I was diagnoised a little over a year ago with Celiac Disease. I have been gluten free since..I take B12 shots every three weeks for low levels..I have really been having severe hip pain and still feeling very weak. I have had severe trigemeninal nerve pain at night with sweats..I saw my doctor for the facial pain and they did bloodwork and it came back that my Vitamin D levels were very low. He prescribed 50,000 units, 1 tab a week and to see him back in 3 weeks for more blood test..I read about the problems that can occur with low levels and was wondering if anyone knows much about Osteomalacia. I'm wondering if all of this back, hip and facial pain this developing..I don't know if I should mention it to my doctor or not..I'm really frustrated that I cannot find a doctor that treats Celiac and the other things that can possibly happen by having it for so long. My Gastro doctor seems to think I have had celiacs since about age 7-8. I am 46 now...Any info would be appreciated...
I share your frustration, finding a celiac-knowledgeable doc is like finding a needle in a haystack. I haven't found one yet (GF since '05) but I live in the boonies. If you're anywhere near a major non-profit teaching hospital, you may want to start looking for an internist there.
You might want to get a bone density test (DEXA scan), that can dx osteomalacia but also early onset osteoporosis, which is more likely with Celiac, especially in those not dx till adulthood.
Celiac is inherited. It's something you're born with, triggered by the introduction of gluten into your diet. Like most autoimmune diseases it can wax and wane in severity but it is always there.
Ask your doc to check your thyroid hormones too (they can mess with calcium and vit d), autoimmune thyroid disease is very common in Celiac.
Thank you so much for your reply..I see my Gastro Doctor in Dec. for a yearly. He does not know about any of this yet. I have been having very bad hip pain for over a year now and I went to my Chiropractor for that and the terrible nerve pain in my jaw and ear. She recommended me to see my General Pract. and I did. He ordered the bloodwork and never did set up the MRI or CT scan that my Chiropractor wants me to have. I have made up my mind to discuss all of this with my Gastro. Doctor on Dec. 14th and ask him to refer me to a Rheum. Doctor. or someone that can look at all of my problems as a Whole and tx the Autoimmune and not each symtoms individually. To me its a no-brainer, its all connected...It amazes me that Doctors do not have a clue about Celiac..My Doctor last week had the nerve to laugh and call me a "Cheap Date" because of eating Gluten Free and limited choices when eating out...OH, I was ****** when I left his office. I will have my chance to blast him in two weeks...I have a son who has Type I Diabetes. No one knows how hard it is to eat "Sugar Free or Gluten Free" and if they did they would not make smart comments like that....
Yes, you are right..I have other choice words for him but I will not comment. Yes I am aware of the connection..Not until I was diagnoised did I realize how much Autoimmune runs in my family...My Mom has MS and thyroid, My 2 brothers have thyroid. My one brother also had Non-Hodkins Lymphoma. My Gastro Doctor has told me that I have had the Gluten allergy most of my life..I have always been anemic..As a child my blood levels never got above 9. I took vitamins all through my childhood and suffered greatly with tummy aches. I went through all kinds of testing as a child. "Except for food allergies" It's not rocket science. I was very thin as a child. I still have trouble keeping my weight up. I don't understand if I am gluten free why I am still not absorbing my Vitamin D. I do not do alot of Milk products because of the sensitivity to it. But, I do eat alot of cheese and in the Summer I stay in the sun. We are very active going to the Lake and Beaches in the warmer months. I ask the nurse on the phone what could be the cause and she said "You're not in the sun enough" I thought to myself, Who is in Nov/Dec. Is everyones D levels low. I'm thinking to myself Do they not see on my Chart that I am Celiac and maybe its my diet..I have even had my Doctor comment to me in the warmer months to stay OUT of the sun and wear sunscreen because I have abused my skin by being in the sun so much...They are flipping idiots...I am in search of a new Doctor.
Hi Robin63, I also have celiacs and the low vitamin d. My d is up to 48 now and supposedly thats ok with my dr. now. I also have hip problems along with sacro illiac joint problems. Finally figured out it was all stemming from a tight piriformis. Working on it with strain counter strain physical therapy and that has helped a lot. Are you really strict about the diet. A really good book is by Dr. Greene called Celiac Disease. He runs the celiac disease clinic at Columbia University and is very knowledgeable. A good book to get. Did you get a endoscopy to check for intestinal and esophagus cancers that can sometimes occur with celiacs. I had one done. Not fun but at least I know I'm cancer free so that's one less thing to worry about. I agree with AuntieLee and you should get your thyroid checked out if you haven't. I had Hashimotos thyroiditis before I knew I had celiacs. My thyroid was cancerous so they removed it. If you get a thyroid test get the tsh, t3, t4 and the antibodies test to check for Hashimotos. Have you been checked for anemia. I was anemic and the doctor wanted me in the hospital for iv iron and I asked shouldn't we figure out why I'm anemic in the first place. He wasn't going to investigate it so I did and I'm the one that diagnosed myself with celiacs. Walk into the dr. office and asked for a celiac test and I wasn't surprised when it came out positive.
I also have a son with type 1 diabetes. He is 15 and has had it since the age of 4. He is on a pump and we really like it. I had him tested for celiacs and the test came out inconclusive. One part of the test came out positive but it's the most unreliable part of the test so the dr. said he doesn't have it. I'm trying to convince him to get off gluten because he is at such a high risk for getting it being a diabetic and having a parent with celiacs. Hard thing to do to tell a teenager no more pizza and bread. I'm working on him and try to tell him the research I've done when he is in an accepting mood. I think he's starting to get it. How old is your child?
Thank you Beth for your reply. I am strickly on a Gluten Free diet. I learned the hard way that there is no cheating on this diet for it to work...Of course there are unknow hidden glutens that get you sometimes but that's how we learn. My Son is now 27 years old and has been diabetic since age 6. He is also on the pump..What a great thing for these children...It is so much better than injections...I see my Gastro Doctor on Dec.14th and I plan on alot of discussion with him.. Yes, I have had all of the test you mentioned..My last colonoscopy revealed spastic colon in sigmoid with IBS along with everything else that's going on...My guess is this is the reason I may not be absorbing the foods properly still. I just don't know!!!!I am going to ask to have a Complete Thyroid panel done when I go..I do display alot of the Thyroid symptoms and it definetly runs in my family. Have a Happy Thanksgiving...Just remembered--I found in Kroger last week Gluten Free Turkey Gravy. It's Organic "Imagine" Roasted Turkey Gravy. I am so excited and can't wait to try it.