Another Autoimmune Disease

Jinxy · August 4, 2012

In 2007 I was operated on my spleen, part of pancreas and part of liver removed, each bit biopsied and the growths in the lymph nodes 7 at that time diagnosed as Sarcoidosis, by 2009 this had spread to kidneys cervix, lymph nodes in neck and two flairs in brain. At the same time in 2007 I was diagnosed with osteoposis with a T score of -3.1 at this point I was 31 years old.

By 2009 I had several more growths in my organs and lymph nodes, plus 2 flairs in the brain and my first meningioma in the brain. I was also having problems with my stomach, colon, bowel - this had been going on for over 10 years since I was 19 and in that time I had had numerous colonsocopy's with polyps removes, severe inflammation and my test had always been described as "non conclusive for celiac". However in about 1999 they stopped looking at my stomach issues when they discovered a tumour of unknown origin on my pancreas/duodenum and I was left without explanation for my stomach issues. My weight however had dropped to 80lb.

My Dr's now have retested but said again its inconclusive because of my other autoimmune conditions, there are physical signs of inflammation, all my symptoms fit the profile and they tried me on a gluten free diet. I have to admit since I went gluten free I feel much better, but the question is can all these other diseases interfere with a diagnosis. Could my treatment, [i've been on steriods, MTX, remicade, autoimmune suppressants (anti-rejection drugs), topamax for epilepsy, cymbalta for pain, aclastar for osteoprosis, calcium, folic acid, with prolonged periods of antibiotics and anti-inflammatories ] mask the illness or cause it to seem like celiac?

Newbee · August 4, 2012

I'm sorry you've gone through all of this. I don't know if your treatment could mask the illness, but if you find thyat going gluten free is helping you then it seems reasonable to continue. Good luck!

Skylark · August 5, 2012

Oh gosh, that sounds terrible! Most of the celiac tests look for autoimmunity so it seems to me that your immune suppressants might mask celiac disease. Celiac can really mess with calcium absorption and cause osteoporosis. It's also a risk factor for duodenal tumors so to my way of thinking it sort of all fits together. Gluten intolerance is also pretty common and it can cause a lot of inflammation and stomach trouble with negative celiac tests so that could be your issue too. I'm glad your doctors had the sense to try you on the diet and that it's helping.

Gemini · August 6, 2012

In 2007 I was operated on my spleen, part of pancreas and part of liver removed, each bit biopsied and the growths in the lymph nodes 7 at that time diagnosed as Sarcoidosis, by 2009 this had spread to kidneys cervix, lymph nodes in neck and two flairs in brain. At the same time in 2007 I was diagnosed with osteoposis with a T score of -3.1 at this point I was 31 years old.

By 2009 I had several more growths in my organs and lymph nodes, plus 2 flairs in the brain and my first meningioma in the brain. I was also having problems with my stomach, colon, bowel - this had been going on for over 10 years since I was 19 and in that time I had had numerous colonsocopy's with polyps removes, severe inflammation and my test had always been described as "non conclusive for celiac". However in about 1999 they stopped looking at my stomach issues when they discovered a tumour of unknown origin on my pancreas/duodenum and I was left without explanation for my stomach issues. My weight however had dropped to 80lb.

My Dr's now have retested but said again its inconclusive because of my other autoimmune conditions, there are physical signs of inflammation, all my symptoms fit the profile and they tried me on a gluten free diet. I have to admit since I went gluten free I feel much better, but the question is can all these other diseases interfere with a diagnosis. Could my treatment, [i've been on steriods, MTX, remicade, autoimmune suppressants (anti-rejection drugs), topamax for epilepsy, cymbalta for pain, aclastar for osteoprosis, calcium, folic acid, with prolonged periods of antibiotics and anti-inflammatories ] mask the illness or cause it to seem like celiac?

Jinxy.....I have 4 autoimmune diseases myself and know a lot about them. My brother also has Sarcoids so I am familiar with that. Let me say this....all of your AI problems are related to Celiac Disease and that could be the reason why you have so many problems. If you have been eating gluten all your life and don't know you shouldn't be eating it, it can cause such severe inflammation that other organs become involved. The immune system will keep targeting other organs if you keep eating wheat.

Now, you go to the doctor and they try and do testing for Celiac and if they don't get a conclusive result back, they will not recommend the gluten-free diet.

Some of the meds you have been on over this time period will absolutely skew test results for Celiac because they suppress the immune system. Why doctors don't understand that is beyond my realm of understanding but it is what it is. Most people with AI problems all run into doctors who do this to them because none of these medical people think outside the box. They test and if the test is negative, it's over and they tell you they don't know.

You need to be gluten-free for the rest of your life because you have suffered enough.

My brother has as many AI problems as I do and he is a mess. I have recovered very well and am doing good right now. You know why? His doctors refuse to believe he has Celiac and he has been tested. But like yourself, he is on a myriad of meds which could affect testing. My brother has Celiac, like I do, and I would bet a month's pay he has it. He will not go gluten-free and he will be lucky to live to see 65 years old. I, on the other hand, have stabilized my AI problems with the gluten-free diet and exercise and feel pretty good, overall. You can too! BTW...I have osteoporosis in my spine from Celiac Disease and am doing weight training to make it better. I do not take meds for it. I haven't been re-tested as of yet but hopefully, that will resolve. It's harder for me as I am post-menopausal.

You may not be able to get an official diagnosis but I would not wait to go gluten-free. With your medical history, you scream of Celiac Disease. You felt better once when you did a dietary trial but it takes a long time to heal and see significant improvement. Please believe that you most likely have celiac disease so revisit that dietary trial! Good luck and I hope you feel better soon......I know how you feel as I was down to 97 pounds at diagnosis and it's the pits!

GFinDC · August 7, 2012

Hi Jinxy,

It seems there just isn't a foolproof 100% sure test for celiac disease yet. The tests are very reliable when they are positive, but when they are negative that doesn't mean you don't have it. Since people often don't "pass" the tests, or rather they don't get a reliable indication from them, it is always a good idea to try the gluten-free diet for 3 to 6 months and see if there are any improvements. Celiac can cause mal-absorption which can cause lots of symptoms by itself. People sometimes are low on vitamins because of celiac, like A, D, E, K and B vitamins. Iron may be low too. Getting those levels tested and can be a helpful thing. May the Good Lord bless you in your quest for better health.

As you can see by the meal threads below, it is easy to find food to eat with a little thought and some experience.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread