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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. @kkgirl can you get copies of your old lab results? You can get them from your doctor (and you should keep copies). Do your parents have them? Can you check to see if you actually had the entire celiac panel? I ask because I test positive to only ONE on the panel (DGP IGA), yet I had a intestinal damage. Did you have biopsies six years ago or just a screening celiac blood test?
  2. First, do you have celiac disease? Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination? If you haven't had the test, you should ask your doctor for one. You could also also ask for a follow-up endoscopy to see if you intestines have truly healed. This will rule out if gluten is really the problem. If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms. There is no test for NCGI unfortunately. So, it is hard to say if gluten has been sneaking into your diet. You really are going to have to try to figure out if you are getting gluten into your diet. If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO. Has this been done? Once a celiac, always a celiac. There is no cure for celiac disease except to remain on a gluten free diet for life. I am not sure about NCGI. Not much research has been done. Maybe others can chime in?
  3. Annual celiac antibody testing is, in my opinion (and based on what celiac researchers have published), is critical, especially for a 12 year old. Life is going to get harder for her. Peer pressure is huge (I have a 15 year old daughter), and remaining diet compliant can be tough. In Dr. Fasano's, Gluten Freedom, he discusses a young patient who became ill in high school after being gluten free for years. His parents were perplexed. Dr. Fasano took the young man aside and he confessed that while on a date, he didn't want to bring up his celiac disease. So, he ate pizza. He was too embarrassed to tell his parents. My daughter does not have celiac disease. She was first tested two years ago. Since she is symptom free, is not anemic and her other lab work is fine, we'll wait to test her in another year. It all depends on the patient, but every few years, testing is recommended for all undiagnosed first-degree relatives. It certainly sounds like your younger children should be screened. I wish you both well!
  4. Perhaps you should consider asking for a GI referral. You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten. It is the "gold" standard for a celiac diagnosis anyway! Here's the deal with going gluten free. You can do it. It costs nothing, but you must give it six months or longer. You'd need to think like a celiac, but it can be done! I'll tell you my tale. My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist. After a year of mistakes and learning, he got well. It worked! Thirteen years later, I was formally diagnosed. (It was a shock as I was only anemic at the time.) Hubby would be the first to say that I have had way more support from family, friends and medical. I must say, it's nice to see those lab results. It really helped me adhere to the diet in the beginning too. So, you know your medical situation. You must do what's best for you! I hope you feel better soon!
  5. I buy Udi's gluten-free bread. But I feed it to my gluten-free hubby. Sure it's gluten free, but I discovered that I react to the Xanthan Gum that is used to replace what gluten does to bread (that stretchy binding thing....). It does not bother my hubby at all! I stick to gluten-free flours and use other gums. But the best thing is to stick to whole foods (avoiding all processed foods, even gluten-free) until you are feeling better. Your gut is damaged and needs to heal.
  6. @notme! You bet I'm going to all the Back to School Sales. Some of my little soft coolers are getting grubby and Oxyclean is not able to do the job! I do like the ones that are a little pricier when I'm sneaking in food into a restaurant. Somehow, a hard-sided Igloo looks out of place!
  7. Congratuations! You and 30% of the population carries the genes to potentially develop celiac disease. A gene test just excludes celiac disease but can not diagnose it. Have you been on a gluten free diet? Is that why you were not able to take the standard celiac blood test?
  8. Back to Dr. Google for you! A histamine intolerance is not a true IGE mediated allergic reaction. Read up! It does often (like many intolerances) occur with celiac disease because the small intestine is damaged. It can resolve once the gut has healed. celiac disease antibodies can take time to build up (in your blood stream for the test or skin). That's why the gluten challenge is 8 to 12 weeks. In the case of DH, you can eat something and days or weeks later, the DH rash will appear and you'll go crazy trying to figure out when you got "glutened" (but don't take any serious gluten advice from me because I don't have it). You can have several things wrong with you and a wheat allergy and celiac disease can occur at the same time. Add on something like Mast Cell Activation, Autoimmune Hives, Histamine Intolerance.......the list can be endless (at least that is how some of us feel.) Of course your high school could be making you ill. Think of all that stress! Who knows what lurks in your building, but let's face it, you ate some gluten. Best of luck to you on your challenge!
  9. Ugh! So, you have early stages of celiac disease and that was after being gluten light? It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage! Time for a new GI. You can also as for another pathologist to read your biopsies, but seriously....... Have a conversation with your current doctor about the reasons why he is hesitating. He would rather you continue to become more ill or improve your health? Are you going to be scarred for life with a celiac disease diagnosis? Maybe he is one of those people who think it is impossible to live with wheat, rye or barley! I don't get it!
  10. Couldn't have said it better!
  11. If you are going for an endoscopy, then please ask for a celiac antibodies COMPLETE panel. This will help you determine if you have been diet compliant (zapped by hidden sources of gluten or accidental cross contamination) and if your doctor misses the (possible) damaged areas during the procedure. That way you can rule out celiac disease and THEN worry about the possibility of other AI issues. I did this last summer. I got really sick. My GI thought SIBO right off the bat. But I asked just to be tested for celiac disease. Sure enough, I had elevated antibodies. No need to test for SIBO or anything else at that point. I just waited a few months for symptoms to subside. Good Luck to you!
  12. I just traveled three weeks this summer in Europe (Eastern). Do not trust that the airlines will remember to load a gluten-free meal for you. There is a 50-50 chance that they will not (in my experience). We packed ONLY carry on. Still found plenty of room to stash some emergency food. You should be able to find food within an International airport. Chips and typical junk food clearly labeled, even fruit. Print or load Celiac travel cards with you in all the languages you will need. They are free. Google it. Found these handy (not only in restaurants) but in the markets when we could not read labels but the staff could read them and Help us to make gluten-free choices. amazing how you can communicate without knowing the language. A few words like "thank you" in their language go along way (so does Google Translator). Never met anyone who was not willing to help. I carry a collapsible cooler that I pack with food and bags of ice to eat on then plane or right at my arrival or connection. I take extra zip lock baggies with me. Sometimes TSA will let you through if the ice is still hard (not melting). Some will make you toss them then I just ask a restaurant to refill my ziplock baggies after passing Security. I also carry a doctor's letter on my phone to show I am celiac, but no one has ever asked for me to present it. Even though I carry a "third" piece of luggage on board, I have not been stopped. Both that and my day backpack fit under the seat. I use this cooler as needed through our trips. If not, it fits in my backpack.
  13. Great points! We use the "Find Me Gluten Free" app a lot (post too). We look for reviews created by celiacs. I probably sounded like Debbie Downer when I posted above, but it is possible to go out and dine at restuarants, it just takes a little research and time to the restaurant staff.
  14. Your best bet is to bring your own food (bars, nuts, dried fruit, etc.). Confirm with the airline about The availability of a gluten-free meal, but don't count on it.
  15. Why would your PCP go against the advice of leading celiac researchers and the American and British GI Associations? The endoscopy/biopsy is still the gold standard for diagnosing celiac disease. I understand your daughter's situation, but I would get a second opinion from a GI before going gluten free.