to my small intestine?", and he said that he didn't believe so. He also said that if I thought I was going to die without a slice of pizza, then to go ahead and have one - it just would probably set my healing back three weeks or so.

Have any of your doctors ever indicated something like this to you? That possibly people with fewer symptoms are somehow damaged less by the same amount of gluten as people who are highly reactive?
  • 0

Celiac.com Sponsor:

#2 lovegrov

 
lovegrov

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,537 posts
 

Posted 08 April 2005 - 07:33 AM

"That possibly people with fewer symptoms are somehow damaged less by the same amount of gluten as people who are highly reactive?"

From what I've read, the problem is that nobody REALLY knows. There's a chance that this is true, just as there's a chance that people who don't react are taking the exact same risk of cancer, other autoimmune conditions, etc. I don't react much but I choose to stay as gluten-free as possible without driving myself absolutely crazy.

richard
  • 0

#3 Rikki Tikki

 
Rikki Tikki

    Tavi

  • Advanced Members
  • PipPipPipPipPipPip
  • 871 posts
 

Posted 08 April 2005 - 07:37 AM

I would have a hard time believing that a small amount of gluten won't be harmful. All that I have learned is there is a lot of silent damage. Have a piece of pizza if I can't live without it? If the thought of cancer and all of the other problems don't scare you, I think that doctor's attitude should.
But then again, it's just my thoughts....
  • 0
Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice

#4 KaitiUSA

 
KaitiUSA

    Be the change you wish to see in the world!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,583 posts
 

Posted 08 April 2005 - 07:39 AM

There are not degrees of celiac...celiacs have to stay away from gluten. I did not get immediate reactions at first but being off of gluten made me more sensitive now I react badly.

Some doctors just really don't get celiac. It will set your healing back and if you keep setting your healing back then what's the use of the diet?

I know people who were silent celiacs with worse damage to their intestines then I had. I think it definitely a big risk to keep cheating because you put yourself 40-100 times more likely to get cancer ,and other serious things.

Ask your doctor if he was a celiac what he would do...I highly doubt he would take his own advice at the risks involved.
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#5 ianm

 
ianm

    Metal God

  • Advanced Members
  • PipPipPipPipPipPip
  • 849 posts
 

Posted 08 April 2005 - 08:30 AM

Since there are so many unknowns the only safe thing to do is avoid gluten. You will get nailed with gluten from time to time no matter how diligent you are. If you keep yourself healthy you will minimize any damage and recover faster from any accidental poisoning. It's really the only thing we can do.
  • 0
If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#6 rmmadden

 
rmmadden

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 218 posts
 

Posted 08 April 2005 - 08:35 AM

I think I was a silent celiac person. For 36-years I ate whatever and whenever I wanted. I had a few small bouts of stomach issues or the big D but nothing too frequent. Then a case of food poisoning hit me last August and everything came to a boil as they say.

I feel that Gluten is harmful to a celiac disease patient no matter what the reactions/symptoms are. Your body doesn't digest it and the immune system suffers from it. Personally I don't see any rationale to cheating on the gluten-free diet when the associated risks are so high. Cancer, etc. is nothing to gamble with. Keep your chin up and stay the straight and narrow is the best thing you can do for yourself (and your family).

Best Of Luck!
Cleveland Bob B)
  • 0
"Dreams Are What The Future Is Made Of"

Endoscopy & Blood Work Positive.....
gluten-free Since December 2004.....
Soy Intolerant August 2007......

#7 scoutfinch

 
scoutfinch

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts
 

Posted 08 April 2005 - 09:01 AM

I guess I'm not really so interested in cheating on my diet as I am in being able to worry less about every little molecule of gluten, whether from a grill that's been used to cook pancakes or from caramel coloring or crumbs in the peanut butter. Sure, I'd love to have a bagel or a warm sourdough baguette, but mainly I just want to be able to not be so hyper-vigilant about everything.
  • 0

#8 KaitiUSA

 
KaitiUSA

    Be the change you wish to see in the world!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,583 posts
 

Posted 08 April 2005 - 09:05 AM

Yes you need to be concerned about getting a separate toaster, peanut butter jar, etc. That can cause damage. If you make pancakes on something just clean it before making something gluten free. It really gets so much easier...it's just a normal thing in life when you get used to it. It's worth it...hang in there
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#9 Wandering Hermit

 
Wandering Hermit

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 120 posts
 

Posted 08 April 2005 - 09:08 AM

I guess I'm not really so interested in cheating on my diet as I am in being able to worry less about every little molecule of gluten, whether from a grill that's been used to cook pancakes or from caramel coloring or crumbs in the peanut butter. Sure, I'd love to have a bagel or a warm sourdough baguette, but mainly I just want to be able to not be so hyper-vigilant about everything.

That is EXACTLY what I am dealing with. The idea that I'm making all this change and sacrifice and spending extra $$, and that I can still get hit and not even know it, and totally waste all this effort. I got my dog's dry dog food all over my hands this AM and just about freaked out. I don't even know if it has gluten, but my mindset now is - if I don't know, then it DOES. I'm sure this will get easier, but right now I am totally paranoid. I just want to wash my hands every 2 minutes, sit in a sterile room and eat fruit.
  • 0

#10 KaitiUSA

 
KaitiUSA

    Be the change you wish to see in the world!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,583 posts
 

Posted 08 April 2005 - 09:13 AM

You do not have to worry about touching gluten unless you have DH or something. You can touch it just make sure you wash your hands good after handling that.
  • 0
Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#11 tarnalberry

 
tarnalberry

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,542 posts
 

Posted 08 April 2005 - 09:48 AM

There are things we can avoid and things we can't.
Crumbs in the peanut butter jar is more than just a molecule of gluten and IS too much to be ingesting. Same thing with most of those other sources of contamination - the grill and the caramel coloring (if not gluten-free) - you get more than just a molecule. But we can avoid those things. The trace particle left on someone's shirt after lunch even if they clean their hands that falls onto our hands, we can't avoid.

I agree, it is enough to induce paranoia at first. But with experience, you learn how to walk the line, without actually finding a sterile room to sit in and eat fruit! ;-) (Though I like the image!)
  • 0
Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#12 skbird

 
skbird

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 973 posts
 

Posted 08 April 2005 - 09:55 AM

I definitely had a freak out about a month or two ago where anything I touched I was afraid of. The powder on balloons, the starch in a store-bought shirt, the soap in the restroom at work... etc. etc. etc. I was worried I'd be paranoid forever. I think it was all just sinking in. I am fine now.

I keep seeing stuff now that I would eat or use a couple of months ago but now wouldn't and think, wow, how was I so not particular at that time or whatever? Well, my awareness is just that much better now and now that I feel more in control of my environment I feel better.

You'll get there. It was a good 3-4 weeks where I was freaking all the time, it seemed. But now I'd totally forgotten I felt that way until I read your post. :)

Stephanie
  • 0
Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11

#13 ianm

 
ianm

    Metal God

  • Advanced Members
  • PipPipPipPipPipPip
  • 849 posts
 

Posted 08 April 2005 - 05:06 PM

If you keep at it you will end up feeling so much better that you will wonder what all the fuss was about. It eventually becomes a habit and you really won't give it much thought. Stick with it because it is worth the effort. I found it wasn't as big of a change as it may appear right now. You really don't sacrifice as much as you think you will need to. Plus I found that my grocery bill went down because I stopped eating processed crap and don't eat nearly as much as I used to.
  • 0
If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#14 celiac3270

 
celiac3270

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,263 posts
 

Posted 08 April 2005 - 05:14 PM

I know what you mean....I'm also a little paranoid about this. Dog food almost always contains gluten, but you'll be okay as long as you wash your hands. If you find you get rashes or itchiness from it, then you should avoid touching it with bare hands--it won't damage your intestines, but you don't want your skin reacting all the time.

It will get easier.
  • 0

#15 gf4life

 
gf4life

    Our family "photo" as drawn by my daughter Hannah

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,634 posts
 

Posted 08 April 2005 - 05:41 PM

ianm,

I agree with everyone here about getting used to this new way of living. The longer you do it, the easier it will seem. I think at first (and occasionally latter on!) we have reason to be paranoid and freak out about gluten! I have been gluten free (for the last time) for about a year and a half, and last month my husband switched from oatmeal everyday to ZOOM! It is 100% wheat! I was freaking out about how careful he needed to be in the kitchen and such. Well at about the same time he also got very lazy with keeping the kitchen uncontaminated and surprise, surprise, all 4 of us on the gluten-free diet got sick. He then switched to grits! Yeah, 100% gluten-free!

I could handle the small amount of contamination in the kitchen from the oats. The kids and I don't eat it, but I don't stress out about the dishes being on the same counter waiting to be cleaned, etc. because the oats themselves are only contaminated with wheat. Enough in there to damage my intestines, but very little left after he eats it to make me sick from just being in the kitchen. He still would use his own pan and cooking spoons, etc. But with the ZOOM, every speck that flew out when he was pouring it, every speck on the spoon that he would set on the counter, every speck that was left in the bowl, that he would then stack with the rest of the dishes, and the list of contamination goes on! It was not only making me mentally stressed out, but I actually got enough gluten to get the DH rash! It takes more than a few particles for that to happen for me! All of the kids and I got our normal gluten reactions and now, more than 2 weeks later I am still suffering the after effects of it. I'm glad he switched to grits. I would like to say that the reason he switched was that he saw how sick it made us, but that is only a tiny part of it. See my husband is a bodybuilder and he loves to eat what the pro's eat, take the supplements they take, workoout the way they do, etc. He has a new DVD that he got at a bodybuilding show last month and he watched it. It follows Ronnie Coleman around for a few days. He saw that Ronnie eats grits with cheese and scrambled eggs every day. So my husband asks me "what are grits?" So I pulled my box of them out of the pantry and he said that if Ronnie eats them and they are gluten-free, then he'll switch to those! It works for me! :D :rolleyes:

Anyhow, as far as what the doctor said about cheating, I don't know for sure if it would cause enough damage to intestines to cause the other health problems, but why risk it. I did have a doctor tell me that it is nearly impossible to keep my kids gluten-free. Now I know that we will occasionaly get contaminated, but I certainly am not going to KNOWINGLY feed gluten to myself or my kids!

And our food bill over the entire year has stayed about the same. We spend more on gluten-free products, but we eat out much less. We used to eat out at least 2 times a week, now it is more like once a month. So the money being saved by eating at home is being spent on gluten-free foods. Some months cost me more because I make large internet orders to stock up (and save on shipping costs), but then I spend less over the next few months. So throughout the year it comes to about the same.

God bless,
Mariann
  • 0
~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: