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About cyclinglady

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    Advanced Community Member

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    CD diagnosis: 3/2013 via antibody testing and biopsies
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

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  1. It is enough for the endoscopy, but not for the blood panel. It could be worth trying for the blood test, but there is a greater chance of it being negative. I assume you have been gluten-free for a while. I admire that you were able to do the gluten challenge! (I guess I should have pulled up your previous posts, but I was busy getting my kid to school.)
  2. The tests you provided can not provide any information pertaining to celiac disease. You must be consuming gluten daily for 8 to 12 weeks in order for any of the celiac blood tests to work. Only 2 to 4 weeks for the intestinal biopsy. But both, yes, both are needed for a celiac diagnosis because many other things can cause intetinal villi damage. Why isn't your doctor following the standard algorithm for diagnosis. Does he even suspect celiac disease? Got to head to school. More later!
  3. The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests. Not all celiacs test positive to the common Screening TTG. The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs. Here is a link to the University of Chicago's celiac website. When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association). Now they have expanded the list of celiac tests. Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me. ($400). It paid off. Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative. My biopsies revealed some severe intestinal damage. My new health provider only allows PCP/GP doctors to only order the TTG. So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI. Yep, it is all about the money! Keep eating gluten and make sure your GI takes four to six samples during the endoscopy. Maintain copies of all your results. Your symptoms? Yes, there are over 300 celiac disease symptoms. celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that! Do not give up!
  4. Bravo for being strong enough to bring this topic up. Depression, anxiety, and other mental or neurological issues are common in celiacs and those with NCGI. Science is finally catching up to what many of us have already known to be true. I have suffered from anxiety and still have some neuropathies. At first I blamed menopause (that alone can make you crazy), but my symptoms tend kick in after a Gluten exposure and improve as I heal. You are not crazy! Gluten can cause so many problems. What other disease requires that the patient be in charge of "medicating" and caring for themselves? Most of us after a diagnosis get a "Well, just avoid gluten. Lucky you that there are so many restaurants that offer a gluten free menu!", speech from our doctors. We never get time off from thinking about food, our next meal and will it be safe? Our relationship with food changes dramatically and it can be exhausting. We do need more resources and support from medical, but for now, at least this forum is helpful!
  5. Good point. My ferritin was a 2; however, I was processing iron just fine when I was diagnosed. That is what caught my GI's eye when I went for my first "over 50 club" colonoscopy. Celiac blood test positve (just one on the panel) and endoscopy revealed Marsh Stage IIIB.
  6. Welcome! Here is more information to support what Karen said about testing for celiac disease: You should really be referred to a GI (I assume you have some other autoimmune disorder.). I would strongly recommend the complete celiac panel and rule out other diorders like Crohn's etc.
  7. Despite being overweight, a celiac can be malnourished. Your body could be hungry for missing nutrients. You need to eat wholesome foods that are naturally gluten free. Avoid processed junk foods. Fill up on protein and good fats and reduce carbs. I am in the U.S., but hopefully a member who lives in Canada can provide some advice about speeding up the process and obtaining a GI appointment. Since you have been gluten free for six months, you might as well continue insuring that you avoid accidental exposure. You can discuss a gluten challenge with the GI later. i hope this helps.
  8. Time. You need time to heal. Yeah, I am like a broken record! 😄 So...Lycra is your best friend for now (that and old baggy sweats!). Hang in there! Hugs!
  9. Welcome! I am confused. Did you have a negative celiac blood test or a negative biopsy (taken via endoscopy)?
  10. You are sick. Depression and anxiety are symtoms of celiac disease (and many other illnesses). It is hard now to look forward and imagine a great life, but it is possible. I think you are already in the thick of the grieving process right now. Reaching out to this forum can be very healing emotional (it is not just all common sense advice about gluten-free food!). I did not say not to exercise, but to do it gently. This is not the time to train for a marathon or triathlon! The SCD Lifestyle is all about the money. Seriously. They are selling a book.
  11. Gracey, It am a mother and I am going to give you some valuable advice. You need to keep and document everything related to your health. Every lab test result, notes from your doctor's visits, etc. Why? Because only you are your best health advocate (except for your mom). Doctors come and go, but it is up to you to manage your health. When I changed insurance and doctors, I had copies of all my medical records in hand. My new PCP was impressed. There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc. I had physical proof. As an result, she was quick to refer me to a new GI and order tests to measure my progress (e.g bone scans). My family health history chart helped not just me, but other family members. So, find out if biopsies were taken during your endoscopy. Get the pathologist's report. See if your doctor checked for other issues besides celiac disease. Hugs!
  12. I agree with all the advice you have been given. It is excellent! I just want to add that things will get better. There is a huge grieving process to go through. Do not fight it. You have a right to grieve as your health and lifestyle will change, but you will adapt! Exercise gently until you feel a bit better. There is plenty of time to exercise hard later. Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning on her bike through the Santa Ana winds (better known as the Devil's winds!). But I am three years into my recovery. I took it easy the first six months because I was anemic. I teach few exercise classes, bike, swim and run and I am in my 50's. The SCD website? It can scare the (bleep) out of you. There was one point that I took from the site and that was to stick to whole nourishing foods. No rocket science -- just common sense.
  13. Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?
  14. It does sound like a Glutening and you are just a few months into the diet. It might help if you read our Newbie 101 thread under the "Coping" section. Here is some information about rice milk: Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined. When I am glutened, I lose the ability to digest lactose for a while. Salad? Great but it can be rough on a sore gut! Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better. Did your folks give you salad after a bout of flu? Or did you stick with jello and broth? I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully). You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily). If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor. Remember, celiac disease symptoms can change. And here is the can take weeks, months or years to heal from celiac disease. Two months in is nothing, really. Why? It takes time to figure out the diet and time for antibodies to come down. celiac disease is an autoimmune disorder triggerEd by gluten. once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!
  15. With the results of the tests you have provided, the next step is a GI consult. Verification of intestinal damage can only be obtained from biopsies via endoscopy per the majority of the world's leading celiac medical experts. Once celiac disease is ruled out, then possibly a non-celiac gluten intolerance can be made. Your daughter has had Lyme Disease (if I recall). That adds a special set of complexities to the issue and one that is definitely beyond my knowledge (and most of our members). Learn more about celiac disease from the University of Chicago. It has one of the best and informative websites: