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Age Of Diagnosis?


foodiegurl

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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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    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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