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About cyclinglady

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

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  1. Me too, I am not a member of Medscape. Is this the article? I goggled the topic and filtered using "news". (Hope it works!) Celiac Disease in Children: Experts Clarify Diagnosis and Management Recommendations Here is what I liked.....a gluten sniffing dog for helping kids to remain dietary compliant! Count me in!
  2. I would ask for a GI referral if your PCP is not authorized to order the rest of the celiac panel.
  3. I'd say that TTg IGA is negative and would not consider it a weak positive, but....I am not a doctor! 😏 I do know that each lab has different ranges and you should just compare your results with the ranges the lab uses (not from the Internet). Your ferritin is low and your doctor should find the reason why it is low. Again, celiac disease can not be ruled out until you have the complete panel run. Why? I have never had a positive TTG test even in follow-up testing (biopsies: Marsh Stage IIIB). I test positive ONLY to the DGP IGA. Get the rest of the celiac panel.
  4. Those could be celiac symptoms or they could be something else. Just because celiac runs in your family, I would not jump to conclusions. That could be dangerous! For example, my niece presented with celiac disease symptoms. She tested negative but they found that she has Crohn's (not that she can't ever develop celiac disease). While a gluten free diet could not hurt her, it is not the cause of her Crohn's flare-ups. I would not worry about his weight unless he is no longer on the growth charts. There could be more related to his anxiety issues too. i would NOT recommend sharing prescriptions, especially on a 9 year old! Dapsone is some pretty evil medication that can do some serious liver damage (but if you have DH or leporisy, it might be worth the risk -- but I would think not for kids). For DH, sticking to a gluten-free diet is much preferred, but I will let one of our members who has DH comment on that. Those with DH often do not test positive in blood work. Best to get a skin biopsy (tricky on DH so read up). Please find a dermatologist and/or a Ped GI who is celiac savvy.
  5. The blood test results are negative (and he had the complete panel). No GI issues (per your posting). What makes you suspect celiac disease?
  6. Sure, celiacs can have various intolerances that may or may not resolve with healing. A classic one is lactose intolerance. Corn, soy, and nightshades (e.g. Potatoes) are common. Why? Here is a theory from Dr. Fasano, a leading celiac Expert (PED GI at MA General). i like his lecture and it explanations so many issues celiacs tend to have:
  7. Great that he ran the TTG IGG again, but what about the DGP IGG? That should be run again too as that was elevated orginally too -- they could still be elevated from a glutening. Many doctors think that the DGP test is actually better for dietary compliance. Google it!
  8. That is great news! Please make sure a complete celiac panel was taken which includes the EMA and DGP. Do not just trust the doctor's word. See the test results in writing. I would just hate to find that a mistake was made. In any case, make sure they find the root cause of your illness.
  9. There really aren't many studies done that follow Celiacs and their levels of healing. Here is an article about a study that I once saw (but can not locate at the moment): As far as diarrhea, being a sign of damaged villi, I can only speak for myself. I had flattened villi (patches) and I had no diarrhea, but only anemia (little did I know of the bone damage). I have had follow-up blood work, but no biopsies. Healed or not my symptoms improve by maintaining a gluten-free diet.
  10. Dear Weary, I am so sorry that this is happening to you! 😟. I get the OCD thing. Are you sure your meds are gluten free (dumb question, but had to ask)? Have other AI issues been ruled out? Did they do a follow-up endoscopy/colonoscopy/pill camera?
  11. Did they run a DGP IGA? While your DGP can take over a year to come down, I still think you should be getting tested every six months until you see a downward trend. I am not making that up. Google it. My DGP was off the charts when I was glutened last summer. My symtoms were severe, yet at diagnosis, I just had anemia. It took six months for all symptoms to completely resolve (rashes and hives took the longest and three month to regain dairy). What I am saying is that symptoms for celiac disease can change.
  12. This is an older posting, so I am not sure the original OP will respond. Kaiser is great, but they are all about keeping the costs down. So, they do not allow their first-line doctors to order anything but the TTG tests for celiac screening. Only a GI (or perhaps a higher up specialist) can order an entire panel. If you tested negative on the TTG, and are still struggling with celiac-like symptoms, I recommend asking for a GI referral. Ask for the complete panel and document in writing (be nice). Why do I know this? I test negative always to the TTG. When family members went to Kaiser to get celiac testing, their PCP doctor could only order the TTG. So, do not give up on a celiac disease diagnosis without getting the complete panel.
  13. I am concerned that you are not getting any follow-up care regarding celiac disease or Non-celiac gluten Intolerance. You had elevated antibodies. I understand that your biopsy was negative, but at the very least you should get retested for diet compliance and to check for any deficiencies. I do! You can't really go by symptoms to determine if you have been glutened or not. I was just anemic when I was diagnosed. Only a blood test could tell me if I were anemic again unless I let it go a long time and I get out of breath, but that's scary severe. When I was glutened last summer, my symptoms were so severe. So different from when I was diagnosed. My GI thought I had SIBO, but my DGP tests revealed.....a glutening. I am also concerned that you think you are eating out twice a week at safe restaurants. What does that mean? Are those restaurants run by celiacs? Are they 100% gluten free? Even though they may have a gluten-free menu, you are still risking a gluten hit. People make mistakes. Cross contamination happens. Again, best to get re-tested. Those DGP numbers should be close to zero after a year and a half of being gluten free. Take care!
  14. I would add that you request a full celiac panel (EMA, TTG and DGP). Why? Because the typical screening TTG test is very good, but it does not catch all celiacs (like me). Here's the list of blood tests:
  15. You symptoms could be celiac related. It's hard to say, since there are over 200 symptoms attributed to celiac disease. All that you listed could be celiac disease....or some could be related to Hashi's. I had some pretty severe night sweats. You might want to get your thyroid and other horomones (e.g. estrogen, etc.) checked. These can flucuate like crazy during a thyroid flare-up or celiac flare-up. Who knows! My thyroid went crazy swinging from hypo to hyper in a matter of days. Drove my doctor nuts. It all settle when I went through menopause at the very same time I was diagnosed with celiac disease. My symptom was primarily anemia. No tummy issues. But I had lots of little things that I blamed on menopause, thyroid and aging. Most of those have gone away on a gluten free diet. Even my enlarged thyroid is normal size again and my nodules have disappeared! It's like my whole immune system has settled down --- as long as I avoid gluten! Then all bets are off! I did develop osteoporosis along the way. I fractured my vertebrae doing nothing two months after my celiac disease diagnosis. Like you, I'm 5" 2". Wait. Those fractures! I'm now just 5' 1". I'm little. My kid was really little too. She was always under 5% on the weight, but her height was 50%. I would think that both height and weight being low, could very well be a sign of celiac disease. I didn't worry because my kid was at least normal in height and her head was normal as an infant. Her Ped kept trying to fatten her up, but I refused. I fed her healthy things. By 1st grade, she was in the 25% range for weight. Now at 15, she's at 50% and an athlete (track and water polo). Constipation and diarrhea are common symptoms of celiac disease. Not everyone has to be wasting away either! cholesterol levels were always super low. My old GP used to pat me on the back. Little did I know that it was another sign of celiac disease. Those liver enzymes? Happens a lot with folks who have celiac disease. I would get your kids screened. Remember, celiac disease can develop even when you are 90 years old! So, I test my kid every few years even if she's symptom free. She's gluten light (our house is gluten-free), but I manage to give her prepackaged gluten food in her lunch. If she's lucky, her friends make her sandwiches! When I am getting ready to test her, I make sure she gets plenty of gluten. Funny thing is that she'll take a gluten-free homemade cake over store bought gluten-filled cake. She also likes her burgers "protein style" meaning they are lettuce wrapped. If your biopsy shows up negative, ask for a pill camera. Again, that's how my 19 year old niece (same age as your sister) was diagnosed. Something is wrong. Don't settle. Keep advocating for yourself and your kids! Enjoy your little ones.