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A Miracle?!? - Change In My Reaction To Gluten


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91 replies to this topic

#61 kareng

 
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Posted 03 November 2011 - 05:12 PM

Hey Heidi!

I have an 18 yr old son I had to get on last year for the lack of clarity in his emails. He was team captain of a robotics team and got frustrated when no one knew what he meant & didn't follow his instruction. He now sends he mails in full sentences. Sometimes I don't know what his texts say. Usually they just want money or me to mail him something at college.

There are MDs that are therapists & psychiatrists. Maybe you could go that direction.
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#62 psawyer

 
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Posted 03 November 2011 - 05:17 PM

Does anyone know of other causes of villi damage?

Damage to the villi can also be caused by:
Tropical sprue;
Giardiasis ("beaver fever");
exposure to high levels of radiation;
alcohol abuse.

However, the most common cause by far is celiac disease. The pathologist's examination of the biopsied tissue should identify the cause.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#63 heidi g.

 
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Posted 03 November 2011 - 05:18 PM

Haha it's okay! I like criticism! If i can speak proper English, i should be able to type it too! I would like to go into psychology. That's my field of interest
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#64 heidi g.

 
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Posted 03 November 2011 - 05:20 PM

Hmm that's interesting. I should call my doctor as well and clarify with him what my biopsy exactly showed. All he told me was to try a gluten free diet. Not really a diagnosis o.O
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#65 Skylark

 
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Posted 03 November 2011 - 05:51 PM

Hmm that's interesting. I should call my doctor as well and clarify with him what my biopsy exactly showed. All he told me was to try a gluten free diet. Not really a diagnosis o.O

If you feel better off gluten, the usual thing to get a definitive diagnosis is to repeat the biopsy in a year or two gluten-free. If the atrophy is gone you have strong evidence for seronegative celiac.
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#66 heidi g.

 
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Posted 03 November 2011 - 05:55 PM

Well the thing is the only way i start feeling better is if my diet contains mostly of rice and steamed vegetables. I can't handle alot of other things. But maybe i just need time to heal before i can experiment with more gluten free foods. I have had my eye on gluten free chocolate cake mix i have found at the store.
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#67 IrishHeart

 
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Posted 03 November 2011 - 06:05 PM

I am Just tired of being brought down. I'm just trying to see if it's possible... But i will give my props to Irish heart! I apologize, but i did check out your sources and i can see where your coming from. I guess in all this midst I am trying to just give myself hope that it can go away :( I just feel that everyone is different and has different opinions. I apologize for my horrible grammar and lazy punctuation and sorry for the attitude I have just had such a rough day! Life can be so stressful. Please, if you find anything new, send me the link or source. I apologize


It's okay, Heidi. :)
Life is indeed stressful at times.

Hon, if you are dealing with celiac, it is best for you to accept the diagnosis. It does not "go away", but it goes into remission on a gluten free diet--and that is good news! Please read about it and understand it as best you can, then live a long and healthy life.

Knowledge is power, kiddo! ;)
Best wishes.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#68 IrishHeart

 
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Posted 03 November 2011 - 06:12 PM

Honestly i don't even want to be in school for this i want to be a therapist. My father is a doctor so he just pushes me to do what he loves, and i get so frustrated. erggg sorry for venting



Totally none of my business, but in my opinion, NO ONE should ever do what someone else wants them to do. It will only make you miserable.

Do what you love in life, kiddo! It's the only way to live. :)

You are an enthusiastic young woman. Have a good life!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#69 Jestgar

 
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Posted 03 November 2011 - 06:31 PM

Thank you Heidi. It's so much easier to follow you now. :)
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"But then, in all honesty, if scientists don't play god, who will?"
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#70 kareng

 
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Posted 03 November 2011 - 06:59 PM

Hmm that's interesting. I should call my doctor as well and clarify with him what my biopsy exactly showed. All he told me was to try a gluten free diet. Not really a diagnosis o.O


Sounds like you should get a copy of all your recent blood tests - celiac and other. You should get a copy of your pathology report from your endoscopy. And just for fun, a copy of the procedure report. Call and politely tell them what you need. Do not demand it today. The people who do that job get $1 over minimum wage. You can offer to pick it up and would 2 days from now be good? Or would they mail to you? If they give you any crap or want to charge you $25 for the copies, let me know ( pm me). I have a few tricks.

Actually, did you say your dad was a doc? If they give you nonsense, let him request the copies ( or , even better, one of the docs in his practice that has a different last name.) You will need to fill out a release of info form.
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santa-dance.gif

 

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
“The main reason Santa is so jolly is because he knows where all the bad girls live.”  - George Carlin
 
“One can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.”  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#71 heidi g.

 
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Posted 03 November 2011 - 08:50 PM

I will definitely do that. Is celiac disease an allergy to gluten? Because people can be allergic to strawberries and if you just don't eat them your fine. Wouldn't gluten be like the same thing?
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#72 heidi g.

 
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Posted 03 November 2011 - 09:07 PM

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: http://www.phmiracle...probiotics.aspx I just have a strong feeling that i don't have celiac disease. I just don't get why- Maybe im just too hopeful
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#73 domesticactivist

 
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Posted 03 November 2011 - 09:45 PM

Heidi, I just want to say I'm sorry you got of to a rough start here but am glad that seems to be blowing over. I think aiming for healing leaky gut really is the way to go. If you decide to reintroduce gluten in a few years I'd encourage you to get tested regularly in case you are experiencing continued damage without feeling it.
As for other causes, I'm on my phone so I'm not checking sources but I do think I recall reading that soy can cause it and that there are a couple other rare conditions.
It is worth looking into, since of course if there is another condition you'd want that to be diagnosed. However, the biopsy is considered diagnostic of celiac.

I understand the need to believe you can get out of this diagnosis... I think that's the bargaining stage of grief talking. I do think there is a grieving process with a diagnosis like this. There is always hope for healing completely but I think it can be better to set a goal for feeling good and finding a new way to eat rather than an eventual return to the way you used to be able to eat. Actually, even a goal of eventual total healing will probably set you on that path to a new lifestyle and healthier diet that you may find you don't want to give up once you do feel great!
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#74 Skylark

 
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Posted 03 November 2011 - 10:03 PM

I will definitely do that. Is celiac disease an allergy to gluten? Because people can be allergic to strawberries and if you just don't eat them your fine. Wouldn't gluten be like the same thing?

Absolutely not. It's a completely different immune response than allergy. Celiac disease is an autoimmune condition that is triggered by eating gluten. Get off gluten, and the autoimmunity resolves. It's the only autoimmune condition with a clear external trigger so it's being studied very carefully in the hope that it will give clues to other autoimmmune disorders. The villous atrophy is caused by T-lymphocytes that have been directed to attack the intestinal mucosa. Autoimmunity is not limited to the intestine; it can be in any tissue with transglutaminase. Some people get neurological autoimmunity resulting in peripheral neuropathy or ataxia, and some get skin autoimmunity, resulting in dermatitis herpetiformis.

A round of diarrhea from eating gluten is no fun, but the lingering neurological damage is what scares us all so badly. Your gut can heal easily. If you keep eating gluten and get nervous system problems, that's much harder to fix.
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#75 ravenwoodglass

 
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Posted 04 November 2011 - 02:58 AM

I understand. See what i am confused about though is my antibodies were normal. I was reading earlier that several things can cause villi damage. Candida, leaky gut, and the gluten intolerance. Now, i read this on a few internet sites so i don't know if that's exactly true. Does anyone know of other causes of villi damage?


False negatives on blood tests are not uncommon especially if they only do a partial panel or have not checked to see if you are IGA deficient. There are quite a few of us who suffered for years and years and were repeatedly blood test negative and told we had IBS. Your lucky in that you were able to get an endo even with a negative blood test result. You can be celiac, and even close to death like I was, and still have negative blood tests. A strict trial of the diet is recommended even if both biopsy and blood are negative because testing misses so many of us. In the end the diet followed strictly will often give the answer.
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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)




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