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Found 3 results

  1. Looking to see what else other may have seen or experienced. My 5 yo daughter had issues with gluten since birth. I had been gluten free for 4 years before being pregnant with her. ( I was not diagnosed celiac, had gene test, positive, antibody test negative. later figured out I was IgA deficient, but already gluten-free diet by then) Anyway, I got glutened when exclusively breastfeeding her, she had diarrhea for days until it cleared my system. Diarrhea reoccurred when she had milk pumped from that time period. Fast forward to solid food introduction: she had diarrhea when she tried wheat foods around 12 mo old. I make everything at home gluten free, so she tried gluten at grandmas. Decided to skip wheat, since washing diarrhea diapers is no fun. She was probably glutened some times during toddlerhood, as toddlers put everything into their mouths. At three, we decided to try a gluten challenge, which in hindsight, really messed up potty training. She had alternating constipation for days, then followed by a couple days of diarrhea. After 10 weeks, her antibody tests were negative, her IgA ok, her gene test positive. I skipped endoscopy for $$ reasons, but returned to gluten-free and her BMs became normal consistency and regularity again. Since then, she had occasionally been glutened, usually an oops at daycare or gluteny playdoh. Last time we knew she was glutened was regular playdoh at preschool in Sept 2016, after which we bought her gluten-free doh and gluten-free toys for her to have in class. AND potty training issues greatly improved over this past year. BUT just three weeks ago, she got into a regular ice cream sandwich...and there were no diarrhea poops. So last week, I fed her one whole piece of gluteny bread....and no diarrhea. So I'm torn about what to do! Has she outgrown something? Is she 'silent' in her symptoms now? I know the Dr would say go back to gluten and retest if symptoms return. But mommy bear worries if silent symptoms would hurt her during years of growth? Or maybe I'm overthinking and she'll be just fine for the rest of her life?
  2. After 6 years of having many many medical issues (I am now 20), I finally got tested for Celiac and it came back a big fat NEGATIVE. In the past I have been scoped in upper and lower but all the doctors could find was gastritis causing my episodes of acid reflux. Years have passed..a topical ointment for this rash...a migraine medicine for that migraine headache....that sinus surgery...here's a steroid...I just don't understand why you need all these root canals...you have many swollen lymphnodes...the asthma...the dizzy spells....the weakness....I am only 20 and needing to take supplements for a Vitamin D deficiency when there was no reason for me to even have it in the first place! So after talking to my GI doctor, we decided it was IBS and nonceliac gluten intolerance (which he has yet to put on my chart but he said it was that if it wasn't celiac). It has been a week since that diagnosis and quite frankly, I just don't know how to feel. Like it's like one day you just walk in your doctors office, they give you a diagnosis, expect you to make this big change, and just send you on your way forever with no follow ups. So I feel quite lonely but okay. I am pretty sure another reason why i feel lonely is because my family just doesn't believe me. It is plain and simple like that. I tell them I can't eat something and they will say "well I worked hard to make it after working all day so just have a little bit" ... and then they wonder why I am in my bed all night long with the ice, heating pad, and meds that don't work. Ever since the diagnosis I was not taken seriously at all. The gluten free diet has made me feel FANTASTIC!!! But they don't see it. They think I "just need to chill out" when I explain that I will literally get heart palpitations if I were to eat gluten. They think my gluten driven rash (which my GI doc said is the gluten rash) is just some form of STD or something. The other night my chinese food was contaminated and I was so nauseous for 2 days and my mom just couldn't wrap her brain around that cross contamination bothers me and blamed it on "sleep deprivation". The list goes on people. After tonight I was just done with it all. I live with my parents because I am in nursing school and it is the most convenient. My mom made me dinner and swore it was gluten free. I ate it and felt off. I had worked a long day and was just like "well okay". My brother brought home breaded chicken wings which I was very attacked for not eating. Then around 20 min after my consumption of dinner, I broke out in my rash, got stomach cramps, diarrhea, nausea, a headache, acid reflux, etc. I told my mom I think her dinner had gluten in it and she was just walking around and huffing as if I had actually ruined her life by stating that. She even dug through the garbage ready to prove me wrong until she found the soup can...yes it did have gluten. And all she can say was "oh well sorry" and barely even spoke to me for the rest of the night regarding any of it. Didn't even turn to me to talk when i was speaking to her. Why does my family act this way and how can I deal with this? Why do they act so annoyed because my body is reacting to something? I explained to them millions of times what will happen if I ate it but they honestly don't care about it. They just don't. I dont have celiac but gluten obviously makes me react to it, even in very severe ways. So why should I have to eat gluten and suffer because of them? Why would they even be expecting such a thing? Non celiac gluten intolerance is real right? I just feel silly for doing something for me for once instead of taking care of their needs like I usually have to do. In the past I have gotten called hypochondriac by them to the point where I dont wanna even see the doctor for a sinus infection because I am afraid all doctors think the same of me. If anybody has any advice, I would greatly appreciate it!
  3. I was recently tested for food allergies & came back with an high intolerance to wheat, oat & casein. I also have high/positive ANA tests and my primary care physician believes that ingesting gluten can bring on the development of lupus and other auto-immune diseases. After learning this, I immediately changed my diet and began eating 100% gluten-free for the past 3 months. Fast forward to today, and I cheated and went crazy eating pizza. Now I'm experiencing complete lethargy, sleepiness and symptoms of a tight chest or like pain when I breathe in. I am wondering if anyone else has ever experienced similar feelings? I never had a symptoms of a gluten intolerance before I was tested for it, so I know my symptoms may not be as severe as those with Celiac. Is there anyone with just a gluten-intolerance or wheat allergy that had gone off their diet and experience symptoms? I appreciate any feedback as I am extremely new at this! Thanks!