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cyclinglady

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About cyclinglady

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    Advanced Community Member

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

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  1. I am sorry that you are sick! Unfortunately, all celiac testing requires you to be on gluten. 😔. Testing is usually not over until you get an actual diagnosis, but it appears that you may very well have celiac disease. Here is more information: http://www.cureceliacdisease.org/screening/ http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/ in the meantime, you can eliminate dairy products temporarily. It may provide some relief.
  2. I checked the Gluten Free Watchdog (I subscribe) and did not find this particular product, but found the company's oat bran flakes which did not list any gluten ingrediants, but barley was found in testing well over 20 parts per million. I would stick with certified gluten-free cereals, personally. I think it is "hit or miss" on grain products.
  3. What about Xanthan gum? It really bothers me, so I avoid most commercially processed gluten-free breads, etc. Never bothers my hubby though.
  4. He might have celiac disease (or just the start of it). He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it. He might have other food intolerances (milk, dyes, etc.). You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.). Trialing a diet is fine, even a gluten free diet, when you ruled out everything. But you have that quirky TTG result. I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation. An allergist is not a celiac expert nor is primary care doctor. You should get a referral to a Ped GI. If she/he suggests a gluten-free diet, then fine. Because if he improves then, the GI will give you a diagnosis. By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy. This case is not clear and that is a bummer. The cure is the diet. But he will be going to school and a diagnosis will pave the way for accommodations all the way to college. And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing. This is his life and yours. You must do what is best for your family. I wish you well and we are here to support you. I care. I am mom.
  5. I did not mean to imply that you should put him on a gluten free diet. If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy. All celiac testing requires a patient to be consuming gluten. The slightly equivocal TTG? That warrants a gene test at the very least. http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf
  6. I react to certified gluten free breads, but it is NOT a gluten issue. I react to Xanthan Gum. I do just fine making my own baked goods from scratch subbing out the Xanthan Gum for guar gum. My gluten-free hubby does well on commercially gluten-free baked goods. It is just a food intolerance issue in my case. Look to other ingredients.
  7. If you are certain that gluten is an issue, then ask your doctor to run a celiac panel. I did when I was glutened last year. My "glutened" symptoms changed so much that both my GI and I suspected something other than celiac disease flare-up, but blood tests revealed that I had gluten exposure. This may be your chance to get a diagnosis. Also, sick people come first in our house. Everyone in your household, in my opinion, should be gluten free until your health improves or you learn to manage a shared house safely. I wish you well.
  8. This is about keeping your daughter safe. Yes, tiny crumbs can do damage. Can you have a shared household? Yes, but with plenty of training. I did it for years for my hubby and before I was diagnosed. But I was in charge of the kitchen. I did not let my kid into the kitchen for the most part. I love her but she is a kid! I had total control because sick hubby means no food...bills....he came first. Then i was diagnosed. We went 100% gluten free -- even my kid. Yep, last night she had a pot roast sandwich on gluten free bread, like her Dad. I prefer lettuce wrapped. Today, she had a croissant that I had frozen and put it in her lunch. She assembles her sandwiches at school. I gave her prepackaged serving of cookies as a treat along with veggies and fruit. I keep her on gluten but let her eat it anywhere but in our home....okay, the porch is okay! Our family and friends do no not bring any gluten to our house. Yes, our holidays are gluten free and no one misses it. My kid even prefers a chocolate gluten free mayonnaise cake for her birthday over a store bought bakery cake. It is that good (everyone asks for seconds so they are not just trying to be nice.). Even my dog is grain free! You are going to have to see what works for you as a family, but sick people come first.
  9. A biopsy will confirm a celiac disease diagnosis. The genetic test will help rule out celiac disease. It can not diagnose it. That is because some 30% of the population carries the genes needed to develop celiac disease, but only 1% actually go on to develop it. Her test results look look positive to me, but I am a STRANGER without a medical degree. The facts I stated in my first paragraph can be googled for accuracy though. I hope she feels better soon! Keep her on gluten until all testing is complete.
  10. Maybe. Maybe as there are over 300 symptoms attributed to celiac disease. So many of them overlap with other issues. If he is diagnosed with celiac disease, he can still have allergy issues. Keep him on gluten until all testing is complete (hard, I know!). I hope he feels better soon.
  11. KarenG is wise, wise, wise!
  12. There is a lactose intolerance test, but avoiding all sources of lactose (milk sugar) and milk proteins (casein) might be worth it if your husband agrees. Research more about this. Not everyone has rashes and vomiting. You can have mild allergies that worsen seasonally. Geez, I don't vomit or rash up when I ride horses or breath in mold or ragweed (but I do and have gone anaphlatic with medications). Allergy testing is spotty at best. Try keeping a food, symptom diary. It might help. Avoid processed foods. He could be reacting to the colorings, preservatives, etc. This wouldn't hurt anyone in your family! In any case, trust your gut! Something is wrong. Keep advocating for him. As a mom I worry about some weird symptoms my kid experiences. She tests negative so far to celiac disease, but autoimmune issues run like crazy in our family. i just keep a watchful eye, along with her doctor. No need for her to suffer for years like so many do with AI issues. That is one positive thing about my celiac disease diagnosis. My 19 year old niece had vomiting issues and abdominal pain. celiac disease was ruled out, but we persisted. She was just diagnosed wiith Crohn's and the damage found on the pill cam was severe (in a spot not reached with an endoscopy or colonoscopy yet her symptoms did not match the standard Crohn's symptoms. She now knows to watch out for celiac disease for the rest of her life. IBS issues? Your other family members should be tested for celiac disease. I would not accept an "I be stumped" diagnosis. https://www.verywell.com/gluten-vs-irritable-bowel-syndrome-562696
  13. I am sorry about your daughter! I have Hashi's and I never (even in follow-up testing) get a positive TGG. Funny, huh? My GI is perplexed too, but it reinforces that fact that celiac disease presents differently and symptoms can wax and wane making a diagnosis more difficult. That is why researchers have been considering screenings for everyone, but it does not makes economic sense. 😞. Not everyone is wasting away either. I was was shocked that I had celiac disease. I presented with anemia at a time when I was going through Perimenopause and already had a genetic anemia. How my GI caught it, I do not know (he must have just attended a conference) as I was in for a routine colonoscopy (am over 50)! But when you have one AI disorders others can crop up. Keep her on gluten as all tests require it. If diagnosed, all first-degree relatives should be tested even if symtom free! Keep us posted and I wish her well!
  14. His TTG is .90 which is less than one and the range is less than 15 is negative. His IgA (is that the IgA deficiency test?) is a 240. What's the lab range? It sounds normal. But are you talking about a TTG IgA? If that's the case then it could be positive. Missing some valuable data here, Mom!
  15. Eating out is tricky. Most of us have been glutened through cross contamination at a restaurant. The "Find Me Gluten Free" is a great app BUT I only trust those reviews written by a celiac! Always talk to the head chef (or manager) and don't rely on wait staff. Jane Anderson of Very Well (formerly about.com) is a celiac who writes good articles about coping with celiac disease. She has many safe food lists (Halloween candy too!) This is a very hard disease to deal with when you are young. My daughter's in the marching band. One of the members has celiac disease. She ended up dropping band last year because of her health. I suspect she was glutened a few times. Anyway, the band director really didn't have a clue about celiac disease. I shared my knowledge. Even though this girl looked fine, she didn't always feel well. He contacted her and now she's back playing in the pit (learned a new instrument), which is less strenuous and if she gets sick, it won't impact the field show. She's happy and the director's happy.