Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Diagnosed When?


steadyed

Recommended Posts

steadyed Newbie

Is there anyone here that diagnosed with celiac disease when they were very young? I happenned to be diagnosed way back in 1959 by my pediatritian who just happenned to hear about it. There were NO tests, samples, are anything like that done at all. My growth was stunted since I was weaned and had drastically lost weight, and this was the only possibility that wasn't deadly. Fortunately, I grew several inches and gained several pounds within the next few months after I was put on the so-called "banana diet", so he happenned to be on the money.

Ed


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Welcome to the board! Wow...46 years. That's impressive! I've been gluten-free since February 2004--a newbie in comparision to you :D

flagbabyds Collaborator

I was diagnosed when I was 20 moths old but that was only in 1992, but still I don't remember what gluten foods taste like. Which I think is a plus, because I don't crave it :)

KaitiUSA Enthusiast

wow thats a long time!! I was diagnosed in January of 2004

Lisa Ann Apprentice

Ed - I was diagnosed in 1969 at 10 months old. However, they didn't know much back then and my mother never really told me the exact name of my disease. After I started thriving again she slowly introduced me to other foods. I've been eating gluten my entire life until recently I put it all together and went to the dr. I really had no other symptoms other than chronic diahrea and malabsorption (i'm very thin). Luckily, my dr. is knowlegable and gave me the blood test followed by an endoscopy. It scares me to think of the damage that was done during this time. I am now gluten-free and go back to see the dr. in a few weeks.

Ally2005 Apprentice

What is the bananna diet? Maybe I'll try it and see if my symptoms calm down!

ally

steadyed Newbie

HI Lisa Ann,

I know, there was almost no information on it, and that was the common treatment back then. I had the same treatment. Of course, I complained all the time about bread, annd it came to the point that my parents didn't even bother with it when it came to me. Of course, I continued eating the spaghetti, cake, and other gluten-filled goodied not knowing that it was damaging my digestive system.

I was incredibly lightweight as a child, and weighed only 65 pounds in the sixth grade, and it took another ten years or so for my weight to double. It wasn't until I learned more about celiac disease and started to try the gluten-free diet that I began to put on serious weight.

Ed


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Generic Apprentice

I was diagnosed when I was 13 (17 years ago). They knew a little more when I was diagnosed but not much. It was the last thing I was tested for, even though my mom thought it was what I had all along. She is a nurse and had done a lot of research.

steadyed Newbie

Ally, I don't think you'd want to try the banana dirt LOL :lol: Back then kids were taken off almost everything and were fed a diet of bananas and dry curd cottage cheese. After they started putting on weight and growing ther were slowly introduced to other, usually gluten infested, foods.

Ed

Ally2005 Apprentice

Yah, you're right...it doesn't sound so good, expecially the dried curd!

celiac3270 Collaborator
I was incredibly lightweight as a child, and weighed only 65 pounds in the sixth grade, and it took another ten years or so for my weight to double. It wasn't until I learned more about celiac disease and started to try the gluten-free diet that I began to put on serious weight.

Ed

Hey, that's what I weighed in 6th grade! At diagnosis in 7th grade I was at 70...barely. Since then I've gained about 27 pounds.....

Lisa Ann Apprentice

Hey, I feel pretty lucky - I'm currently weighing in at 126! It sounds like I may be the chubby one. haha

Seriously though... are most celiac disease people underweight or can you also be overweight? I'm wondering if this came from my mom or dad.

KaitiUSA Enthusiast

I'm about 110 right now....

You can be overweight, underweight, or normal weight

Weight gain and loss are symptoms...not just weight loss

Guest imsohungry

Very true Kaiti,

And often, people with Celiac also have other auto-immune disorders and health problems which may affect their weight too (also medication side-effects). :rolleyes:

-Julie ;)

celiac3270 Collaborator

Kaiti, how tall are you? ;)

egardner Newbie

Anyone who can help, I posted a note in Pre and testing. I really need some advice.

winki4 Apprentice

Diagnosed 10 years ago (1995) at the ripe age of 40. Finally diagnosed by an article in Diabetic Forcast magazine my mother brought into the hospital. Already lost 50 pounds and a breath away from dead. Doctors sniffed at it but agreed to do a blood test. Thank God! I ws ill for first 40 years of life and now feel like I have a new lease on life.

Wendy

flagbabyds Collaborator

I was 60 lbs in 6th grade about and since then I have grown about a foot, and only gained 30 lbs, They think that my stunted growth was because I was so malnourished when I was a baby before they diagnosed me with celiac. So I am kind of close to 100 YAY!! And yes, I am 5'7" way too underweight.

KaitiUSA Enthusiast
Kaiti, how tall are you? 

celiac3270- I'm 5'3....so weight wise I'm in the normal range :D

Carriefaith Enthusiast
Fortunately, I grew several inches and gained several pounds within the next few months after I was put on the so-called "banana diet", so he happenned to be on the money.

I've read about the banana diet and the old celiac days. It must have been hard to be a celiac back then, there wouldn't have been as much gluten-free as today that's for sure. I think us celiacs have it pretty good these days! We have a lot of options...

:D

celiac3270 Collaborator
celiac3270- I'm 5'3....so weight wise I'm in the normal range 

Oh, okay, thanks. Sorry if it sounded nosy or something--it just sort of gives meaning to a weight... ;)

I'm now 5'4", 97 pounds due to a multi-inch, double-digit pound gain since Feb. of this year. :D

Guest imsohungry

Molly,

I can relate to you. I am nearly 5'8" and have weighed as low as 95 pounds. It is not easy being as tall as we are and that underweight...actually "too thin." I'm in my late twenties, and despite putting on over twenty-five pounds, I'm still thin (but at a much more stable weight now). Take care of yourself! -Julie

KaitiUSA Enthusiast
Oh, okay, thanks. Sorry if it sounded nosy or something--it just sort of gives meaning to a weight... ;)

I'm now 5'4", 97 pounds due to a multi-inch, double-digit pound gain since Feb. of this year. :D

Nope you didn't sound nosy....your right it gives a meaning to the weight... I just forgot to put it in the 1st post..that might have helped...

Most of my family is on the short side of normal so I wasn't expecting to be tall to begin with.

I've grown an inch I think since being diagnosed.

That's awesome to hear you have gained and got taller...I'm very happy for you:D

once and again Rookie

I was diagnosed - not sure how - in about 1947 - when I was about 18 months old. And I was on the banana diet! I don't remember it, just was told that I had a mashed banana in an ice cream cone - yeah, I know I shouldn't have had the cone, but my mom was told to avoid fat. My parents weren't told about gluten and they were also told I would outgrow it. I've read somewhere that gluten wasn't really recognized until sometime in the 50's.

It seemed as though I had outgrown it, although I have always been underweight. At 22 yrs I weighed 95 lbs. at 5'2" I also never liked "bread" products that much. For example, when my famly got White Castle hamburgers, I really wasn't that excited, didn't really care for pasta or pizza! So much of my life I avoided most bread products, although I really liked to bake - just gave most of it away and did it as therapy.

I had always had what I called "a sensitive stomach" and can remember many bouts of diarrhea although they would stop after a day or two. I had some constipation and lots of gas as well as DH about 2.5 years ago. I had a colonoscopy and was put on Zyrtec to control the "hives". I was also always hungry. When I went back after a year on the Zyrtec, I mentioned to a new allergist that I had been diagnosed with celiac as a child but wasn't sure if it was the right diagnosis. She ordered the correct blood test. My gliadin level was ten times higher than it should have been and when I had the endoscopy my GI said I was at level three! By that time I was 56 years old.

So, it could have been worse, if I hadn't naturally avoided certain foods. I will not eat bananas but surely do miss the cookies and cakes I baked. The texture of gluten-free baked goods just isn't the same.

once and again Rookie

I was diagnosed - not sure how - in about 1947 - when I was about 18 months old. And I was on the banana diet! I don't remember it, just was told that I had a mashed banana in an ice cream cone - yeah, I know I shouldn't have had the cone, but my mom was told to avoid fat. My parents weren't told about gluten and they were also told I would outgrow it. I've read somewhere that gluten wasn't really recognized until sometime in the 50's.

It seemed as though I had outgrown it, although I have always been underweight. At 22 yrs I weighed 95 lbs. at 5'2" I also never liked "bread" products that much. For example, when my famly got White Castle hamburgers, I really wasn't that excited, didn't really care for pasta or pizza! So much of my life I avoided most bread products, although I really liked to bake - just gave most of it away and did it as therapy.

I had always had what I called "a sensitive stomach" and can remember many bouts of diarrhea although they would stop after a day or two. I had some constipation and lots of gas as well as DH about 2.5 years ago. I had a colonoscopy and was put on Zyrtec to control the "hives". I was also always hungry. When I went back after a year on the Zyrtec, I mentioned to a new allergist that I had been diagnosed with celiac as a child but wasn't sure if it was the right diagnosis. She ordered the correct blood test. My gliadin level was ten times higher than it should have been and when I had the endoscopy my GI said I was at level three! By that time I was 56 years old.

So, it could have been worse, if I hadn't naturally avoided certain foods. I will not eat bananas but surely do miss the cookies and cakes I baked. The texture of gluten-free baked goods just isn't the same.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,080
    • Most Online (within 30 mins)
      7,748

    SheenaG1
    Newest Member
    SheenaG1
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.