Asymptomatic Celiacs- Where Are You?
Posted 28 November 2012 - 09:15 PM
Posted 28 November 2012 - 11:22 PM
Posted 28 November 2012 - 11:44 PM
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.
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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
Posted 02 December 2012 - 02:18 PM
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 !
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.
Posted 02 December 2012 - 03:18 PM
Posted 02 December 2012 - 05:13 PM
Posted 02 December 2012 - 05:24 PM
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.
Posted 02 December 2012 - 08:41 PM
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.
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?
Posted 02 December 2012 - 09:41 PM
"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)
Posted 03 December 2012 - 11:16 AM
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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