tater218
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I had the biopsy during an exploratory upper endo and they told me it was possibly celiac and wanted me to do a gluten challenge by eating 4 slices of 12 grain bread a day for 30 days and repeat the biopsy. I haven't even had my blood work yet (thats tomorrow) My GI dr told me he's pretty sure that it is celiac disease but to be sure he wants to do the challenge. After he told me this, and they were not looking for Celiac, they were expecting to find ulcers and stuff in there. I started reading up and I'm just like WOW, answers to so much that I thought was jus tme being unhealthy or whatever, its all symptoms of celiac! Brain fog, headaches, bloating/gas, constipation but severe diarrhea at times, my hair falls out (has for years), nausea and this is just some of the stuff I have been dealing with for years! I started cutting back glutenous foods right away and saw mild improvement, and everytime I ate something with gluten I felt like crap on a stick again. My dh and I discused it and there is no medical treatment for it other than diet, I can change my own diet, I'm going to do the panel test tomorrow, but I will not do a gluten challenge. I can't justify putting myself in so much pain, and sickness just to get a diagnosis that they basically already know. I do know that I have the gene for it, that was found on earlier labs, my ALT is high, I'm Vit D and Vit B12 deficent, and those are the things they checked. I am a firm believer in the theory if it makes you feel bad, don't do it. Negative tests or not, if eating a hamburger doesn't go over well, don't eat them. I have read so many stories about false negs, misdiagnoses, etc.. do what makes you feel best. Good Luck!
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I know that before I was diagnosed with celiac, I thought about doing gluten-free for my autistic son, but couldn't bring myself to change so much for something that there was no guarantee would help. Now i have no choice, and its not as hard as I thought, but I think for someone to do this diet just for it being all the "rage", seems like so much work lol. My whole life has been altered, everything has been shifted to another planet and I'm learning how to do things all over again. I probally would have got the gluten-free stuff from the cabinet next to the regular stuff and been proud that I found gluten-free muffins, only to have an unexplained tummy ache and nausea for days after. I do agree that I hope foods become more readily available and cheaper. I have 5 kids, so its cook gluten-free for all or cook 2 meals, I'd rather only have to cook once. We live on chicken, rice and veggies lol
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on the go ... larabars, nuts, homemade trail mix with nuts, raisins, m&m's so you don't get any wheat or oats, apples or other fruit. i always take an insulated lunch bag (target has cute ones!). i fill it with a small container of natural peanut butter for caramel rice cakes, carrot sticks, sargento's low fat cheese sticks, the above mentioned. just depends on where i'm heading.
I bought some of the Larabars.. <gag> lol... Is there a flavor thats better than peanut butter?? Are reese cups ok? I read the ingredients and they look ok but I wanted to double check. And I read somewhere that caramel coloring was bad? Is this true? Baked Lays appear gluten-free. I think my big shocker is so much looks safe I find myself thinking it can't possibly really be ok lol
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I have actually tried several times to get my autistic son on a gluten-free diet but he rebels He refuses to eat anything except Pizza and Pop Tarts. And when I buck up and say NO, he will throw tantrums and fight me tooth and nail, its so incredibly hard! I'm going to be the guinea pig finding what gluten-free foods taste good, get it down for myself and then slowly throw the whole family into it. I just wish gluten-free stuff wasn't so expensive! We've been having lots of chicken, rice and veggies lately lol
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Hey everyone! I was diagnosed with Celiac a few weeks ago based on a small intestine biopsy, but still have to have my bloodwork (thats tomorrow) I was told to eat 'normal' until then, but I just can't keep eating whats making me so sick! So this past week I said no more, I'm doing everything in my power to avoid all gluten!! Though I imagine I've eaten it by accident several times not realizing because I still get violent stomach pains, nausea etc. All my life I've had what my dr calls "gut problems" and its been shrugged off as IBS, I have more problems with constipation than diarrhea, but now that I sit back and reflect on the past so much fits together. Its like I'm able to put these pieces together and have an answer that actually makes sense! So here's my questions
Do you really have to watch what shampoo etc you use? I noticed mine has Hydrogenated wheat in it, and I've alwyas been a 'shedder' my whole life. The hubs says I'm being crazy
Cross Contamination- If you aren't a severe celiac, do you still have to worry as much about it? My dr said I have latent celiac disease which isn't as bad as most but he said would get bad if I don't change things now
Lactose- about 2 weeks into my sudden onset of celiac symptoms I developed a lactose intolerence as well, I read this can get better once you get healed, is this true? God knows if I can't have a brownie I NEED some ice cream lol
Am I really going to feel BETTER??? I have no energy, migraines all the time, 24/7 upset stomach, bloating/gas, irratibility, acne (and I'm 30 which is no fun!) I've just thought I was doomed to feel like crap my whole life and had no idea why.
How do you manage with a gluten lovin family? I have 5 kids, 1 with autism and 1 with aspergers (diet change may help them) I also have 1 with ADHD and Bipolar, he's 9 and very small for his age, has had GI issues his whole life, I think he needs tested as well for celiac disease. But my hubs says sure he'll change as much as possible but he aint givin up Cheeseburgers and pizza... its kinda heartbreaking because I could use a good cheeseburger these days!! I could eat a bunless one though
How do you manage when you are constantly on the go? with 5 kids I am always on the run, dr appts, school events, etc what fast food places are best to find quick eats on the run? And is Starbucks (latte's) safe??? God I need my coffee lol!!
I'm sure I have tons more questions but these are on my mind. I've read so much on this forum and its been very helpful. I am a member of a few other medical forums that have helped me over the years and now I can help others with my experiences. I can't wait to get to that point with Celiac, for now I am grateful for all you guys can share!
This Is All So Totally New To Me..
in Coping with Celiac Disease
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Thank you so much Shauna for the very detailed reply!