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?
Our software is an automated proofreader and your personal grammar coach.
I no need grammar help. Me grammar is good.
(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?
18 thoughts on “Let’s Talk Celiac. It’s Mailbag Time!”
Hey about the concerned pregnant lady with celiac husband. Make sure you are completely gluten free so your breast milk is. Breastfeed as long as possible. Incorporate collagen and gelatin (bonebroth, etc) to seal your babies gut from the get-go. Introduction of foods- delay gluten, even GF oats (20% of celiacs react to GF oats- cross-reactivity). First gluten- make it sprouted, or sourdough that has the enzymes present for digestion. ~LoveStockTallow Mama
Also get the genetic test ASAP so you know your babies predisposition. Maybe no DQ2 or 8 present and there is way less risk. My kids were no so lucky in that department
There have been a lot of studies in recent years about children and celiac disease, especially in terms of heritability, introduction of gluten, amount of gluten, and genetics. My son is a subject in an ongoing study which is primarily for diabetes but has been uncovering a lot about celiac as well. It’s how he was first diagnosed.
I would recommend going to pubmed online and poking around. Look for the TEDDY study and celiac, and look around a bit more as well. There’s not a lot that’s solidly known, and you’ll only find about 5-12 good studies, so it shouldn’t take too long. From what I’ve read: there’s no need to restrict gluten or delay gluten introduction, and the amount of gluten doesn’t matter. There is a lot of promise for the genetic testing: children with a certain genetic profile have something like a 25% chance of developing celiac autoimmunity (that is, a positive blood test, independent of an endoscopy) by the age of five, and even higher by the age of twelve. I personally have made the decision to feed my daughter a gluten-free diet if her blood tests come back with that genetic profile, because to my mind, it seems like in that case, celiac is only a matter of time. Otherwise, we’ll probably just have her blood screened for ttg yearly.
My experience regarding small children and introduction of gluten, as well as having school-aged children with Celiac.
Breastfeed as long as you can, and as long as the decision makes sense for your family. My 7 year old nursed for over 20 months. By the time I weaned him, he was down to just bedtime feedings. My 2 year old was only nursed for 4 months, as I had surgery and was on narcotics for an extended amount of time.
Eat a good diet, especially while breastfeeding. It will nourish your body, help you heal after childbirth, and nourish your child. It’s always a good idea to feed yourself well , but especially after birth, whide breastfeeding, and when you have digestive issues. ( I fail at this sometimes, but I try out get back on track as soon as I can.)
Find out if your child has a genetic risk for Celiac. You may get lucky and your children may not have the gene. All three of my boys have one copy, plus one copy labeled as disposing them to NCGS.
Remember that little children like to put their fingers in their mouths. They also like to put their slobbery fingers into others’ mouths. This has lead to my mom being very ill after my middle son, who had been fed cookies by my well-meaning grandparents, stuck his fingers into his mouth and then immediately into her mouth. This may need to be considered before deciding to introduce gluten.
As for my kids, when the oldest was diagnosed he went completely GF. Shortly thereafter, our entire house became GF. My youngest was still an infant, so he has never had much gluten. My middle child was a young toddler, and he has been GF almost his entire life. We found out with him that barley containing baby cereal upset his stomach, so we cut out all gluten until he gets older ( except for the episode mentioned above. That box of cookies lingering in the pantry was immediately thrown away.)
My younger two will continue being GF until they start school. Then they will be exposed via school cafeteria food, so we can keep our house completely GF for the health of the three Celiacs we have currently. (My mom, my oldest son, and myself.) If the younger two begin to show any symptoms, I’ll have them referred to my older son’s pediatric GI and we’ll begin testing.
As for my older son’s food at the school, I send all his food. Breakfast, lunch, and snack. Our school is not properly trained in making sure his food is 100% GF, so I don’t risk it. I know by law I could force them to accommodate him, but I feel safer this way. It’s a personal choice, and if we had other students in the school that had to eat GF food, I might consider letting him eat cafeteria food. This way I KNOW his food isn’t cross-contaminated. I do send a letter to the other parents of his classmates at the beginning of the year, as well as a very detailed list to his teacher of foods he can and can’t have. I include things like modeling clay, pasta for art projects, etc. on this list, with an offer to provide safe alternatives if needed. We have a 504 in place. I make sure I’m involved with planning any food events for the class ( pizza parties, Halloween treat bags, Christmas party food, etc.). His teacher lets me know if anyone is bringing cupcakes for a birthday, so I can send him a safe one. It takes a lot to get used to all this, but for us it’s worth it.
To the first questioner, I’d say if you can’t afford to move out, set up an alternative “kitchen” in your room. Get a dorm fridge and microwave and cook your own foods.
It does get better. It does feel normal to me now, 7 years in and I do not feel deprived of anything. As a benefit, I have now become a much better cook. 🙂
As diseases go, this one’s not so bad because there’s a CURE that is available to us all. Just don’t eat it. I know it’s not easy all the time, but it’s not some 10,000 dollar drug that has to be infused, it’s not radiation treatments, it’s not a death sentence.
Oh my goodness … go on The Doctors, give them the straight stuff on celiac! I swear that stupid show plays in every waiting room I’m ever in … such a lowest common denominator show, but perhaps you could bring it up a bit.
Or bring it down… 😉
Yes, go on The Doctors….. that would be awesome!!! Do it!! Do it!! Do it!!
To the Baltimore, MD letter writer, there are 100% GF locations in Baltimore. Check out One Dish Cuisine in Ellicott City, Points South Latin Kitchen and Sweet 27.
My apologies, I misread the letter context. In regards to celiac safe hospital meals, I would suggest contacting the staff at One Dish Cuisine in Ellicott City, as their website notes that they supply meals for local hospitals. They are super friendly and helpful (
“It was a tough decision, but the success of the café meant she could no longer supply meals to grocery stores or restaurants, but ODC still supplies meals for local hospitals.”
Maybe the best of things! And no good thing ever dies 😉
I’m the Celiac in the family and was only able to breastfeed for five months before my supply completely dried up. I’m a big supporter of breastfeeding but also not convinced it is the magic protective bullet. My sister and I were both exclusively breastfed for a year and i still ended up with Celiac and her with Crohns. I read a lot of conflicting information about when to introduce gluten and we ended up doing it around 10 months. We keep a gluten free household so my husband would feed our son food with gluten when at other people’s houses. Now my son is two and eats gluten at daycare but gluten free at home. So far no signs of Celiac but I think it’s still something we have watch for for his whole life.
Dear thought about suicide,
If thinking about the gift that knowing for sure FINALLY you have celiac doesn’t help then also check thyroid. I was told for years i was every flavor of crazy….the only thing that was crazy was docs prescribing pills full of flour, telling me “low thyroid levels are normal” & my personal favorite. ..”it’s all in your head”.
We get it here…find a good naturopath (most likely near dc) & have them check you out. Probably more going on than celiac
To the person that has been having trouble keeping weight on; I just wanted to let you know that I had the same problem until I started drinking Vegiday protein shakes with my breakfast. I use coconut milk to blend it, I also add a banana & some strawberries, since I have been drinking them my weight has been holding steady at 120 lbs. The shakes are vegan & allergen free. Hope this helps.
The idea that Coors could brew a good gf beer-heck their REGULAR beer is piss. Long before celiac I drank one one time and that was that.
To the 67 year old, I may be WAY off base, but if you’re having increasingly bad reactions to food, you may want to look into mast cell issues – whether it’s mast cell activation syndrome or mastocytosis. It’s possible your anxiety and depression are coming from food reactions. Also, about your stomach perforating, if the doctors don’t know why, you may want to look into connective tissue disorders. Especially if you’ve always been more flexible than normal for your age. Ehlers Danlos is what you should google. (People with Ehlers Danlos are more likely to have celiac than the average population possibly because the stomach is chock full of connective tissue.) Also, Ehlers Danlos and mast cell problems often go together. Good luck!