celiac disease?

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alli sunshine
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 2/13/2010 11:09 AM (GMT -7)   
I have been popping in here off and on while I try to find out what is wrong with me. Brief history- family history of RA, anemia, gastroparesis, Raynauds, high ANA test, extremely low vitamin D, joint pain, fatigue, etc. Went to rheumy, he did DNA testing and said that I did not have lupus, but need to be watched for developing an autoimmune disease.

I went to our new employee health clinic to get my blood checked this week. The doc met with me to go over the results. Despite having a uterine ablation last summer to stop my extremely heavy periods, I still have low hemoglobin, mcv, and my iron serum is very low. I also have hardly raised my vitamin D, which was a lovely 7 last year and is now 19. This doc said that she is sure I have autoimmune stuff cooking, just nothing that falls under one diagnosis at this point. She is testing me for celiac disease and thinks that this is what could be causing a lot of my issues. I know not a lot about this, except that the gluten free diet sounds like a pain in the rear. She is also testing my ferritin levels, and brought up IV iron, which also does not sound like fun.

I was wondering if anyone could tell me if celiac is an autoimmune disease. Also, if any of you have this, could you tell me what it is like and your experience has been with it.

I really wish someone could figure out something with me. I am sick of feeling sick and yucky.
Thanks for any info.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 2/13/2010 11:37 AM (GMT -7)   
I don't think it's an auto-immune disease, but it doesn't have some effects on the immune system. Lots of info at www.celiac.org.

Hope that helps a little,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


alli sunshine
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 2/13/2010 6:04 PM (GMT -7)   
I found this thread that was helpful on this topic.

http://www.healingwell.com/community/default.aspx?f=29&m=826889

I'll be curious to see what my test results bring.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/13/2010 7:07 PM (GMT -7)   
Hi Alli,

Celiac disease is an auto-immune disease. Another good website with a message board like this is www.celiac.com

I've been on a gluten free diet since Sept 2003, at first it was a little difficult but nowadays gluten free food is everywhere in the grocery stores. Do you have a lot of GI symptoms, is this why your doctor is testing you? I was dx through a private lab after traditional blood test and biopsies were negative, but the ONE true test is an improvement of your symptoms after going on a gluten free diet for as little as a week (or less). For me, I could tell a difference in my symptoms within 3 days.

Before being dx and going gluten free I had terrible abdominal pain, nausea, weight loss (40 lbs in 2 months), diarrhea, etc. After being dx I still continued to have some GI symptoms and it wasn't until I was dx with lupus that I found out what continued to make me suffer, it was lupus attacking my GI tract. Thankfully my symptoms significantly improved after starting Imuran.

Feel free to ask more questions and I hope you get some answers soon. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


alli sunshine
Regular Member


Date Joined May 2009
Total Posts : 40
   Posted 2/13/2010 8:06 PM (GMT -7)   
She is testing me because despite the fact that I had a uterine ablation last summer to end my heavy periods, my blood work is not showing improvement. My iron serum, hemoglobin, etc., have not been in the normal range. And, my vitamin D was extremely low and has not risen much despite supplements. Also, I do have some GI symptoms- nausea, reflux, pain. She is thinking that my blood could still be bad due to lack of absorbing nutrients due to celiac, as well as my GI symptoms. I did have an endoscopy last spring, which came back with inflamation in my stomach and a small hiatal hernia.

I'm glad to hear you say that the diet isn't so bad. I am just curious to see what my new bloodwork brings. Thanks for the website and the info.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/13/2010 9:39 PM (GMT -7)   
alli sunshine said...
She is testing me because despite the fact that I had a uterine ablation last summer to end my heavy periods, my blood work is not showing improvement. My iron serum, hemoglobin, etc., have not been in the normal range. And, my vitamin D was extremely low and has not risen much despite supplements. Also, I do have some GI symptoms- nausea, reflux, pain. She is thinking that my blood could still be bad due to lack of absorbing nutrients due to celiac, as well as my GI symptoms. I did have an endoscopy last spring, which came back with inflamation in my stomach and a small hiatal hernia.

I'm glad to hear you say that the diet isn't so bad. I am just curious to see what my new bloodwork brings. Thanks for the website and the info.


Hi Alli,

Heavy periods, low iron/hemoglobin/vit D, GI symptoms etc can all be signs of celiac disease.

As Stacie said, celiac disease is definitely autoimmune. It can not only cause auto-antibodies to form which attack the intestinal villi, but it can also attack the bones, the skin, and the brain. One of its most charming characteristics (heavy sarcasm here) is that, if untreated via the gluten free diet, celiac disease can "open the door" for other autoimmune diseases to develop.....such as lupus, for example. See the following link for more info on this:

www.umm.edu/news/releases/zonulin.htm

This may be one of the reasons I have so many autoimmune diseases myself. I was undiagnosed for at least forty years. :(

So it is extremely important for anyone with celiac disease to follow the gluten free diet. It is not an unpleasant diet, once you get used to it. Here is a helpful link which tells you how to go gluten free:

glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

There are lots of gluten free foods out there now, lots of restaurants with gluten free menus, and if you know how to cook, you will find that you can make a gluten-free version of literally anything you miss. Here are just a few of my favorite gluten free cooking blogs:

crockpot365.blogspot.com/
glutenfree.wordpress.com/
glutenfreegoddess.blogspot.com/
www.elanaspantry.com/

However, you should NOT go on the gluten free diet until your doctor has finished running all of the tests for celiac disease (the blood tests and biopsy) or you risk false negatives. These tests have frequent false negatives anyway.....as Stacie suggested you should probably consider trying the gluten free diet yourself as the ultimate test (they call it a "gluten challenge"). If you go gluten free for a week or two and feel better, then go back on gluten and feel worse, then you know beyond the shadow of a doubt that you have a problem with gluten. That was how I confirmed the doctor's diagnosis for myself.

Good luck with everything!
JoAnn
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

autoimmunediseasesgfliving.blogspot.com

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