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      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 FREE Celiac.com 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 Celiac.com Store.

Mermaid's Mom

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  1. Initially I bought the cast iron pans but research says that once they get "seasoned" they are sealed and the iron doesn't leech into the food the same way.
  2. About 6 months ago we learned that my daughter is Iron deficient. She has eating issues and is not inclined to eat iron rich foods. We used a liquid iron supplement which tasted AWFUL and she struggled to drink some days. FINALLY we found the lucky iron fish! It is a cast iron fish and you can cook with and increase your iron more naturally. The recommended way to use it (which is the way that we use it) is to boil 1L of water with 3 drops of lemon for 10 minutes. Let the water cool and then drink throughout the day. This water provides a person with 70% (I think?) of their daily iron requirements. http://www.luckyironfish.com/our-story
  3. So 3+ weeks gluten-free. She is on B12 weekly injections, iron and magnesium supplements. She has ALWAYS run hot. Never - literally never cold. I noticed that she is now sleeping in socks and a hoodie. Every night. Now during the day she has more than a few times said she is freezing. Now I have ALWAYS been a freezing person. The only one -everyone else in the family runs hot but me. I am abnormally cold. But even I am not cold when she says she is?? Any thoughts?
  4. Thanks everyone. I continued to read up on it after I posted and determined that I truly do think she is low on S.A. Ironically I chose the Citrate FOR the purpose of aiding her with constipation but I really like the idea of alternating it with a different version. Will definitely look into the one you mentioned. I also think I will give smaller amounts throughout the day. The first dose was 2 tsp diluted in a beverage and the next day I dropped it down to 1tsp. Now I think I will keep it at 1tsp but break it down into 2 smaller servings and give one in the morning and one in the early evening. In terms of low stomach acid - is this one of those things that just needs to slowly sort itself out as the gut heals and I replace all the deficient minerals etc? Or do you help things along with a digestive enzyme or other techniques? Any ideas and product names appreciated! Thanks!!
  5. So I have started my daughter on a magnesium citrate supplement. I also took a does the first night so I have an idea of its effects. (background info: about a month ago she started asking for tums about once a week close to bedtime for acid reflux) So the first night I noticed that it really bothered my stomach in the sense that it felt like I had a lot of stomach acid as a result. I had no heartburn etc. but a definite feeling of "burning" in my stomach. We both took it right before bed. The next day she reported the same feeling - that it "upset" her stomach. I cut the dose in half and also gave it to her earlier in the evening. But tonight she reported "heartburn" after drinking it. Is this an indicator of low stomach acid? I realize that she should NOT be taking a Tums if that is the case but I can't tease out from what I am reading if this heartburn is an indicator of LOW stomach acid or LOTS of stomach acid. Any thoughts?
  6. YAY for chocolate! I would be crushed to lose chocolate!! I am only here for my daughter and we are too new to the game to add anything yet but I am worried that once we get her sorted I will be too nervous to re-introduce any previous foods!
  7. I am certainly not as educated as many on here regarding these issues but I am slowly learning... Having said that...from what understand Magnesium levels are hard to ascertain because it is stored in the bones. But a deficiency can cause fatigue. Also a lot of these issues cause insomnia and poor quality of sleep. Would you say that you sleep well? Meaning fall asleep easily and wake rested? If not you may not be getting good quality sleep?
  8. THANK YOU! For taking the time to give me your thoughts! I appreciate them all! Ironically we just took her off dairy this weekend as I felt she was reacting to it. I think when she dropped Gluten she inadvertently increased her dairy consumption (or maybe it just seemed that way?) When she was "glutened" the one time it flattened her for 3 days. Then I noticed that after a heavy dairy meal (baked potato with butter sour cream and cheese) that she would experience a much milder version of symptoms (so tired but not EXHAUSTED, no brain fog but distracted etc.) so we pulled dairy also. When I was nursing her as a baby (her first 6 weeks) I wondered if she had a dairy aversion because she was upset after nursing and it coincided with me eating dairy prior to nursing. It seemed to resolve itself and I never wondered again but it does make me wonder if dairy is a permanent issue? I have found some amazing dairy replacements and she is still onboard so crossing fingers she stays motivated. The GREAT news is that she has ZERO brain fog since going gluten-free!! It is bizarre and remarkable and amazing all at once. My husband even sees it and he is always so inclined to be skeptical! As a family we are ALL adjusting how we eat. I am now 100% gluten-free along with her and my husband and son will now only eat Gluten outside the home. We have thrown away all Gluten contaminated items and bought all new cutting boards, toaster etc. I still do have some pans but cooked them to death and will not cook her food in them for MONTHS! Interestingly enough I have suspected that I am gluten sensitive for a while now and decided to just try the elimination diet also. Stomach pains after eating were normal for me and it also interfered with going to restaurants or over to peoples homes for dinner. Lots of digestion issues over the past few year. So I went gluten-free and from day one never had another stomach pain. I wasn't being as diligent as my daughter...If the chocolate almonds say "may contain wheat" I still ate them. Anyway on Fri night I went to a St Patricks day party and ate only the gluten-free stuff. Some one raved about the mini meat pies and I took a few bites and then realized it was GLUTEN! To be honest I wasn't really concerned and even though I threw it out I never thought about it again. Sat at noon the pains began and I was in and out of the bathroom for 24 hours. I was REALLY surprised. I know it may be a coincidence but I doubt it. All this to say that - I don't really care what the LABEL is I only want to know how to manage it for her! So far I think we are on the right track!
  9. Thank you Posterboy! There is lots to process but I want to thank you for taking the time to share all that information! Much appreciated!
  10. Thank you. I appreciate your perspective. Based on what I understand about the tests false negatives and the knowledge that we can't proceed with an endoscopy at this time I am going to proceed as if she is Celiac. Our Dr has been with us since the beginning. Knows all her issues and limitations and truly feels an elimination diet is our best diagnostic tool right now. When my daughter is an adult she can choose if she wants to eat Gluten and do all the proper testing herself. I really hope this decision doesn't make me a pariah on this board but I understand when others are passionate about something. I really do appreciate everyone sharing their knowledge with me and I hope they continue to do so. And thank you for your well wishes for my daughter I can hear the sincerity in your words.
  11. Thanks for those suggestions! I will look for those brands. We are already "homemade" fry snobs! LOL! I mostly cook everything from scratch - my kids turn up their noses at store bought cookies, cakes etc. We actually had a cousin here and that mom gave money for me to treat the kids to Wendy's (her sons fave spot) and I mistakenly thought I could be smart about letting her eat there also but realize now that is not possible. So does she now! LOL And skipping take out will not be a hardship for her. Rice is tricky for her because her mouth doesn't like all the pieces. That it can go all over. I am going to implement some of our therapy tricks to eventually make rice more mouth friendly but for now it gets a big thumbs down. So much to learn still! Thanks for your help!
  12. Our Dr is very supportive. In fact she said I will be recommending you go down this path for your daughter even if the results come back negative. So let's just do it anyway! There is more than Celiac going on. We are aware of that. I apologize if I don't give you the entire medical history but I assure you she has been seeing a Psychologist off and on as needed since 6 years old and has been seeing an OT weekly for two years. I don't want to come across as across as flippant to your advice and suggestions but I need to assure you that she is in good hands. I am not self- diagnosing her. I am not taking everything at face value. It is an onion we have spent the past 3 years peeling away the layers. We have a LOT of answers - I personally know what is mostly going medically in regards to her issues. But the chronic fatigue, brain fog and digestive issues cannot be explained by all that we have already uncovered. I assure you I am not "green" in this area - gluten free is a new arena but I have dissected a human brain before and am well educated. I assure you she is not falling through the cracks nor are we being flippant about her issues. I am genuinely not sure why this blood work is your hill to die on?
  13. GFinDC - THANK YOU! I am not trying to be disagreeable. I am not trying to ruffle feathers or come across as "knowing better". I am just trying to do the best for my baby. She does have Sensory Processing disorder. She is orally defensive. Unless you have lived in those shoes you have no idea of what the limitations are. She can barely tolerate the dentist after one bad experience. If I outlined to you the process (and months) it took of getting to the point that she trusted the dentist to clean her teeth you would not suggest the endoscopy. She could be 6 months of needing to eat gluten as we baby stepped our way to success. Oh and she has been b12 and iron deficient for months and we go weekly for injections! Thanks! She is also now on a probiotic and omega 3 but a good magnesium is my next purchase. Going to look for one today! Oh And I use "you" in the general sense not directed at YOU
  14. I appreciate the importance of testing. I respect the fact that you all value that science. I am normally a person who values the same thing. Here is what you don't know : Something is poisoning my daughter. It has slowly been stealing her from me. It has now reached a critical point where we have been to a Neurologist to test for Cerebral Palsy etc. But it is none of those things. Neurologically speaking she has nothing "wrong". But some days she has no idea of what day of the week it is. Even though she asks all day. Some days she can't get to school from the fatigue. Some days she can't understand a simple question like "do you want roasted potatoes or mashed?" Literally needs that broken down for her. When she is not in the fog she is whip-smart. Will discuss how odd it is that the Mona Lisa is an Italian painting but in a French museum - who knew? Over the summer she and I went to 43 medical appointments. No one suggested celiac or gluten intolerance. I always felt that she was gluten intolerant (but that it only played a minor role in her issues). After ALL the tests came back this Summer I was defeated. I realized that we had to just accept that this is how it is. By that point her issues were so bad that she was legally given the status of disabled. She is considered having an invisible disability. She gets money every month from the government. School has modified her education so that she can keep up. Fine. I accept it. Except a few months later...I don't accept it. I see that she goes in and out of this confusion. That she is being pulled in and out of this state but SOMETHING. And I want to find out what happens before we lose her. I decide to go down the Gluten free path again and almost fall over when I read the symptoms of celiac. Then Gluten Ataxia. I swear she is being poisoned by Gluten. I would have tested her that day (bloodwork) but to the advice of my trusted physician who said "90% come back neg and even if it does I am going to give you the same medical advice as if it came back positive". I am not putting my daughter through an endoscopy (that is a whole nother bag of issues that I am not getting into) and I cannot stomach the thought of feeding her Gluten for 12 more weeks when I see the damage it is doing. After 14 days gluten-free I seriously doubt my daughter would agree to it either. She is at the point now that she is reading the labels of her toothpaste. If my refusal to "test" my daughter is an issue that will forever cloud any questions that I ask on here please let me know now as I will go somewhere else with my questions.
  15. My daughter is currently on the elimination diet. I REALLY want to tease out if she is gluten intolerant or celiac because I don't WANT to throw out all the cutting boards and toaster and knives if she isn't celiac...but I also don't want to keep USING them if she is just gluten intolerant. She is 2 weeks gluten-free and 7 days in knowingly ate a small amt of gluten and it flattened her for 2 full days. The third day was also rough and then boom she was AMAZING again. Alert engaged etc. The difference was drastic even though we hadn't seen a sign improvement in those 7 days. That little bit of gluten was severe. And it gave us an idea of what to look for in her. Today we went to Wendy's and I prechecked on the website that the items she wanted were gluten-free. A baked Potato, frosty and a piece of grilled chicken. They all were but the chicken is often cut on the same cutting board as breaded items so it had a warning. We went in and the manager was AMAZING and handled the item herself. I was so focused on the chicken that when my daughter changed her order to fries at the last second I didn't bat an eye. Tonight she crashed like she had been "glutened". Just like the time last week. I wondered if the chicken had somehow been contaminated and my son said "Maybe it is the fries". I almost died!! The fries!!! I never looked! So I went on line and looked and sure enough they are NOT gluten free!! I felt awful! Given that - do you think it is likely that she is celiac and I should hold a yard sale for all my contaminated stuff??