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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About worriedseattlemom

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  1. I Want To Cry.

    Oh no! Virtual hugs to you. I know this ordeal has you embarrassed, but I'd love to make a small donation to put toward some meat/veggies/fruit or other gluten free food for you. Do you have a paypal account or other way I could contribute?
  2. Hi there,   How are things going now that it's December? I have a nine-year-old daughter going through something similar, though her main complaint is nausea. She also has a slightly hard and distended tummy at night, chest pain and constipation. Also on Miralax daily. We are going to a new GI doc next week. I'm at my wit's end. We're also going to a naturopath and Chinese practitioner out of desperation. I just wanted to see how she was doing and say *Hugs*. It's so hard as moms watching our sweet kids going through this.
  3. Thanks everyone! Yes, she had a respiratory virus that turned into a sinus infection. She does have anxiety for sure, and third grade hasn't been a good year for her due to a bully and a not-great teacher, and I do believe this contributes to her nausea, but isn't the only cause. Not sure about a bowel obstruction. She does get constipated, which we treat with prunes and Miralax. She has a follow up with our pediatric GI doc in two weeks, so hopefully that will help.   I am really careful with cross-contam, but my son is life-threateningly allergic to many foods (nuts, eggs, dairy) and wheat is one thing he can reliably eat, so I really don't want to take it away from him if possible. We use a toaster oven and I make sure my daughter's items are always placed on a clean piece of foil.   Dairy does make her nausea worse, so we have cut it out for the past six months. I'm really looking forward to our doctor's appointment to hopefully help. I can't believe this is still dragging on.   Angie
  4. Hi there,   I haven't been on in a while. Back in November my 9-year-old daughter was diagnosed with celiac. We cut out all gluten, though it took another month or so to cut out everything as she was still eating a few things with gluten that I didn't realize. I am confident that she is gluten free now (though I worry about vinegar, caramel color, etc., so don't let her eat those often). Things seemed to be improving some after we started seeing a naturopath in about March. She prescribed a bunch of supplements including glutamine, pancreatin ox bile enzyme, high dose probiotics, Cortine, fish oil, and Vit. D drops.   Then, about a month ago my daughter got a sinus infection and took a 10 day course of augmentin. She is much more nauseated again now (her main symptom since the tummy aches have gone away). We doubled up on the probiotics but, two weeks after finishing the augmentin, she's still no better. Her nausea seems to be worse at night as she goes to bed. This is not a stall tactic. I can definitely see that she's queasy.   Anyone have insight for me? I feel so sorry for her and don't know what else to do.   Thanks for any feedback you can give.
  5. Does Any One Feel Nausea?

    Thank you so much for your follow up post. It gives me hope. My daughter is about 5 weeks gluten-free and still nauseated much of the time.
  6. Just Diagnosed

    I don't have a whole lot of advice since we are new to this as well, but I just wanted to say hi! I'm not going with a full gluten-free kitchen at this time because my son is allergic to dairy, eggs, peanuts, and tree nuts, and wheat is something he can reliably have. I just can't pull that from him now. That said, I've been really careful about x-contamination as I've dealt with it for a decade with my son, but my daughter is a month into her gluten-free diet and is still queasy off and on. Her pain seems to be gone, but she does have the nausea. I'm not sure if that's her gut still healing or because there's still some gluten getting in somehow.   Sorry you're having to deal with this as well. It's a huge adjustment and is hard when they're a little older and used to eating what they want.
  7. That's what I wasn't sure of, but I just found out that anything over .05 is positive, so....yah....she's tested very high.
  8. What Does Low Iga Mean?

    My daughter has low IgA as well, so her celiac test was inconclusive. She has tested positive with more sensitive blood tests however. I don't know what these tests are, but there are supposedly more accurate than ELISA, which is what most labs/doctors use. Good luck! I hope you're able to figure this out soon!
  9. That is so great to hear, Gemini. Thank you for sharing that.   We've decided against the scope for now. I scheduled it today, then they called back to say she would need to gluten load for two weeks and then be scoped. I just can't take that step backward with her right now. We're on the right path I feel and I don't want her to feel terrible for however much longer just so we can get a totally bulletproof diagnosis.   I did get her test results from the study she has been in. Maybe someone can help me decipher? I can't figure out what they mean, though the study director said they are a high titer.   5/16/2012 Iga Transglutaminase 0.352 12/1/2012  "            "                   0.120 5/4/2013    "            "                   0.226 10/11/2013 "            "                  0.433   Anyone?
  10. Thanks once again for your amazing support! I'm not sure what the test is that they use in her T1 study. I can ask for more info on that, though. I would love to be able to provide that information. The GI doc here in Seattle did say that all of the kids who come out of this study, if they test positive for celiac in the study, they are ALWAYS positive. In her experience.   I do plan on keeping Claire off gluten forever, now. I never want her to have to go through feeling this way again. It breaks my heart that she is constantly queasy, but is still having to function. Her energy level and appetite are good, so I believe it's a low level nausea, but still unpleasant for her.   I think you're all convincing me to do this scope....
  11. Update: Hi all! Not that you were waiting breathlessly for my update, but here's what we've learned: Claire tested negative for her TTG, but her GI doc said that's only because she's IgA deficient. If she weren't IgA deficient, the doctor believes her TTG would be positive (like I mentioned before, Claire has tested positive numerous times on a more sensitive test that a T1 diabetes study she's in uses (she has the gene for Type 1, but not diabetes at this point). Her D-eamidated gliadin test came back high at a 27, which her doctor said is a marker for celiac.   She also tested positive for Hashimoto's Thyroiditis, both on a blood test and with an ultrasound. We are now trying to figure out if we should have her scoped. Seems pretty clear that she has celiac and I hate to do any unnecessary testing, but it would be nice to see how much damage she has down there. She hasn't been complaining about stomach pain as much lately, but is queasy most days. She's been "gluten free" for about 3 weeks, but that doesn't take into account any mistakes I have been making. My awareness gets better each day, but I do worry about cross-continamination issues. I'm very careful, but who knows if she's still getting microscopic amounts.   Anyone have advice on the scoping? It's so hard to make your kid go under general anesthesia, but also hard to watch them sick without knowing exactly what's going on in their gut.   Thanks! Angie
  12. I'm really new to this, too, with my 8-year-old daughter, but I just wanted to reach out. This is SO tough, seeing your child feel badly and not improving quickly. We're dealing with celiac and thyroiditis. Feel free to inbox me if you ever just want to kvetch. I know I'm feeling very overwhelmed. Hugs!
  13. Hi everyone,   I have an update! We got in to the pediatric GI doc at Seattle's Swedish hospital a day early. Didn't love the GI doc we went to bedside manner-wise, but she seemed to really know her stuff. She said about ten times that Claire seems like a "classic celiac" case. She read her report from her '09 scope and was shocked that the GI doc at Children's Hospital declared her negative, since there was at least one patch out of seven that was a low positive. I wish we would have known this so her symptoms hadn't gotten to the point where she's so miserable. Anyway, she had blood drawn for the TTG (I hope I have that right) and thyroid and we got a referral to an endocrinologist. I just can't believe my vibrant, amazing girl has all these health problems. But I guess it could be worse! My ten-year-old son has always had food allergies so it's all he knows, but this is all new to Claire. I actually started to panic tonight thinking that she's never tasted angel food cake before and now she never will.   My husband and I are feeling shaken up and pretty sad today. Can use all the positive vibes I can get...
  14. I'm humbled that you all took the time to read my post and respond. Thank you! It means so much!   Claire hasn't had her thyroid blood work done yet. That should happen one week from today when she has her other blood work for celiac. I honestly noticed the goiter (it's relatively small and my husband can't even see it), a month or two ago, Googled and it and it didn't seem to be too scary and seemed somewhat common in kids, so I didn't fret too much, and just figured I'd mention it to her doctor at her well-child visit, which was one week ago and was the appt. at which her ped. confirmed the presence of the goiter and referred us to a GI doc.   Our house is definitely not gluten free. I would consider it as I don't eat gluten either (tested neg to celiac but am somewhat intestinally sensitive), but my son has severe food allergies to dairy, egg, peanuts and tree nuts, and wheat is one thing he can reliably have. Of course my main concern is for my son and daughter, but at times I just don't know how I'm going to manage all these dueling food issues in our house. I had myself a good cry a couple nights ago, but that's done and I just have to move on and plan. I have been trying to be careful about not letting her food touch crumbs from our toaster oven, etc. I may one day get a toaster/breadmaker just for her, but I'm kind of overwhelmed right now and am taking baby steps. Maybe the whole family goes gluten-free for a few months so we know for sure. I also did check on the vitamins. No gluten is used, but they can't guarantee they are gluten-free because of sourced ingredients. I will search for a better iron alternative.   I was also reading, I think on this site, last night about lactose intolerance possibly happening to celiac patients while the gut is damaged, so I've cut out all dairy for her starting today, hoping that makes her feel better.   I gave her a Zantac and Zofran this morning, but she still said she felt bad and was queasy. She is also having a tough time at school with a not-great teacher and some anxiety/grumpiness about class and food.   Anyway, thanks once again for all the info and for reading my super long post. Once we get her blood work results next week I'll update. This website has been a big help already (and I just found it last night). At least there is support and community here for us. Happy Friday, everyone!