Do I Have Celiacs?

[curiousifcd]

Ok I am new to this site (i have been reading over the posts for a few weeks now, but just registered cuz I need some questions answered). I know you guys see the "Do I Have Celiacs?" a lot...but here's one more. I'm a 19 year old college freshman and I haven't been feeling good and I think it's getting worse. I get incredibly nausous, dizzy, very bad headaches, brain fog, I find it hard to pay attention, my stomach swells out (very embarassing, I'm to the point where I dont wanna wear jeans or anything tight), my stomach gets very cramped up, and I feel very consipated, whereas I usually get woken up in the early morning if its fnally time to go (tho I do go about every day to eveyr other, I just feel the urge to go a lot more) Also I feel very full after eating and my stomach is quite loud (people comment on it). Also Im very gassy and I think my stools are abnormal (white specks throughout it, sometiems blood). Ive questioned if im allergic to nuts or lactose intollerant. I was a vegetarian for a year, up until last month but I started adding meat becasue I thought it was screwing up m y body and making it so I dont heal as quickly- I had a kne injury in September that wont heal, and I have to have surgery in 2 days) My sister has a lot of stoamch probelms (hers are worset han mine) I believe she was diagnosed with celiac disease. but then she was retested and it was negative so she said she has IBS. She has cut out a lot of gluten sources tho, and seems to be doing better (tho sher efuses to ccept it, and sitll eats pizza and such - shes older tho and it doesnt live with me). I went to her dr. and he was very helpful and tested me for celiac disease, anemia, and my live and kidney functions (diabetes runs in the family too). After 2 weeks (the lab took foreve to send it back to them, since I had my blood drawn at school and had it sent back) he called and said everything seemed fine, and it was neative for celiac disease (tho I dont know any of my numbers that people have talked about in posts). I was supposed to go back yesterday, but I dont want to feel like a hypochrondiac, or rack up my moms medical bills. Also, last time I went in there they were like oh you probably dont ave celiac disease, people with celiac disease have diarhea not constipation (is that true?) Anywyas, I cut out the gluten about 2 or 3 weeks before i saw the dr and felt ALOT better (tho I did still have slipups- one caused me to wake up at 3 am to og to the bathroom, adn then I almost got sick and really dizzy and chills- almost had to lay on the floor- thought I had the flu or soemthing, but I really dont think so - my roomis or boyfriend didnt have anything wrong). Now that Im home on spring break, Im feeling pretty crappy. I have rashes and itchness all over my body (my hands are especially bad, and are chapped and red and have lil white bumps). I woke up this mornign and my face was rbight red. Its also on my legs and arms. Ive always had very sensitive skin and have to use special soaps and such, and I thought my skin was getting better but guess not. I even bought baby lotion because i thought it would help, but its getting worse. Ive eben eating pretty gluten free, tho I reelaized since I have been home Ive been eating wheat crackers and cereal and granola (i was a major ceral junkie- especaily since im quite a picky eater and am forced to have a meal plan at school).Is it possible I have jsut a gluten sensitivity or wheat allergy or soemthing? I do feel better when I cut out the gluten. Do they do allergy tests for that? I don't want to osund like a hypochrondiac, but I just want to feel better. Any help or input you could give me is very appreciated!

[KaitiUSA]

No that is not true...many people with celiac have constipation. I didn't get diarrhea with it I got constipation not too bad but just a little. I had major nausea and some other symptoms as well. There are very many symptoms that can come with celiac. Everyone has different ones though. You could have no symptoms and still have it. Some people actually don't even get symptoms. Your sister tested positive for celiac once? If she was diagnosed with celiac disease then diagnosed with IBS then I would tell her to be checked again. Celiac is commonly misdiagnosed for IBS and other stomach problems. You may want to try getting a food intolerance and allergy testing done. You could have gluten intolerance but not celiac. Also you could get a biopsy done or more bloodwork if you think it is celiac. Your doctor doesn't seem to be too knowledgeable in celiac if he/she is telling you its not celiac because you don't have that symptom. I think someone needs to teach that doc about celiac. It has been said there are over 200 symptoms with celiac and one person may only have irritability and diarrhea while someone else may just have nausea and fatigue. It is hard to diagnose because there are so many symptoms that can be involved that resemble other things or even no symptoms at all. Also many doctors don't know much about it and misdiagnose it or miss it altogether. I would get checked for food intolerances and you could even do an enterolab where they test through a stool sample for celiac, malabsorption, senstivities to gluten and anything else you order...it is not accepted by the medical community for diagnosis or anything but I find it to be a very good test to get done. They also can do a gene test. There are also blood tests you can get done for intolerances and allergies that I would recommend if you don't do the enterolab. Good luck with everything and hope you find out what's wrong. Hang in there

If that doctor will not listen to you find one who knows something about celiac. If you go to the home page here you will find a link of doctors that are recommended by celiacs in each state. I'm sure there are other ones in your area as well you could also call around and ask if you don't find one on the site. Good luck

[curiousifcd]

Hey Thanks for replying! Right now I think I'm just goign to eat gluten-free for a while, becuase it diffently seems to be helping, and I didnt eat a lot of gluten before (tho gluten is in some weird sources!) so its not incredibly hard..tho I do find it hard to eat completely gluten-free since the dr said it was negative..im just gonna assume im gluten or wheat sensitive. Even tho I heard that messes up tests..tho Id rather feel better than be confirmed or whatever..tho I think I might look into an allergy test. After reading through the message boards it seems like a lot of people have never heard of celiacs, and a lot of dr.'s are unfamiliar with it too..does it make hard trying to explain that your celiac? How many dr's did u have to go thorugh? Just curious- Thanks!

[KaitiUSA]

I went through 3 doctors before I found a doctor who mentioned celiac. I had no clue what it was but I had obvious symptoms of it...nausea, weight loss, fatigue, constipation, and anxiety were the main ones. I still go to that doctor of course and also have an awesome GI doctor who is also very knowledgeable in celiac. They thing is it was rare when most of these doctors were in medical school and therefore they did not get proper training of it and don't really know a lot about it. Now it is starting to get more common and hopefully the doctors will start learning more about it and catching it. If you feel better off of gluten listen to your body thats the best thing to do.

The enterolab test does not require you to eat gluten again unless it has been more then 1-2 years since you have had what they are testing for. You can find out more information about that on the site under FAQ on Open Original Shared Link

They can still get positive results or test for sensitivities and so forth which may be helpful to know what else if anything you may be sensitive too. They also an test for the celiac gene and you can find everything they can test for on there.

Make sure you inform your doctor about celiac though...I wonder how many people who actually do have celiac walk in there and out without an answer. I know when my doctors blew me off as soon as I was diagnosed they got a call saying what I did have and I told them that for a future reference so other people hopefully wouldn't go through the same frustration. The celiac word has really been spreading around...I still get what's that sometimes but I don't have to say it as much now because some people have actually heard of it.

I wouldn't rule out celiac just yet... you have a lot of the symptoms and lactose intolerance does come with it due to damage of the villi...once gluten-free that usually gets better.

If you need more info let me know Have a great day!

[Lesliean]

Temporary lactose intolerance can go along with celiac so you might want to monitor how you feel an hour or two after eating dairy. I've read a lot of medical articles that say the false negative rate for the blood tests for celiac are high. I don't consider a negaive blood work to be the final word. I went through 6 doctors to get some help, and 4 years.