Celiac Disease ???

[Rhonda]

As we all do, I have been researching symptoms - I ran across Celiac Disease and I swear I have it!  I am going to ask my doctor about it tomorrow.  I have almost all the symptoms - but the one thing I find interesting is it says you are high risk for it IF you or a family member have been diagnosed withany of the following:
Type I Diabetes
Dermatitis Herpetiformis
Thyroid Disease
Osteopenia/Osteoporosis
IBS
Chronic Fatigue Syndrome
Fibromyalgia
Peripheal Neuropathy
Eczema
Sjogren's Syndrome



www.celiac.org

[volleymom]

Hi Rhonda,

I was diagnosed with Celiac disease last fall.  Of course, I raced home and did a bunch of research on it.  No one else in my family has it--or any of the other diseases I have.  I too found it interesting that there is a link to so many other diseases.  I also have Type 1 diabetes, thyroid dz, and Sjogrens.  Aint it great how having one disease makes us more susceptible to more??

[cmclien]

I was tested for it (just a simple blood test btw) but didn't have it.  That was a couple of years ago.
You can be a non-celiac but be gluten sensitive which gives you the same symptoms other then the malnutrition (I think), I do believe I am, or definitely wheat sensitive.
Interesting list though isn't it?

[Rhonda]

I am going to talk to rheumy tomorrow.  We'll see what he has to say about it.  He's pretty thorough and understanding and I trust his judgment.

It's so nice (NOT) to be on a list of most likely to get diseases! 

[Seeker]

Don't forget the acid reflux and bloating, just to name a few more problems.  You may or may not have Celiac disease.  The only real way to test for it is a biopsy of the small intestine.   Many people, rather than going through all that trouble of running the doctor gauntlet, will just go on a gluten free diet.  If you have a improvement of symptoms, its a good sign you do have Celiac.

The interesting thing is if you go on the gluten free diet, the small intestine heals it self.  So later on down the line a biopsy would not show a problem.    

In my own case, I had a blood test done.  One of the results came back showing a possible indicator of Celiac.  I tried to get my doctor to continue to investigate.  I was told not to worry about it.  So I decided to go ahead and try the gluten free diet.  The results for me were astounding.  The main symptom that went away was my acid reflux.  I no longer have to take medication for it.  That in it self, is worth staying on the diet.  

By all means talk to your doctor.  But if you get the doctor run around, you may want to try going on the gluten free diet.

Seeker

[irish]

That list is a hoot. I guess if it was me I would say that if you had celiac disease you would be high risk for the other issues. Dependents on which was the wind is blowing.

Years ago when my hubby was diagnosed with celiac disease (1978) you hardly ever heard of it. I had studied it in nurses training and asked a doctor one time about it as my hubby was sick from before we were married. Doc said "nah". They never do listen do they.

Anyway, there was hardly any literature out there and there was no internet so I made friends with a few librarys as time went on. The one thing I learned was that people in Germany and Europe had a high incidence of celiac disease and were leaps and bounds ahead of us. They have had special food/restaurants and grocery stores long before we did in the USA.

Finally they have gotten the message in this country and it is about time. THe good thing is that they are now learning that the disease is much more prevalent than originally thought. People can have mild sprue or severe sprue and sometimes the length of time makes no difference. Our son is a mild case and my hubby has always been a moderate to severe case. There was a time when he looked like a refuge from a concentration camp.

If you have sprue or celiac disease please make sure to follow your diet all the time. When you cheat it takes the gut about a month to heal. Irish

[Carebear]

Hi Irish,

I had to nod my head in agreement with your comment about staying on the gluten-free diet.  I was diagnosed with Celiac Disease ten years ago, and there is no room for cheating.  

Not only do you pay the piper for the next 24 hours or so, you can also cause yourself serious long term intestinal damage.  There are tons of things I miss eating, but nothing is worth that!

For those of you with Celiac Disease, my Neuro informed me of something very interesting on my last visit.  Apparently Celiac Disease left untreated (meaning that gluten is being consumed) can result serious cognitive difficulties.  I did not know that... so yet another result for me not to eat that vegetable protein.

[Seeker]

If you go on the Gluten free diet, you will need to put on your Sherlock Holmes cap.  Becoming food detective will be very important.   Reading food labels and knowing what to look for in order to find hidden gluten will become necessary.   

Seeker

[Rhonda]

Thanks everyone for the advice.  I have looked at the gluten free diet and I know it isn't going to be easy.  I haven't started it at all because I wanted to talk to the doctor first.  I read that if you are tested you must be on gluten for at least one month prior or the test is for naught.  I'll keep you all informed.  Thanks again!

[Carebear]

Good luck, Rhonda.

I have found the only good thing about being Celiac is the endoscopy...at least the being medicated part of the examination!

[LizPetillo]

I have found the only good thing about being Celiac is the endoscopy...at least the being medicated part of the examination!

Yep.  I love that shot they give ya' just before endoscopy.  I wish I could take it home in a bottle and have it all the time.  They also give me some high powered prednesone-type shot because my tongue swells.  When I get that shot I go for a good 3 or 4 days without my tongue hurting.

[gphx]

One theory I've heard as a cause of celiac disease is leaky gut, a disruption of the gut/blood barrier. Basically a viral, bacterial, or other inflammatory cause damages the bowel allowing components of wheat to cross over directly into the bloodstream causing the immune system to develop inappropriate reactions in genetically or otherwise susceptible individuals.

As an example of another AI disease perhaps the main theory for MS up to this point has been a similar event causing a disruption in the brain/blood barrier, an isolation mechanism keeping our blood from being directly exposed to neural tissue. In this case the cells are erroneously entrained to attack nervous system tissue as the theory goes.

Some have gone on to theorize leaky gut and the crossing of the gut/blood barrier may in fact be a trigger for a large number of autoimmune diseases.

Perhaps aggravation of the gut due to celiac triggers Sjogren's symptoms and is responsible for the experience of many here that cutting back on wheat tends to ease them.

It is certainly consistent.

It has even been proposed a common suspectibility to leaky gut syndrome may explain why many families contain multiple individuals with AI diseases, yet different ones.

This seems consistent too even if theoretical.

[navydad]

Is the blood test for celiac good enough to determine if you have it?,, or the biopsy,, if the blood test is good enough why go through the biopsy,, I dont understand

[Carebear]

Hi NavyDad,

The autoantibodies that doctors usually measure to test for celiac disease are called immunoglobulin A (IgA), anti-tissue transglutaminase (tTGA), and IgA anti-endomysium antibodies (AEA). 

If these tests are positive, an endoscopy is performed.  During this procedure they take a biopsy of your small intestine which is checked microscopically.  If the villi are flat or shrunken, then a diagnosis for celiac is made.

With celiac disease you can also have Dermatitis Herpetiformis, which is confirmed by skin biopsy.

People with celiac disease are usually malnourished as well. In my case I was anemic and had osteoporosis at age 42.

[Epson]

Rhonda,

Funny you mention this topic, I was at the gut doctor on Tuesday and the two possible scenarios for my intestinal issues are Celiac which I had a blood test for 2 years ago and came back negative and Microscopic  Colitis.  In two weeks I have a colonoscopy and biopsy scheduled, Celiac markers don't always show up in the blood and Microscopic Colitis can't be seen with the naked eye as its name implies.  The symptoms of both disorders are similar and both are commonly seen with Sjogren's and other AI disorders, I feel so special