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
      131,984
    • Most Online (within 30 mins)
      7,748

    MARYANN RICHARDS
    Newest Member
    MARYANN RICHARDS
    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
      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--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.