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How Strict Does A Gluten Free Diet Need To Be?


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8 replies to this topic

#1 Courtney101

 
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Posted 06 November 2010 - 05:15 PM

Since my blood tests for celiac were negative, the doctor told me I do not have celiac disease but may just have a wheat or gluten intolerance. She said that I should try cutting back on wheat a bit and see if that helps my symptoms.

My question is, will just "cutting back" be enough to give an improvement, or do I need to cut it out totally. My Doc says some people can tolerate small amounts, so it shouldn't be necessary to cut it out all together - she only recommends that to people who test positive to celiac.

For those of you who are gluten intolerant but not celiacs, have you found a difference from just cutting back a bit?
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#2 Dixiebell

 
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Posted 06 November 2010 - 05:51 PM

No, cutting back will not be enough. If you are still ingesting gluten, and if it is causing your problems, you will continue to have problems. If you have a wheat or gluten intolerance you should be just as strict as if you were diagnosed celiac. Those tests have a high false negative rate.
What you could do is eat gluten free for three months and then try gluten foods again and see if you have any reactions.
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#3 Coinkey

 
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Posted 06 November 2010 - 06:52 PM

When I was figuring out my own gluten intolerance I found that cutting out obvious gluten was enough to see improvements in my symptoms but they didn't clear completely. Once I got some advice from here and other bits and pieces on the internet- I completely stopped all gluten for a month and saw a lot of improvement. Last month I started to see how much I could have without a reaction. I found that I could have a single kitkat mini bite with a slight cramp and nothing else. So the next week I tried two of them (they are about half a cm cubed once you eat the chocolate off it). That caused the usual problems. So, I don't have to worry too much about cross contamination but it's not worth it to eat obvious sources in any amount. So as Dixiebell suggested go completely gluten free for a few months then reintroduce in small amounts to find your threshold.
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Self diagnosed as gluten free as all tests were negative and the doctor was completely useless.

Gluten Free since June 2010
Suspecting soy and milk as of June 2011


#4 burdee

 
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Posted 06 November 2010 - 08:15 PM

When I was figuring out my own gluten intolerance I found that cutting out obvious gluten was enough to see improvements in my symptoms but they didn't clear completely. Once I got some advice from here and other bits and pieces on the internet- I completely stopped all gluten for a month and saw a lot of improvement. Last month I started to see how much I could have without a reaction. I found that I could have a single kitkat mini bite with a slight cramp and nothing else. So the next week I tried two of them (they are about half a cm cubed once you eat the chocolate off it). That caused the usual problems. So, I don't have to worry too much about cross contamination but it's not worth it to eat obvious sources in any amount. So as Dixiebell suggested go completely gluten free for a few months then reintroduce in small amounts to find your threshold.


Just because you don't react with obvious symptoms to small amounts of gluten does NOT mean you 'got away with' eating that. You could develop any number of autoimmune conditions which are related to gluten intolerance (like RA, MS, thyroid problems, sjogren's, lupus, etc., etc.). Of course your doc won't tell you those are related to gluten consumption, but you will get symptoms of those conditions if you continue to eat less than your 'threshhold' amounts of gluten. If you obviously react to gluten at large amounts, you will still react to smaller amounts, but you may not recognize your symptoms as gluten related.
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#5 Courtney101

 
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Posted 06 November 2010 - 09:01 PM

Just because you don't react with obvious symptoms to small amounts of gluten does NOT mean you 'got away with' eating that. You could develop any number of autoimmune conditions which are related to gluten intolerance (like RA, MS, thyroid problems, sjogren's, lupus, etc., etc.). Of course your doc won't tell you those are related to gluten consumption, but you will get symptoms of those conditions if you continue to eat less than your 'threshhold' amounts of gluten. If you obviously react to gluten at large amounts, you will still react to smaller amounts, but you may not recognize your symptoms as gluten related.



thanks for the replies everyone :)

I was under the impression that if you have celiac disease, gluten damages the villi of the intestine, but if you are non-celiac gluten intolerant, you don't actually get the physical damage to your intestines, it just makes you feel unwell. Likewise, if you are celiac, then eating even small amounts of gluten WILL cause damage (and can lead to other autoimmune diseases like you mentioned), but if you don't have celiac disease, you don't have an autoimmune disorder only a food intolerance, so how can eating gluten lead to the other illnesses?

Sorry if that makes no sense, it's hard to explain what I mean. Am I wrong?

I'm so confused ><
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#6 Dixiebell

 
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Posted 07 November 2010 - 04:57 AM

Lots of people have all the symptoms of celiac but test negative for it. The tests are not 100%. They have a high false negative rate. These people eat gluten-free and their symptoms resolve.
Gluten can also damage other organs (brain, skin, bladder, liver, nerves, etc.) not just the intestine.
  • 1
Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#7 Kay DH

 
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Posted 07 November 2010 - 05:55 AM

My celiac panel blood tests were negative in 2008 (minor GI problems) and this January. I had the endoscopy and 1 biopsy in May, and it was negative. The tests were flawed for various reasons, but I was still left with not knowing what I have. I do have the HLA-DQ8 gene, like about 12% of the population. It would be good for you to go completely gluten-free to see what effects that has on you. I am more sensitive to gluten now than when I ate the offending complex molecule. I am also healthier overall. If you have celiac or gluten sensitivity, then the best test is how you feel after going gluten-free.
I got the flu a year ago, and a couple of weeks later started the GI, joint, mood, lethargy, and muscle ache symptoms. I went gluten-free, actually gluten-lite a few weeks later because I read that can help joint inflammation. Amazingly, my GI problems resolved in a few days, the brain fog in a week, and the joint problem subsided after a couple of months. It wasn't until I went completely gluten-free in January that my joint, GI, and rashes began to disappear. I sometimes wonder if doctors had ever tested the rashes I had for a few decades for DH, and I went gluten-free, if my thyroid and other problems might not have happened. :)
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#8 bincongo

 
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Posted 08 November 2010 - 11:06 AM

thanks for the replies everyone :)

I was under the impression that if you have celiac disease, gluten damages the villi of the intestine, but if you are non-celiac gluten intolerant, you don't actually get the physical damage to your intestines, it just makes you feel unwell. Likewise, if you are celiac, then eating even small amounts of gluten WILL cause damage (and can lead to other autoimmune diseases like you mentioned), but if you don't have celiac disease, you don't have an autoimmune disorder only a food intolerance, so how can eating gluten lead to the other illnesses?

Sorry if that makes no sense, it's hard to explain what I mean. Am I wrong?

I'm so confused ><

_____________________________
I believe you are correct. The blood tests for antibodies though can be incorrect. If you wanted to know if you had a gene for Celiac than you would also know if you could ever have a chance of developing it. I would recommend gene testing if anyone in your family has Celiac or other autoimmune diseases. I know gene testing isn't fool proof either but it is still pretty good. I know many people on this site say just go gluten free and be done with it. Well for me being completely gluten free is major change in someones life and I wouldn't do it unless I had too. I have too because I am a diagnosed Celiac but if I were just gluten intolerant I would eat based on my symptoms. But that is just my opinion and not shared by all.
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Dx Celiac July 2010 by Endoscopy biopsy- had Endoscopy for another reason, not for possible Celiac
Lactose intolerant discovered August 2010
Hypothyroid Dx 2009. Sleep Apnea 2005

#9 anabananakins

 
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Posted 08 November 2010 - 06:28 PM

Since my blood tests for celiac were negative, the doctor told me I do not have celiac disease but may just have a wheat or gluten intolerance. She said that I should try cutting back on wheat a bit and see if that helps my symptoms.

My question is, will just "cutting back" be enough to give an improvement, or do I need to cut it out totally. My Doc says some people can tolerate small amounts, so it shouldn't be necessary to cut it out all together - she only recommends that to people who test positive to celiac.

For those of you who are gluten intolerant but not celiacs, have you found a difference from just cutting back a bit?


I'm gluten intolerant; tested negative for celiac and don't have the genes. Seriously, try going entirely gluten free. I probably wouldn't have but for the encouragement to do so that I got here to do it thoroughly and properly, and omg did it change my life! So many random, bizarre symptoms totally resolved. I will eat like I have celiac disease for the rest of my life, no question. I could never go back to feeling like that and getting glutened is awful now. Plus, I think psychologically it's easier being all or nothing about it.

The first time I got glutened was via frying oil. It was maybe 3 weeks into being gluten free. My fries were cooked in the same oil as a breaded product. I knew this in advance but thought I'd be fine as I don't have celiac disease and I made sure not to eat any random crumbs, just the fries. Ha! I was so sick.

I have a friend with celiac disease and I'm actually a lot more sensitive than she is. About the damage it does - I really don't know. But I do know that I get bad neuro symptoms if I eat gluten (mostly balance related) and they've resolved on a gluten free diet. That fits with research findings. Whether I test positive or not, I'm not going to risk doing more neuro damage because that scares me way more than any short term satisfaction I'd get from eating something gluten-y.
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