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Just Diagnosed With Mild Celiac Disease


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21 replies to this topic

#1 rafi

 
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Posted 09 February 2009 - 03:54 AM

Hi,

Due to a borderline positive dor the DGP antibody, my doctor diagnosed me with mild celiac disease. She said since i dont feel pain from eating bread, i can continue eating gluten unless i start feeling pain.

I have had stomach pains for the last 15 years, and when i was a child, i went through many tests and doctors couldnt figure out what it was. (They did not test for celiac disease..)

I still feel strange (not painful) feelings in my stomach, but not necesarily after eating gluten....

Is celiac a genetic disease?

is it possible that my very painful childhood celiac disease became less intense now? (im age 20)

Is it true that i can continue eating bread (im currently living in a 2nd world country and dont trust the medical system so much)?

If i would stop eating gluten, would my general health get better?

any answers would help.

Thank you in advance.
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#2 MELINE

 
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Posted 09 February 2009 - 04:10 AM

Welcome to the forum.

I am sorry, but I don't get it.... what is a mild celiac disease??? is there such a thing????? As far as I know there is one celiac disease and it is totally - completely - absolutely not allowed to eat ANY gluten.


Do you trust this doctor? I've never heard of mild celiac disease that allows you to eat gluten until you start feelng terrible.


Celiac is not something that gets better as time goes by. Even if you have absolutely no symptoms at all (like my case) it will damage you the same as if you were in pain 24/7.


it is totally unacceptable to have gluten if you have celiac. I just don't understand this diagnosis. Maybe someone else knows something that I am missing here.


Please be careful. Celiac is not a game. Is it possible to visit another doctor? this sounds very strange to me and not professional at all.


Meline
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Celiac September 2007

Graves disease June 2008

Candida overgrowth / started treatment November 2008

#3 Fiddle-Faddle

 
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Posted 09 February 2009 - 05:23 AM

I'm afraid you are going to get a million responses to your post, all telling you that your doctor is an idiot who knows nothing about celiac disease, and that if you have it, mildness of symptoms do not always correlate with severity of damage.

And this is one of them.

Seriously--when you have celiac, your immune system is triggered by gluten to attack YOU. This could be your intestines, your skin, your thyroid, your pancreas--there is even quite a lot of research linking celiac to neuro issues even in the absence of intestinal distress.

There is no such thing as "mild" celiac. That would be like "mild" cancer. A more accurate way to think about it would be early-stage celiac or late-stage celiac. But if you've had stomach pains for 15 years, then I wouldn't call that "early stage."

Continuing to eat gluten after the immune system starts to attack you usually results in more than one autoimmune disorder. Consider that rheumatoid arthritis, fibromylagia, diabetes, PCOS, Graves' disease, Hashimoto's, lupus, and MS are all associated with gluten intolerance, and can be either caused or exacerbated by gluten ingestion.

Please search in your area to see if there is a local celiac support group--they would have the names of doctors who actually know what they're talking about when it comes to celiac.

Good luck, and welcome aboard!
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#4 MELINE

 
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Posted 09 February 2009 - 05:38 AM

I'm afraid you are going to get a million responses to your post, all telling you that your doctor is an idiot who knows nothing about celiac disease, and that if you have it, mildness of symptoms do not always correlate with severity of damage.

And this is one of them.



actually I was about to start yelling when I read the message...stupid doctors.

:angry:
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Celiac September 2007

Graves disease June 2008

Candida overgrowth / started treatment November 2008

#5 rafi

 
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Posted 09 February 2009 - 06:29 AM

Hi,


Question after readers' replies:

If this helps anyone, here are the results of my blood test..

the DGP antibody is what the doctor said was related to celiac

bilirubin total: reference values: .3 - 1.3 Results: 2.08 mg/dl
antiendomysial NEGATIVE
Anti TTG (IGA) reference values: 0 - 20 Result: 4.20 au/ml NEGATIVE
Anti DGP reference values: 0 - 20 Result: 20.73 Borderline

Due to a borderline positive dor the DGP antibody, my doctor diagnosed me with mild celiac disease. She said since i dont feel pain from eating bread, i can continue eating gluten unless i start feeling pain.

I have had stomach pains for the last 15 years, and when i was a child, i went through many tests and doctors couldnt figure out what it was. (They did not test for celiac disease..)

I still feel strange (not painful) feelings in my stomach, but not necesarily after eating gluten....

Is celiac a genetic disease?

is it possible that my very painful childhood celiac disease became less intense now? (im age 20)

Is it true that i can continue eating bread (im currently living in a 2nd world country and dont trust the medical system so much)?

If i would stop eating gluten, would my general health get better?

any answers would help.

Thank you in advance.


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#6 chasbari

 
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Posted 09 February 2009 - 06:31 AM

Then I guess it's possible to be mildly pregnant or partly dead. I agree with the late stage early stage assessment as a better description. From what you have said about the pain you have had over the years I would say it is only beginning to manifest itself in ways that even a DOCTOR can finally recognize. You are here asking because you probably already know the answer but the doc's assessment casts doubt when you already know what you need to do. Cut out the gluten and never look back!
Good health to you.
Chuck
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#7 Lisa

 
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Posted 09 February 2009 - 07:12 AM

http://www.pubmedcen...i?artid=1356631

Measurement of DGP antibodies should be a valuable adjunct to current serologic panels for diagnosing celiac disease, particularly in those situations where EMA and/or TGA results are unclear. Furthermore, the DGP IgG assay, like the TG IgG assay, may prove useful for diagnosing celiac disease in individuals with IgA deficiency (5, 10). Identifying this small subset of celiac disease patients is a challenge, since sera from these individuals are falsely negative for EMA, TGA, and presumably DGP IgA. Further studies are needed to explore this hypothesis.

I would continue to consume gluten and have the FULL Serologic Celiac Panel:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

If you choose not to test further, go on a total gluten free diet. A positive dietary results will indicate a gluten allergy, sensitivity/intolerance or Celiac Disease. I don't believe that your testing was comprehensive enough to diagnose Celiac.

Never the less, attempt the diet and with hope you will feel better and eliminate potential, more serious, conditions in your future.
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"Not all who wander are lost" - JRR Tolkien

#8 kenlove

 
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Posted 09 February 2009 - 07:26 AM

I have to agree with the others, you need a doctor who has a much better understanding of celiac.
>>She said since i dont feel pain from eating bread, i can continue eating gluten unless i start feeling pain. << You don't feel pain from smoking but still can wake up one day with lung cancer. Everytime you eat something with gluten your destroying part of your small intestine if you feel pain or not.

I still feel strange (not painful) feelings in my stomach, but not necesarily after eating gluten....There are many items with "hidden" gluten that can cause the strange feeling or you could be reacting to something else.

Is celiac a genetic disease?

is it possible that my very painful childhood celiac disease became less intense now? (im age 20) -- The disease may not be less intense, its still there, but you may not feel the pain you did when younger.

Is it true that i can continue eating bread (im currently living in a 2nd world country and dont trust the medical system so much)? -- You can not eat bread with wheat or rye or barley in it. There are gluten free breads or substitutes in many countries.

If i would stop eating gluten, would my general health get better? YES!
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#9 mamaw

 
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Posted 09 February 2009 - 08:07 AM

Yet another doctor without knowledge of celiac disease... I hope you follow the others advise & your own instincts....The group of people on this site has so much insight , please heed the advice ...blessings

mamaw
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#10 ravenwoodglass

 
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Posted 09 February 2009 - 11:28 AM

I had celiac without a doubt since childhood because I had the skin and neurological forms. I had no stomach issues that seemed beyond 'normal' issues until I was 30. I was finally diagnosed at 45. If you read my signature you can clearly see what continuing to eat gluten can do.
You have a great source for info and for support here. If you need to know whether a food is safe or not if you post here if someone can't answer they can usually tell you how to find out.
It can be confusing at first and one of the easiest ways to eat safely in the beginning is to eat whole foods that have either not been processed at all or gone through very little. Many of the companies that sell specialty gluten free products can ship them if you can not find a source locally.
Be thankful that this was found early. I have heard statements like you got from your doctor. When my DD was diagnosed she was told that since the damage wasn't yet severe she could continue to eat gluten until it was if she chose. When the doctor saw my jaw drop and my eyes glow red he then told her that she could also choose to not eat gluten and prevent herself from becoming like Mom.
To answer the genetics question, yes celiac is strongly genetic. But it is not uncommon for it not to be diagnosed and for other family members to have varied presentations. I should state also that not everyone that carries the gene will always develop it. It often requires a trigger like an illness or severe physical or mental stress.
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"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)

#11 Canadian Karen

 
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Posted 09 February 2009 - 04:11 PM

Sigh.......... :( Still such ignorance in the medical community thanks to many things, including......

http://www.msnbc.msn.com/id/21333262/

Why would medical schools, who are heavily funded by pharaceutical companies, teach about a disease that has a diet for a treatment, not a pill? Can you imagine how many pills would NOT have to be consumed to manage the countless spin off complications and diseases caused by celiac? Depression, thyroid disease, osteoporosis, the list is endless........

I fervently hope you listen to the incredibly caring and well informed people on this forum, so you don't end up like me......

Take care,
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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#12 rafi

 
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Posted 10 February 2009 - 09:18 AM

can someone please translate "momma goose"'s post into non-medical english?

It seems that everyone is already assuming i have celiacs....since the doctor was an idiot, maybe i have something else?
If everyone is learning the info from my blood test results, can some1 please explain it to me in english?

I really tremendously appreciate everyone's help...it's been making this process 99% calmer.
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#13 Lisa

 
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Posted 10 February 2009 - 09:41 AM

I don't believe that your testing was comprehensive enough to diagnose Celiac.



My bottom line ;)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#14 rafi

 
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Posted 10 February 2009 - 12:25 PM

ill try to get the full blood test reccomended my mother goose sometime during the next 2 days....
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#15 sixtytwo

 
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Posted 10 February 2009 - 02:45 PM

This is three times I have come back to this thread and seen this particular same subject. I can't even believe a real doctor would even say something like this. Bottom line............run, so not walk, to a gastroenterologist (after doing some research into how much the new one knows) this is too important for you to stick with that quack. Remember..........even the guy/gal that graduated at the botton of his class is still called DOCTOR!!!!!!!!!!!!!!!!! You want to find the one that graduated at the top of their class and still reads new information!!! Do your homework, it will be worth it. Also, stick with this board, as there are very enlightened, smart people here and although I pretty much have my situation figured out, I still come here and find out new things all the time. Best wishes.
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