I have Celiac Disease...now more issues I would like to share...
 

Hello to all of you who are Celiac or Gluten sensitive.
I was diagnosed with Celiac Disease through blood tests due to elevated Liver Enzymes, AST and ALT were both over 100, my gall bladder stopped working, diagnosis was dyskenisia, and then developed a "frozen right shoulder". My uncle, brother of my mother who died when I was 9 years old had Celiac Disease, so it was considered that I may also have it due to hereditary connecitons. Thi s all came to the diagnosis when I turned 59 years old. They call this "latent" Celiac Disease because actually many people will never show symptoms even though they have the disease.

Now, the newest part of this for me....I developed a brain tumor in my left temporal lobe...I must say that I did not realize the symptoms of my seizures were what they were...I thought I was just over tired or stressed since I had taken on an extensive full-time job. I was "falling asleep" and losing time for seconds or minutes for over 5 years, on and off, but this past year it increased. The scary part was it would happen while I was driving...I even looked up Narcolepsy to see if that was what was happening...I also had a couple of times when I could not find the words I wanted to say, and just kept floundering with it until I had to be quiet...and eventually I would be able to get back to normal. And then it happened while trying to converse with my husband who took me to the ER...and life has changed since then extensively...Sept 24, 2013.

Celiac Disease is an immune trigger that can cause other immune systems to occur. I will be tested now for IGG4 this month which is another type of immune system, as well as rheumatoid arthritis, lymphoma, and other types. Being gluten free definitely altered my problems with the liver enzymes and the frozen shoulder. If I am glutened the experience is so painful in an arthritic pain of my arms and hands. (it actually happened in the hosptial by accident when given a prescription with gluten to increase my heart rate which is sinus bradycardia)

I am hoping to find out if any others have/are experiencing this type of change or to help any who may have been having similar issues.

Thankful for this site, Joanie:)

Hi Joanie, just wanted to say Hi. I've been gluten free for over 13 years, my sister for over 14, and our dad for 8. I will tell you that when glutened, over the years the symptoms change. One symptom that stays with me is excessive brain fog when glutened and my daughter tells me that she can tell when I have been glutened simply in my attitude change.

:hug:Deb

Celiac Disease is still in new Formation
 

Hi, Deb,

I am currently in response with this "Neuro Problem" as a Celiac with another person on Celiac.Com who has a tumor/lesion in a different brain area. It seems that if we develop what is called refractory Celiac...well, let's just say more problems and symptoms can be realized.

My next three weeks at Mayo Clinic will hopefully open up this process. I will be sure to fill in when I receive new information concerning my condition.

In the meantime enjoy life and love those whom you love the most!!:)

Joanie

I truly understand that feeling. I am not just a "simple" celiac either. Along with celiac, I have candida issues. My neuro told me "celiac sprue" with leaky gut. No grains whatsoever for me, no sugars, no sweeteners other than stevia, which I tolerate very well, no nightshades, no cruciferous veggies, no processed foods...the list goes on and on.

Hope you find the answers you need.

Hi, Deb
 

Wow, what a list of "no eats"!! You certainly have your part cut out to eat well.

I have been gluten free and try to eat as much "fresh" as I can. I have been using coconut milk as well when I use it..eggs have always been a problem with me ...not sure how much of my gut problems are involved with all of this, but hopefully the new tests will assist. I am very concerned about the rest of my family...many of them also have some issues, however, when tested for Celiac...the Dr's are saying "no"...although none of them have had the endoscopy testing because the blood work is indicating a negative...

In the Research Program I will have additional gene testing performed, so hoping this might open the door for my children and grand-children as well.

Stay strong...and stay well...:)

I too am concerned about my family. None of my kids want to hear about being tested. With a grandpa, aunt, and mom with celiac, you would think they would want to make sure, but nope! It does cost a lot more to be us, yet health should be their first concern.

I was gene tested and am a Double DQ 1, which is a double dose of gluten intolerance, along with the fact that many doctors think you can't possibly be celiac unless you are DQ2 or DQ8. Me being double DQ1 means both my parents have a DQ1 gene. My dad and sister, both celiacs have never been gene tested. A very big percent of celiacs have never been gene tested. My neurologist said I suffer from sprue, my PCP at the time had no doubt whatsoever that I am celiac. Nonetheless, right or wrong, I can't have gluten or any grains. I am what I am, right???:D

Dr. Hadjivassiliou--
 

--has done a lot of work to show that there are celiacs/gluten sensitives out there who are not genetically DQ2 or DQ8--in fact, many with presentation that are not initially gastrointestinal are DQ1:

http://pn.bmj.com/content/4/2/124.full.pdf+html (see the reference list as well)

http://jnnp.bmj.com/content/72/5/560.full

http://celiacdisease.about.com/od/ce.../g/Hla-Dq1.htm

You are so "correct"!! In my studies through TheDr.com and another Dr. who is in touch with the considered grandfather of this disease (Michael Marsh, MD, DSc, FRCP) and a site called Celiac.com...there is still so much newly learned every day.

Hence the reason I am involved with a new Research Program concerning other autoimmune diseases attached.

You are correct in saying you are what you are...and yes right!:) The one thing I am learning is that there is more to what I am, than originally thought. Is it just my dna attributing to the DQ; or am I also affected by other genes, or my other food intake, or other disease innoculations, or other diseases, or my geographical area??? One of the 3 neuro surgeons who were allowed to be present with my tumor recision at Mayo Clinic actually asked me later...where I was born and grew up, they already had my shortened medical past, but there was a plethera of other questions...we are who we are!:grouphug:

"From you url jnnp.bmj.com/content/72/5/560.full I identify with a part of this:
“Isn't the neurological damage nutritional?”
Nutrient deficiencies (B12, folate, vitamin D, vitamin E) are rare in this neurological population. Given that two thirds of these patients have no enteropathy this is hardly surprising. The concept of the neurological manifestations being nutritional in origin is now outmoded. Intestinal mucosal damage in coeliac disease is the result of both humoral and T cell mediated inflammation. Such inflammation is not, however, confined to the gut, as activated HLA restricted gliadin specific T cells25 and antigliadin antibodies are found systemically. Antigliadin antibodies are also found in the CSF.26 Postmortem findings from two of our patients with gluten ataxia has shown perivascular cuffing with both CD4 and CD8 cells. This inflammation was primarily seen in the white matter of the cerebellum. There was also marked but patchy Purkinje cell loss. We have also found antibodies against Purkinje cells in patients with gluten ataxia. Our research suggests that IgG antigliadin antibodies cross react with epitopes on Purkinje cells from human cerebellum.27 Characterisation of the anti-Purkinje cell antibodies by immunoblotting may provide a useful marker for the diagnosis of gluten ataxia in a manner analogous to the use of antiendomysium antibodies as a marker for coeliac disease or the anti-Yo antibody in paraneoplastic cerebellar degeneration."

My biopsy states: "The inflammatory process includes many T-lymphocytes, focal clusters of B lymphocytes and nummerous HLA-DR-positive and rare S-100-positive histiocytes. immunohistochemitry for CD3,CD20, epithelial membrane antigen (EMA) also."

Quite a bit of information, hence the pathological statement of "The dural biopsy shows a chronic inflammation without specific pathological characteristics, such as granulomas or multinucleated giant cells. No acid fast bacteria are detected. The findings are not specific and require clinical correlation."

Hoping for a good correlation that will be helpful in my journey of CD.
Joanie:)