Silent Celiac Disease

[Real1]

Hi Recently diagnosed with silent celiac disease on a fluke screening for anemia (which was later discovered to be primarily associated with an ovarian cyst.) Basically, I have no noticeable symptoms of celiac that I would run to the doctor for a cure. I am really frustrated by the thought of spending the rest of my life on a gluten free diet. My GP and the G.I. doctor that performed the biopsy to confirm celiac really were not that helpful. They basically handed me some general info that is readily available on the internet and suggested I see a dietitian. I am really debating whether to go gluten free or not. I cannot find any good statistics relating to silent celiac disease and what is the probability of having complications or symptoms sometime in the next 5 to 10 years. The science behind silent celiac disease seems weak and it is hard to tell whether someone will ever have any significant symptoms or complications. It seems everyone with celiac is lumped together regardless of degree of symptoms. Although "gluten free" diets are quite trendy these days, celiac disease research and treatment seems like it is in the dark ages. Anyone know where I could find some credible research on silent celiac disease.

[adab8ca]

Hi

Sorry for the diagnosis, especially since you weren't looking for one.I was diagnosed in September with blood test and biopsy. I ONLY started getting symptoms in February which were horrible neuropathy and depression with some weight loss. I am very tall and not skinny, no reason to believe that there was anything wrong with me before Feb.and my diagnosis was a total fluke in ruling out stuff, one of the things they tried to rule out was celiac! I saw a host of specalists and none of them could believe the weird symptoms I had ( i mean, absolutely NO stomach problems) and basically said to call a dietician and good luck, see ya. However, my GI suspects I have had this a LONG time. Too bad I didn't get diagnosed sooner, I am still really suffering from when this all came crashing down in Feb.

Just because you have no symptoms now does not mean that you will be that way forever...My advice? Ditch the gluten. Everyone is different and we can't tell you how long it will take to get sick or what will happen but you are still doing damage to your body every time you ingest gluten. Your body is attacking itself.

I know it isn't what you wanted to hear

[cassP]

Hi Recently diagnosed with silent celiac disease on a fluke screening for anemia (which was later discovered to be primarily associated with an ovarian cyst.) Basically, I have no noticeable symptoms of celiac that I would run to the doctor for a cure. I am really frustrated by the thought of spending the rest of my life on a gluten free diet. My GP and the G.I. doctor that performed the biopsy to confirm celiac really were not that helpful. They basically handed me some general info that is readily available on the internet and suggested I see a dietitian. I am really debating whether to go gluten free or not. I cannot find any good statistics relating to silent celiac disease and what is the probability of having complications or symptoms sometime in the next 5 to 10 years. The science behind silent celiac disease seems weak and it is hard to tell whether someone will ever have any significant symptoms or complications. It seems everyone with celiac is lumped together regardless of degree of symptoms. Although "gluten free" diets are quite trendy these days, celiac disease research and treatment seems like it is in the dark ages. Anyone know where I could find some credible research on silent celiac disease.

you mean "silent" as in asymptomatic right? if you tested positive- it is still ACTIVE even tho its silent. please stay on this forum and soak everything in-> there is a wealth of information on here- and plenty of reasons why you should go gluten free even tho you are not suffering stomach wise.

Celiac disease can cause so so so so so much more than stomach pain- it can lead to intestinal lymphoma, stomach cancer, neuropathy, dementia, etc....

depending on what other genes you have-> Gluten can also trigger additional Autoimmune Diseases including Diabetes type 1, Autoimmune Liver Disease, Lupus, MS, Psoriatic Arthritis, Crohns, etc...

it is extremely common for one to develop more than 1 autoimmune disease. i have also been dx with Hashimoto's Thyroiditis... and im hoping the Autoimmune festival stops with those 2 for me.

please go gluten free- and know that you are actually in the majority of those with Celiac (5/6 of Celiacs reportedly have no stomach issues). it WILL lead to other health issues if you continue to eat it- you already had the anemia. consider yourself blessed and lucky to have gotten the diagnosis so you could get a head start on your health

[GFRPH]

There was an article last year in Gastroenterology that made the lay press. If I remember correctly, the authors used blood samples from people who lived on an airforce base 50 years ago. They found that Celiac disease is more common now than it was 50 years ago. They also found that those with undiagnosed celiac disease (therefore eating gluten) were 4 times more likely to die an untimely death than those without celiac disease. I looked up the citation for you -Gastroenterology; July 2009 137(1); pp373-374. That's the only one I know of off the top of my head. Of course, anemia, osteoporosis, decreased night vision, infertility, intestinal lymphoma, seizures, peripheral neuropathy, gluten ataxia, and other autoimmune diseases as well. From personal experience, like so many others with Celiac, I also have "silent" Celiac disease. By the time I found out I had it I already had developed ulcerative colitis and autoimmune hepatitis. As an adult I don't think the gluten free diet is difficult to follow. As someone who ate a lot of gluten, I honestly don't miss any foods. At first it seems overwhelming but I got used to it pretty quickly. You'd be surprised how many delicious gluten free foods are out there. As a mom of two girls, if either of them develop Celiac disease, " silent" or not, I'll definitely put them on a gluten free diet because I'd hate for them to develop any health problems just because they ate gluten. Good luck to you.

[rosetapper23]

You've received excellent information and advice above, and I also believe that it's in your best interest to go gluten free. At first, you'll grieve for some favorite foods, but then you'll begin to enjoy the diet (which is very healthful) and find it easy. I no longer miss any particular food, especially since gluten-free versions are available.

I would venture to guess that after you've been on the diet for six months or longer, you'll have some type of negative reaction to eating gluten. For many of us, the longer we go without gluten, the more sensitive we become to even the smallest amount of cross-contamination. Because you're not sure if you wish to follow a gluten-free diet, I would strongly recommend that you try it for at least six months and then eat a small amount of gluten. I think you'll have your answer then. For many of us, the disease was "silent" until, all of a sudden, we began having terrible symptoms--some of those symptoms can remain for life even on a gluten-free diet. Why take that chance? Count yourself as extremely fortunate that your doctors caught this before you lost your health. Probably 99% of the people on this forum wish they'd had such a lucky encounter with a doctor before the symptoms began. You are so VERY fortunate--please don't throw away the precious gift of health you've been given by your alert doctors.

[Real1]

Thanks all for taking the time to respond. Celiac disease is quite perplexing. With a huge range of symptoms and issues. I share a lot of common issues with others, such as Hashimoto's thyroiditis, anemia, tendonitis that comes and goes,..but I still run about 5 miles a day, play indoor soccer once or twice a week, have a full time job, 3 kids and generally feel happy and healthy. I feel badly for all the people on this blog who suffer so much from celiac disease and went so many years without a diagnosis. A six month test of the gluten free seems like a reasonable approach. But, one more night one gluten. So Starting Jan. 1, 2011 I will see how it goes.

[T.H.]

I hope that going gluten free will persuade you to continue to do so.

I think you are very right in thinking the celiac research is in the dark ages - or more that it is only in the beginning stages. No drugs for the disease means no money from drug companies for research, so it's a slow, slow process. Although from the research I've seen?

I think one of the problems with silent celiac disease is that some of the problems from this disease only show up when it's too late. And some of them can cause life long pain and disability. From the personal front, I can offer up anecdotal evidence, anyway.

My father - a silent celiac - was very physically active, every day. Big, muscular, healthy man. Then in the span of about 5 years, his body just started falling apart. Increasing depresion. His joints deteriorated, the discs in his spine deteriorated, he developed arthritis in his spine, damage to his lungs.

None of this is reversible, and none of it was detected until there was no way to repair the damage, whether he went gluten free then or not. He has a cane, he has an inhaler, and he has lots and lots of pain pills now, for the rest of his life.

Me? I was also a silent celiac. I had similar problems with my back, although not as severe, because it was caught earlier and I went off gluten. However, another issue that I had, which is a problem for silent celiacs, is that whether you notice it or not, a celiac has a slightly lowered immune system. And as such, you are more vulnerable to certain complications with certain diseases. I caught a disease that usually stays in the lungs and is gone within a month or two. Instead, it escaped my lungs, invaded my muscles, and laid me out bedridden for nearly a year. It will remain in my body for the rest of my life, as a result, and can resurge at any time.

Again...there's nothing to be done about this until it's too late to fix.

At the time, undiagnosed, I remember the doctors scratching their heads and saying: we don't understand it. You never see the disease do this except in people with lowered immune systems. It's very strange.

I know that going gluten free sounds like it sucks, but...well, actually, here. You might want to check this out:

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

These are a list of lots of the symptoms of celiac disease, many of them the ones that silent celiacs have. My daughter was also a silent celiac, and I've been stunned by how many of the mental and emotional symptoms she actually had, that disappeared on the proper diet. I always thought they were just how she was made. You might find something similar in yourself. Perhaps not, but the next 6 months might show you something new.

Either way, I hope it works our for you. And I hope that last gluten free meal was AWESOME.

[SaraKat]

I don't have any GI issues- I just get a pain in my left side from time to time- never have stomach aches/diarrhea/constipation/etc. I am shocked that gluten can be causing so much damage, but my GI Dr showed me the pics from the biopsy and my intestines are really bad. So, the damage is being done even if you have no symptoms and that is scary to me. Being gluten-free isn't that bad. I have actually lost weight and have more energy (I run a lot too). I have been eating much healthier- more whole foods and less processed.

Good Luck!

[Laura9]

Shauna,

Could you tell me which disease or virus you are referencing? Thank you.

[T.H.]

Shauna,

Could you tell me which disease or virus you are referencing? Thank you.

Valley Fever. The official name is Coccidioidomycosis - I developed disseminated coccidioidomycosis. I was pretty darn lucky, actually, because my body slowly managed to overcome the fungus for the most part for the few years before I was diagnosed with celiac disease and my body finally managed to get as healthy as it's going to.

There's an organization that discusses it, here:

http://www.valley-fever.org/valley_fever_valley_fever_org_background.html

[Blvr]

On 12/30/2010 at 10:43 AM, cassP said:

 

you mean "silent" as in asymptomatic right? if you tested positive- it is still ACTIVE even tho its silent. please stay on this forum and soak everything in-> there is a wealth of information on here- and plenty of reasons why you should go gluten free even tho you are not suffering stomach wise.

 

Celiac disease can cause so so so so so much more than stomach pain- it can lead to intestinal lymphoma, stomach cancer, neuropathy, dementia, etc....

 

depending on what other genes you have-> Gluten can also trigger additional Autoimmune Diseases including Diabetes type 1, Autoimmune Liver Disease, Lupus, MS, Psoriatic Arthritis, Crohns, etc...

 

it is extremely common for one to develop more than 1 autoimmune disease. i have also been dx with Hashimoto's Thyroiditis... and im hoping the Autoimmune festival stops with those 2 for me.

 

please go gluten free- and know that you are actually in the majority of those with Celiac (5/6 of Celiacs reportedly have no stomach issues). it WILL lead to other health issues if you continue to eat it- you already had the anemia. consider yourself blessed and lucky to have gotten the diagnosis so you could get a head start on your health

I have Hashimoto's Thyroiditis and have been tested positive for Celiac Disease (Silent).  I had anemia, but it has been resolved with iron tablets.  I have no symptoms.  It is very difficult for me to want to be gluten free.

[cyclinglady]

1 hour ago, Blvr said:

I have Hashimoto's Thyroiditis and have been tested positive for Celiac Disease (Silent).  I had anemia, but it has been resolved with iron tablets.  I have no symptoms.  It is very difficult for me to want to be gluten free.

Welcome!  

  I met with my GI for a colonoscopy (cancer screening) because I was 50 years old.    My GI suggested getting an endoscopy and a celiac blood test as well since I was anemic and had been most of my adult life.  I was shocked!  I had taken iron tablets in the past, but my anemia always came back (iron-deficiency).  I also have Hashimoto’s as well.  

Within a few months on a gluten free diet my iron-deficiency anemia resolved.  My enlarged thyroid and nodules (had for 15 years) also resolved.  Unfortunately, my thyroid was destroyed, so I still need a daily thyroid replacement.  

But after going gluten free for months, I found that any exposure to gluten gave me more traditional GI symptoms.  I bet you might discover some symptoms that you never would have attributed to celiac disease.  

Glad you are here.  Happy to help you on this new journey!  

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Edited November 19, 2018 by cyclinglady