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

28 Yrs. With Sprue

nate78

By nate78
in Coping with Celiac Disease

Recommended Posts

nate78 Rookie
nate78
Posted

Recently I decided to find out what was the matter with my stomach no matter what. I went to the hospital and got records all the way back. When I was an infant\toddler I had terrible diareah. A potbelly and was skiny. My mother took me to many doctors, finally to a new pediatrician. He put me in the hospital and did alot of tests. The biopsy confirmed sprue. I was never put on the diet. I grew up and everyone said my you sure are skinny, but you sure do eat alot. When I was 10-15 I had a terrible rash on my pubic area with the little red blisters allover. I didn't know what it was. It gradually went away after many years. I have gone to doctors for the following, deformed feet, hypotention, depression. I have been to 5 different pschiatrists. and been diagnosed add,bipolar, depressed, all for the past 6 yrs. I told most of them that I had a gluten intolerence as a kid, some just wrote down wheat allergy in there notes. I told them I just feel sick, is there anything that can be making me sick and deppressed. I persuaded my doctor to give me a blood test after much skepticism on his part, after I had came across this forum. He gave me the gladian antibody test. I was on a glutten free diet 3 weeks prior and the test came back neg. I told him I ate a bunch of bread the day of the test. he said it shouldn't matter. I was them very stumped. That is when I looked back to my records from 1983. Bingo there is the diagnosis. That explains why people called me starvin Arvin among other things and why my brothers are twice my size. Also why I can and always have drunk an 20 oz. soda in 30 secounds and then look for more, and why at 22 yrs old 5 11 I weighed 125 pounds. I noticed some of the doctors circled that in there records, weren't they smart. I have now been on the diet 3 weeks again. Stomach is better. good bye

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

Celiac.com Sponsor (A8-M):


hez Enthusiast
hez
Posted

Welcome to the board! There are several people on here like yourself where it took years to get a dx. I am so sorry you suffered for so long. Here is to your good health going gluten-free!

Hez

Lymetoo Contributor
Lymetoo
Posted

Isn't our medical system full of geniuses!!? it took most of my life to finally be dxd with Lyme disease, and then found out rather late about my celiac disease. For the most part, I was responsible for the diagnoses. Pitiful indeed!

You will continue to improve and be glad you pursued this! Good luck!! :)

Carriefaith Enthusiast
Carriefaith
Posted

I am so sorry that you went through that. I'm really glad to hear that you found an old diagnosis of celiac disease and that you are on the diet and noticing improvements.

blueeyedmanda Community Regular
blueeyedmanda
Posted

Welcome to the board, you will find a lot of help from everyone here.

tarnalberry Community Regular
tarnalberry
Posted

welcome to the board! I'm glad to hear the diet is helping your symptoms!

Ursa Major Collaborator
Ursa Major
Posted

I can't believe that you actually got a diagnosis, but nobody must have told your mother that you need to eat a gluten-free diet! I am glad you figured it out now, and are starting to feel better.

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

Celiac.com Sponsor (A8-M):


babygirl1234 Rookie
babygirl1234
Posted

welcome to the borad and im happy your feeling better

dagreen Newbie
dagreen
Posted

Hi,

I'm 21 and have celiac disease. You might want to go get a bone density test as well. I was told that by other celiacs in May 2006 when I went to the Toronto Celiac Convention, before I knew for sure that I was celiac. In June 2006, found out for sure I had celiac disease, got a bone density scan, and I am missing bone in my lumbar spine. You might want to get a bone density test, because you can lay bone down until approximately 30 years old I've been told.

Danielle

Rebecca47 Contributor
Rebecca47
Posted

WELCOME TO THE BOARD

TOOK MY DOCTORS ALL MY LIFE

I WAS SICK ALL MY LIFE NO ONE FIGURED IT OUT TILL AUG LAST YEAR.

STARTED GETTING REALLY SICK LAST FEW YEARS. LAST YEAR THE WORST

NOW FEELING WAY BETTER AND SO WILL YOU :rolleyes:

I AGREE WITH THE BONE DENSITY IT IS VERY IMPORTANT !!!!

I WISH I FOUND OUT YEARS AGO ABOUT MINE. I TAKE LOTS OF VIT D AND CALCIUM EVERYDAY BECAUSE OF IT AND ACTONEL

amybeth Enthusiast
amybeth
Posted

Nate78 ---

When I was diagnosed in my late 20's, I also tested all my vitamin levels, my thyroid, and my bone density.

Turns out I was extremely deficient of nutrients my body needed b/c I had been sick so long! I needed weekly B12 shots at first - and still get them monthly now to maintain appropriate levels.

I need a high amount of daily calcium and my thyroid is borderline - being monitored.

I'm so glad you advocated for yourself! And ended up with a positive outcome!!

You may want to consider some of these tests, as well.

Glad you are feeling better!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

      Gluten related ??

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

      Gluten related ??

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

      My only proof

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

      My only proof

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

      Gluten related ??

      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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    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
      Gluten related ??

      By AlwaysLearning · Posted

      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
      Gluten related ??

      By Colleen H · Posted

      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
      My only proof

      By Jmartes71 · Posted

      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
      My only proof

      By AlwaysLearning · Posted

      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
      Gluten related ??

      By AlwaysLearning · Posted

      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.