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seattlecdfriend

What About Remission?

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There is no such thing as remission. If your friend has been diagnosed with celiac disease or gluten sensitivity/intolerance than he/she is always going to cause some damage to the body if gluten is ingested. It may take some time for really obvious symptoms to occur but damage is being done.

Your friend needs to be gluten free for life. No ifs, ands, or buts about it.

Your friend is setting himself/herself up for other autoimmune diseases including cancer and possible neurological problems.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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It is a misconception from years ago that there is "remission". Once a celiac always a celiac.

Some people may not show outward symptoms but the damage is being done to the villi if gluten is ingested.

I think the misconception stems from the lack of outward symptoms - they don't have stomach aches or diarrhea - so it must be better right? But then they get achey joints, fatigue, headaches that they may not associate with ongoing damage. Plus as stated above - eating gluten becasue you think you are in remission sets the stage for additional autoimmune disease


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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I like to compare celiac to type 1 diabetes. In both, the body attacks it's own tissue, and in both, lifetime maintenence is required.

Just like a type 1 diabetic can't go into remission and never have to take insulin everyday, a celiac can't go into remission and stop eating gluten-free. The gluten-free diet is a celiac's insulin.

(sorry to all of you that have to deal with gluten-free and insulin :unsure: )


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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I had digestive and gastro issues as a child.

Once I hit my teenaged years... they stopped.

Then I had kids, and they started again.... worse.

So, I believe there IS a period of remission. But, if you KNOW you are not supposed to eat Gluten, it's not license to go ahead and start. I had NO idea...due to the fact that my parents didn't bother to pursue any issues to try and get me healthy again. Ok, I have issues! =)


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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Thank you for all of your responses. My growing difficulty now is my friends denial, which has been acknowledged.. The joint pain is now there in the hands, as are some memory and concentration problems.

I'm not sure I can particpate in evenings where I know we would be having gluten, etc. even in small amounts. This could be a major turning point in our friendship.

Pondering the next step... ;)

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Thank you for all of your responses. My growing difficulty now is my friends denial, which has been acknowledged.. The joint pain is now there in the hands, as are some memory and concentration problems.

I'm not sure I can particpate in evenings where I know we would be having gluten, etc. even in small amounts. This could be a major turning point in our friendship.

Pondering the next step... ;)

That's hard... Telling her the truth in a graceful way is usually the best thing to do. What about still being friends, but letting her know you can't share in her food b/c _____ and that you will be providing your own ?


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I had digestive and gastro issues as a child.

Once I hit my teenaged years... they stopped.

Then I had kids, and they started again.... worse.

So, I believe there IS a period of remission. But, if you KNOW you are not supposed to eat Gluten, it's not license to go ahead and start. I had NO idea...due to the fact that my parents didn't bother to pursue any issues to try and get me healthy again. Ok, I have issues! =)

I think it's common for the symptoms to stop during the teenage years, but the damage is still being done.

Thank you for all of your responses. My growing difficulty now is my friends denial, which has been acknowledged.. The joint pain is now there in the hands, as are some memory and concentration problems.

I'm not sure I can particpate in evenings where I know we would be having gluten, etc. even in small amounts. This could be a major turning point in our friendship.

Pondering the next step... ;)

Joint pain in the hands and knees was one of my main symptoms as was "brain-fog." That shows that your friend is having a reaction.

You are a very good friend ... I definately wouldn't support your friend in eating gluten, but I wouldn't avoid those situations either. Tell your friend what you've learned, then in each of those situation, nothing will need to be said. Never provide glutenous foods for your friend ... you might even go so far as to not eat gluten around him/her and provide a gluten-free alternative for both of you.

Continuing to be there for your friend may supply the support he/she needs to be gluten-free. It's difficult to be gluten-free in a gluten based world!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I think it's common for the symptoms to stop during the teenage years, but the damage is still being done.

Yes, the symptoms can wax and wane over the years--some of us who had it for many years prior to Dx can look back and remember periods of time where we were symptom free.

For me, it was the teenage years, up to my late 20's. I also had periods of feeling well after being given Decadron (long acting steroid) injections for "inflammation"--in my 30's. That effect, of course, was only temporary since no one knew what the underlying problem was.

Even though the *symptoms* may abate, the disease never goes away.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Even though the *symptoms* may abate, the disease never goes away.

Good way to sum it up !


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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My growing difficulty now is my friends denial,

I have friend who's doing the same thing and I am very open about the future dangers of untreated Celiac and casually mention them, or at the very least, raise my eyebrows when she has a beer.

I doubt she will ever take her health seriously, for a variety of reasons, and so my choices are:

1. keep being mildly annoying and hope she'll clue in

2. give the big lecture whenever I see her doing something inappropriate

3. shut up and let her live her own life.

and I guess I'm doing some combination of all three. I don't know what else to do.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Some people may have symptoms at one point and then not at another point but there is no such thing as remission. If she/he is on gluten now...they are still doing damage to their bodies.


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

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I have friend who's doing the same thing and I am very open about the future dangers of untreated Celiac and casually mention them, or at the very least, raise my eyebrows when she has a beer.

I doubt she will ever take her health seriously, for a variety of reasons, and so my choices are:

1. keep being mildly annoying and hope she'll clue in

2. give the big lecture whenever I see her doing something inappropriate

3. shut up and let her live her own life.

and I guess I'm doing some combination of all three. I don't know what else to do.

Bottleworks on 45th is scheduled to have gluten-free beer some time in October... I relate to the choices, just wish there were more persuasive ones.

She just got the Dummies book from Barnes and Noble. Couldnt get beyond the intro..

Thanks...

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