It’s six in the morning and I’ve been up for 4 hours already. Yeah…sleep has not been my friend lately. Before I go grab my 13th cup of coffee, let’s do a quick mailbag.
Hey Dude! (You ROCK!!) I am your redheaded Celiac sister in Indiana. I love the work you are doing for us all, and your humor and great attitude and support. I have learned to much from you during my GF journey. I was diagnosed in 2011 and have been completely and faithfully GF. Something has been wrong this past month. I have wanted to stop eating all together. When I don’t eat, have nothing in the system, I feel pretty darn good. But as soon as I eat (doesn’t seem to matter what), most days not until after 1pm, bam! Cramps double me up and I am miserable for hours, making me mad that I ate at all. Any input, O Wise Dude?
Growing up with 3 older brothers, I always wanted a sister, so welcome to the family. I’ve been thru stretches just like you describe where no matter what I eat, I feel like poop. That is usually my body telling me to clean up my act a bit. At that point, I recommend doing the Whole30 or following the AIP diet for a while. It’s kinds like hitting the reset button and it’s worked wonders for me.
I travel as part of my job, and I’m frequently “set up” with team meetings/etc… that of course revolve around dinner. I’m notified of the restaurant, and then get to spend my time figuring out whether I can actually enjoy the meal or not. As I’ve been contacting these restaurants, it struck me that it would be nice to have a “standard question” list that would help make sure we don’t forget things.
Not sure about a standard question list as every restaurant is a bit different. I once wrote about my experience going to a brand new restaurant and the steps I took to hopefully ensure a safe meal. Here ya go:
Step 1: A few hours before we left, I called the restaurant and asked to speak with the manager (who sounded about 12…first bit of trepidation.) I explained my situation and I was told they actually had a gluten-free menu. That’s a good sign, but not a guarantee they have their sh*t together.
Step 2: As we entered the restaurant, I again asked to speak with the manager just to say “Hey…I’m the guy who called. Please be my friend tonight.” We went over the menu a bit and I took my seat.
Step 3: While everyone else looks at the menu to see what they want, I study the menu to see what I cannot have (which is usually about 95% of the menu). It’s a process of elimination that can take some time. If it’s a large menu, sometimes I don’t even bother and I just wait until the waitress comes along.
Step 4: The waitress comes over to the table and I stand up and quietly explain my situation to her. Note that I said quietly. I hate the attention that my situation brings and I also don’t want to put the waitress on the spot in front of the whole table. We go over the do’s and don’ts and the can’s and can’ts of making gluten free food.
Step 5: It’s time to order. The moment of truth. I usually have at least three items that I will ask questions about and will always go with the safest choice, even if it’s not my first choice.
I have (list of symptoms goes here). Do you think I have celiac disease?
I get these types of emails a lot. I don’t answer them or any medical questions unless I am absolutely sure of the answer. Please, please, please, if you suspect celiac, go to the doctor. The gold standard is still the blood test, followed by an endoscopy. Here are the symptoms of celiac disease. If you’ve got some of these, call your doc and make that appointment.
Like most people dealing with gluten related issues, I’m feeling frustrated and confused. I have been sick most of my life with multiple issues, but things really began escalating in the past year. Finally after not being able to deal with the pain and exhaustion by myself anymore I went to my family doctor. She ran a slew of tests and my gamma globulins and anti-gliadin IgA were very elevated. She then informed me that I most likely had Celiac’s (stab of fear!) and sent me off to a gastroenterologist (who had a horrible bed side manner, I felt like a specimen on a dissecting tray) for a biopsy. The results came back showing intentional blunting and lower stomach inflammation. This was told to me by the secretary after my third phone call to check for results. She said the doctor said there was no evidence supporting a celiac diagnosis, he had no recommendations and didn’t need to see me for a follow up. What?!? I am so confused! Celiacs or not??
Ugh. I hate hearing stories like this. When I began showing signs of bladder cancer 8 years ago, I had surgery done to remove the polyp from my bladder. The doctor then proceeded to go on vacation without telling anyone the results. Last time I used that doctor. My point? Demand the test results from both your family doc and your gastro and then find another gastro to please give you an accurate diagnosis. You may indeed NOT have celiac, but you want to be absolutely sure.
Hi. I am 12 years old and have had celiac for about 3 years. I am doing a blogging project for school and was wondering if I could interview you over email. Thanks so much for blogging! It has really helped me and my family cope with this disease and keep a light, (mostly) positive attitude about it.
I absolutely love it. And yes, we had a nice email conversation back and forth and I helped her with her project.
Does the medication gluten assist really work? It claims to assist in the digestion of gluten and minimize symptoms.
I guess it really depends on what you mean by “does it work?” It’s just a digestive enzyme and I suppose they can assist in some ways. But products like these are certainly not a license to cheat on your diet and get lazy about cross-contamination, etc. And at least I’ll give the company credit, as they are very clear that “Gluten Assist Dietary Enzyme Supplement is not intended to treat or prevent celiac disease.”
Hey Dude. So I’ve been celiac for about 3 years now (blood test and endoscopic biopsies confirmed) and I guess I’m just wondering if you ever got retested or have heard of people I guess growing out of it. I’ve heard rumors it can happen so I’m just curious. I guess I still just have an ounce of denial left in me (even though since being GF ive never felt better). My parents don’t have it. My grandparents didn’t have it. All 4 of my siblings are beer drinking bread eaters.
Sorry to be the bearer of bad news, but no…you don’t grow out of celiac. Once a celiac…always a celiac. It’s your pal for life.
I’m 31 years old, and I have Celiac. I found out on the hard way too many times that the so-called “gluten-free” dishes I ate at restaurants weren’t actually gluten free, and restaurants which claimed to pay attention to cross-contamination are not always doing so… so eventually I gave up on eating out almost entirely, spending more and more time cooking at home. My husband encouraged me to stop whining and take action – and so I did. We developed an app that can perform as an actual gluten-free dishes collection from restaurants, where all the dishes are uploaded by us – people with celiac disease! Unfortunately, we don’t have the budget for advertising (since the app is 100% free, with no commercials or monetization mechanism – it was truly created to help us all) so it is hard to tell Celiacs all over the world about this solution (and actually encourage them to contribute). Due to your huge influence among the Celiac community, I hope to get your support and assistance. I would greatly appreciate if you could tell your readers about this app and encourage them to get aboard.
Sure thing. Folks, the app is called CeliHack. It’s available for both Apple and Android. I downloaded the app and it’s very well done. It just needs more people using it. So please consider giving it a go.
Hi Dude. Here in the UK we have the same problem as you have over there: Why is ‘gluten free’ stuff NOT ACTUALLY GLUTEN FREE?? I contacted Coeliac UK to ask this and got a fairly standard slightly blunt (they couldn’t care less) kind of reply; ‘it’s impossible to be totally GF & it’s tolerated by most people so you don’t have to eat it if you don’t want to’) I feel better than I did when eating gluten BUT keep getting ill again. 2 years since diagnosis I really just want to feel WELL! Any ideas please??????
It took me WAY TOO LONG after my diagnosis to begin to feel better. And it only happened after I made serious changes to my diet. Please read this post: Stop Eating Gluten-Free Foods.
Hope all is well. Just wanted to touch base and say thanks for this site. I am a father of a little girl (5) with Celiac :( I’m tired and it’s a lot of work to make sure she thrives and is feeling loved and not an outcast in school cause she cannot have everything the other kids do… true story, when talking to her teacher, I explained the devastating consequences and long term effects of Gluten to my child… the teachers response when I asked about modifying the amount of food that travels in and out of the classroom for projects and celebrations… “It’s not fair to the other children”. We have a 504, but zero empathy!! SUCKS!! Anyway… I plan on beginning a website/blog for awareness from the perspective of a father and the sadness/effects it is having on my daughter. BUT also the choices we make and the life we live… it’s all good.
Not fair to the other kids?? Ugh…don’t get me started on attitudes like this. Just keep advocating for her. It seems to me she’s in good hands with you as her dad. And when you start your blog, send me the link. Would LOVE to read it.
Hey Dude! Looking for support. I’m feeling frustrated and defeated. Just came back from the doctor and I was told my ALP levels are very low and that “your digestive system isn’t working and I don’t know why, there’s nothing more I can do for you”. I’ve been gluten free for 4 years now, I’ve cut out dairy. My Stomach always feels crappy and I feel like celiac is defeating me. Now I have Hasimoto’s Thyroiditis too, another autoimmune disease. Not looking for pity just reaching out to the community to see if anyone else has been here and what they have done.
“Celiac is defeating me.” I think we’ve all been there. It is indeed a constant unwanted companion. All I can say is to keep searching for the answers. Go to a different doctor. Try the Whole30 or AIP. I know it’s maddening, but you gotta keep at it until you find something that works for YOU.