Does this sound like Celiac's Disease?
Posted , 7 users are following.
I'm 21 years old and from the US and have had stomach problems since I was born. I failed to thrive for the first few years of my life and was considered malnourished until late teen years. I am finally on the charts as far as my weight goes (I'm still very thin though). I have a lot of digestive issues and grew up thinking everyone did and that it was normal to get sick all the time. I would get terrible stomach pains and really bad diarrhea all the time. I was afraid to be away from home and go on trips because I didn't want to get sick while I was away. The stomach problems seem to get worse. Not more frequent, but more intense when they happen. Now I'll get really bad stomach pain and will start getting shakey, cold, sweaty, and pale. Then I start to get dizzy and my ears start ringing and I begin to black out and or throw up. Then I get terrible diarrhea. Outside of feeling really weak and tired afterwards, I usually start to feel better once it's all out of my system.
I can't seem to pinpoint what food is the cause of this. I used to think it was milk/dairy but it even happens when I don't eat that. I went to a pediatric GI a few years ago and she did a blood test which came back negative for celiac but I don't think I ate much gluten the week or two before that test... she said since there wasn't blood in my stools it couldn't be chrones so therefore it was ibs. She basically sent me home with probiotics and that was that. I hate going places because I never know when I'm going to get sick. It doesn't happen after every meal... it'll happen every week or two. I've been trying to gain weight because I'm a university athlete and I'm way too thin but I can't no matter how hard I try. I plan on going to a GI doctor again soon and maybe get an endoscopy.
I am tired all of the time and also have (and have always had) a lot of dental issues.
I also wanted to add that I have hashimotos (autoimmune hypothyroidism). I was diagnosed with that when I was 6 years old.
Does this sound like it could be celiac? Or do I probably just have ibs? Any thoughts would be greatly appreciated!
1 like, 23 replies
dee53012 anne91595
Posted
yes and yes, have you not been tested for cd?
Have you tried eating gluten free for a couple of months to see if you feel better? If you have and you still have troubles, it could be another food sencitivites or allergies.
I have CD and cannot eat most foods, although the longer I am GF, the more I find I can eat some foods that gave me trouble in the past. It take time for the gut to heal.
If I were you, I would be eating lots of gluten for a couple months and then go get tested for it. I am suprprised if they knew you had hashimotos that they didn't test for CD.
anne91595 dee53012
Posted
Thank you for your reply! Yes, they tested me a few years ago with a blood test of some sort but I think it came back negative (that's what my mom told me when the doc called her). However, I hadn't been eating a lot of gluten at that time anyways.
I have not tried cutting out gluten completely, but when I'm away on trips or have important events then I avoid it as much as I can to make sure I don't get sick.
Could my original blood test have been a false negative?
dee53012 anne91595
Posted
I assume you have had a colonoscopy?
I will have to get back to you on this, I'm too busy right now to adress this. Will chat later OK?
anne91595 dee53012
Posted
No, I have never had a colonoscopy or endoscopy... the only "test" I've had done was a blood test (idk which one) and a rectal exam of some sort where they swabbed to see if there was blood I think...
We'll talk later when your free. Thank you so much!
deb50 anne91595
Posted
Hi Anne
hope it's ok to come in on this conversation.
From your symptoms it does sound like coeliac disease.
ive know people have negative blood test that have gone on to have an endoscopy which has shown CD.
i think you should request an endoscopy to check theses symptoms out and possibly a colonoscopy.
Have you been tested for milk intolerance by the way?. Some people have milk intolerance which courses all sorts of problems and as a coeliac milk can be a problem until you've been on a gluten free diet and your intestines start to heal.
ive CD had a positive blood test and endoscopy. I've been on gf diet for 2 years.
Debs
anne91595 deb50
Posted
Thanks Deb! I wasn't tested for lactose intolerance because I was already cutting out a lot of dairy products so they didn't want to make me sick with the breath test. I will probably schedule an appointment with a new GI doctor. The thing is, I don't get sick every time I eat gluten or dairy... I only get sick every week or two not daily. That's why I'm hesitant to believe it could be CD.
Thank you for your response!!
dee53012 deb50
Posted
It's an open forum! the more the merrier!
laurie99463 anne91595
Posted
It certainly sounds like you should go back soon and get re-examined. I would highly suspect Celiac (I am living with it myself). In any case, something is amiss and should be determined.
Loads of hugs, Laurie
anne91595 laurie99463
Posted
Thank you so much for your response! Yes, I will probably be scheduling an appointment with a GI doctor soon... I just don't get sick daily after every gluten intake. I just get sick every week or so, but I'm usually fine if I try to avoid gluten and dairy. However I haven't cut out either one from my diet. I just avoid it if I have plans or am away on a trip. Probably not the best choice haha.
FA54321 anne91595
Posted
Your symptoms sound very much like coeliac disease. I also had malnutrition and anemia. It is quite common to get a false negative result from a blood test for coeliac disease, so definitely have an endoscopy to investigate further. You need to be eating wheat/gluten for at least 6 weeks on a daily basis to get an accurate result, if you don't your body won't make the antibodies.
Quite a a lot of people get misdiagnosed with IBS instead of coeliac disease as the symptoms are similar. I wish you well and good luck in your quest.
P.S. My thyroid condition improved once I got to grips with my gluten free diet.
anne91595 FA54321
Posted
Thank you so much! I'll definitely request an endoscopy. That's really encouraging to hear that your thyroid started getting better when you went gf. My TSH is currently at an 8.25 and it's been a struggle to get it under control. Thanks again for your response!
FA54321 anne91595
Posted
Just remember you still need to eat gluten until you've had the endoscopy. Good luck!
dee53012 FA54321
Posted
anne91595 dee53012
Posted
I will!! Ugh... I love gluten and really hope it won't be my last time haha! Thank you guys again for being so helpful! I'm still trying to find a GI doc but I will let you know how everything goes! You guys are the best!
dee53012 anne91595
Posted
I know, I loved it too, it took me over a year to stop whining that i couldn't have it anymore. I tried every recipe for bread, cookies . . . I gave up. And GF boxed and processed food tastes like cr*p. The only part about eating how I do it that I stay very slim. I cannot gain weight and I eat between 4 and 6 full meals a day. I look great!! Just wish I felt as good as I looked!
I hope you don't have it but if you do, you will feel better getting your diet in order. I really think most of our health problems are from eating processed foods. Each time i eat something package, i get to feeling low. it is best to stay away from it all, gf or not 😛