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Very Optimistic After 6 Months - But Have A Question


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11 replies to this topic

#1 TGK112

 
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Posted 04 March 2013 - 08:27 PM

I just had my 6 month follow up - with great results. As for blood work - my TIGA was 4 ( normal being 0-3) - my first test it was 19, and my TIGG was a 3 (normal being 0-5) - my first test was 14. My first endoscopy showed moderate to severe damage, and six months later, my endoscopy showed complete healing. My GI was amazed at the recovery, saying that he has never seen such quick healing. I even questioned if the first diagnosis was indeed accurate. He said - considering both the blood work and biopsies, there's no doubt.

 

He said - considering how quickly I have healed - that if I would like - on special occasions "to treat myself to something special" (gluten filled), that it should be okay- as long as I immediately go back and continue on the gluten free diet. What do you all think?

 


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#2 kareng

 
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Posted 04 March 2013 - 08:36 PM

And the experts say " NO!" Perhaps you could forward this info to your doctor who knows nothing about Celiac?
this is just from 3 medical centers, there are more.

http://www.curecelia...guide/treatment

"A lifetime commitment
The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."


http://www.celiacdis...nts/A02-FAQ.htm

"Q: Is it ok if I ingest some gluten if I do not experience any symptoms?

No. The majority of patients with celiac disease experience no symptoms when they ingest gluten, either intentionally or unintentionally. This led to the concept that patients, especially children may grow out of the disease. In addition, patients also consider that it is doing no harm to them. However the ingestion of even small amounts of gluten results in damage to the small intestine--regardless of the presence or absence of symptoms--and puts the patient at risk for resulting complications including malignancies and osteoporosis."


http://bidmc.org/Cen...Diet.aspx#cheat

Can I cheat on my gluten-free diet?
Unfortunately, the answer to this question is no. Even when you are sticking to a gluten-free diet, it is impossible to eat gluten-free 100% of the time. This is because there is always some level of contamination of foods, whether it is when the food is processed, when dining out, or in your own kitchen at home. Intentional or unintentional ingestion of gluten will prevent your villi from healing well. Therefore, it is very important to follow the gluten-free diet as carefully as you can to benefit from it.
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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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#3 GFinDC

 
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Posted 04 March 2013 - 10:45 PM

Here's another way to think of it.  If you had a cut on your finger and it hurt every time you used it, would you think it was ok if it took 6 months to heal?  And if it did, would you start juggling knives the next day?

 

What I think is your doctor is giving you poor advice.  That's ok, there is plenty of free good advice on this forum! :)


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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

#4 GottaSki

 
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Posted 05 March 2013 - 04:52 AM

I'd like to offer those doctors the option to eat just a little bit of crushed glass -- really it is okay as long as they only do it once in a while for a very special treat ;)


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-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 :)


#5 GF Lover

 
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Posted 05 March 2013 - 05:10 AM

It's so sad that Doctors don't read up to date research regarding Celiac.  It's OUR lives there "guessing about".  Just one more reason to be your own advocate in your health care and do your research.  I think the MD behind some of these doctors name  really means "Mostly Dumb".

 

Colleen 


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HAVE A SUPER SHINY DAY

 

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#6 kittty

 
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Posted 05 March 2013 - 08:37 AM

My doctor said the same thing, but she already admitted that she knew nothing about celiac disease. It's sad isn't it? You'd think they would at least verify the things they say.


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#7 PersianCeliac

 
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Posted 07 March 2013 - 02:22 AM

Seriously how do these people become doctors !! Where do they get their certificates from exactly stupid university ??!
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#8 frieze

 
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Posted 07 March 2013 - 03:42 AM

I'd like to offer those doctors the option to eat just a little bit of crushed glass -- really it is okay as long as they only do it once in a while for a very special treat ;)

Actually, if the glass is realleeeyyy fine, it would probably be safer.....


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#9 GottaSki

 
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Posted 07 March 2013 - 06:55 AM

Actually, if the glass is realleeeyyy fine, it would probably be safer.....

 

 

Yes, I would rather eat sand than gluten ;)


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-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 :)


#10 gatita

 
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Posted 07 March 2013 - 01:53 PM

I am so surprised a doctor would say that!!

 

Makes me appreciate my own doc who has made it crystal clear, no more gluten. End of story.


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Diagnosed with wheat hates me 4/13


#11 TGK112

 
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Posted 07 March 2013 - 05:53 PM

Thanks for all the responses. The doctor tried explaining - that prior to being gluten free, I was constantly inflaming my intestine - something like not letting a sore heal by constantly hitting it. Now that the intestine is healed, he said, even if it does get inflamed on rare occasion, by sticking to my apparently successful gluten free diet, it should heal very quickly.

 

It seemed to make sense at the time - but now that I've seen these comments - I'm thinking NO WAY!


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#12 kareng

 
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Posted 07 March 2013 - 06:00 PM

Thanks for all the responses. The doctor tried explaining - that prior to being gluten free, I was constantly inflaming my intestine - something like not letting a sore heal by constantly hitting it. Now that the intestine is healed, he said, even if it does get inflamed on rare occasion, by sticking to my apparently successful gluten free diet, it should heal very quickly.

 

It seemed to make sense at the time - but now that I've seen these comments - I'm thinking NO WAY!

 

 

That is for accidental glutenings.  Not on purpose ones!


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Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
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