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Why I Still Eat Bread...


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#61 Pegleg84

 
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Posted 04 October 2012 - 09:24 AM

If you were indeed not eating gluten when you had your biopsy done, and do want to get a definitive answer on whether or not its celiac, you could do a gluten challenge (start eating it again) for a month or so and then get the test redone. But for that you have to be willing to put yourself through a long period of pain and then healing afterward. Because your symptoms are so severe, that's probably not a good idea. I never had a biopsy done because I couldn't stand feeling like crap all the time any longer. I would never put myself through the pain and long road of healing after just to get a confirmed diagnosis.
  • 1

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


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#62 shadowicewolf

 
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Posted 04 October 2012 - 09:32 AM

If you were indeed not eating gluten when you had your biopsy done, and do want to get a definitive answer on whether or not its celiac, you could do a gluten challenge (start eating it again) for a month or so and then get the test redone. But for that you have to be willing to put yourself through a long period of pain and then healing afterward. Because your symptoms are so severe, that's probably not a good idea. I never had a biopsy done because I couldn't stand feeling like crap all the time any longer. I would never put myself through the pain and long road of healing after just to get a confirmed diagnosis.

Ideal i believe is closer to 3-4 months.
  • 0

#63 GFinDC

 
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Posted 04 October 2012 - 10:19 AM

Hi Sandra,

You have a good point about the NCGI and testing. It does seem like there should be some tests that would show damage or something possible. However modern medicine is not there yet. It was only this year that a research project showed that NCGI is a real condition, and not something people were making up. There are no tests for it yet. None, Nada, Zip, Goosegg, zilch. Maybe in 10 years or so they will find some way to test for it.

So you have to figure it out yourself.

The way to do that is to do the gluten-free diet for 6 months. Be very strict and don't cheat or eat anything that might be cross contaminated. It is best to not eat any processed foods. Just stick with whole foods only. Don't eat out at restaraunts.

Then after 6 months try some gluten and see what happens. Your bodies reaction is the only test available right now.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#64 SandraLAVixen

 
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Posted 04 October 2012 - 01:10 PM

Thanks, though I'm not sure how to explain something like this to anyone...

every time I think I have explained that my pain is real to my mom, the next day she says it's all psychological and I have to re-explain it again.

It's so frustrating.

The porridge I eat is made from cottage cheese and boiled turkey meat. I tried semolina porridge once and that hurt. I actually have never eaten oats before in many years, so I have no idea how I would react to that.
  • 0
Wheat and gluten tolerant until Dec 2012...
causing pain afterwards...
Gluten-free Feb to Mar 2012.
Endoscopy, pillcam, biopsies, Celiac profile, NEGATIVE.
Elimination diet isolated to gluten thus far Sep 2012.

#65 GottaSki

 
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Posted 04 October 2012 - 01:23 PM

Thanks, though I'm not sure how to explain something like this to anyone...

every time I think I have explained that my pain is real to my mom, the next day she says it's all psychological and I have to re-explain it again.

You say that you have done the research and are now aware that there are no current medical tests to diagnose Non-Celiac Gluten Intolerance. The only option you have is to eliminate ALL gluten for a period of at least six months to monitor symptom improvement.

Forgive me, but you have been going back and forth about whether your problem is gluten for several months, so perhaps you have confused your mother. Stick to the elimination diet and provide information about NCGI to her if she is open. Ultimately if your health improves gluten-free your mother and others will make the connection and understand the need for you to be gluten-free. Be clear and patient - family and friends often have a hard time understanding how strict a gluten-free diet must be.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#66 mushroom

 
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Posted 04 October 2012 - 01:32 PM

Yes. And to reiterate what GottaSki just said, most people hear "diet" and in their minds it is like a weight loss diet, where you "try" to eat things that will not make you fat, and if you cheat or fail here or there, well you just eat a little less tomorrow.

The gluten free diet is not that kind of diet, and this must be explained. It means that you CANNOT eat ANY of those things, EVER. Today, tomorrow or the next day. And a little bit WILL hurt you. Your mom needs to understand this.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#67 KMMO320

 
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Posted 09 October 2012 - 11:55 AM

Sandra,

Up until this morning, all of my drs told me that gluten was not my problem..well ok I did have 2 tell me it was possibly gluten intolerance but the other 2 told me absolutley it was NOT Gluten.

So I kept eating bread. I kept eating donuts and cake. When people said to me "I thought you couldnt have it" I would just say, I can have whatever I want!

In my head, if it wasn't going to kill me, then I could deal with it. To me, without a "diagnosis" and without people believing that it was gluten, then I would just keep eating it and believe that it was something else.

I also just rationalized, its ok, I will eat this donut and be really sick but it usually passes in about 2-3 hours so I will lay down.

REALLY! Thats what I told myself..eat what you want and then lay down until it passes! Because unlike other people, my symptoms do pass in a few hours but it SUCKS while it is happening!!

Gluten intolerance is a real thing. Its a problem. Doesnt matter if a Dr "diagnoses" you or not, its there.

This morning, my dr finally diagnosed me as Celiac, believing that I am at the very early stages. After researching, she NOW believes that gluten intolerance is the beginning stages of full blown Celiac Disease, so she just cut to the chase and said to start living a gluten-free lifestyle now to head it off...
I don't know if it's true, and I think many many many Drs dont really know...yet. But if you feel better when you DONT eat bread/pasta then DO NOT EAT IT!

I had the reverse happen..I keep gaining weight. uncontrollably, it seems. I gained 30 pounds in a month and a half. I went off glute for 3 weeks and lost 6pounds. I started eating gluten and gained 10 pounds..in TWO WEEKS! its crazy how your body reacts, some people lose...some people gain. its CRAZY!

but I say...please stop eating it. It doesn't love you .
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#68 SandraLAVixen

 
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Posted 09 October 2012 - 02:05 PM

Since my recently rounds of tests are over, I am avoiding gluten. Thanks everyone for helping me through this. :)

But I am still not 100% convinced byself what the problem is. I only tell my mom and my drs that if I eat certain breads/pastas, this happens. And they all say, well your tests are always negative so it means you have no problem.

I also don't want to pin it down to NCGI in case this is still something else, what if its endometriosis or some other abdominal injury I sustained while performing last Christmas (the same time this all suddenly started)?

I feel like I need a bit more time and to do absolutely every test possible to rule anything else out before I stick with NCGI.
  • 0
Wheat and gluten tolerant until Dec 2012...
causing pain afterwards...
Gluten-free Feb to Mar 2012.
Endoscopy, pillcam, biopsies, Celiac profile, NEGATIVE.
Elimination diet isolated to gluten thus far Sep 2012.

#69 ravenwoodglass

 
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Posted 09 October 2012 - 02:10 PM

Since my recently rounds of tests are over, I am avoiding gluten. Thanks everyone for helping me through this. :)

But I am still not 100% convinced byself what the problem is. I only tell my mom and my drs that if I eat certain breads/pastas, this happens. And they all say, well your tests are always negative so it means you have no problem.

I also don't want to pin it down to NCGI in case this is still something else, what if its endometriosis or some other abdominal injury I sustained while performing last Christmas (the same time this all suddenly started)?

I feel like I need a bit more time and to do absolutely every test possible to rule anything else out before I stick with NCGI.


IMHO you would be wise to get yourself strictly gluten free now and if you feel strongly that you may have another issue going on being gluten free is not going to effect the testing for other issues.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#70 mushroom

 
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Posted 09 October 2012 - 02:12 PM

Ah doctors, and their darned tests. If you don't pass them, well then it is not something they can deal with. And certainly not if it can be controlled with diet :blink: Far too many people have been told to continue eating gluten because they do not test as celiac, unfortunately. And if you don't listen to your body, but listen only to the doctors, you may continue to harm yourself. You can imagine any kind of disease you might have, but if your body is telling you it is unhappy eating gluten then the chances are pretty good it's the gluten :)
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#71 shadowicewolf

 
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Posted 09 October 2012 - 02:17 PM

Yeah, doctors tried to tell me that about my gallbladder as well. You have no stones and your blood work is normal. >.>

Wasn't until they ran a more spacific test about 5 months later that it was discovered -_-. They aren't perfect.
  • 0

#72 ravenwoodglass

 
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Posted 09 October 2012 - 02:26 PM

Far too many people have been told to continue eating gluten because they do not test as celiac, unfortunately. And if you don't listen to your body, but listen only to the doctors, you may continue to harm yourself.


Yep. You can see what having false negative tests did for me by my signature. It took over 40 years and a savvy 80 some year old doctor for me to get a diagnosis.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#73 GFinDC

 
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Posted 09 October 2012 - 04:16 PM

Hi Sandra,

Maybe this article will help with the explaining.

Non celiac wheat sensitivity article http://www.nature.co...2012236a.html

You can read the abstract for free, but the full article requires a payment. The abstract tells all you need to know for now I think.

One thing about the gluten-free diet, if you don't take it seriously and stick with it 100%, other people won't take it seriously either. It is not a weight loss diet, it is a medically required diet. You can think of it sort of like a diabetic diet, except more strict in some ways. But the gluten-free diet is the only way for a person with celiac to be healthy.
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#74 LSA55

 
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Posted 09 October 2012 - 08:57 PM

It can be quite expensive, but try to go to the Mayo Clinic. They FIGURED OUT what was wrong with me. None of the doctors down here in LA (yes I understand COMPLETELY)could confirm what was wrong with me. I too went on a gluten free diet for 4 months starting late last year and I saw no improvement AND I had genetic testing done which "proved" that I couldn't possibly have celiac disease(turns out they misread the results). I later find out at the Mayo Clinic that I DO have a half of each gene that causes celiac disease.
  • 0

#75 SandraLAVixen

 
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Posted 09 October 2012 - 09:02 PM

Thanks for the link, I have a question about the article, it says:

"The main histology characteristic of [wheat sensitive] patients was eosinophil infiltration of the duodenal and colon mucosa"

My GI said he didn't find any in the endoscopy biopsy he took back in Feb, also my CBC is quite normal (overall WBC was rather low).

Is there a specific test to check for eosinophil infiltration?
  • 0
Wheat and gluten tolerant until Dec 2012...
causing pain afterwards...
Gluten-free Feb to Mar 2012.
Endoscopy, pillcam, biopsies, Celiac profile, NEGATIVE.
Elimination diet isolated to gluten thus far Sep 2012.




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