• Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

2 Neutral

About MommaBecker

  • Rank
    New Community Member

Profile Information

  • Gender
  • Location
    North Carolina
  1. My son is 11 months old and is super sensitive His celiac was noticed before he even tried gluten in person. He can detect miniscule amounts in my breast milk which has been a struggle. He also has DH which is a great indicator when he has had a bad food reaction. My question to the super sensitive people is do you have any problems with other grains? My son can't do any corn or soy derivatives without having DH flare ups. He also can't have millet, sorghum, rice, amaranth, coffee or legumes. Any suggestions? Is this something he will get better about? I know that we can clear his skin totally when he is gluten, corn, soy, and grain free completely. He has no allergies and has been tested for every kind.
  2. Since my son is a baby, it is easy to take poop photos too. While not the most amazing photography collection in the world, the slide show with information about what our son ate prior does seem to help the doctors.
  3. I highly suggest that you have the normal allergy panel done along with testing all the gluten culprits. This means not just wheat but barley, rye, and others. Make sure you have those results when you go to the GI. They will most likely pass your child off as having allergies. We had to have our testing redone 3x before the believed that our son was not allergic to wheat. It is worth keeping a file with all the lab copies to take to appointments with you. I also keep a journal that i log all appointments, conversations and results into so I don't miss anything when answering doctor's questions.
  4. My son had his genes activated at 2 month old after problems with Thrush were treated with antibiotics and antifungals. We had a really hard time convincing doctors what was happening. If you can get a positive blood test that will help. Our son was so sick that we didn't wait to do the test and went gluten free immediately. He also has Dermatitis Herpetiformis which may look like eczema to most doctors. I would recommend you get the test, keep a food journal and request a pediatric gi. The wait for them can be months so you will have plenty of time to do lots of trial and error! Good luck.
  5. My son is 11 months old and will be finally having his scope performed on the 30th. I read the thread regarding questions to ask and I wanted to follow up with one of my own. My son is EXTREMELY sensitive to gluten, corn, and all grains. He also has DH which flares with even iodized salt. How long before the test should I be feeding him gluten (we have been grain free for 6 months) and will the test show if he has leaky gut? We have been unable to do the leaky gut blood/urine test because it consist of drinking a corn syrup which he cannot tolerate. We are worried that if we don't feed him gluten then the test will show a false negative. If we do feed him gluten, it is going to be awful but the trade off will be finally having the diagnosis so doctors stop ignoring his health problems. Any thoughts on what to feed, for how long and how far in advance?
  6. Diagnosing An Infant

    I am so sorry that you have been going through all of that. I completely understand. Have you looked into the GAPS or Paleo/Primal diets? We changed our life thanks to our son and found huge relief with the Paleo diet. The hydrolized formulas all contain corn which even though it has no corn or soy "proteins" it still is problematic for our son. He has "leaky gut" from all the intestinal trauma. Our main doc said if we hadn't fixed his diet so early he might have progressed into an Autism diagnosis because the grains, soy and dairy make him have neropath issues and distance himself. I would suggest looking into what snacks and treats you give your little one. The diet change was hard the first month but it has been amazing in so many ways. When our son gets ahold of things that are not great for him, he does more than have a Celiac reaction, he has a full body and mind melt down.
  7. Diagnosing An Infant

    What you said is our understanding as well. The military TriCare system will not accept the diagnosis of Celiac via DH. They also will not schedule for a gut biopsy without a positive blood test. Unless we have a outside doctor list him as having Celiac, the DH diagnosis gets us nowhere. It is absurd. Our dermatologist put DH on his file and wrote on her notes that Celiac would be the source but that isn't enough for our medical system to officially diagnos him.
  8. My son was born in June of last year and he seemed normal at birth. After the second month we had a terrible bout of thrush that was treated with antibiotics and antifungals for both of us. After the treatment my son started having stomach distension, horrible foul smelling mucus stools and diarrhea screaming fits, heartburn and red spots on his skin. This continued to worsen until he was awake around the clock with screaming, having to be held upright, swelling so large his stomach wouldn't fit in pants, and constant mucousy stools that were so foul my husband and I threw up once changing him. His skin went from small red spots to larger boil like lesions that he constantly itched at. He also was getting covered in cradle cap. We took him to the doctor almost every week and they said it was colic/reflux/or possible FPIES. We continued an elimination diet (breastfeeding) until we removed all dairy, soy and soy derivatives and gluten. The gluten removal made a HUGE change. After 6 weeks he stopped having mucosy stool and stomach swelling was gone 1 week after gluten removal. His skin continued to be a huge problem and almost all of his upper body was covered in large boil like itchy lesions. He would get them on his neck, arms, genetails, face, arm joints, leg joints and buttocks. At this point we saw a Dermatologist who diagnosed him with DH. She was certain that was the problem. (As we had suspected). Since we had been gluten free, she suggested we go Corn free. That made a HUGE difference. Even the small amount of corn in mustard would make him sick. After that we still had some outbreaks but found some people on this site removing iodized salt to stop DH. We tried that and within 48 hours his skin was almost completely clear. So after this long introduction, the question is what steps to do to be officially diagnosed with Celiac? Our regular doc can't do it because we removed gluten before the blood test so he needs a positive test to Dx. We were sent to UNC's Children's Hospital and the head of PedsGI said that "babies can't get Celiac because there is no way to have gluten in breastmilk". He also refuses to accept an infant with DH even though we have 2 other derms confirming it and a positive biopsy. We have been sent to 5 allergists to look for "allergies". Each doc there says it is Celiac and sends us back. How do I get this officially diagnosed and what kind of follow up care should I be asking for?