Jump to content
  • 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):

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
      134,079
    • Most Online (within 30 mins)
      10,442

    jchamp080
    Newest Member
    jchamp080
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...