Just Diagnosed With Mild Celiac Disease

[rafi]

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.

[MELINE]

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

[Fiddle-Faddle]

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!

[MELINE]

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.

[rafi]

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.

[chasbari]

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

[Lisa]

Open Original Shared Link

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.

[kenlove]

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!

[mamaw]

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

[ravenwoodglass]

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.

[Canadian Karen]

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

Open Original Shared Link

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

[rafi]

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.

[Lisa]

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

My bottom line

[rafi]

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

[sixtytwo]

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.

[mci289]

rafi,

i am a 30 year old male that was diagnosed 15 months ago. i live in australia, yet still struggled to find a doctor that knew much about this disease.

i too posted a thread here when i was diagnosed, asking for advice to help educate myself. at the risk of upsetting others here, it doesnt help having all sorts of other horrible diseases thrown at you as a scare tactic. yes, these may all be by-products of celiacs, however you do not have them.

the reality of the situation is that celiacs is real. and giving up gluten is very very difficult.

i was a lot like yourself, was given information that was not correct. and lets face it, it is easier to believe your doctor than an absolute stranger on the other end of the keyboard.

it took me almost a year to give up gluten completely. unfortunately my whole lifestyle had to change, and being a young male in a hot country, beer was just too much of a temptation.

during this year i did try to eat and drink correctly. however after a while i started to notice what the gluten and certain foods did to me. i suppose you could say i learnt the long way. but i did learn. eventually.

knowing what i know now about how my body reacts to certain foods, i believe i needed to learn for myself. no regrets at all. this may upset some readers, but oh well.

that funny feeling you get in your stomach if you havnt eaten gluten, i know is quite strange. i too get it, and in my case i am sure the feeling is emptiness because there is nothing in my stomach that shouldnt be there. it is better than the alternative.

i have not had any gluten in four months. and i hopefully never will. i decided that the sacrifices where well and truly worth it. my health and general well being have improved immensely.

there is no doubt that celiacs is a serious disease. and when you start examining ingredients against the list of banned foods it will become one great big hassle.

my advice to you is to read everything you can, the good, the bad and the ugly.

pay attention to what you are eating, gluten or gluten-free, and pay particular attention to how you react to certain foods, and how you feel if you have been going gluten free.

hope this helps you

best of luck with everything

matty

[Jestgar]

i too posted a thread here when i was diagnosed, asking for advice to help educate myself. at the risk of upsetting others here, it doesnt help having all sorts of other horrible diseases thrown at you as a scare tactic. yes, these may all be by-products of celiacs, however you do not have them.

Thanks for pointing this out. We all need the occasional reminder to only answer the question asked, and not overload someone with too much information.

[Fiddle-Faddle]

Thanks for pointing this out. We all need the occasional reminder to only answer the question asked, and not overload someone with too much information.

We can't always know how the original poster will react.

When I first posted, I was given what you might consider to be "too much information," and thank heavens I was! It was because of people like Canadian Karen, Ursa Major, and tiredofdoctors and the reams of information they gave me that I understood what the risks, no, what the virtual certainty was that I would eventually end up like them or worse if I continued to eat gluten!

I agree, not all posters can process lots of information in the beginning, and many don't even want to hear it! But if we don't offer it, who will? Certainly not their doctors...

[Jaimepsalm63]

Matty, IMHO you are right on! I know it's overwhelming and almost unbelievable what some of us have as results of the autoimmune problems of Celiac. Sometimes, it's live and learn to really understand what needs to be done in order to feel better.

I'd like to point out that sometimes it feels strange to feel ok, because people aren't used to it. That is the experience with a friend of mine. I do wish I could say the same. Such is life.

As to the topic of having "mild Celiac Disease"....I like the analogy that was used earlier, you either have cancer or you don't, you're either pregnant or you aren't, you either have Celiac or you don't.

Read and learn all you can about Celiac. It is up to you more than your doctor to take care of yourself. You have access to the internet, obviously, so use it and learn.

I wish you the best.

J

[rafi]

My doctor wouldnt give me the other blood tests.

is having a borderline positive dgp result and negative EMA and ttg common to people who dont have celiacs?

in a matter of 2 minutes they gave me a go-ahead to have a free endoscopy...does anyone have any idea if its worth doing that with the info i have?

[rafi]

that funny feeling you get in your stomach if you havnt eaten gluten, i know is quite strange. i too get it, and in my case i am sure the feeling is emptiness because there is nothing in my stomach that shouldnt be there. it is better than the alternative.

I dont exactly get what you wrote here, but i thoguht about how to explain the strange feeling i get after eating food to my doctor, and the only thing i could think of was "the feeling you get when your really hungry....but i get when i just ate"...

are you saying that the feeling is how i should feel, and when i dont feel it it's because i ate something that shouldnt be there?

or am i just confused?

[mci289]

rafi,

i would love to give you an answer to the way you are feeling, but i cant sorry.

i am pretty sure that my celiacs was triggered about 7 years ago after a severe trauma. i was diagnosed 15 months ago.

in the 5 and a half years between trigger and diagnosis the pain/ discomfort/ fullness feeling i had became "normal".

this feeling stoped with a gluten free diet. which in turn was replaced with what i describe as an "empty" feeling.

the foods that used to fill me up are now the ones that i cant eat anymore. i now find myself eating a bit more. no big problem as my body is much more regular due to my system agreeing with the food i am feeding it.

the one thing that really confused me when first diagnosed was the fact no one seems to have the same reactions, reaction time and triggers.

this was certainlty the reason for me thinking that i was "not as bad" as others with the disease. as i said before, i learnt the long way.

there are plenty of different problems, but unfortunately there is only one solution.

hope this helps you a bit

take care

matty