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Supposedly Celiac

Pos blood/ no sypmtoms

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My blood test recently showed positive results for celiac antibodies (6 times over the negative limit). This is quite surprising to me since I have no signs, symptoms or any indication of nutritional deficiencies. In fact, it was only a fluke that I was even tested at all. I went to a new family doctor and since 3 immediate family members are diagnosed celiacs, my doctor suggested it. Now that I have a positive blood test result, I am scheduled for a GI endoscopy to confirm the diagnoses. But honestly, I'm in shock. I understand that there are silent celiacs but it seems weird that my blood results do not show any other abnormalities or nutritional deficiences(anemia, Vitamin D, Folic acid, etc.)

What is the likelihood it was a false positive blood result? Are there really silent celiacs with absolutely NO symptoms whatsoever??

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There is no false positive. If they say you've got it, you've got it. It may be that you haven't had it long enough for deficiencies to show up yet.

But after you've been gluten-free for a while I'd be willing to bet you discover that you DID have symptoms that you thought were just "normal". Insomnia, foggy head, thinning hair, less energy than you used to have that you may have chalked up to getting older.

My only symptom was psoriasis. Or so I thought. But after going gluten-free I found that my lifelong insomnia went away, and my energy level increase tremendously. And that dull thinking that crept up on me without my even noticing has turned into a clear-headedness that I haven't had since I was a kid.

As much as a shock as it is, and as hard as it may be to make the lifestyle changes that will now be necessary, I think you will be glad in the long run because you really will feel so much better.

And please, even if you don't have symptoms, DO go and stay gluten-free, or you will be doing so much damage to your body that you WILL get terrible symptoms and you may even be risking, no you WILL be risking, cancer, nerve damage, and a host of other horrible things.

Welcome by the way, to the club none of us really wanted to join.

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Are there really silent celiacs with absolutely NO symptoms whatsoever??

Everyone has some symptoms, hon ---they just do not ASSOCIATE any of them with celiac. So, you may not have OVERT gastro symptoms, but surely there is something you are overlooking?

Take a look at how Celiac manifests in over 300 symptoms, some of them seem to be unrelated or irrelevant. If you do an honest inventory, there is probably something there.

http://www.cureceliacdisease.org/medical-professionals/guide/symptoms

For me, it was bone pain as a child, then gall bladder disease, then viral pneumonia, then multiple miscarriages and joint pain, then ... about 65 more horrid symptoms kicked in.... and ONE of them was GI tract problems, but also, hair loss, burning nerve pain, cognitive issues, and a major weight loss (90 lbs.) See what I mean? before I knew it, I was dying and immobile.

I know someone who can help better. She has "silent celiac"...I will call on her to chime in.

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My dd is silent and we Found out when they ran a blood test. She has low thyroid and her dad is type 1 diabetic. They randomly tested her and she had it. Biopsy showed minimal damage but damage the same. I am sorry. It is a hard thing. Did they do the ema test? It is like 98% correct. Some labs do that and some don't. ((hugs))). I've been there. Heck I am still there!

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You have celiac disease.

You are so lucky you have a doctor who understands that the disease can be present - causing damage - without any symptoms at all. Finding out before you have symptoms or before you develop an associated AI condition will surely save you years and years of discomfort and possibly irreversible damage.

I imagine it will be harder to not give in to temptation if you don't feel the negative effects, but you already know you need to be serious about not eating gluten.

I wish every doctor was as good as the one you have - we should all be so lucky.

Cara

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Thanks for all your comments. I still have a few weeks until my GI endoscopy to confirm the blood test. The Doctor says I can keep enjoying all the gluten laden foods I want until I get the final confirmation. After that I'll have to have a 'going out of gluten' party where I eat all my favorite treats one last time!

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Ciao from one of those "silent celiacs". I, too, was in shock when the doctor told me I had it. I simply love food too much. Then denial crept in. At that time I thought I had no symptoms as I was healthy and did not feel ill. No GI symptoms. BUT in retrospect I attribute a few things to celiac:

- several miscarriages

- weak tooth enamel

- weak and breaking fingernails

- "fibromyalgia" pain that is constant and dreadful (I continue to suffer with it but am hopeful that it will go away)

- insomnia (hopefully this will go away as well)

I, too, enjoyed all the gluten-laden foods I wanted until after my scopes. You know what I did? I made a list of about 80 things I knew (then) I would never have again including real doughnuts, croissants, English muffins, pastries, and so on. After my biopsies I went strictly gluten free and that was 16 months ago. I have not cheated ever. Not even once. Nor will I ever. I hear and read that the longer you are gluten free and then ingest gluten symptoms can suddenly appear. And they can be severe. But it's not just the symptoms. To keep me on the straight path I picture my poor little villi lying totally flat. Then I think that my diagnosis, as disgusted with it as I was to begin with, may have saved my life. It literally can be a matter of life and death.

And those 80 some things I crossed off the gluten list? Turns out I can have probably about 50 of them gluten free. Trust me. I am a foodie to the 10th power. You will mourn what you can no longer have but it really and truly gets easier over time. In fact, after several months it became second nature. Yes, eating out can suck. Potlucks, weddings, etc. are hard. But if you plan ahead I believe ANYTHING can be done. You CAN do this. You MUST and you WILL!!!! :) Heck, I was teaching cooking classes but now teach gluten free classes and am the only one for miles and miles who does it. After grieving you begin to see that you see things differently. Crave something you cannot have? Make it yourself. Tough things like this really causes one to become introspective and look at your overall health in new ways. Celiac does not control me - I control it.

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After grieving you begin to see that you see things differently. Crave something you cannot have? Make it yourself. Tough things like this really causes one to become introspective and look at your overall health in new ways. Celiac does not control me - I control it.

This is my motto, too.

I knew that Love2Travel would give your her perspective when I told her we had a "silent newbie"!

The difference for me was I KNEW I had celiac, (it might as well have been tattooed on my forehead) but you "silent types" have the added burden of not really knowing when you are hit.

You definitely have celiac, hon (your blood test does not lie), and you will certainly be looking for assistance as you come to this realization.

We'll be here for you! :)

And welcome to the Forum.

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Its really interesting that I may be a 'silent' celiac when my 3 immediate family members are overt celiacs. If they eat gluten, they are severly sick with 20 minutes with GI symtoms and they spend the next 3 days in the washroom. Who knew that people in the same family would present so differently. But I guess, if it wasn't for their obvious celiac symptoms, I wouldn't know about my family history and may not have been diagnosed.

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There is no false positive. If they say you've got it, you've got it. It may be that you haven't had it long enough for deficiencies to show up yet.

But after you've been gluten-free for a while I'd be willing to bet you discover that you DID have symptoms that you thought were just "normal". Insomnia, foggy head, thinning hair, less energy than you used to have that you may have chalked up to getting older.

My only symptom was psoriasis. Or so I thought. But after going gluten-free I found that my lifelong insomnia went away, and my energy level increase tremendously. And that dull thinking that crept up on me without my even noticing has turned into a clear-headedness that I haven't had since I was a kid.

As much as a shock as it is, and as hard as it may be to make the lifestyle changes that will now be necessary, I think you will be glad in the long run because you really will feel so much better.

And please, even if you don't have symptoms, DO go and stay gluten-free, or you will be doing so much damage to your body that you WILL get terrible symptoms and you may even be risking, no you WILL be risking, cancer, nerve damage, and a host of other horrible things.

Welcome by the way, to the club none of us really wanted to join.

You say cancer???? Would this eventually turn into something like colon cancer? My uncle passed from colon cancer and my aunt is a survivor of colon cancer. My dad luckily has a good colon. Just wondering.

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It's very possible. This is from the Mayo Clinic's article on celiac:

Symptoms

Causes

Risk factors

Complications

Preparing for your appointment

Tests and diagnosis

Treatments and drugs

Lifestyle and home remedies

Coping and support

Complications

By Mayo Clinic staff

Left untreated, celiac disease can lead to several complications:

Malnutrition. Untreated celiac disease can lead to malabsorption, which in turn can lead to malnutrition. This occurs in spite of what appears to be an adequate diet. Because vital nutrients are lost in the stool rather than absorbed in the bloodstream, malabsorption can cause a deficiency in vitamins and minerals, vitamin D, folate and iron, resulting in anemia and weight loss. Malnutrition can cause stunted growth and delayed development in children.

Loss of calcium and bone density. With continued loss of fat in the stool, calcium and vitamin D may be lost in excessive amounts. This may result in osteomalacia, a softening of the bone that in children is also known as rickets, and loss of bone density (osteoporosis), a condition that leaves your bones fragile and prone to fracture.

Lactose intolerance. Because of damage to your small intestine from gluten, foods that don't contain gluten also may cause abdominal pain and diarrhea. Some people with celiac disease aren't able to tolerate milk sugar (lactose) found in dairy products, a condition called lactose intolerance. If this is the case, you need to limit food and beverages containing lactose as well as those containing gluten. Once your intestine has healed, you may be able to tolerate dairy products again. However, some people may continue to experience lactose intolerance despite successful management of celiac disease.

Cancer. People with celiac disease who don't maintain a gluten-free diet also have a greater chance of getting one of several forms of cancer, including intestinal lymphoma and bowel cancer.

Neurological complications. Celiac disease has also been associated with disorders of the nervous system, including seizures and nerve damage (peripheral neuropathy).

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You may not have had celiac for a long time. It could be your antibodies just started to react. If you don't follow the diet though you will almost certainly develop symptoms of some kind, or other autoimmune diseases. Many people here report having a much stronger reaction to gluten after they stop eating it. That could happen to you also or maybe not. Some people have no GI symptoms at all, but have nerve damage or joint pain or skin rashes, thinning hair, etc or mental symptoms. Celiac can affect any part of the body, not just the gut.

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Had my endoscpy this week. GI doc says 'features consistent with mild celiac disease'. Biospy results back in a few weeks. I have no idea what 'mild celiac disease' means. Perhaps, I can cheat with gluten once in awhile with no consequences. Anyway, being a 'slient celiac', I won't even know if i've eaten gluten anyways. What a stupid disease this is! I have no symptoms and I'm supposed to adhere to some life altering and limiting lifestyle. Not impressed!

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Had my endoscpy this week. GI doc says 'features consistent with mild celiac disease'. Biospy results back in a few weeks. I have no idea what 'mild celiac disease' means. Perhaps, I can cheat with gluten once in awhile with no consequences. Anyway, being a 'slient celiac', I won't even know if i've eaten gluten anyways. What a stupid disease this is! I have no symptoms and I'm supposed to adhere to some life altering and limiting lifestyle. Not impressed!

Welcome to the forum! Many times a doctor cannot see visible damage when they do the scope. They send the biopsies to the lab and they are examined by a pathologist. So if you have visible damage, I don't know how he can call that "mild". When you have your follow-up appointment, be sure to pick up copies of the report. I'm curious though...what prompted the doctor to do the endoscopy? He must have suspected something.

I had a lot of symptoms when diagnosed and I was happy to find out what was wrong with me. While eating gluten-free is quite a change for us, many of us have adapted well. It's not quite so difficult once we get used to knowing what we can and can't eat, do a lot of label reading and find gluten-free products or recipes for some of our favorite foods.

It's quite a shock to lots of people when they're diagnosed and have no symptoms that they're aware of. But if you're diagnosed with celiac, it's important to go totally gluten-free. Feel free to ask any questions you may have.

Edit: I just went back to the beginning of this topic and see you have family members with celiac so I can see why your doctor did the endoscopy. And with positive test results, I'd say you have it, symptoms or not. It would be very rare, if at all possible, to have positive blood antibody tests and not have celiac. Hopefully your doctor caught it early before severe damage has been done.

Edited by sa1937

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Hon you DO have celiac disease. I know you're fighting it right now like all get out but you will come to terms with it. And cheating once in a while is NOT okay. Not even if you don't have any symptoms. But I'm betting you will find that you will have symptoms the first time you cheat. And I pray for your sake that those symptoms do not manifest themselves in the form of the celiac rash aka dermatitis herpetiformis (dh). A goodly # of celiacs with dh are "silent celiacs" until they get the rash. And let me tell you --- you don't EVEN want to go there.

Feel free to scream & rant & rave & vent & cry to us about how rotten & unfair this is. We've all done our share of the same. We understand. We might even be able to make you laugh.wink.gif But we will be here for you.

Now go have your "going out of gluten" party & make sure it's a whopper of a party & enjoy yourself to the max.!smile.gif

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Had my endoscpy this week. GI doc says 'features consistent with mild celiac disease'. Biospy results back in a few weeks. I have no idea what 'mild celiac disease' means. Perhaps, I can cheat with gluten once in awhile with no consequences. Anyway, being a 'slient celiac', I won't even know if i've eaten gluten anyways. What a stupid disease this is! I have no symptoms and I'm supposed to adhere to some life altering and limiting lifestyle. Not impressed!

Ha ha, believe me, you don't want the symptoms, they are not all that much fun! Mild celiac is like mild preganancy. You are either pregnant or you aren't, same with celiac. What your doc might have meant is you have moderate damage at this point to your intestinal villi. They rate the damage to the intestinal villi on the Marsh scale. Visible damage is not mild IMHO. Maybe the doc didn't want to alarm you until the lab results were in so they said mild.

Your family should be able to help you a lot with doing the gluten-free diet. Of course we can help too since we do it every day.

Here's some getting started threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

How bad is cheating?

Short temper thread

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