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01-03-2014, 09:29 AM | #1 | ||
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Junior Member
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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 |
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01-06-2014, 08:39 AM | #2 | |||
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Member
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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.
Deb
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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"Thanks for this!" says: | JoanieP (01-07-2014) |
01-12-2014, 07:22 AM | #3 | ||
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Junior Member
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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 |
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01-12-2014, 07:22 PM | #4 | |||
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Member
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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.
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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01-15-2014, 10:05 AM | #5 | ||
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Junior Member
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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... |
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01-15-2014, 10:07 PM | #6 | |||
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Member
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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???
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Deb We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right! |
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"Thanks for this!" says: | JoanieP (01-16-2014) |
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