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Celiac And The Spleen

muffinx

By muffinx
in Related Issues & Disorders

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muffinx Newbie
muffinx
Posted

Hi to everyone on the board

Has anyone heard of the celiac condition shrinking the spleen at all?

x

muffin

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GEF Explorer
GEF
Posted

I found this:

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

Open Original Shared Link

Gretchen

gf4life Enthusiast
gf4life
Posted

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

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

Most likely an ultrasound, which I had for my spleen and pancreas...

muffinxx Newbie
muffinxx
Posted

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

Mydnyt Newbie
Mydnyt
Posted

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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      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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