Before I jump into the mailbag, a quick political PSA. I know our country seems to jump through hoops to make it as challenging as humanly possible to vote, but please vote. No matter what side of the fence you stand on, it’s our civic duty to vote. If we don’t vote, we get the results we deserve. This has been one scary-ass election. My hope is that the divisive rhetoric the past year (okay fine…the past 8 years) will start to subside after November 8th. My fear? It’s only just begun. God help us.
Ok…let’s do this.
I got diagnosed with celiac disease last year. I’m 23 years old and I still live at home with my parents, however i’m the only one in my family that has celiac disease. How do I get them to understand that this is a serious illness? I have tried explaining it to them, even showed them all the paper work I got from my dietitian but they still won’t get it, saying i’m overreacting when it comes to things like contamination. They have even tried to give me food that clearly had wheat in the label or products that say may contain. I’m very new to this and I feel like I have no support or anyone I can rely on. I just keep being called crazy and using my illness as an excuse. Please help I feel like i’m in a losing battle.
Two words: move out. Your family is being abusive…plain and simple. Your health and your life is at stake. Not sure what your situation is, but if you can find a way to live on your own, it’s your best bet. I have no words for people like your parents. Sorry for the tough love.
After a blood test, my Dr said I have Celiac disease, stop eating gluten, and dismissed me. The problem is I don’t have strong digestive symptoms when I eat gluten and my rash doesn’t break out every time I eat gluten. I’m having a really hard time because my family thinks it’s just not that serious, and think all of this diet and cross contamination is just so much bull. So, can you get a false positive? Do people often get false positives? Should I try to get further testing, or just suck it up and go completely gluten free and ignore my family?
More wonderful family support. If the doctor only gave you a blood test, that is not enough for an accurate celiac diagnosis. You must get an endoscopy as well. That is still the gold standard. Get that done and shove the results in your family’s face and tell them to get on board or get out of your life. Seriously.
I’m one year into my celiac but because I’ve been misdiagnosed for 13+ years I also have Hashimotos and RA. I’ve been looking into whole30 and autoimmune paleo to just help my body simmer down. I know you’ve done whole30, but wasn’t sure if you’ve ever done AIP? Thoughts on one VS the other?
I’m actually on AIP now. Feel great. I talked about it here. And yeah, I’ve done Whole30 twice. My take? They are both awesome. AIP is much more restrictive (no coffee, eggs, nightshades, etc.) so you may want to give Whole30 a try first. Or combine them and to the Whole30AIP.
Are you looking to BE HARDER and GO LONGER?
Aren’t we all?
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(Ok…that will do it for the spam section of this mailbag.)
A little background – I’ve been vegan for four years and was recently advised to try GF by my doctor who is trying to find the solution to my acne and stomach issues (my mom has celiac so they think i might have it – i’ve been tested before awhile ago and it was negative). Anyway, I really struggled at first – went through withdrawal and realized gluten is in f***ing everything. I’ve been GF for about 6 weeks (with some hiccups) and I haven’t seen much improvement. I’m starting to feel like it isn’t worth it, especially as a vegan (and i thought that was hard!) and as a 23 year old who just wants to be able to eat out/drink with her friends. When do I know if it’s right for me/ are my efforts completely squashed if I’m accidentally getting little bits of gluten in my diet?
Only you can answer that question. Not sure how long ago you were tested, but you may want to get tested again. If you have the gene, celiac can rear its ugly head at any time. And if you do have celiac…no hiccups anymore. Gluten free means gluten FREE.
Coors Peak is no longer going to be produced, and they are scrapping plans for a national expansion. No official notice, just some posts on their Facebook page to let folks know. The first big company to make a beer that was actually safe for celiacs, was actually affordable, and was actually tasty. Maybe we can lean on them as a community – let them know that they could be at least as ubiquitous as Redbridge?
They sent me some samples last year. I too was very excited about a major company making gluten-free beer for the masses that surpasses the crap that Budweiser puts out with Red Bridge. I have to be honest with you. I thought it was absolutely awful. Worse than Red Bridge even. I’ll stick with my Glutenberg.
Add me to the list of people who doctors treated like a nut simply because THEY couldn’t figure out I had celiac disease. At the age of 50, after years of telling doctors about my symptoms to no avail, gluten damage to my liver finally got a diagnosis that may be too late . I don’t drink, don’t have high cholesterol, but my liver is a mess due to years of gluten damage. What will it take for doctors to pay attention to this disease?
So sorry to hear. I swear…we’ll get there. Maybe not in my lifetime, but one day celiac will be one of the first things doctors look for. And here goes the cynic in me…especially if a pill comes out to treat celiac disease. Then you’ll see the diagnosis rate skyrocket. Lots more doctor horror stories here.
Hi from Australia. Love your work! Your blog has really helped me emotionally since my diagnosis. I read most of what you post and I know that you have had some issues with plagiarism. I’ve just clicked on an article that is word for word your post “What’s it Truly Like to Have Celiac Disease?” from June 04, 2012. It doesn’t reference you at all!! I just feel you should know.
Yeah…sadly there are a number of sites that simply steal content and post it verbatim as their own. There is a special place in hell for these people.
Silly question, maybe? I’m no stranger to avoiding foods and cross contamination due to my daughter’s severe fish and shellfish allergies, but my son has just recently been diagnosed with Celiac disease and my question to you is, are all food proteins created equally? Like do they all die the same agonizing death when bathed with the proper cleaning materials? For example: In order to give my daughter a peck on the lips after cosuming her allergen I must wash my face, brush my teeth and consume another meal. Her allergy is very severe and this was the protocol given by the allergist. Would this be the same with gluten? Can he be contaminated by a simple peck?
Not a silly question at all. Unless your son has a skin reaction as well to gluten (called DH), he can only have a reaction if he ingests gluten. So anything that can get into his mouth should be avoided. So if you’ve just eaten gluten, I’d avoid a peck on the lips for a bit. I’d play it just as safe as you do with your daughter.
I work for The Doctors TV Show and would love to possibly have you on the show. Can you please contact me at the information listed below.
Hmmm…that could be interesting.
First off, great site. Thank you for putting this out there, I truly appreciate the time spent. I am a 37 year old father of 3. My father has celiac and unfortunately he lived with it without knowing for probably 60 years or so. Pain all the time, the whole nine yards. I grew up with him not knowing it and not knowing what needs to happen to fix it. He was diagnosed over the last few years and has made diet changes, but nothing seems to help. I have always felt for him and everything that he has gone through.
Recently I had my children tested and 2/3 (the other one is only 1 year old) tested positive for celiac. My daughter is 7, my son is 5. My son is the only one to show signs of celiac because of a constant loose stool. My daughter showed no signs at all, yet tested positive. In support of my family and because I’m not a POS, we have all gone gluten free. This is much easier at home when you have no other option, but my concern is for my children as they grow older. I am looking for advice/guidance/support areas for the parent of a gluten free child and how I can help them live a normal life. Given that they showed minimal symptoms and that we will be gluten free at home, what are the adversary health effects of such a slip up? Is it short term or would these types of slip ups have long term effects?
Kudos to you for keeping a GF household. You see folks…there are good people out there. Please keep in mind, no symptoms does not mean no damage. Any gluten causes an autoimmune reaction, whether they feel it or not. And the more slip ups, the more lasting damage. As for helping them live a normal life, define normal. I’ve been gluten-free for 7+ years now. It’s normal to me. Act like it’s normal. Treat them like it’s normal. And it will be…normal.
When will you be testing products with the Nima Sensor? I can’t wait to see what you find out.
Yeah…sorry for the delay. I’ve been working crazy hours and have not had the time yet. Hopefully this week.
I cooked an Udi’s pasta meal for my dinner and mixed into it was a very long black hair! There is no one that lives here or has ever even been near my house with hair like that. I am blond and live only with dogs! Sooooo grossed out!!!!!!
Reason number 37 to not support Udi’s.
My husband has celiac (and I do not). We keep a 100% gluten free home to avoid any cross contamination (and because I think it’s only fair that you be able to eat in your own home without having to be fearful). I’m pregnant with our first child – and I’ve read conflicting information about when or how we should introduce gluten to our son. My obstetrician could only offer that it would be best if I breast fed for as long as possible and we should work closely with our pediatrician. Clearly, we don’t KNOW that he will have celiac, but we KNOW that he will be at increased risk. Anybody know more?
Not me. Anybody else out there help this kind soul?
I was feeling better by eating like you have been, no grains, no dairy, no soy, no refined sugar etc. etc. but I lost too much weight by eating just organic veges/fruits, nuts, seeds etc. and grassfed or wild proteins. I am underweight now, so what do I do about that? I can’t keep losing this weight.
I’ve lost 6 pounds the past 12 days being on the AIP diet. To me, it was mostly inflammation and needed to come off. But if you keep losing weight, just pack on the calories. Eat some meat. Perhaps a visit to a dietitian is in order.
I am 67 years old and I have been seriously diagnosed with celiac disease for more than 5 years and even back then both docs that did the 4 biopsies said “This is the worst case of celiac I’ve ever seen”. OK so you deal with it – read the books but there is still nothing about the ravaging emotional pressure my celiac exerts. I frequently have felt sad for no reason but as my food reactions keep getting worse the more I wonder whether “is this worth it”? So, I stop eating completely and I get cancer, my stomach perforates, my femerol artery closes down, I cannot walk because my legs fold right under me for no reason. The doctors are frustrated, I can’t even find a hospital with a Celiac Menu (I’m in Baltimore, Maryland). After all these years today was the first day I tried to actually plan my suicide. But, as if actual MAGIC I found your site. You have saved my life. I’m serious. You have given me hope there might be a reason to go on. I know I need help but feel like I’ve tried everything — shrinks, 4 or 5 GI’s. My son has even said if there was a place to go to stay that might help but nothing found so far. I know you may not be able to answer this note but know for sure YOU HAVE SAVED MY LIFE TODAY. Thank you for giving me another day and maybe more days of hope.
So glad I can help. Always here for you.
Hope is a good thing. Right Andy?