Suspect Celiac-but Negative Bloodwork?

[Dena114]

Sorry if this shows up posted twice- but I couldn't find my post in the message board so I tried again!

Hello, I am new here. My name is Dena and I am 24/f. For two years now I have been suffering from what my GIs have called "IBS." I have constant gas and bloating, and both constipation and diarrhea. I have been taking the prescription for IBS, Zelnorm, for about a year now. It helps to reduce the gas a little bit, but it is still a daily battle, and I am by no means "regular." Recently, I had the Celiac antibody panel bloodwork done, but my GI said it came out negative. I still believe that there is something wrong other than this mysterious "IBS" that most doctors like to call anything that they cannot understand or diagnose. I am wondering if anyone can give me some advice on whether or not you think I have a gluten sensitivity, and what I should do next.

I will describe my symptoms, and I apologize in advance for the lovely details. wink.gif The worst part is the gas. It is often silent, but a very concentrated, horrible sulfur-like smell. I often have bloating and a lot of pressure in my abdomen from the gas. This happens most often when I am hungry or have not eaten in a while. Sometimes I get gas that makes me feel like I am hungry constantly, even though I keep eating and nothing changes. I do not have what I would consider "normal" bowel movements. I have very loose, feathery stools. Sometimes I will not go to the bathroom for a few days, and then on the second day I will have a huge, gassy stomach ache with diarrhea. Other times (but less frequently) I have had really hard stools that have caused pain and some bleeding. I also have another bizarre symptom- my heart often pumps very heavily and rapidly after I eat. It feels like anxiety, although I am not experiencing any emotional discomfort at the time. Some days when I am at the gym working out, I feel great, and other times I feel this same pressure and rapid heart beat and feel exhausted while doing cardio. I eat a pretty healthy diet, including lots of fruits, vegetables, and whole grains. I am wondering if these symptoms sound like Celiac Disease, or something else- especially the rapid heart beat after eating. Should I just try a gluten-free diet and see how I feel, or is it better to try and get a diagnosis from Enterolabs or something? If I do try the diet, how long might it take for me to notice a difference? Should I stop taking the Zelnorm (IBS meds) while trying the diet or wait a while to stop that medication? If anyone has any insight or ideas, I would appreciate your advice. Thank you very much!!!

Do I need a reply in order for this thing to post or what??

[Jennas-auntie]

Hi! Welcome to the board. I have learned so much by reading posts here. I'm sure others will weigh in about the medication, for that I don't know. I do think, however, that one of the first things you can do is get the actual copies of your test results. I know of one case in my hometown where a woman with chronic thyroid problems was told her celiac panel was negative. Then after almost a whole year of continuing trials she got tested through Enterolab and came out positive. Then she went back to her physician who told her that she was actually borderline positive, but they thought she was so borderline she must be negative! (Now she has been able to cut waaay back on her medications and has educated her doctor-he got a copy of updated research on celiac). So I'd get the actual numbers. Also this is important because then you can see if they did the whole panel or not. The other thing is, there is a range of how people come out on the bloodwork, and you CAN have celiac with a negative blood panel. They know this because they sometimes do biopsies on people with negative bloodwork anyway, and find the villi damage present. You don't need a doc's order to go on the diet, if it makes you feel better, but some people like to have the "hard diagnosis" to convince family members, themselves, and the medical community.

[Sarah8793]

Hi there,

I am not positive that I have celiac yet (3 weeks gluten free), but I do know that I am lactose intolerant. I have been for 5 years. Before getting diagnosed as lactose intolerant I would have the same kind of gas you are talking about. Concentrated, sulfer smelling and often silent in passing. Try keeping a food journal and watch what happens after dairy intake. Then you may try taking all dairy out and see what happens. After a month if you are still having problems, try removing gluten. Of course it is always good to see a doc or try enterolab for further testing. Good Luck!

Sarah

[Guest nini]

hi welcome to the board... it takes time for people to see your post and respond... give it time. There is an option after you post something in the right hand corner where you have topic options, and you can select to be e-mailed every time you have a response to your post.

to answer your main question, since you've been tested, you should know that there is a high incidence of false negative test results for this, so you are right to question it. You can do Enterolab if you feel you need a definitive dx, OR you can simply take matters into your own hands and try the diet. If it helps then you have your answer. You may not feel completely better right away, but you should notice improvement if you are in fact gluten intolerant. (It doesn't have to be Celiac causiing your symptoms... could be early stages or just gluten intolerance... it's all the same in my humble opinion)

anyway, good luck and keep us posted as to what you figure out!