Specifically ask to be tested for iron (including ferritin level), folic acid, B12, magnesium, and Vitamin D to start with. These are nutrients that celiacs tend to have trouble absorbing. Probiotics and digestive enzymes may help you to start absorbing nutrients better, and many people have been helped with L-Glutamine.
Yes, living in a household where others eat gluten, using a shared toaster, and eating oats can all cause your symptoms. Many of us with celiac cannot tolerate oats regardless of whether or not they are certified as being gluten free. Also, many of us cannot tolerate soy and/or dairy. Sometimes as our autoimmune systems are producing a lot of antibodies, they can mis-identify other foods as containing gluten when they don't.
In the beginning, it's very important to make your household as gluten free as possible and to eat only natural, whole foods. Is there a reason why your household cannot go entirely gluten free? It's easy to do....and it can be a very healthful diet for everyone. Cannot the other members of your household simply consume gluten outside the household? If you eat whole foods, we're only talking about things like bread, pasta, crackers, and desserts that might contain gluten. These can all easily be replaced with gluten-free alternatives. Eating a gluten-free diet isn't like eating "bad" food--really, everyone can enjoy eating a gluten-free diet.
It sounds as though you'r trying to go "gluten light," and, quite frankly, this will not alleviate your symptoms. Please read as much as you can about celiac--I believe you'll begin to understand very soon why your present arrangement can only spell disaster for your recovery.
I did a TON of research online regarding nutritional deficiencies that might cause tendon and ligament problems. I suffered from "floppy tendon syndrome," which caused the bones in my feet to fracture. I was a mess! It took me months to figure out that my bones weren't deficient and that it was actually the tendons and ligaments that were causing the problem because they weren't properly supporting the bones in my feet. I figured that part out when I realized that I had tendonitis everywhere and put two and two together. From what I read, I needed to take chelated manganese and chelated zinc (but you have to take a little copper, too, if you take zinc). Then when I went to the healthfood store to buy them, the clerk told me that silicon is very useful in restoring tendon health, so I bought that, too (BioSil). I still take all three products periodically to maintain good tendon health.
Celiac expert Dr. Alessio Fasano has written articles on this topic, and he believes that the endoscopic biopsy should no longer be considered the Gold Standard for diagnosing celiac disease based on the facts set forth by Peter above. The chances that damage can be overlooked are so high, this test can no longer be relied on. Dr. Fasano states that if you have positive bloodwork, have symptoms after eating gluten, those symptoms resolve on a gluten-free diet and then return upon resumption of a gluten-containing diet, you have celiac disease. You have made the correct changes to your life, and you will not regret making them. May you have a very healthy and happy life!
I agree with what's already been said....but I have to defend myself! I wasn't posting because I was attending a Celiac Forum in Palo Alto (You know, Tom, over near Stanford! Where were YOU??) I met a very nice young lady from Germany who is living in Lafayette as an au pair. She just learned last month that she has celiac (oddly enough, her doctors in Germany were clueless and the doctors HERE in the U.S. diagnosed her--go figure!), but even though all of her tests came back positive for celiac, her gastro has placed her on a gluten challenge in order to undergo an endoscopy. The doctors at the celiac forum told her that was crazy! I personally don't believe in gluten challenges--I believe that the damage that could possibly result is simply not worth it.
Oh, and IrishHeart, Dr. Tom O'Bryan was at the forum, and he was far and away the best presenter of the day. I'll have to report to you what I learned!
Hmmmm.....I've reread your posting several times and am concerned. If your nutrient levels come out fine, I think a trip to the ER might very well be in order. They should check you into the hospital and keep you there until they determine what's wrong. Your symptoms can mean anything from nutritional deficiencies to heart arrhythmia to an aortic dissection to a blood clot in your heart to ???? You are wise to stay on top of this and demand answers from your doctors. If they're clueless, then, yes, please visit your ER. At least, the doctors there will have a different perspective and may run additional tests that your other doctors may not have thought of. Also, if possible, bring a relative or friend with you to serve as an advocate. When you're not feeling well, it's easy for the doctors to dismiss your symptoms and send you on your way--an advocate can stand up for you, attest that you are NOT yourself, and that you need medical help ASAP. Be sure to impress on your advocate ahead of time what you expect him/her to do on her behalf.
Please let us know how you eventually resolve this problem, okay? Good luck!
My daughter was 22 when she sprained her ankle badly while running a marathon. Although I strongly suspect that she has celiac (has many of the symptoms), she refuses to get tested or even consider for one minute that she might have to change her diet. I remember the doctor ordering X-rays because he said that she had a "high-ankle injury" which can cause a fracture up the front of the leg. Luckily, she didn't have a fracture, but it took nearly a year for her ankle to recover. She was in a cast for eight weeks following by 2-3 months in a walking boot...and then she had to wrap it for a number of months afterward.
So, as to your questions, it IS common to experience a fracture like you described after an ankle injury, so I don't know if the celiac contributed or not. Now, you mention injuries to your tendons and ligaments, and, of course, if they had had the strength to keep it together, your leg might not have fractured. I experienced a soft tissue injury in both of my feet (with fractures, too) several years ago, and I discovered that the injuries were the result of low manganese, silicon, and zinc. Had my tendons and ligaments been healthy, my feet would not have fractured. Manganese, in particular, is very important for connective tissue health and overall muscle health. You might consider taking the chelated forms of manganese and zinc for a while (should help your soft tissue heal, too) and perhaps some silicon (BioSil sells a good product that some of us on this forum use). After I added these supplements, my connective tissue pain and fracture injuries resolved very quickly. Of course, you're headed for surgery....but perhaps you need these supplements to restore your muscle/connective tissue health so that you don't injure yourself further.
Congratulations to you! And, yes, I share your concerns--the genes, as well as the triggering, of celiac always worry me.
I have to mention, though, that I believe your doctor is wrong not to test your children for celiac. Many celiacs are asymptomatic, but damage could still be occurring to their villi. By the time the damage is done, some of it may be irreversible (such as neurological damage). Your children SHOULD be tested regardless of whether or not they show symptoms. With regard to your new grandbaby, maybe he will escape the legacy. However, with the celiac vaccine on the horizon, he will probably have little to worry about.
B12 is only one of the B vitamins, and I would highly recommend that you take a Co-Enzyme Vitamin B Complex, because ALL B vitamins are extremely important. If you're not absorbing B12, you may be having absorption problems with some or all of the rest of the B vitamins.
You express yourself so extremely well, I hope you consider writing a novel while you await your government's decision....and, no, I'm not kidding! Please don't waste your writing talents! I used to teach writing at a private college, so I reocgnize excellent writing when I read it. You're very gifted...and I hope you explore all of the opportunities available to you.
You're still very young, and once you get a handle on your health issues, I imagine that your future will be bright. Thank you for sharing your dilemma with us, and I sincerely hope that you can get back on the right path.
Is there any chance that you're sensitive to soy? If I were to have such a bad reaction to a processed product, that would be my first suspicion. Also, is it possible that special gums or unusual ingredients may have been used that would bother your gut?
If none of the above apply, thank you for alerting the rest of us of the potential danger.
Thank you for your detailed responses, but those responses have made me think a bit. You express yourself EXTREMELY well, and you seem patient, understanding, and analytical. These skills are desperately needed in Sydney right now. My daughter lives in North Bondi and works in Sydney (I visit her every year and LOVE Australia), and her company has had a terrible time trying to find employees with your attributes. These are all skills needed for customer service jobs (my daughter works for a type of technology company), and currently the unemployment rate is so low in Australia, her company simply can't find employees to fill positions. I would assume that this is also the case with other Aussie companies.
When I've visited Sydney, I've been over-the-top happy about the gluten-free options and how carefully my meals are prepared. There's a Brazilian barbecue place downtown where almost every single option on the menu is gluten free, including the pasta and the cheese bread! At the Westfield Mall, the food court offers gluten-free pizza and other options. If I could choose to live anywhere in the world, I would choose Australia.
So...please don't sell yourself short. You have much to offer the business world! You would probably make a wonderful teacher with your skills and natural abilities; however, while you're going to school, I think you may have a great career in some type of customer service position--believe me when I say that exceptional writing and communication skills are very hard to find.
Take some time to recover, regain your confidence, make plans, and then take advantage of the opportunities that I know await you. I have no doubt that you will be successful.