• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
TGK112

Asymptomatic Celiacs- Where Are You?

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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 !

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!!!

Share this post


Link to post
Share on other sites

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).

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,923
    • Total Posts
      943,521
  • Member Statistics

    • Total Members
      67,130
    • Most Online
      3,093

    Newest Member
    Lila heidinger
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hey Deb, In theory (based on some studies), your small instestine should heal pretty fast (within weeks), but often there is collateral damage that can take longer (like your bone pain).  For me, personally, a gluten exposure can set me back three to six months.  My antibodies can last over a year.  And worse, I now developed autoimmune gastritis and hives.  Yikes!   I had  some hip and rib cage pain when I was first diagnosed.  Two months later I fractured some vertebrae.  I had been undiagnosed for so long, that I developed osteoporosis.  I assume that once on a gluten free diet, your pain should diminish based on a strict adherence to the diet and  your previous experience.   I hope you feel better soon!  
    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.


      http://udisglutenfree.com/product-category/pizza-crust/
      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      https://www.califlourfoods.com/collections
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
  • Upcoming Events