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Asymptomatic Celiacs- Where Are You?


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#1 TGK112

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Posted 28 November 2012 - 09:15 PM

I have been following this forum for 3 months - since my diagnosis. Most people write about their various symptoms. I found this diagram fascinating - the article that went with it said that about 2/3 of people with celiac have no symptoms - such as myself. Most of these people get diagnosed in a round about way - in my case ruling out celiac being a contributing factor to my osteoporosis - surprise - it was ruled in! However - reading this forum, I feel well in the minority - so needless to say, I was surprised to see that I am actually in the majority.

http://cdn.livingwit...iac_iceberg.jpg
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#2 New Community Member

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Posted 28 November 2012 - 11:22 PM

Interesting you posted this today. I have celiac (symptomatic)...and just found out today my mother is on the edge of being osteoporotic. Also, she has some Italian blood (not sure if that contributes to the risk factor, think it might). Of course, asymptomatic, too. Good informational post but makes me worried for those who could have it and not know. Have you started following a gluten free diet and what was your reaction when you found out? Does celiac run in your family?
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#3 GottaSki

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Posted 28 November 2012 - 11:44 PM

I find the chart interesting, but take it a slightly different way.

Many of us have symptoms that are not "classic" celiac symptoms until the damage is quite severe. For me the really severe abdominal bloat came only a couple years before my diagnosis although I had a multitude of other symptoms my entire life - most I thought were just a bit of this or a bit of that -- I tried to dismiss them because the tests my doctors chose to run were all "normal" -- these minor symptoms got worse each decade. So perhaps I was asymptomatic until my 30s.

Only one of my children/grands had "classic" gastro symptoms -- we have all had different symptoms....so what is Asymptomatic? for classic symptoms? gastro symptoms? You had symptoms that led you to have celiac ruled out as a cause.

Much of the talk on this board is from folks like me that became very ill before celiac was considered or they found their key was gluten without the aid of doctors, but I have seen many, many posts from members that have no reaction to gluten ingestion -- it is quite common to hear members that talk of their concerns of not knowing when they may have ingested small amounts of gluten.

Stick around -- we come in all shapes, sizes and disease presentations.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 myquest7846

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Posted 02 December 2012 - 02:18 PM

I have been following this forum for 3 months - since my diagnosis. Most people write about their various symptoms. I found this diagram fascinating - the article that went with it said that about 2/3 of people with celiac have no symptoms - such as myself. Most of these people get diagnosed in a round about way - in my case ruling out celiac being a contributing factor to my osteoporosis - surprise - it was ruled in! However - reading this forum, I feel well in the minority - so needless to say, I was surprised to see that I am actually in the majority.

http://cdn.livingwit...iac_iceberg.jpg

Oh so true and nice to hear - I'm 58, and have lived with anemia, arthritis, migraines, and now osteoporosis. My Celiac was only found while looking for an unrelated problem. I couldn't believe it took all these years for someone to finally hit the nail on the head. But all my life I have been the one known for having an "iron stomach". Nothing really bothered me like what the other celiacs are describing, and I have no clue if I've been "glutened". It's like walking around with blinders on !
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#5 1desperateladysaved

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Posted 02 December 2012 - 03:18 PM

I am thinking that symptoms are a good thing! Couldn't osteorporosis and other problems be symptoms of celiac? I guess these wouldn't give you the instant confirmations, but perhaps a long trail of results?
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#6 auzzi

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Posted 02 December 2012 - 05:13 PM

I am classed as a Latent Coeliac, DD2 is classed as a Silemt [Asymptomatic] Coeliac, and DD1 is a [symptomatic] Coeliac. We all adhere to the gluten-free diet, but our 2x non-coeliacs eat any gluteny stuff they like, but household meals and baked products are all gluten-free.
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#7 Little Joe

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Posted 02 December 2012 - 05:24 PM

My diagnosis, too, came while looking for something else--it was quite a surprise. That said, my diagnosis is very recent so I am not sure how differently I will feel as my body adjusts to the gluten-free diet. My list of symptoms over the years are all very mild in nature and (outside of celiac) likely causes have been eliminated. Symptoms: migraines (stopped when I adopted a low-carb diet... long before my celiac diagnosis), mild swelling in legs, mild neurological/neuropathy type symptoms, palpitations, etc. OK, the migraines are/were not mild, they are/were debilitating but, at least in my case, low-carb seems to be trick for them. I think I might remember digestive-type symptoms before going low-carb (not gluten-free), but I was also heavy, out-of-shape, and ate very poorly. Since then, but before my diagnosis, my weight is better, my fitness is better, and I do not seem to have any such symptoms. Certainly, I did not seem to be experiencing any of the classic symptoms of abdominal pain, malabsorption/malnutrition, etc.

I, too, have read much about the (new?) trend of diagnosing more and more people with celiac disease who are not experiencing the classic symptoms of the disease.
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#8 TGK112

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Posted 02 December 2012 - 08:41 PM

Interesting you posted this today. I have celiac (symptomatic)...and just found out today my mother is on the edge of being osteoporotic. Also, she has some Italian blood (not sure if that contributes to the risk factor, think it might). Of course, asymptomatic, too. Good informational post but makes me worried for those who could have it and not know. Have you started following a gluten free diet and what was your reaction when you found out? Does celiac run in your family?

I have been gluten free since diagnosis - but for me it would be hard to really know how successful I am doing at it. I am looking forward to having another blood test and endoscopy in a few months ( 6 months from diagnosis) and am hoping that it will show some improvement.. My reaction when I found out - a bit of shock - it was just so unexpected. Celiac does not run in my family - however when hearing the news, my brother got himself tested - and found out that he has the gene, but not the elevated antibodies.
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#9 LauraB0927

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Posted 02 December 2012 - 09:41 PM

I was asymptomatic in terms of gastro symptoms but I've had anemia and other issues for quite a while. What finally led to the diagnosis was when I went to the GI after having some red stool, but that just turned out to be red food coloring from a slushie that I had the day before. Now after starting the gluten free diet I've become much more sensitive to gluten and can usually tell when I've had something that I shouldn't. I found that chart really interesting - I'm in nursing school and I need to do a teaching plan about a GI condition and naturally I picked Celiac disease. I plan on using that chart to demonstrate to the rest of my classmates that you don't always need to have abdominal pain to suggest Celiac disease. Thanks!!!
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#10 heather806

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Posted 03 December 2012 - 11:16 AM

I was severly anemic for years, and my low calcium caused tetany in my hands and feet and I was in the hospital for a week while they tried to figure out why...saw specialists for 4 years. Then this year, who came up with the idea that it could be Celiac? My best friend, who is not a doctor.

Craziness...

So I was asymptomstic gasto-wise (except maybe bloating here and there), but the anemia and malabsorption were my issues. Doctors were quick to blame periods or not eating right. (I was).
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