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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.