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28 Yrs. With Sprue

nate78

By nate78
in Coping with Celiac Disease

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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

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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.

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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!

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      celiac.com support

      By MichaelDG · Posted

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
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