Could It Be...?

[lizabee]

Hello, everyone. I'm new here. I'd never heard of Celiac Disease until my GI doctor suggested a blood test. The test came back negative (I'm not sure which one it was--Ig or Tg something, maybe?), but I'm still not entirely convinced. I'm wary of jumping to conclusions, but I can't tell you how much of a relief it would be to finally have a diagnosis and a treatment!

I am a nearly 19-year-old female who has always been a bit of an overachiever with a pretty high stress level. When I was 11 I started having seemingly random episodes of diarrhea after eating, always accompanied by nausea and extreme abdominal pain. It got to the point where I stopped eating just about everything to avoid getting sick. My mom began to panic after I lost a lot of weight and took me to my pediatrician who referred me to a GI doctor.

Ever since then, the symptoms come and go. I got an IBS-A diagnosis a few years ago (eventually constipation worked its way into the lovely mix as well). I know that my symptoms tend to really act up whenever I eat high-fat junk food so I completely avoid some of those foods. Other times, they arrive seemingly out of the blue. My pediatrician felt that I had some anxiety issues and put me on Zoloft, which hasn't seemed to help with the GI symptoms. Ironically, though, the only times I feel anxious are when I'm stressing about my symptoms interfering with my life (going out to dinner, movies, etc.).

Another problem is that I am still very, very thin. I'm 5'7" and weigh in at 105 pounds. It is extremely difficult for me to gain weight but quite easy for me to lose it (I think I lost 10 pounds when I had the flu and ate chicken noodle soup/popsicles for two weeks). I've always had a fast metabolism, but my sister who was built like me when we were younger weighs about 130 now.

Other random symptoms: I frequently feel very full after eating a normal-sized meal. I also have frequent gas. My period started when I was 14 but it is still not completely regular. I get a lot of sores in my mouth. I feel tired in the afternoon even if I've had 7 hours of sleep the night before.

My theory is that food intolerance caused the initial digestive issues, and that the anxiety about my digestive issues brought on the IBS. A lot of what I've read about Celiac seems to make sense. Again, though, I'm hesitant to jump the gun and get too excited only to wind up disappointed. Should I ask my doctor about this even though my blood test was negative?

I don't mean to sound so excited about possibly having Celiac, but I just need an answer, a reason for all of the pain and all that I've had to miss over the last 8 years of my life. I'll be headed off to college this fall, and I'd go through any test, adopt any diet, if it meant that I wouldn't have to worry about going out to dinner with friends or a date and spending the second half of the night doubled over in the bathroom.

Thank you so much for your help.

[RiceGuy]

Welcome. I think you've come to the right place for some answers.

The symptoms you've outlined do track with Celiac Disease, so it wouldn't surprise me one bit if you are having reactions to gluten. Do keep in mind that the tests doctors rely on are often falsely negative. The gluten-free diet is really the best test, and regardless of anything else, if avoiding gluten help, then it makes sense to follow that path.

What happens when you eat something which is naturally gluten-free? Aside from traditional breads and things specifically made with wheat, barley, and/or rye, most decent foods do not contain gluten - it's really the processed foods which you'd have to be careful about. All vegetables, fruits, and most grains are gluten-free by nature. Same with plain meats. So, you shouldn't have any trouble eating a few meals which do not contain gluten, and if your reactions are noticeably less or don't occur, that would seem fairly conclusive.

However, if you continue with e gluten-free diet for more than a few days, it will begin to impact the accuracy of further tests. As antibodies diminish, they are more difficult to detect, and the small intestine should begin to heal as well, making a biopsy less accurate too. Therefore, if you feel the need to get an "official" diagnosis, the usual advice is to continue eating gluten until you've gotten all the tests you want done. Just keep in mind, that regardless of any tests, trying a gluten-free diet is a good idea, and it can't hurt you even if you aren't having reactions to gluten.

Many find a gluten-free diet to help tremendously, even when tests are negative. Others forgo testing, as the diet works for them, and they see no need to go through testing just to prove what they already know. Still others really want that official stamp from a doctor to tell them they can't eat gluten. The choice is yours.

Something else to consider, is that dairy is often a problem at first, as the body heals. Some eventually find that they can add it back into their diet without trouble, while others can not. Other top allergens should be on your radar as well, including soy, corn, nuts, eggs, etc. Many on this board (including myself) also find nightshades to be rather troublesome. These things can often improve if gluten is the root cause, and you maintain a gluten-free diet.

Lastly, I'd say the zoloft is ridiculous. With all the trouble your having, you'd be abnormal if your mood wasn't impacted! Also, "IBS" is basically a junk diagnosis, as it does nothing to explain the cause. Sure, your bowel is irritable, but what you want to know is WHY!

[lizabee]

Thank you for your reply. It's hard to say what happens when I eat something gluten-free because just about every meal seems to have gluten in it somewhere--bagel for breakfast, sandwich for lunch, roll with dinner, etc. I think I will stick to my usual diet for now, because I'm afraid that any major changes would cause me to lose more weight.

Is there a way to get tested for a bunch of food intolerances (like lactose, eggs, gluten, and so on) at once? I know that there's a difference between an intolerance and an allergy (though I'm not quite sure what it is), so I don't know if testing works the same way for both. That seems like the logical next step.

[diannalynn0711]

I couldnt help but continue reading your post. A lot of what your going through sounds like what I went through when I was growing up. I was always the smallest kid weight wise and I could never gain weight. I also had a lot of other problems that my celiac being wrongly diagnosed caused..... I've had celiac all my life, doctors just pawned it off as growing pains, seizures, IBS, depression, anxiety, etc... I was the over achiever and still am in college. When I was stressed out the most(exams) I would be really sick more than usual. The disease killed my grandmother and it almost killed me when I was 15. Not to scare you, but I'd definitely suggest a biopsy and to have the test run again. Im not sure where you are located, but Id suggest Mayo if you can get there or even Cleveland Clinic if that is closer. Both are more in tune with Celiac. Those tests as has been said can be false negative. For me it took them faced with my passing and my mother wigging out to run everything again and again and do everything possible and they found it.

The sores in your mouth could be linked to acid reflux... I have this and it often causes sores and pain in my stomach. Also lactose intolerance causes my stomach to be upset whenever I eat something. Yes with some people this does go away, but with me unfortunately the only thing that I had before that went away was my seizures. Everything else liked me too much apparently to go away.

I know what it is like to be in high school and go through something like this. I dealt with this throughout all my school years. It is stressing, but once I was diagnosed and they got me healthy again.... I was so happy to be alive and hey it isnt one of the worse things that could happen. It is a lot easier now days to have the disease than at first.

A lot of people that dont even have the disease find that the diet makes them feel better.

Sorry I babble a lot. I love to help out and that tends to lead to too much talking. Hope I helped some.

[RiceGuy]

Thank you for your reply. It's hard to say what happens when I eat something gluten-free because just about every meal seems to have gluten in it somewhere--bagel for breakfast, sandwich for lunch, roll with dinner, etc. I think I will stick to my usual diet for now, because I'm afraid that any major changes would cause me to lose more weight.

Do continue your current diet if pursuing tests, but never be afraid to try just because of your weight. The gluten-free diet may be the best thing you'll do for your entire body, including the weight issue.

Is there a way to get tested for a bunch of food intolerances (like lactose, eggs, gluten, and so on) at once? I know that there's a difference between an intolerance and an allergy (though I'm not quite sure what it is), so I don't know if testing works the same way for both. That seems like the logical next step.

You may want to look into Open Original Shared Link. Many report good experiences, and they claim better accuracy than standard tests.

Other than that, I'd think an allergist could help. Though perhaps not so much with determining intolerances and/or distinguishing them from allergies.

[GFinDC]

My understanding is the allergy skin tests can show a wheat reaction, but it doesn't indicate a gut reaction is present. Supposed to be a different antibodie "mechanism".

You can also try an elimination diet to detect food intolerances. There are different ways of doing them. There are quite a few threads here and on the net in general about elimination diets. You do need to stay on the gluten if you are going to be tested for antibodies though.