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Question For The Experienced Here...


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8 replies to this topic

#1 fourleaf

 
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Posted 30 December 2012 - 12:46 PM

Is it common for symptoms that are related to different organ systems (ie GI, bladder, skin,brain) to come and go in seemingly no related pattern? In other words do most people always get reproducible symptoms or is there a subset of people who are gluten intolerant that have NO consistent symptoms?
What I have found is that my symptoms have slowly escalated over my life (now 46) but while one set of symptoms improve intermittently (GI) others worsen (skin and bladder). It becomes very confusing to decipher what the heck is going on... but I am convinced that they are all related. The chance that I have 3 or 4 separate issues that NO doctor can figure out vs one thing that is responsible for all of them seems to favor the one over lying cause IMO. It seems to make sense that an overactive immune system is searching for a variety of targets to attack and then (at least in my case) backs off for a bit... until it starts again. I just hope that by cleaning up my diet I can get to the root cause of the issue!
Any thoughts?
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#2 GottaSki

 
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Posted 30 December 2012 - 02:42 PM

Yes.

That's the short answer because I'm on my cell.

I will add more later and I'm sure you will hear from a few more before then.
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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 :)


#3 IrishHeart

 
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Posted 30 December 2012 - 05:44 PM

Yes.

That's the short answer (not because I am on my cell :) but because this is the answer to your major questions about symptoms)

But you raise several questions and there is no "pat answer."

Are you asking if these symptoms resolve on a gluten-free diet?
Yes, they can. And yes, our bodies are ONE complex system, so of course, I think they are related

But what else is going on? Are you a celiac? You do not say.
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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


#4 mushroom

 
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Posted 30 December 2012 - 05:53 PM

Since your doctors seem unable to make any connection, put it all together for them. Tell them you want to be tested for celiac disease. Make sure they run a complete panel because all the tests are important and you may test positive on only one of them:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Keep gluten in your diet until all testing for celiac is done, because the next step (perhaps even if the blood tests turn up negative) is to do an endoscopy with biopsies.

If you get this far and still have no diagnosis, that's the time to give up gluten and see if it makes a difference in your life. And you need to trial it for 3-6 months before making up your mind because it can take that long to appreciably improve.

Print out that list and take it to your doctor. Best wishes for coming up with an accurate diagnosis. Keep us informed of how things go. :)
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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

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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

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#5 mommida

 
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Posted 30 December 2012 - 06:16 PM

Excellent question four leaf.

Yes. Other organs can be affected when Celiac an auto-immune disease is present and untreated. Some of the most common connections to Celiac....

Diabetes
High abnormal liver enzymes (usually resolves once gluten free)
auto-immune thyroid disease, Grave's and Hashimoto's

some things associated with damage to the gut...
leaky gut syndrome
pernicious anemia (gut lining lacks the intrinsic factor to process vitamin B12)
severe constipation can lead to UTI's (urinry tract infection) to kidney infection

vitamin and mineral defiencies
anemia (PICA might be termed under mental illnes or at least it probably was in the old days. In cases of anemia the craving to eat/chew NON food items)
keratosis folliculitus, skin irritation from fat malabsorbtion
geographic tongue (still not proven which defiency)
some acne breakouts (zinc)
premature greying may be related to vitamin B12

So these are a few examples.

There are also many auto-immune illnesses that seem to be helped by a gluten free diet. (like M.S.)
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Michigan

#6 IrishHeart

 
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Posted 30 December 2012 - 06:25 PM

yes....and more!

here, read this:

http://www.curecelia...SymptomList.pdf

and print this out too!
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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


#7 fourleaf

 
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Posted 30 December 2012 - 06:47 PM

Thanks for your replies... I have had some blood tests for celiac (not sure which ones) and they were negative. Had an endoscopy that was negative for celiac (biopsy was done). I have a life long history of GI issues, am being treated for IC and have had swollen painful parotid glands intermittently (blood work for Sjogren's was negative). No specific answers (I did have`a biopsy significant for ulcerative colitis). I strongly feel that I have some low level auto immune issue that is responsible for my health problems. Perhaps gluten is an issue so I have committed to try no gluten and see how I feel.
I can eat gluten and not really reliably suffer any ill effects but I wonder if my immune system feels otherwise. That is why I wondered if people here always get symtoms when they eat gluten... of course I do realize`that everyone is different. Frustrating...
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#8 mommida

 
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Posted 30 December 2012 - 07:40 PM

I think there is enough reputable research out there that a gluten free diet is helpful for Crohn's Disease for you to try the diet. (I do realize you mentioned ulcerative colitus, not Crohn's.)

You have to remember that if gluten is an issue for you, you have probably consumed in part of every meal. (Especially if you have followed doctors orders to eat "healthy" and even commit to eating MORE wheat in whole grain form. You should not have been advised that for ulcerative colitus.) You haven't given your immune system a chance to stop attacking your body.
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Michigan

#9 GFinDC

 
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Posted 31 December 2012 - 08:59 AM

Hi Fourleaf,

Some people with celiac have no symptoms and they call that silent celiac. Others have very severe symptoms, and some have nuerological symptoms or skin rashes, or joint pain or dry eyes, or itchy skin or nail ridges or sneezey cats. There are 300 possible symptoms of celiac disease, including the silent no symptoms people. So trying to figure out how your body should react by comparing to how others react is a little dicey. Sneezey cats isn't one of the celiac symptoms :). There's also NCGI which they are still trying to figure out. The thing to understand is not everyone reacts the same, and not everyone has GI symptoms. A positive response to the gluten-free diet is a very good indicator that a person shuold not be eating gltuen though. Better than any test a doctor can give you. That doesn't mena don't get tested. Getting tested is important, but trying the gluten-free diet for several months is best test after all the medical doctor testing is done.
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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




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