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Celiac With No Symptoms?


healthyme

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healthyme Newbie

I was having chest pains later to find out it wasn't the chest it was my stomach. I spent the night in the hospital. It come on suddenly - I got light headed and very weak. I when though countless tests - blood work, biopsy, etc. I took them a week and many conversations with other doctors to tell my I had Celiac disease. I went for a second opinon as I have NO symptoms of celiac disease but the tests come up positive. The second doctor said "I don't know what to tell you, as the tests come up positive but you have none of the symptoms of celiac disease." I'm eating anything and everything a celiac disease person shouldn't be eating and I feel great. I asked if I could retake the tests but he said they would still come up positive. Do I go for a 3rd opinion? Should I obey the celiac diet or should I just say enjoy life the way I am right now. I did lose 60 lbs. in 10 months recently.


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celiac3270 Collaborator

Without question, you should start the gluten-free diet. A majority of all celiacs are asymptomatic, which is why so few are diagnosed, yet 1 in 133 people has it.

Asymptomatic celiacs are more common than the symptomatic celiacs, but you hear more of symptomatic celiacs since those without symptoms don't get diagnosed (no problems, so no tests run).

Also, weight loss is a symptom

KaitiUSA Enthusiast

Celiac is not symptomatic. You can feel perfectly fine while the gluten is tearing up your intestine. Weight loss is a symptom of celiac. I lost like 15 pounds in a short period, when I went off of gluten it all came back.

If the tests came back positive you have it. When your blood tests are elevated that means something is in fact going on. Be glad that they picked it up now. Celiac is very underdiagnosed because not only do some peope with it feel fine but others are misdiagnosed because some of the symptoms relate to other things.

You should definately go on a gluten-free diet. Celiacs that do not follow the diet have an overwhelming increase in the chance of cancer and other serious illnesses.

It may seem like a pain in the butt at first until you learn what you can have but don't let that discourage you because it does get easier. If you would like help with things you can have I would be more than happy to help you.

Hope this helps and good luck! :D

dsrcmr Newbie

Defenitely start a gluten free diet. My husband didn't seem to have any symptoms either and he is 33. He felt good too. After an x-ray at the chiropractor, and then a bone density scan- it was determined he had osteoporosis. He didn't feel pain- just was a new patient xray. After blood tests and 2 scopes it was determined he has celiac disease. Now we are going through different tests with my 9 year old daughter who is regular weight and height, feels fine, but yet antibodies are very elevated. Good luck to you.

Amy

MySuicidalTurtle Enthusiast

You may show symptoms later. You cause great damage to your body by eating gluten even if you don't think you are. Many different diseases and complications occur to Celiacs who continue to eat gluten. It will be ebtter for you in the long run to go on the diet and take care of yourself.

tarnalberry Community Regular

As has been noted, MANY people do not feel obvious intestinal symptoms. Some may still get fatigue or joint pain or foggy-headedness or weight loss as symptoms, some not even those. But if you're positive on the antibody test, you've got damage being done to your intestines, and not following the diet will increase your chances of developing osteoporsis, anemia, lymphoma, other intestinal cancers, etc. and generally increase the chances of dying early. False positives are virtually unheard of (particularly if you've had two tests). You may find that you would develop symptoms in a few months or a few years if you continued eating gluten.

Merika Contributor

All this is probably not what you wanted to hear ..... but maybe this will give you a different perspective.

If I could go back in time and get positive celiac diagnosis when i first exhibited symptoms - sudden weight loss, rapid heart rate, dizziness, hospitalization (with no ultimate diagnosis) - I would be immediately gluten-free and positively celebrating *all night long*!! Why? Because after being seemingly perfectly healthy, then a sudden onset of symptoms, which did eventually recede somewhat, and a high gluten diet - fastforward to 13 years later my health is shot, I feel like cr&p every day, and my body may never fully recover. I've been gluten-free one year now, and it is getting better, but if i could have gotten a diagnosis THEN????? Oh my goodness, I'd take it! Yes, it took 12 years before i got a diagnosis, and even then it was almost accidental - i don't exhibit the classic external GI signs of celiac.

Merika


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grannynanny Rookie

Again, I can only add to the chorus of "take your diagnosis and run with it" messages you are getting. I suspect that you are "younger" and have not yet done the horrific damage to your small intestine that I have. I was in my early fifties when I began to have awful gastric symptoms. Seven years, many tests, and significant numbers of trips to the emergency room later, I am finally a (self) diagnosed celiac. Having been on the gluten-free diet for about 7 months now, I am feeling SO much better. But had I gotten a diagnosis in my twenties or thirties, and had I taken it seriously (since I was symptom-free then), I would have saved myself a lot of pain and suffering. You are, indeed, lucky!

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    • xxnonamexx
      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
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      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
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