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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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muffinx

Celiac And The Spleen

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I found this:

Many studies have reported decreased spleen size (hyposplenism) in adults with celiac disease.

http://www.enabling.org/ia/celiac/summary.html

Gretchen

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How do they check your spleen? Ultra-sound, x-ray? And what would happen to you if your spllen was small? Just curious. I'll go to the link you posted Gretchen, maybe it will answer my questions.

God bless,

Mariann

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Hi everyone

had to reregister i was itching to type to you all..lol i was practically levitating when i found this forum and your replies to my post

ok here goes without scaring the hell outta u all

4 months ago my life changed i lost my mum she was 58

8 years ago she suffered very bad arm and shoulder pains and EVENTUALLY the doctor diagnosed her with fibromaralgie (bad spelling) which by the way only diagnosed this after she diagnosed herself after research

for a few years she was on painkillers then took plurecy and had rapid weighloss went from 11 stone to 6 stone, she was like this for a year and then her doctor diagnosed her with celiac, she stuck to her gluten free diet faithfully and for the next 2 years she didnt put on weight but the doctors dint send her for any more tests.

6 months ago she started taking very bad jaw pains( at first she just thought it was toothache) and also chest pains,then when she was in agony her doctor said it was a condition called trigeminal neuralgia, they never even sent her for an MRI scan, just wrote her a prescription for anti convulsants (typical of UK GP's) so when eventually the whole side of her face was numb and her speech was lost they sent her for a MRI

2 days later we had an appointment for the results, firstly they said they thought it was breast cancer, or maybey lung cancer and pointed it with a glare and frown she was a 5 a day smoker (what a blow for my mum) or possible a condition called neuro sarcasiodosis and they would put her on steriods and she had to have all sorts of MRI and bone scans that week.

throughout that week dont forget my mum although had a new lease of life after the steriods still could not speak to me, can you imagine how heartbreaking that was for both of us!

so after the test she was admitted to hospital for a brain biopsy as they thought it might have been a brain tumour at that point, they did not do it that weekend and let her out for the weekend, she took a viral infection at home and went back to the state she was in before the steriods ( which was horrific) you cant imagine out of respect for my mum i will not say what she was like! needless to say she nearly dierd at home that weekend!

she then was in hospital for 2 months they did not get anything from the brain biopsy they put tubes down her throat to see if they could get a specimin from her lungs they even asked us if she had been to america in the past few months???? they even thought it might be TUbercilosis!

they eventually came up with a condition called central nevous system vascilitis which is inflamation of the blood vessels and she basically was having mini strokes

i still have nighmares about the state my mum was in at the hospital as it was not diagnosed as a cancer she could not get in a hospice and have private time with her family and friends and more privacy , she was in a public ward for all to see!

she died in hospital i wasnt there i didnt make it on time i was 15 mins late!

they asked to do a post mortem i agreed and 3 months later we all attended thinking they were going to tell us it was a sinister tumour

IT WAS THE CELIAC!!!

the evidence was in her spleen they said it was the size of a walnut!!

they said that you can only detect the enlarging of the spleen not the shrinkage of it and with her spleen so small that she could not fight infection and she somehow caught the virus you find in chickenpox or it could have been stress a lot of things could have done it, jeez the common cold could have....plurecy nearly killed her 2 years earlier!

how tragic, my mum died of this condition, i do not want to scare the hell outta you all i just thought i would post this to let you all know about 2nd third and forth opinions from your doctor.

i miss her and think about her every day, if my mum had had a more switched on doctor she could have had her spleen removed and been on low dose antibiotics for the rest of her life,,tragic!

hugs

muffin

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But I'm guessing that you don't need intestinal damage before this happens. having been in for many ultrasounds due to gyn issues, every time the doc comments on the small size of my spleen... never thought about it before, but perhaps there's an answer

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