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cyclinglady

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About cyclinglady

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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. 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.
  2. 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
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. KarenG is wise, wise, wise!
  9. 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
  10. 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!
  11. 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!
  12. 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.
  13. I think that three months is too soon to re-test. There's not much information out in the web on a slightly elevated TTG. I can sympathize as I was only positive on the Glidadin (DPG) IgA and negative on all the rest, but my biopsies revealed moderate to severe damage. But that DPG test was definitely positive (unlike your son's results of equv.). I was lucky (like your son) to at least get the full celiac panel. Was he tested for lactose intolerance? Perhaps, eliminating dairy for a few weeks that might solve his problems.
  14. Here's the deal....I would be worried a bit about this ingredient: tocopheyl acetate. Here's more information from a very reputable site: http://www.glutenfreedietitian.com/vitamin-e-from-wheat-germ-oil/ When I am in the grocery store or Target, I don't have time to look up everything. Ever try to read a shampoo bottle? Heck, understand the ingredients and be able to read the tiny print? I try to stick to simple ingredients. So, I do buy Purell, but not the fancy ones and usually the cheaper no name brands (university tuition is looming ahead). My bottle states: Ethyl Alcohol, water, glycerin, proplene glycol, caromer. No gluten. Nothing even close to disputing. But it doesn't really matter to me personally, because I always wash my hands before eating, so I should never be glutened by a santizier. Besides others here have lived to tell their tales about Purell and I trust other celiacs. Give yourself some time to take all this in. Changing hand lotions, lipsticks, cutting boards, toasters, can all be overwhelming (the list goes on).
  15. Everyone responds differently (days, weeks months, years), but the consensus here seems to be that the longer you are away from gluten, symptoms tend to get worse when you get an accidental exposure. Your daughter is young, so she should recover faster than an adult, but there's a steep learning curve to the gluten-free diet and that usually delays healing. I am sorry that she has celiac disease. My niece (19 years old) was just diagnosed with Crohn's. I thought and hoped it would be celiac disease, but it was not. AI disorders are a life changer, that's for sure. This is a lot for you as a Mom. Learn all that you can. Stick to simple ingredients, and then you won't worry so much. It sounds like the wipes are your best bet (or just a wet papertowel in a ziploc sandwich bag). I tried to get my kid to use santitizer, but it didn't matter as she got a cold the second week of school. She really can't afford to get sick with six academic classes. But that's life! Be sure that you and her father get tested -- siblings too. This is one AI disorder that is proven to be genetic and no symptoms are required!