This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
My last MRI was on Nov 23,2013 showing that the tumor had totally been resected...the biopsies (5) in total I have, but would prefer to share via e-mail. My next follow-ups at the Mayo Clinic are with my neurologist, Jan 20th for follow-up about epilepsy and other issues...and then I will be testing with Hematology and meeting with my neuro surgeon on Jan 28th. They wanted to be sure the craniotomy had healed very well before proceeding. Please send me an e-mail via our system here, and I would like to discuss your tumor issues as well. Thank you so much for the help. Joanie
I thought I would send some notes from my neuro surgeon that approaches the protocol of my own new MRI...his concerns were as follows:
ASSESSMENT AND PLAN
My impression is that Mrs. Pfeiffer is a 61-year-old female with a left
temporal lesion. I cannot differentiate at this point a brain tumor, primary
or metastatic, versus cavernous malformation that is less likely.
The tumor seems to have a dural-based component, but it is very worrisome the T2
abnormalities surrounding the mass. The plan is to repeat an MRI of the head
with gadolinium with T1 stealth sequence and also GRE. We will make further
recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She
understood and agreed to proceed with the plan. I am also providing her a
prescription for levetiracetam generic per her request. Her insurance
company does not cover Keppra. Once again, I appreciate the opportunity to
participate in the care of the patient very much.
His further comments were also related to stating my cerebellum was unaffected. So there are certain pieces as you indicated that the protocol is specific to certain types of MRI's. Thanks for being here.
Hello, I have not been here for quite awhile basically because of my health issues. I was diagnosed with Celiac Disease 3 years ago, but it took a very long time in coming....and now I have developed "Idiopathic Hypertrophic Pachymeningitis"...
Too shorten this I first would like to say that I was having Epileptic seizures without realizing that is what they were....at one time I thought it might be Narcolepsy but shoved it off saying I was overtired or due to stress. These were actually focal seizures that caused me to be very sleepy and lose time for seconds or minutes. A few times I also had the more significant type in my speech..not being able to say what I wanted to and losing the ability to complete a conversation. This last type is what my husband took me to the ER for and then everything changed. My MRI showed a brain tumor in my left temporal lobe. The diagnosis from the neuro surgeon there was not agreed upon by other Dr's, and we were advised by my PCP to get a 2nd opinion...hence my new MRi's, craniotomy, and new diagnosis from the Mayo Clinic.
At this point, being a Celiac is very important because as has been stated before; if you have one type of immune system this can trigger other immune diseases. I will be undergoing more testing now to determine what other types of immune problems I have. I must say I am so thankful for the Mayo Clnic Dr's who seem to be very aware of Celiac Disease including my neurologist.
I have agreed to be a part of a Research Program with Mayo Clinic authorizing the tissues from my tumor to be used to help other patients who may be Celiac and developing other problems. The future tests will be in Hematology first and then from there we will proceed.
I am not posting this to scare anyone. Like I first composed on this topic...this is considered "very rare"; but yet I wanted to make sure that everyone realizes the importance of follow-up with good Dr's. My PCP was doing the normal tests on my boodwork to check for Vitamins and minerals and of course liver enzymes and TSH, but if I had known about the seizures, perhaps that would have set her on a level of more needed testing...if in doubt...let them know.
Now, I cannot work, I cannot drive, and my speech and memory has been reduced greatly since some of my normal brain tissue had to be removed to resect the complete tumor. Also, this was in my left temporal lobe which controls much of that. The Dr's say if will just take longer for my brain to heal. I am on Keppra, to offset any more seizures which seems to be working at this time.
I have applied for SS Disability, but this takes quite some time..with all the insurance changes and the higher cost of deductibles, there is much need for this to be approved given all the new tests I will have to go through. Thank God for my husband's insurance, so far, so good, just higher deductibles right now, no higher monthly payments.
I know how difficult it is to find good Dr's who will listen to us, there is more and more information being sent out to the medical field regarding Celiac and other immune systems...so help is on the way!
I have not been on this system for some time...basically it is due to such unusual changes, I still find it difficult to understand. I was diagnosed through Hematology for Celiac Disease (latent) 3 years ago, became gluten free and so many things got better! My liver enzymes became normal again, my frozen shoulder was painless again, and I lost weight which I needed to lose. However...I have learned that lesson of having one autoimmune diagnosis can lead to more....
I developed tinnitus in my left ear over 12 years ago, met with an ENT who did some tests in his office with the "fork tuning" and a few other types, and then he ordered an MRI because he said I may have a brain tumor called Acoustic Neuroma. I bought a copy of that MRI from the hosptial and kept it...there was no tumor, but I was concerned. Glad I did! This I will add to another topic.
My most recent experience took me to the Mayo Clinic and I wanted to give you this information I have thus far concerning my tinnitus and vertigo:
Loss Hearing Mixed Conduct Sensorineural(Confirmed)
Allergies, Adverse Reactions, Alerts
This is not going to go away according to my Neuro-Surgeon and neurologist. Not even being gluten free will/has changed this. They suggested possible hearing aids to assist, but I have far too many other concerns right now...this will keep in pending. I deal with my most debillitating time to sleep at night by having my husband turn the TV on with sound...and then I can fall asleep. Other than that, I have become used to this and from time to time it will vary in intensity. Take care all, will post on another topic for what is going on regarding other immune system problems. Gladgirl
Oh, yes a "rye" bread recipe would be great!! I do miss my reuben's!!
Tonight I made stuffed bell peppers with onions and garlic sauteed first in the skillet with virgin olive oil and then browned the ground round, added diced tomatoes and steamed rice, spooned into the prepped fresh peppers (got them at the Farmer's Market just today) and then a small dinner salad tossed with chopped olives and vinagarette.
Tomorrow, well, I just boiled some eggs, so, thinking a spinach salad to start with the eggs and vinagarette...have that gluten free bisquick mix and fresh strawberries, so dessert...mmmmm should be a very nice short cake!
If you are gluten-free already, these tests will probably not be conclusive since they look for the Gliadin reaction! the "gene" test however is not conditional to this. Here is one of the best labs testing currently for Celiac Disease, and they have good notes. This site also explains "testing" as well..good luck
OH, Yes!! This is one symptom that led my brother and I to celiac disease!! We both started developing increased levels in our Liver Enzymes AST and ALT, and then the frozen shoulder! (my right, his left) After going gluten-free for three months, my pain in my right arm really diminished and my liver enzymes went down as well. Now being 6 months gluten-free, the pain in my shoulder is barely there and my liver enzymes are back to normal!!
I love it!! The Pancakes are superb! My hubby who is not gluten-free, but a diabetic has actually enjoyed the gluten-free products more than the old products. So, he said, go ahead, just make everything gluten-free and SF...we're good! LOL! He really likes the gravy I can make using this product as well for our beef roast, chicken, or pork roast!
Although this thread is a little old, I was glad it was here! I just came back from my new Dr's office and found out that I have over-supplemented Vitamin B12. I have some "toxic" side-effects, mainly "joint pain" popping up in my extremities. The Dr. and I both think because excess Vit B12 can be stored in the liver, and my major issue with Celiac has been my liver enzymes, this may be causing the problem. At any rate my liver enzymes are almost normal now!! They were well over 100 and now to 40 on AST and 42 on ALT. Whew!
So, on this information provided, please do make sure as you supplement that the Dr. is testing appropriately and you let them know any possible side-effects you are experiencing. (I thought somehow, I had been glutened, thankfully not the case)
As my body is still continuing to heal, my glucose is good, my cholesterol keeps jumping around...lol! This time my LDL was lower, my HDL higher, but also my triglycerides were higher...ugh.. In the meantime, I sure have been sleeping better and no pain in my right side anymore!! (last night I slept for 7 hours straight!) It has been over 12 years since that has happened.
Oh, and the many recipes here are so helpful, I even have my neighbor, who loves to cook making some of the special treats for me!!
Well,new to this as you may well remember. My gluten-free diet has made me feel so much better! However,I am concerned about some lingering issues, such as some fatigue, lethargy, and so on...So, now that we know our bodies are not able to sufficiently absorb/use nutrients of vital minerals/vitamins....I have been looking into the Iodine factor. It seems that this could be an issue, and will have my new Dr. test my Iodine as well next month. Just some information on this link:
It is so unfortunate when we patients are not "trusted" to be believed by our Medical support system. Our Dr's need to know that "trust" is a two way street! So, I just changed Dr's due to that very reason. My new Dr and I will be developing that patient/Dr relationship. I let her know how dismayed I have been in the past by some of the medical society, and at this point, she and I are off to a good start.
One great question my new Doc asked me was, "Are you in a support group for Celiacs?" I thought that was a great way to let me know, she understands the importance of strengthening our concerns and questions through others dealing with this lifetime conviction of being gluten-free. At that point I replied, yes, and added that one of the moderators of that group, when asked about Dr care, let me know that they were just told to go gluten free dieting and that was about it. She looked at me somewhat incredulously. But I also felt she knows that to be true.
There is no reason to put up with an inept medical group. Even the LPN who took my vitals and some history before the Dr came in, was knowledgeable with Celiac. She said they have many Celiacs who will not follow the diet, and asked me how I was doing. Caring yet careful.
Your comfort zone in this journey is so very important. I am grateful to get some feedback and assistance here since I am new to this. Wishing you all the best as we journey forward.
Well, here we go! New Dr. recommended by my Insurance's Nurseline is Dr. Janice Nord, MD, Internal Medicine. She is part of a group called the Millenium Group in Southeast Florida. I met with her yesterday, she asked several questions, especially about the Hematologist I went to whom she also knows. I took copies of all my test results, and then her eyes really opened up when I told her the story of the other Dr. and his prescription for a statin that I did NOT take. She nodded her head when I told her that I realized I was "in trouble" going to that Dr. At this point, she has scheduled me for bloodwork on a Comprehensive Metabolic Pane, CBC, Complete Urinalysis,Lipid Profile, TSH, VIT B-12 and VITD. She has also scheduled me for a "Complete Physical" which I never had in the past 3 years seeing my other Dr. This will all take place next month in about 4 weeks.
We noticed on my other bloodwork, that my glucose is sliding upwards for some reason, even though my liver enzymes went down as well as my LDL and triglycerides, along with my weight loss of 20 lbs and my HDL went up a bit. Hmmmm...not good, need to definitely try and control my consumption of Carbs since that is probably why it went up...ugh! Thing is, my system does not digest well in the meat group wherein the protein lies...although I added some probiotics. Dr. Nord and I discussed that as well. Anyway, we will see, what needs to be attended to. I already take extra vitamins, but may need an adjustment.
Dr. Nord asked how I was doing on the gluten-free diet and I told her, it was not really that difficult for me since my hubby is diabetic, I was already used to making diet changes. So we are the SFGF household. I guess that's why I don't understand the increase in my glucose, because we watch our Carbs and sugar intake already. I have been intaking more fresh fruit and wonder if that could be it. Also, not good with eggs, so have been eating Chex cereal which is high in Carbs...oh boy, that is one big difference in my diet vs my hubby's, he does not eat cereal!! Guess I may have to look at eggs substitute or something. I can do it, just a bit difficult. I also take psyllium to combat constipation. Just once a day seems to be taking care of that area, so far.
Anyway, on my way I hope to a better controlled situation. Just really happy about my liver enzymes now almost normal!!
I found this very interesting article on a link on Celiac Disease and thought I would share it. In this piece, there is quite a bit of "eye-opening" relative information. The fact that there is some "typing" makes sense and then there are the "Marsh" types as well that hold more definite terms. The part I really like is the added information on what needs to be "watched" along being gluten free. What areas we need to focus on for remedial and distressed issues. Follow-up care just seems to be lacking from what I have heard and read so far. This link actually gives some insight for future Dr. visits we Celiacs need.
Well, I just got off the phone with the MA who works with my new selected Dr. She is an internal med Dr. and I will be meeting her for the first time tomorrow afternoon. Like you, I am hoping she has the "knowledge" your new young Dr. has. Praying for a good informational consultation and moving forward towards healing.
Let me know how you are doing in your progress...kind of nice to see how one another are doing in this quest.
Just FYI, I looked back at the copy of my liver biopsy performed 6 years ago, and when I allign the biopsy notes to Celiac...you would have thought someone would have received a "clue"!! Oh, well, onward and upward from here...