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At What Age Were You Diagnosed?


fisharefriendsnotfood

At What Age Were You (or Your Loved one) Diagnosed?  

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fisharefriendsnotfood Apprentice

I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie


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  • Replies 66
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Lisa Mentor
I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie

<{POST_SNAPBACK}>

Interested in seeing the results....good idea.

Lisa B.

fisharefriendsnotfood Apprentice
Interested in seeing the results....good idea.

Lisa B.

<{POST_SNAPBACK}>

Thanks.

-Jackie

Eliza13 Contributor
I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie

<{POST_SNAPBACK}>

Oh boy....are you ever lucky. I learned this year at 29, after many medical complications.

KaitiUSA Enthusiast

I was diagnosed at 16...I am now 18

Carriefaith Enthusiast

I was 22.

ianm Apprentice

I was 36 and on the verge of losing everything. You are one of the lucky ones to have been diagnosed so young.


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ravenwoodglass Mentor
I just wanted to make this poll because I fell like I'm one of the only ones who was diagnosed very young (2 years of age). Okay, Thanks!

-Jackie

<{POST_SNAPBACK}>

Your so lucky. I was 45 and had been sick for 15 years, although the depression. DH and nuerological effects started when I was about 7. They couldn't figure out why I had poison ivy all year round. Duhhh. I went through years of very painful shots for that. I was almost totally disabled for the last 5 years before I was diagnosed. And I am not unusual :angry: .

2Boys4Me Enthusiast

My son was 5 (and 3/4) when he was diagnosed. So far, he's the only one in the family with it.

jerseyangel Proficient

I was 49 (still am) and have had problems for 20 years. They got a lot worse 2 yrs. ago.

Rachel--24 Collaborator

34 and like Ian...on the verge of losing everything. Back on track now.

jrom987 Apprentice

I am 46 and have had symptoms for years and years. I am sure that everyone thought I was a hypochondriac, even my family and doctors! In a weird way, I am glad they found something and now I can "cure" myself. I have so much to learn about being gluten-free but I am off to a good start and this place is such a God send! Thank you!

burdee Enthusiast

I'm 58, was diagnosed 18 months ago, but had accepted most of my symptoms as 'normal for me' UNTIL I experienced increasing excruciating abdominal pain after hemorrhoid surgery. That surgery was necessitated by chronic constipation which was due to casein intolerance which I suspected 50 years ago. <_<

BURDEE

MySuicidalTurtle Enthusiast

I was 17 when I was diagnosed.

celiac3270 Collaborator

Diagnosed at 13.

psawyer Proficient

I was 46 when given the diagnosis, but I had symptoms for years before that. I was an undiagnosed celiac for at least 5 years before that. Unexplained gastrointestinal problems since ange 15. Now I think I know what the cause was, but at the time the doctors had no clue.

jmarie Newbie

Diagnosed at 29 after 12 years of severe arthritis and anemia. At 17, they diagnosed me with "autoimmune disorder - unspecified", and they treated just symptoms for years. I assumed my stomach distress was psychosomatic/stress-related until it became so severe that I was vomiting after I ate anything. It would have been nice to be diagnosed earlier, but my gluten-free diet doesn't seem to be helping too much, either.

sonjaf Rookie

Diagnosed at 35, after having severe symptoms for 3 months. You are lucky you found out so young. I hate having to change my entire lifestyle at my age! :P

happygirl Collaborator

Diagnosed at age 23, right after I was married! Very sick for 10 months before diagnosis. But, had mild GI problems during college.

eherhold Newbie

Diagnosed at 37. Prior to that had problems since age 20 or so. More severe the last 5 (after my daughter was born).

Nicolette Rookie

Diagnosed this year, aged 33, after twenty-five years of symptoms.

Marjolein Newbie

I am now 39. I was diagnosed when I was 2 and the doctor said I was cured when I was 9. Was not realy healthy my whole life. Got sick during the hollidays 3 months ago and was diagnosed with.............celiac. So I am learning to eat gluten-free again.

Marjolein

FaithInScienceToo Contributor

I was 47, when I self - diagnosed in January '05, and when I was officially diagnosed in Feb 05 -

I went through 2 decades of severe problems.

I am SO happy for those that got diagnosed earlier in life :), and I am also SO happy that I finally found out what was 'wrong with me'...

Love, Gina

TheLibertarian Rookie

<_< I was diagnosed just recently at 25. I was really fortunate because I work in the health care industry and had access to software and dictionaries and reference materials I could research my own symptoms on. If I had'nt, I would never have gotten help.

All-time worst doctor story:Right after getting sick, I noticed my abdomen seemed swollen and large compared to the rest of me. I knew I had been too sick to excercize but I knew this was'nt right. When I brought it up at the doctor's office, she advised me to "do leg lifts."

elonwy Enthusiast

Diagnosed at 27 after years of minor naggling health issues and one year of really bad health. Interestingly enough, my bad symptoms developed after I quit smoking ( diff thread). Seems like theres alot of us here in that age range.

Elonwy

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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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