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

Recommended Posts

nate78 Rookie

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

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

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

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

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

tarnalberry Community Regular

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

Ursa Major Collaborator

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

welcome to the borad and im happy your feeling better

dagreen Newbie

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,025
    • Most Online (within 30 mins)
      7,748

    Amari Love
    Newest Member
    Amari Love
    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

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.