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Age Of Diagnosis?


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Mrs. Smith Explorer
Looking back I'd say my symptoms started when I was 15 after I had a severe case of mono. I was just diagnosed though back in October. I'm 25 and very thankful I got my diagnosis now. Some of the stories on here from people who waited a life time for a diagnosis are bad enough to make me cry!

Diagnosed after a BAD episode at age 28. I think mine also started in teen years. I had terrible D after eating cream of wheat. Infertility and miscarraige were some signs and always gastro symptoms. In March of 2008 I started having muscle pain and tingling. All are improving 3mos gluten free. My Dad also has Diverticulitus and IBS. I wish he would get tested for Celiac, too.


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Wenmin Enthusiast

Diagnosed at 41. Although I've suffered for the last 6-7 years. GI doctor could not find anything and kept telling me I had Acid Reflux. I was in for my annual OBGYN visit and was telling my doctor some of the symptoms I had. He suggested I go home and look up Sprue Disease on the web. The more I read the more I could see myself. Did some intensive research on the net for about 3-4 days. Then went to see a nutritionists. She recommended that I see a GI doctor in another larger city that specializes in Celiac.

I have never been back to my GI doctor. But, I have gone back to thank my OBGYN! HE WAS THRILLED!!!

princesskill Rookie

i was diagnosed over the last year between 25 and 26 years old. it was sort of by fluke, i have polycystic ovarian syndrome, and my reproductive endocrinologist saw that i was severly deficient in several vitamins and was anemic, between her and my GP we figured it out and tests confirmed.

ranger Enthusiast

I was 62 when self-diagnosed with celiac. Had been sick for nearly 2 years. Constant D., wieght loss, extreme lack of energy, many symptoms. I found this sight and tried gluten-free diet and felt much better. Went to Doc who took blood test (only 1 ) that showed up neg. for celiac. Of course I knew it would, because I had been on the gluten-free diet. Took the huge leap of making an appt. with Gastro guy. Went on gluten challenge for 3 weeks ( I was instructed to eat 1 piece of bread a day) for endo. Took 1 biopsy and declared neg. for celiac.. Of course, by this time, I was sick as a dog! And then I found out that he had used the blood test from the first Doc.! Went back on gluten-free diet, have gained 11 lbs., and can finally get awy from the bathroom! Growing up, I don't recall any health issues, and I was a healthy wheat-eating adult untill this. I did have a problem with panic attacks (controlled)and consantly cracked fingers, but dismissed those. By the way, my ears itched consantly! Wierd. But, I feel so much better now. Just started B-12 4 days ago, and can feel the difference. I don't like Doc.

ranger Enthusiast

Forgot to mention. Sister dx with celiac at age 12. Mother dx with chrons, but I think she was probably celiac. If they can't get it now, they probably goofed in the 70's.

ranger Enthusiast

Forgot to mention. Sister dx with celiac at age 12. Mother dx with chrons, but I think she was probably celiac. If they can't get it now, they probably goofed in the 70's.

Lollie Enthusiast

I was 32ish....


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cyberprof Enthusiast

Age 48

I believe that I had first symptoms at 17. Started getting arthritis pain, and was tentatively diagnosed with Rheumatoid Arthritis. Had terrible stomach cramps (writhing on the floor) two-three times a week, mainly after eating big meals-- I thought it was stress or eating too much.

Other symptoms were frequent big D, depression, arthritis, anxiety, frequent mouth sores, early(quick) menopause.

~Laura

Glutenfreegirly Newbie

Hello my name is Rachel and I was 13 when I found out I had Celiac. I am a freshman and I have proudly been eating gluten free for two years. :rolleyes:

emcmaster Collaborator

21.

I had been sick for 2-1/2 years before that.

I feel fortunate that I wasn't sick for that long before I went gluten-free. Could have been a lot worse.

puggirl Apprentice

I was 27, in Aug, 08 is when I was diagnosed.. I've been gluten-free ever since... Except for acouple accidentel Glutens... But have gotten through it...

I've had Bad stomach problems since I can remember, young like 5-6yrs old.. I used to be a very nervous kid so I always had belly aches. I finally got FED-UP with the stomach pains I went to the doc and we figured this was my problem, and it seems to help for sure.. Every once in awhile I still get sick and have bad nights, but for the most part I've been better, I will find out more when I get a colonoscopy in a few weeks "Yeah Cant wait :rolleyes: "

mattathayde Apprentice

found out at 18 april 08(just a couple months before my 19th), i have had symptoms for years, probably all my life just never realized it. took a few months before i was trying to be 100% gluten-free but i did eat pretty gluten light and started to see some improvement, been trying to go 100% gluten-free since july of 08 (last gluten thing i can honestly remember eating know it had it was on july 4th my brothers girlfriend (who past away in aug from an aneurism) brought awesome cup cakes, looking back was well worth it).

i have been accidently glutening my self for a while though, stupid kellogs cornflake crubms i was using in a meatloaf recipe made with malt.

my mother had a wheat allergy when she was young and my dad has a sensitivity to wheat/gluten but neither have been check in any way for celiac disease yet.

only way i found out was an alternative medicine person we go to, my old doc said i had IBS and my current doc said theres no reason to do a test if gluten-free works for me the only thing the tests will do is tell us what we already know, raise insurance rates, and make me suffer a month of gluten

-matt

lenjac Newbie

I was 33 and kept complaining of reflux issues that the GI doctor would not agree with. Finally family practioner order the celiac blood panel. Felt soooo much better w/in 2 weeks! Have been gluten free for over 4 years.

To all the newbies, it gets easier as you go. But every accidental glutening seems harder to handle.

calgaryjill Newbie

Diagnosed in Nov 2002 at 48 but have never had gastric symptoms. Anemia was the red flag that got my Dr interested. Iron levels had been very low for many years even though I was peppy and had no troubles keeping up with the kids. I could pump the iron levels up with iron supplements but not sustain it. Even after being gluten-free for a year though my irons levels didn't recover and it was put down to my menstrual flow. Now that I'm done with that, iron levels are fine. Because I don't ever have a gastric reaction to gluten I sometimes sneak a taste of forbidden foods and don't worry too much when we travel although I do try to avoid gluten whenever and wherever I can. I know I'm tempting serious consequences but am willing to take that risk.

frecOregon Newbie

I was 46, but I'd had dangerously unpredictable digestion since college. One doctor told me I had irritable bowel--I said, "Isn't that just a medical term for we don't know what's wrong with you?" I gave up milk and that helped. I started eating bananas, rice, and eggs before any major event as they were the only foods that I knew didn't make me sick. A new young doctor referred me for a test when my reflux got so bad that I lost my voice for several months.

CMG Rookie

I was 43. First figured out that I did better on low-carb diet back when I was 30. At that point I had had many symptoms for 10 - 15 years. So, somewhere around 25 years of symptoms before figuring out that gluten is the culprit - including migraines, brain fog, vertigo, neuropathy, rheumatoid arthritis, possible sjorgrens syndrome, reflux and all the other digestive symptoms, and the list goes on.

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      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Are Lindt chocolate balls gluten free?


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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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