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Asymptomatic Celiacs- Where Are You?
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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.livingwithout.com/media/newspics/the_celiac_iceberg.jpg

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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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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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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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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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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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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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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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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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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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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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