Re: celiac and other autoimmune diseases

[Guest guest]

Kris and others with celiac disease,

Just wanted you all to know that people with celiac disease seem to have an

increased chance of having autoimmune liver disease. there are three main

autoimmune liver diseases - primary biliary cirrhosis (PBC), primary

sclerosing cholangitis (PSC), and autoimmune hepatitis (AIH). Some seem to

think that the damage from undiagnosed celiac disease causes damage to the

liver and leads to the increased risk of autoimmune liver disease. Others

think that the increased risk is simply because if you have one autoimmune

disease, you are obviously at an increased risk for all autoimmune diseases.

Based on all the research I've done and info from my many doctors, you are

born with the genetic tendency for autoimmune diseases and various factors

throughout your life can trigger the autoimmune disease(s) into action. In my

case (and my sister's case) we got a gene from each of our parents that can

lead to autoimmune diseases. This is despite the fact that neither our mother

or father have any autoimmune diseases that we know of! The jury is still out

on what exactly triggers the various autoimmune diseases into action. Some of

the theories out there include

1. a certain virus or viruses trigger an autoimmune disease into action

2. environmental factors, such as chemical exposures trigger them into action

3. having a baby with a different blood type than the mother - when the

mother and babies blood interact, the mother's body fights the different blood

and results in spurring the autoimmune diseases can begin

4. having a baby with Rh positive blood when the mother has Rh negative

blood - basically reacts the same as # 3 above (coincidentally both I and my

ex husband's current wife have lupus. I was ribbing my ex about him 'giving

both of his wife's lupus and we started talking. Ends up that both she and I

have Rh negative blood and we both gave birth to a baby with Rh positive

blood! Both of us had only one pregnancy and one child. This is rather

bazaar in my opinion since lupus is not that common. Only a couple of weeks

before having this conversation with my ex, I had read an article about the

new theory that a mother with Rh negative blood having a baby with Rh positive

blood might be one of the things that can trigger lupus - in a woman who has

the genetic tendency toward autoimmune diseases)

5. some sort of hormonal action spurs the autoimmune disease(s) to begin

6. Because most autoimmune diseases are much more common in women and they

typically appear during child bearing years, they thing there is some sort of

hormonal link

Anyway, my whole point of this was to let you know that those of you with

celiac disease make sure that your doctor is keeping an eye on your liver

enzymes. If your liver enzymes are elevated to more than 2 times the normal

limit on more than a few occasions, a liver biopsy may be warranted.

In my case, I have the following autoimmune diseases - listed in order of

diagnosis

1. systemic lupus (SLE)

2. antiphospholipid syndrome (APS) an autoimmune clotting disorder that can

cause an increased risk of low platelets, blood clots, strokes, heart disease,

and miscarriage. I have been on coumadin (blood thinner) since September

2002, only 2 months after finding out I have APS. I had my first diagnosed

mini stroke/ transient ischemic attack (TIA) in March 2004. I truly believe

if I had not been on coumadin, it might have been a full blown stroke.

3. autoimmune hepatitis (AIH)

4. Immunoglobulin G (IgG) deficiency - this isn't necessarily an autoimmune

disease but is linked to the same genes that can lead to autoimmune diseases

and almost all patients that have the IgG deficiency that my sis and I have

either have autoimmune diseases themselves or have a 1st line family member

with autoimmune diseases - the IgG deficiency causes me to be at a greatly

increased risk for infections - specifically upper respiratory, throat, and

sinus. So far I don't seem to have enough major infections to warrant getting

the monthly IV immunoglobulin supplements that my sis has to get, but the

doctors watch me closely. Even though I had the flu and pneumonia vaccine

last September, my body developed absolutely no antibodies in response to the

vaccines. My hematologist has told me and all my doctors that if I have chest

congestion and a fever of 99 degrees or higher, I HAVE to be put in the

hospital on IV antibiotics because I am one of those people that could be fine

one minute and in a matter of hours have pneumonia so severe that my life

would be in great jeopardy.

5. Several of my doctors think my chronic pancreatitis is autoimmune, but we

don't know for sure. Knowing wouldn't really change anything as far as the

treatment for my CP.

My sister, 48 years old (5 1/2 years older than me), has the following

autoimmune diseases

1. sjogren's syndrome - causes your eyes, nose, and throat to be very dry.

It can actually cause anything and/or any organ in your body to be dry to the

point of causing damage. It causes an increased risk of acid reflux. It can

cause debilitating fatigue, joint pain, damage to your eyes because they are

so dry you can actually damage the cornea and causes increased risk of eye

infections. Sjogren's syndrome can actually cause chronic pancreatitis

because it can cause the pancreas to 'dry up'.

2. ankylosing spondylitis (AS) - in its most severe form, it can cause all

the vertebrae of your spine to fuse together; in milder forms it causes a lot

of pain and stiffness in your back, neck, and shoulders - the gene HLA-B27 is

linked to AS, so if you don't have that gene, AS can be almost 100% ruled

out. However, you can definitely have the gene HLA-B27 and not have AS. Both

my sis and I have the gene, but I definitely do not have AS. Thankfully, my

daughter does not have the gene HLA-B27. 3. antiphospholipid syndrome (APS) -

at this point my sis only takes 325 mg of aspirin daily because her numbers

for APS are not as high as mine

4. possible systemic lupus

5. Immunoglobulin G (IgG) deficiency - prior to being diagnosed and beginning

monthly IV immunoglobulin supplements, my sis basically had major sinus and

upper respiratory infections for 6 years. she was on strong antibiotics

almost constantly, which led to horrible yeast infections that no amount of

local or oral meds could get rid of. She began the monthly IV immunoglobulin

supplements in December. She's only had one sinus infection since then and it

cleared up with only one round of antibiotics.

My daughter, Nikki, 22 years old has the following autoimmune diseases

1. rheumatoid arthritis (diagnosed at age 15)

2. antiphospholipid syndrome (APS) - she was tested for this at age 21 only

because I have it. Our rheumatologist told Nikki that the APS probably

wouldn't show up until Nikki was a few years older. We were all shocked when

it was positive the very first time it was tested. Right now Nikki just takes

81 mg of aspirin daily. However, they've already told her she will most

likely have to have daily injections of heparin (blood thinner) when she does

get pregnant or she will not be able to carry a baby to term. As upsetting as

it was to know I had passed yet another illness on to my daugther, she and I

were both very relieved to know she has it so they can monitor and treat her

accordingly when she and her husband do decide to start their family. When it

is not known that a woman has APS, she has a 70% chance of miscarriage! When

they know the woman has it and monitors and treats her accordingly, her

chances of having a normal pregnancy and healthy baby are almost the same as

any healthy young woman.

3. possible sjogren's syndrome

ankylosing apondylitis (AS), which my sis has and both she and I have the

gene, HLA-B27, which is linked to AS, is one of the few autoimmune diseases

that is much more common in males than females. My sis worries about her 8

year old son, , (actual biological grandson but she and her hubby

adopted him at age 2) having AS. Michale had an illness called henoch

schonlein purpura (HSP) shortly before he turned 2. This is an autoimmune

disease that is more common in boys and typically follows a viral upper

respiratory infection. It normally totally resolves in several months to a

year. It causes a type of vasculitis that leads to increased bleeding and

bruising. When he had it, a nurse could take his pulse and it would leave a

bruise. It does seem to have totally resolved, but because has

already had one autoimmune disease and because of our very strong family

history, we worry about what the future may hold for him. However, we are

hesitant to do genetic testing on him because anything showing up could end up

keeping him from getting insurance, a job, etc. when he is an adult. So, the

doctors have recommended holding off on any testing for now.

Anyway, it's very late so I'll end my post and lesson on autoimmune diseases!

Hope this finds that all is well with everyone.

W

Alabama

----- Donna-celiac

> Hi Donna,

> Well, Fliss just about summed it up. Celiac is an auto-immune

> disease and when the body ingests gluten, it sends out white cells

> to attack, leading to the destruction of the villa (hair like cells

> in the small intestine). When the intestine becomes damaged, the

> body cannot absorb nutrients, therefor leading to other problems

> such as osteoporosis, etc. Celiac's also have a high risk of

> developing Diabetes (I think type 2), and also have a higher risk of

> intestinal cancer (highly incurable). So you can see the importance

> of remaining gluten-free when you're diagnosed with Celiac. The

> diagnoses is based on blood tests and endoscopic biopsies from the

> small intestine. When I went to see Dr. Lehman for the first time

> in march, he did an ERCP and also checked for celiac. I had heard

> of it but never thought I would have it. But I am glad that he went

> the " extra mile " to check things out. Well, I guess that is my

> little summary. Hope this helps.

> Kris in TN

>

>