9 signs you may have celiac disease
1. You spend half your day in the bathroom and the other half making sure you are near a bathroom.
2. People ask you when the baby is due…and you’re a guy.
3. After eating Thanksgiving stuffing, you don’t make it out of bed until Sunday.
4. You drink half as many beers as your friends, but feel twice as sick in the morning.
5. You constantly start sentences but because of brain fog…
6. You have what looks like poison ivy…and you live in Manhattan.
7. You’ve been misdiagnosed as having IBS, Chrohn’s, anemia and an ulcer…all by the same doctor.
8. You eat more than ever, but people are always asking you if you’ve lost weight.
9. You nap more than a two year old.
Sarah
207 days ago
Great blog.
Re: the 9 signs. i have none of them. And yet, 1 year ago I was diagnosed with Celiac Sprue Disease as results of Endoscopic Biopsy (5 samples taken). There follows a year (so far) of hell as I try to follow a gluten-free lifestyle while living in a very small remote town in East TX, I have a highly-visible job wherein well-meaning people try to feed me foods I can’t eat, and are hurt by my gentle refusals. etc. & etc.
Meanwhile, as I had NO digestive symptoms before diagnosis – why the endoscopy? We were looking for a reason for my being severely anemic and calcium deficient, despite being and enthusiastic Carnivore who drinks 1 qt+ of milk a day — I do not feel one whit better. I’ve gained 25 (more) pounds in the past year, adding to my already obese frame, but otherwise I note no changes.
Other members of a Celiac Support Group which I attend think i am nuts to question the diagnosis. “Why are you in denial?? embrace GF living, and you’ll feel so much better!!” I didn’t feel bad before!!!
Do you have any advice – resources – guidance????
Thanks for listening.
The Gluten Dude
207 days ago
Hi Sarah. One quick question: Did you get your blood tested for celiac as well? There are two parts for a confirmed celiac diagnosis. One is the endoscopy and other is the blood work. Blood tests can detect higher than normal levels of certain antibodies in people with celiac disease. As far as I know, you need both to come back positive to confirm you have celiac. Please confirm this with your doctor though.
If you do indeed have celiac disease, it is not totally uncommon to not have any symptoms. But even if you don’t have symptoms, please understand that any trace of ingested gluten will damage your intestines, which can lead to other worse diseases (cancer, etc.).
As for the others in your life, I’m sure they all mean well, but you’ve got to look out for yourself. You simply cannot eat gluten and if your co-workers cannot understand that, they’re boneheads.
Hang in there Sarah. I’m five years in and it does indeed get easier and you get to a point where you can’t even imagine eating some of the foods you used to eat.
Marcia
30 days ago
I have a co-worker who loves to bake. She would leave little treats on my desk and say “lovingly” .. it’s ok, it’s really little. IDIOT!!! I can’t tell you how many times I have told her that I can’t have it, no thank you, that’s very sweet of you but no, she didn’t get it. finally I just said, it would make me sick, so NO!!!! She pouted and her feelings were hurt, geeezzzz!!! Some people are just dense!
The Gluten Dude
28 days ago
Yep…
Donna
1 day ago
Hey Marcia…My Mother in law told me that the flour was only on the outside. Just scrape it off. Talk about DUMB!!!! lol
Marcia
1 day ago
Hi Donna, I know.. it’s so crazy.. I am going to a BBQ with my boyfriends family this weekend, and they are making macaroni salad, rolls and probably cake for dessert. Luckily I bring my own food and they don’t care. Chicken on the grill and ribs and salad… I don’t even bother saying that I can’t eat something, there are too many somethings, I just don’t eat it.
Donna
1 day ago
Can’t even imagine Gluten Dude??? OMG…one bite and I am heading to the bathroom! It’s pretty scary because you wonder…ok…diarrhea…what other symptoms are are going to arise from this one bite????ARGHHHHHH!
Tracy Dean
110 days ago
HI Sarah,
I was exactly like you, the only symptoms I ever had were severe anemia (requiring iron transfustions), brain fog (they all thought I was a ditz), and really bad bruises if I just bumped into something. At age 40, my Dr finally had my blood tested, and I did the endoscopy. I’ve been gf for five years now, and I still feel the same. BUT, when I get glutened, I’m on the floor of the bathroom for 8 hours in a neurological adn physical hell. You WILL start to feel better, and it always helps to talk to people who actually understand! Hang in there. Stay healthy. Exercise.
arnold zimmerman
50 days ago
Hello Sarah,
It is just not true that you need to have have both a positive intestinal biopsy and elevated serum levels from either or both of the endomycial and the transglutaminase tests. Many times the biopsy misses the area to proclaim a diagnosis of celiac and the most often used blood tests are much better at giving you a false negative than a false positive reading. A complete digestive stool analysis that tests for gliadin antibodies, secretory IgA and pancreatic insufficiency can be far more reliable, when combined with any of the symptoms that brought you to the doc in the first place. Most people are better off gluten free even without celiac. The difference is that those with celiac are much more compromised by its ingestion. There is good reason for those who want to eat well and they right off the bat eschew gluten. Period.
Sharon
132 days ago
My symptoms are anxiety, fatigue and terrible acid reflux, none of which have gone away after 2 years of strict gluten free diet. I had the endoscopy to check for damage from the acid reflux and that’s when they found the celiac. I gave up gluten the next day and have been waiting and waiting to feel better. I can handle the sacrifice of the food but it would be nice to feel good again.
The Gluten Dude
132 days ago
It took me more than three years to start feeling better so I know what you’re going through. Keep doing what you’re doing and eventually you will begin to heal.
If not, maybe you’ve got something else going on as well.
Keep me posted.
Mads
123 days ago
Hi Sharon,
I am not an expert by any means – and this is my first time on this site as well. I have had to cut out soy, corn, casein and all relatives of wheat+gluten to feel better. There are some days when I don’t feel great either.
If you follow gluten free goddess, you will also note that she has had to give up other foods. You might try seeing a naturopathic doctor that can do a blood test to see if you have allergies to other foods. My sister, for example, can not have banana, broccoli or blueberries. (odd that they are all Bs).
If that is not a possibility for you right now – try cutting dairy and corn. Both of these are often triggers for celiacs (or those with gluten allergies)
The Gluten Dude
123 days ago
Thanks for the input Mads. I have given up dairy since I originally wrote this post and I can’t begin to tell you how much better my gut feels. Mrs. Dude says I almost never complain anymore.
Now if I could just do something about my back…
Mads
123 days ago
Oh, thanks for the note. For the back – yoga has been my answer! Strengthens the back! Start at home if you feel silly – but a studio is great to ensure you are not hurting yourself.
Ps. amazing site. very real and informative! I think it is great you still have a mixed-household. Something I worry about when starting a family for sure!
The Gluten Dude
123 days ago
Been dabbling in Pilates. Yoga is next. Thanks for the positive site feedback. Much appreciated.
Marcia
29 days ago
And oats!!
Donna
1 day ago
Sharon, I have those three symptoms as well…and they have NOT went away either. Ok…the acid reflux is better with medication, but the anxiety and fatigue have NOT went away, even WITH meds!!!!!!
Dottie
103 days ago
So happy I found this site. Someone in our celiac support group shared it. My son was diagnosed as “allergic to gluten and casein. Very sensitive to soy and corn.” What a nightmare it has been. I fully appreciate your article on Amy’s pizza. The ingredients make my head swirl. As soon as I think I have figured out what to keep him away from, I find a food clearly labeled as “GLUTEN FREE,” only to have an ingredient I thought was off limits. Since I am new at this, of course I question myself. Very frustrating. I called the doctor and asked if he had celiac and if he was actually tested for that, she said it is a lengthy conversation and I needed to sit down and discuss it with her further. Hmmm. I have an appt tomorrow. It has been about a month gluten/dairy free and he does not seem to be much better. He is due to have bloodwork again, his iron, B12 and vit D were very low.
The Gluten Dude
103 days ago
Sorry to hear about your son. I always say as much as it sux to have celiac disease as an adult, it must be much worse as a child.
Not sure why it would be a “lengthy conversation” with your doctor. Celiac diagnosis is a pretty straightforward test and either he has it or he does not have it.
Please keep me posted on his status and if I can be of any help, do not hesitate to call on me.
Dottie
103 days ago
I went to talk to the doctor today. She did not test for celiac, only for gluten allergy- which obviously he was positive for. She is willing to run the bloodwork for the antibody, but does not really seem happy about it. The treatment is the same, so she does not see any reason to proceed any further. I would like a correct diagnosis. I am not sure what was so lengthy about it, it definateky could have been handled on the phone with a simple yes or no. I think it was more the fact she feels it is not necessary to proceed. Maybe it is not, but I would like to know what we are dealing with. From what I understand, celiac can run in families.
Thanks a bunch!
Your site is a wonderful resource and I will recommend it to others I know with gluten issues.
The Gluten Dude
102 days ago
Appreciate the kind works about the site…
Now regarding your doctor, I don’t have too many kind words. I don’t understand why she wouldn’t test for celiac. The treatment may be the same, but an allergy and celiac disease are two totally different things. And you and your son deserve an accurate diagnosis.
And yes, celiac is a genetic disease so they would another reason to want to know.
My two cents is to find another GI who takes it more seriously.
Boy…sometimes I just hate the medical community. Truly great doctors are few and far between.
Gabbi
97 days ago
Hi. I was diagnosed with celiac disease a week ago, pending the gastroscopy. Whilst still in denial a little, I am thankful that I have a fantastic doctor on my side. I originally just wanted to be tested for low iron levels, as I’m always quite tired, but the dr insisted on b12 and a bunch of other tests. When the results came back saying I had both iron and b12 deficiencies, the dr immediately ordered the celiac test without so much as a “how do ya do”. It never crossed my mind ever that I could be celiac. I probably would have been one of those ignorant people who would feed a celiac cous cous and say “but it’s not wheat”.
Even though my life will probably be much harder for a while, I am still so glad I found out now, rather then when I’m 60 and my intestines are destroyed.
The Gluten Dude
97 days ago
That’s the right attitude to have Gabbi. I wish you well on your celiac journey. And count your blessings that you have a doctor that rocks!
A
94 days ago
Hi
Great post – loving it!
I am sure everyone’s doctor is on top of it but have you all had your thyroids tested? Celiac and thyroid disorders often go hand on hand and could be why some of yoiu are still feeling really bad after all of this time – just a thought!
The Gluten Dude
94 days ago
Thanks for you input. I will indeed do some research on my end.
UGH!
94 days ago
Hey guys,
I’ve had my share of gastro problems over the years, but nothing this bad. They just say you have IBS when they don’t know. I’ve had some of these symptoms for a month at time in the past, but it would clear up.
I had a hysterectomy in July and haven’t been right since. I was feeling so bad, I had a colonoscopy and endoscopy done in Dec. They said I had GERD. Gave me something for it. It seemed to work for a bout 2 weeks, but now, things are even worse. I raised the head of my bed up, try to stay away from food that’s bad for GERD, but it doesn’t do any good. It has been 7 months of 24/7 discomfort. I can eat just one bite of bread and bloat up like I’m pregnant. I usually get some relief during the night, but soon as I’m up and going, I feel so yucky, I can hardly function.
I’ve had all abdominal organs scanned this week and nothing that unusual showed up on regular CBC blood work. I suggested to my doctor, what about celiac? I am seeing the doc again tomorrow to discuss the antibody( whatever) blood test and another endoscopy. They could have done that biopsy the first time!
I have also lost 11 pounds in 4 weeks, 5lbs. of which was just this last week.Seems like I can’t eat anything. I’m 5’10″ and at 133lbs. I don’t need to lose anymore.
I am hoping it is celiac, so I will know what is wrong and I can fix it and get on with life! I hate feeling awful all day. I don’t know what else to do if they say it’s not celiac.
The Gluten Dude
94 days ago
Insist on getting tested for Celiac. A good doctor and a proper diagnoses will make all the difference. Hoping they find a cause for you…soon!
A
93 days ago
These guys have years of research on allergies, food intolernces etc. and have put out an elimination diet that may help if you don’t get any joy from the doctors.
It walks you through the whole thing and helps you figure out what the problem is (of course if you are going through tests with your doctors you cant use it as that will affect the test results).
It’s in Australia but you can order the book from them and it is a very comprehensive guide to foods that you can and cant eat (except of course it has some Australian brands). If you look around on the site they also have a pretty good recipes book and some other resources.
How do I know all this stuff – I am/was intolerant to salicylates and am just waiting to get the endocopy and biopsy testing done for celieac – what joy!
A
93 days ago
Sorry here is the url: http://www.sswahs.nsw.gov.au/rpa/allergy/
Melissa Booth
88 days ago
I had to throw my two cents in here. I too am a chunky butt. My history with Celiac is a long one. I thought originally that I had IBS. I was diagnosed when I was 18. Yet didn’t get my actual celiac diagnosis until almost 19 years later when I was 37. The biggest clue was that I was clinically malnourished. Literally everything was low and I couldn’t absorb anything. I was always hungry, always in the bath room, and always gaining weight.
My weight gain theory is thus— even though I wasn’t absorbing nutrients that I needed to, I was indeed still putting the calories into my body. But I stayed hungry because I wasn’t absorbing so it created this awful cycle. Hunger, bathroom, eating.
Also like someone else said, thyroid does tend to go hand in hand with celiac. Specifically Hashimoto’s thyroiditis. It is an autoimmune disorder. It can also lead to slower metabolism which would mean harder to lose weight. If you have any of those symptoms you really need to be an advocate for yourself and if your doctor will not listen then go to a new one. Seriously. It took me about 6 years of being so ill that I could no longer work outside of my home in order to get diagnosed. Fortunately, I found a position that allowed me to stay home but otherwise, it was a dark, dismal, miserable experience and no way for anyone to live.
The Gluten Dude
88 days ago
That is some story Melissa. And your theory on weight gain makes perfect sense…sadly.
Dark, dismal and miserable describes a lot of undiagnosed celiacs.
JIGGY
68 days ago
I can totally relate to # 5, 8 and 9 even before i was diagnosed with celiac.
I ate more than anyone in my family and still remained skinny.
Thanks for all the info.
The Gluten Dude
68 days ago
You’re welcome. And yep, sadly, naps are still a part of way too many of my days.
Jen
43 days ago
So glad I found this site. Dude, your posts are amusing, insightful and informative — thank you! I was just diagnosed with a wheat intolerance. I have finally found a wonderful doctor who, not surprisingly, is a naturopath. She suspects other food allergies but one thing at a time. Been diagnosed (or misdiagnosed… time will tell) with IBS, Fibromyalgia — you name it. Chronic fatigue, fog as thick as pea soup, bloating bloating and more bloating, bathroom stuff, gas, and the last THREE sips of a beer I had a couple of months ago had me doubled over in pain for the nght. Anyway, I find it very difficult and confusing to follow a gf diet but I’m reading as much as I can about it. You mention napping; I wasn’t aware that being so tired can be a part of celiac disease. I don’t have celiac so I’m wondering if it can be a part of a wheat intolerance, do you know? And do most salad dressings have gluten? If I don’t see an ingredient (i.e. gluten) in the ingredients I’m assuming I’m safe but after reading some of these posts now I’m wondering… (I remember reading something you wrote, Dude, about cocktail sauce). I guess what I’m asking is: Does something have to say gluten free for you to feel safe to eat it? Anyway, thanks for having such a great sight. I’m learning and appreciate all the posts. Happy holiday weekend, everyone.
The Gluten Dude
42 days ago
Appreciate the kind words Jen.
From what I’ve read, the symptoms of gluten or wheat intolerance can be very similar to those of celiac disease. The only difference is that you’re not getting damage to your intestines.
As far as salad dressings go, it all depends (don’t you hate that answer??)
Gluten can be hidden. It can be part of “spices” or “natural flavors” etc. So if in doubt, do your diligence. Check the web. Make a phone call to the company. And if you don’t get a solid answer, don’t eat it.
Tabitha
25 days ago
My symptoms.
Couldnt go to the bathroom, had to take a laxative web my stomach would hurt so bad.
Fatigue, depression, insomnia, type II diabetes, and a recent diagnosis of Rhuematoid Arthritis
My recent diagnosis of having RA really sparked my auto immune diseases research. I came across a clinical trial with RA patients removing gluten from their diet (as a result of positive tests for Celiac). Their results of pain subsiding, joint mobility slowing returning was amazing to me. A dream come true. My pain is so bad I can’t simply wipe down the counter. After going over the plethora of symptoms or could have, I made my Dr’s appt. I have a Dr who wears her heart on her sleeve. She listens, she cares, she advises, she questions modern medicine – always prefers natural over man made. She even once gave me makeup tips. After going over the print I showed her on this clinical trial, all she said, ” what harm can testing you do?” she wasn’t surprised of my diagnosis since I have a lot of classic symptoms but yet had symptoms from more progressed stages of the disease in her opinion. She sums it up that I’ve had celiac since I was diagnosed with depression 12 years ago. Our auto immune system is so much reflected on our nervous system, it’s amazing how one wouldn’t have known. My journey continues, it is hard but rewarding that tonight I cleaned my own kitchen , I wiped my counters, pain free for 30 days.
The Gluten Dude
25 days ago
Great story Tabitha. Continued healing.
amy
16 days ago
My daughter (6) was recently diagnosed with celiac. we are in a holding pattern right now. Her blood tests came back definite and now the Dr. says an endoscopy is needed. Why? Her numbers cause no question. She has been tested 2 times, 2 different Drs with a 6 week gap. Wouldnt it just make more sense to go gluten free and get on with life?
The Gluten Dude
13 days ago
It’s such a personal decision Amy. Theoretically, an endoscopy is needed to confirm. And I’d want to know for sure…but that’s just me. Best of health to you and your daughter.
Crystal
13 days ago
I had blood work done for my liver and kidneys. The doctor (gastro) got the blood results back and know they were not happy with them (low). So know they have me going in for EGD Test. And looking to see if I have celiac disease. I have already had a colonoscopy. Should I be asking some more questions or asking for different test?
The Gluten Dude
13 days ago
I’m always hesitant to give out medical advice Crystal so take it with a grain of gluten free salt. But a specific blood test and an endoscopy are still the standards for celiac testing. Find a GI who is very knowledgeable about celiac disease. Good luck.
coeliacgirl
8 days ago
Hello,
I got diagnosed last February after roughly a year and a half of trying to find a doctor who would simply give me a blood test after spending more time in the doctors than anywhere else. Finally got diagnosed with coeliac disease and mine were also off the chart.
After a year I am only starting to feel slightly better but was wondering if you still get the ‘coeliac days’? I mean not glutened but just so so tired, detached, brain fog, almost dizzy faint and feeling achey to your bones?
I’m hoping it will go away but i get days every month where i feel like this and it sucks.
The Gluten Dude
7 days ago
I get them a lot still. That’s why when people say to go gluten free and you’ll be fine, it’s not necessarily the case. Tired and detached still describes some of my days. Hang in there!!