Photo Courtesy http://tinyurl.com/k38ew6dToday is May 1st, and the month of May is designated as “Celiac Awareness Month“. To kick off the month, I thought I would share with you a nice little infographic courtesy of Gluten Dude. There are over 300 symptoms related to celiac disease, and a person can experience one or many of the symptoms, making it extremely difficult for a doctor to make the diagnosis. For myself, I was extremely anemic, and had been struggling with that for at least 15 years before being diagnosed. I had horrible joint pain, I thought I had arthritis by the time I was 30. Although everyone thinks that celiac disease just means ‘digestive issues’, it’s really much, much more than that.
Celiac Disease Symptoms – Courtesy of Gluten Dude
How many of the above mentioned symptoms did you experience before going gluten-free?
Me? 15 that I can think of off the top of my head. Thank goodness for a celiac disease diagnosis!
Betty says
My daughter has Celiac’s. If I could have one wish it’s that people would recognize it as a real medical condition. So restaurants would be more careful and accommodating, work place would consider a disability and not think eating gluten free isn’t just not having toast for breakfast and rolls at dinner. (can you tell my daughter is having these problems). What really made me mad was even Rachael Ray said in her magazine that people who eat gluten free are just picky eaters. EXCUSE ME? I lost all respect for her and will no longer get her magazine.
Wild Child says
Your daughter is very lucky to have such an understanding mom. I was diagnosed with Celiac two years ago after suffering for many, many years. My family still asks when I will be able to eat “normal” again. I missed my mother’s birthday dinner because my brother picked a restaurant where I could not eat. His standard reply is “a little bit can’t really hurt you”. Being diagnosed Celiac probably saved my life. I am stronger physically and mentally, a much healthier cook, and alive!
Thank you Betty for being there for your daughter – a lucky girl indeed!
Terase says
Yes “a little bit” can hurt! My daughter, who had been GF for nearly a year, had one bite of a salad with galic powder that had glutton in it (??? I know, WHY?) and threw up for hours!
I only wish it hadn’t taken 30 years for a dr to finally figure what was going on with her.
Jeanine Friesen says
Oh, wow, Terase, that’s a LONG time for a diagnosis! I think they usually say 9-10 years, but with me it was at least 15.
Jeanine Friesen says
Wild Child, I’m so sorry that you’re family is not more understanding. That just sucks. 🙁
Jeanine Friesen says
Aw, Betty, I wish people were more understanding – it’s up to us to inform them! I knew VERY little about celiac disease before being diagnosed, now, you hear of so many people that have been diagnosed. I think doctors are finally catching on, and testing for it more often.
Annie Pennington says
Amen. It’s obvious she was not taught cooking in a culinary school
Kenda says
My daughter is a celiac and was diagnosed nearly 10 years ago. My entire family became gluten free that day because I didn’t think it was fair of us to be eating gluten when she couldn’t. Because of that, I don’t think she ever felt like she was missing out. When ordering in restaurants, I make sure the waiter knows that my daughter will be vomiting all night long and will have a horrendous rash all over her face and body if her food contains ANY amount of gluten. Once wait staff understand that this isn’t a “diet”, they seem to care more about keeping her safe.
Jeanine Friesen says
Kenda, you’re awesome!! Your daughter is lucky to have such a supportive family, that is what makes it easier for the one. I applaud your family!! 🙂
sherry webb says
27 of the symptoms before going gluten free……
Jeanine Friesen says
Wow, Sherry Webb – did you think they were connected in any way?
Margaret says
Even gluten intolerance has some of the same symptoms. Add allergies on top and you must cook your own food mostly. Thanks. ~ Margaret
Jeanine Friesen says
Absolutely, Margaret, you’re right. A lot of the symptoms of intolerance are the same as celiac disease.
Jacqueline says
Wow, I tried GF for over a year and did notice some relief…but due to $$ issues (buy GF food), I had to give it up. I have regained the weight, bloating, mood issues, depression and alot more. Of the 84 problems, I counted 33… but I am also at the end (I hope) of menopause and some issues could be related to that. I noticed a few issues that I haved suffered with for many years…I just wonder…could I have a mild allergy from childhood that has gone really bad by now? I finally have an appt. (cut rate insurance) with a tummy doctor (internal) on Monday, May 6th, but I am not sure what to tell him about my symptons. I get tongue tied when I go to the doctors and end up not telling him all…can anyone help me get a list or something that I can take for my first visit on Monday??
Jeanine Friesen says
Jacqueline, it is possible for celiac disease to appear at any stage in life, and it is also possible for allergies to become worse. The cheapest way to go GF is to stick to naturally gluten-free food (veggies, meats, etc), and not add any of the gf replacements (muffins, bread, etc).
Here is a list of symptoms from the University of Chicago Celiac Disease Center: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf
Good luck at your appointment!
Blair says
2 out of 4 have celiac spru, 1 gluten intolerance, all dairy allergies and casein allergic. I just counted 30 symptoms for me…holy crap! Never thought about me. My MIL has Chrone’s and IBS as does my dh. I thought it came from them….makes you go hmm. Hello dr. Appt for me. Thanks for sharing.
Jeanine Friesen says
Oh wow – that’s high numbers, Blair! Worth looking into it to check, right? 🙂
Tracy says
I have 28 of those symptoms and have complained to my doctor for years. They never helped me so after my girls were diagnosed with food sensitivities and vitamin deficiencies I changed the way I ate too. I’m feeling better but still not great. I’m thinking I may possibly have an autoimmune diesease but don’t want to bother with doctors who won’t help me anyway.
Jeanine Friesen says
Unfortunately, you have to be your own advocate. Keep pushing – doctors are becoming more aware, maybe you can find one that will listen to you.
Stephanie says
My son was diagnosed 2 months ago at 13 months old. We couldn’t figure out why he wouldn’t eat, why he was losing weight and had awful diarrhea. He would cry in his highchair during meal times and cringe at the sight of a spoon. He was iron deficient, pale, very irritable and never smiled anymore. He smiled all the time up to a couple months before diagnosis. I really had to push the doctors to get some answers. I had a couple different Pediatricians say “Well, I’ll test for Celiac but I really don’t think that’s what it is.” Why would they keep saying that? He was diagnosed based on his blood tests. I was told to start feeding him GF right away because he was at the Failure to Thrive point. He’s been GF since March 12 and he has done a complete 180. He has gained 3 pounds, he’s so happy and smiles all the time! I’m sure his iron levels are up, he’s no longer pale and enjoys meal times again. It’s been very difficult for me because he can’t tell me how he’s feeling. He’s obviously feeling so much better, he’s thriving! We finally saw the Pediatriac GI a few weeks ago and she said she’s satisfied diagnosing him based on his blood work, his symptoms and the fact that he’s made a complete turn around by eating a GF diet.
Jeanine, I have just purchased your book and I’m so looking foward to reading it. I have only had time to just thumb through it to this point but I can see it has so much good information. Thank you for sharing your story and wonderful recipes, I look forward to trying them!
Jeanine Friesen says
Oh wow, Stephanie, that’s amazing. I’m so thankful that your little guy is happy again!! What an amazing story, thank you so much for sharing. I hope you enjoy the book, thank you so much for buying it!
Lisa says
I have well over 25 of these symptoms. My hubby and a few kids have celiac and I’ve been suspicious I might. I can’t afford a diagnosis but maybe I should just go gf and see what happens?! Thanks for the list.
Jeanine Friesen says
I can’t give you medical advice, but it sounds like your family has had to deal with the gluten-free diet already. At least you’re over some of that learning curve then. 🙂
Jeanine says
I had been suffering for over a year mayb longer , It started with really bad acid reflux I was sleeping in a chair. Then the stomach issues diarrhea ,and the pain in my was unbareable didnt want to eat .
So I had gone to the Dr.s and then a specialist , for him to tell me I was wasting his time
so my husband works with this guy , and he was telling him about my symptoms , and he told my husband that it sounds like celiac so he comes home and tells me this so doing some research , I called my Dr. and said i want a celiac blood test , she says I don’t think you have that I said I want it done anyway , so she sends me to get the blood work ,and what do you know it came back positive .
I have been on a gluten free diet for over a year now and I feel great , No thanks to the Dr.s
Jeanine Friesen says
Oh wow – that’s amazing! Sometimes you just have to push for it, huh? Sad that the doctors didn’t believe you, and even went as far as saying that’s not what you have. For you, I’m glad that the blood work came back positive. Sometimes, blood work can come back with a false negative. When that happens, you wouldn’t know where to go. So glad to hear you’re feeling better! 🙂
Autumn Austin says
Reading your comment and suggestions have really helped a great deal. My daughter is 17 years old but has been suffering from what we thought was endometriosis since she was 12 years old until she was diagnosed with Celiac Disease 2 weeks ago, I am glad that she finally got a diagnosis but this is something new for us. I have Lupus and have had to change my diet but not to this extent, but we have a lot of the same symptoms her is just brought on by gluten intake. Without people like you, this journey would be even harder . . . so thank you!!!
Jeanine says
Welcome to the club, Autumn Austin! 🙂 I’m so glad that your daughter has finally gotten a diagnosis. I went years without one too – but only realized it when looking back. It seems like a drastic change at first, but you’ll get more comfortable with it, and hopefully thrive while eating Gf. I find getting into the kitchen, and not being intimidated helps me. Since I bake my own break, cookies & cakes, I never feel left out. And my whole family eats them too, even though they don’t have to eat gf, since they aren’t diagnosed. I refuse to make 2 suppers, so whatever we have is gf, even pizza night. If you have any questions along the way, don’t hesitate to ask, or shoot me an email. I’ll do what I can to help.
Mattie says
Wow, I am glad I am not the only one having these problems! I have 58 of the above symptoms and I don’t think I am hallucinating either. I am struggling terribly with getting in to see a GI doctor. The first one I saw blew me off and said well just eat to keep your heart healthy and follow up as needed. Like how could a doctor listen to their patient list their symptoms and not want to find out the cause??? I am totally disgusted with the doctors. I have been waiting over a year to get back in to see a GI doctor but I have been dealing with these problems my entire life which is 28 years. I am ready to get this figured out and to feel better. It is really sad that this disease is not recognized in the medical community as an actual and pretty serious condition. Oh it can just lead to intestinal cancer…no big deal right? And I am a healthcare professional and the doctors still won’t listen to me. Blah