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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

cyclinglady

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About cyclinglady

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  • Gender
    Female
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    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
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    Orange County, CA

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  1. Here is more information about testing family members. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
  2. I am on Armour Thyroid hormone replacement and it is gluten free (20 years). I believe Gemini is on Nature thyroid and it is gluten free too. I have never tried the synthetic drugs as my doctors have always like Armour's results. Use the search box in the forum to determine which synthetic drugs are gluten free. Thyroid replacement, although considered a prescription drug, is just that a replacement. You need it to survive. So, do not think of it as taking a drug. I would ask for an antibodies test for your thyroid to confirm if it is autoimmune or not. Congratulations on your reduced antibodies. Remember, that they can rise again when exposed to gluten. I would suggest that you get and keep all copies of your lab tests. It really helps to have your medical records on hand. Very handy for second opinions or when changing doctors.
  3. I am not worried about them eating gluten free. If you want to test them for celiac disease, they must be on a diet containing gluten daily for 8 to 12 weeks.
  4. Welcome! Glad you found us. Have you had follow-up testing? This may determine if active celiac disease is your source of your current issues. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ If celiac disease is not the source of your joint issues, you might need to go back to your doctor to rule out other autoimmune disorders. Are you really sure your diet is truly gluten free? Do you eat out? Eat processed foods? Consider a Whole Foods diet until you see improvement. http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/ it sounds like your friends are not very supportive. I travel and dine with friends. I usually bring my own food or eat prior. I order a drink. Everyone is used to it now. I never feel excluded as I value feeling well. But I had to let them know that I was okay with them eating and my not eating. The goal is not to eat, but to maintain relationships. I also plan outings that are not food focused. Like going to the movies (I bring my snacks) or having a picnic where we bring our own foods. I also host lots of gatherings too. I hope this helps. Hang in there. 😊
  5. I am so sorry that you are suffering! Have you had repeated celiac antibodies testing since your diagnosis? http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Depression and anxiety can be attributed do to celiac disease if it is active. It can at least compound your issues with depression. What about your thyroid? Do you have autoimmune thyroiditis (Hashimoto's or Graves)? Are those antibodies elevated? Sometimes the fillers in Prescription drugs can cause symptoms. It may not be related to gluten but other fillers like corn. Consider a food/symptom journal to help indentify intolerances. Consider the Fasano diet if your find that your antibodies are elevated. It basically emlimnates all processed foods. For example, I can not eat Xanthan Gum. It makes me sick. So, I can not buy commercial gluten-free breads. My hubby can eat them, but for some weird reason, I can not despite being gluten-free for for years). http://www.thepatientceliac.com/2013/03/04/the-gluten-contamination-elimination-diet/ So glad that you found us! I am sure others will soon come to your aid!
  6. As long as her celiac disease is not active, she should in theory perform just fine. I would be curious as to how you are handling her food while at college. Can the school safely accommodate her? I would love to hear about your experience in finding a college that meets your daughter's needs and abilities while maintaining her health. I have a daughter who will soon be in college and I am sure others on the forum would benefit from your advice. Not much has been discussed here or in the media about this subject.
  7. Test Results

    Oh...are you a smoker? That can slow down healing.
  8. This happens to me, but the severity has diminished. Mine is due to hormonal shifts (menopause or after childbirth). I used to sleep on beach towels. Kept a stack of them and clean nightgowns on my nightstand. Often had to blow dry my hair in the middle of the night because I was freezing with a wet head in winter. You should discuss this with your doctor as night sweats can be attributed to other illnesses.
  9. Hi! Some celiacs (10%) are seronegative (if CDis suspected, a GI will proceed to endoscopy). Also, not all doctors order the complete celiac panel. This might have occurred with you back in 2014. https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf I would not recommend having your kids go gluten free with you until you have had them tested. I maintain a gluten-free household, but I make sure my kid gets gluten in her lunch daily while at school. Because I have celiac disease, she is tested every few years for celiac disease even if symptom free. You should get copies of your files and lab results. Consider a second opinion if you are doubting your diagnosis. You will know more when your pathologist's report arrives. Not able to eat veggies? A damaged gut can have a hard time processing any type of food. Raw veggies or fruit can be hard to digest for anyone, let alone a person with active celiac disease. Cook those foods. Able to eat wheat? That was me. I had few GI issues (anemia) yet I had some pretty severe damage. Still can not digest those cooked veggies? Celiacs can have additional intolerances (e.g. Sulfites, lactose, etc.) Some resolve with healing (e.g. Lactose), but others continue. For example, I can not eat garlic, onion or leeks still after four years of being gluten free. We are all different and we can develop different intolerances. Learn more (world leading celiac disease researcher) about leaky gut due to Zonulin which celiac tend to have too much: https://m.youtube.com/watch?v=wha30RSxE6w Long term damage? Lymphoma, malnourishment, osteoporosis, triggering other autoimmune diseases. Depression and anxiety are very common with celiac disease. There are over 200 symptoms that can be attributed to celiac disease. Hang in there. Learn the gluten-free diet. You will soon figure it all out.
  10. Short stature celiac

    Trents has given you some good advice and asked some good questions. At three months, your doctor should have ordered another celiac blood panel to see if her antibodies are declining. Then again at six months and one year based on celiac research centers like this one: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Your endo should refer your daughter to a PED GI, if possible. You should consider a dietician who is celiac-savvy as well. They can help your daughter make good food choices. I am sure you are doing a great job, but the responsibility will soon be on her shoulders because she is not with you all the time. You both might not need this, but it might be helpful. Or join a celiac group (they have summer camps! 😊) Kids (I am not a doctor) have different growth spurts. She might need more time for healing. It can take months in a child to recover and that is dependent on a truly gluten free diet. Accidental exposures can trigger antibodies that can increase for weeks or months. My own kid was in the 5% club on weight and 50% in height during infancy, toddler and young child ages. As long as she was growing a little, I was satisfied as was her PED. She hit the 25% bracket when she was closer to 10, if I recall. She does not have celiac disease! I want to let you know that some families are little. Please look to her diet. Check out our Newbie 101 section pinned under the "coping" section for tips. Do not eat out and avoid processed foods until you see an improvement in her height and weight and have lab tests showing a downward trend. The take those risks of a gluten exposure. Take care! Stay informed and do like you just did -- ask for help. Having a daughter who has an autoimmune disease can be daunting. But she will be fine and so will you! You just have to learn to be a little more prepared in terms of food. And here is the biggie....be patient. This is the hardest lesson I have had to learn. You can do this! Oh....had the rest of the family been tested? They can have celiac disease even without displaying any symptoms! (All first-degree). This is a genetic disorder. Another question. Does she have diabetes or thyroiditis? Is that why she is under an ENDO's care?
  11. Test Results

    Hi Delta! Well, it appears that your celiac screening is negative, but that does not rule out celiac disease yet. I would ask your doctor to run the DGP IgA and DGP IGG (even though you are not IGA deficient). Like you, I tested negative to the TTG and EMA tests, but I was positive on the DGP IgA. My intestinal biopsies revealed a Marsh Stage IIIB. If my GI had not ordered the entire blood panel, my diagnosis would not have been caught. I still continue to test this way even in follow-up blood tests. Then there is the possibility that you are a seronegative celiac. Some 10% are seronegative. The GI would have to do the endoscopy to rule out celiac disease. Learn more: https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf My symptoms at the time of my diagnosis were anemia (no GI issues). Two months after my diagnosis, I fractured some vertebrae doing NOTHING! That is when I got my osteoporosis diagnosis. I was 51 at the time. MY IgA is also very high (over 700). For celiac testing, it is just a control test (e.g. Does the TTG IgA test work). As a stand alone test, it could be something like autoimmune or excessive inflammation. I also have Hashimoto's Thyroiditis which was diagnosed 20 years ago. https://labtestsonline.org/understanding/analytes/immunoglobulins/tab/test/ Please do not settle for an aging or an "it's all in your head diagnosis". Something is wrong. Continue to advocate for your health!
  12. Meds

    Maybe you should have your back checked by a doctor, if the pain is constant and is not improving. You could be developing another AI issue like Ankylosing Spondylitis. At least consider trying to find the cause (compressions fractures, slipped disk, whatever).
  13. LOL about the screaming kid at dinner time. I am happy to report that one of my brothers lived on grilled cheese, Captain Crunch and Bacon and Toast (those foods stick out the most in my memory). He eats just about anything now. If I recall, peers had a pretty dramatic impact on his food behavior as he aged (that and maturing). So, do not lose hope!
  14. Airborne gluten reactions

    Then I would suggest wearing a mask while running your errands. See if this prevents a flare-up. Lots of folks wear one if they have the flu or a cold. I do not have DH, but from what other members have posted, antibodies in the skin can take a long time to develop or will flare up for no reason at all. It can drive a DH sufferer crazy trying to pinpoint the gluten exposure. Read through the DH section of the forum. You might find some solutions. Nightsky has some excellent advice! I have learned from my own personal experience that she is correct. Gluten free is like a diabetic diet. The basis is the same. Gluten triggers celiac disease and carbs trigger insulin resistance. The spectrum of amounts and exposure varies for each individual. It is not "one size fits all" at least from my research. For me, my glucose meter gives me a fast and easy-to-document picture of how I am processing carbohydrates. I wish there was a meter for gluten and how it impact me as an individual on a daily basis, but there is not one. I can only rely on a few blood tests ordered by my GI annually or when I am very ill.
  15. No. But I just want to say I am sorry that you took a hit. I hope you recover fast!