please help,i need advise

[celiac?]

Hello,
I've only recently stumbled upon the gluten free diet. I need some help from those of you who really know about it. I have not been medically diagnosed but I have been trying out the diet for about a month and I feel better already. After reading some other testimonials and seeing what others symptoms are, I'm starting to wonder if everything has pointed to celiacs my whole life. Let me give you a little background:

I am only 19 years old. For as long as I can remember, I have always had "stomach problems". I would call my mom commonly a few times a week from school to come pick me up because my stomach was always hurting. I missed a lot of school because of it and we always figured I was just sensitive. I have been to more doctors and nutritionists and allergy specialists than I can count on both hands and all of the tests I've had have come back inconclusive. After being to a few nutritionists, I had been told that I was lactose intolerant. This didn't make sense because I can drink a whole glass of milk and feel fine, but ice cream and creamy things do really hurt me. After that was ruled out, they told me I had candida, which is a sensitivity to sugar. I took pills for a while and it didn't make anything better, Then the nutritionist told me that I was developing an ulcer. It is ten years later and I have no ulcer. My doctors never really helped me much when I was younger figuring I was being a hyperchondriac and that I would grow out of it. Another little bit of info from when I was young, I had tonsilitis literally just about every other week, and every time the doctors gave me penicilin. I was also once told by a doctor that I had ruined the protective lining of my stomach by killing the good bacteria with anitbiotics. This confused me as I was sure it would grow back. I also had asthma as a kid and was a chubby child.

After a few years of the same thing over and over and a move across the country, a new doctor starting doing more tests on me. I was tested for kidney stones, as I have hematuria, negative, irritable bowel syndrome.. negative, lactose intolerance...AGAIN... negative. This sounds a bit strange but when I hit puberty, and my periods started, everything was normal for a few years, then it went wonky. I ended up having my period for 8 weeks straight, that was eight weeks of straight bleeding. Obviously I ended up being slightly anemic for loosing so much blood. I have been on birth control pills to regulate it for the past 4 years and all is well there. I also have had my tonsils removed so my throat problems are now non-existent. About four months ago, the pain in my lower abdomin was so bad I was i the emergency room for 3 days because they  thought I had appendicitis, after so many tests and days in the hospital, they blamed it on a lymphnode infection and sent me home. I also have a "rash" on my underarms that it took my doctor four different visits to diagnose as excema and the cream I have doesnt really help.

I have always suffered from random bouts of chronic diarrhea that just about always have fully undigested bits of food. I'm not talking corn like everyone has but full mushrooms and chicken and spinach. After eating anything, I just about always get bloated and gassy and at times look like I could be 5 months pregnant, and believe me you dont want to look like that when your 19. I am always holding my stomach in after a meal. I have also always struggled with my weight. I am not very big but just at the upper end of healthy, however being a teenage girl, we all try to loose weight at some point and no matter how healthy I was eating, and how much I was running, I couldn't loose weight. I also loose a lot of hair everyday, especially when I started working out regularly like I do. I have a lot of hair and it is thick and curly but a lot of it comes out when I am in the shower or simply running my fingers through my hair. I know everyone does but I seem to loose a lot and it makes me curious. I also was a gymnast for quite a while and had to quit 4 years ago due to a hip injury. They say that I have done irreparable damage to my soft tissue. I can't run well on concrete anymore and I will at times wake up with such bad pain in my hip that I cannot walk without limping. This isn't normal for a 19 year old, at this rate I will need a hip replacement by 40 years old.

After only about amonth of being on a gluten free diet, I already feel better. My movements are more normal and i dont have to be afraid of eating at work like i was before knowing I would be gassy and uncomfortable. Just the other day I ate a cookie that was made of spelt flour and it sent me runnign for the bathroom a half hour later.

I just want some advice, I know that a lot of how you feel is psycological and I just don't want to be going through all this if I don't have celiacs but have simply convinced myself in my head that thats what it is. I have been through enough health wise and I would really like an answer.  I have never been tested for celiacs and there is no one in my direct relation that is celiac. I have trouble with going to the doctor for this because I've already wasted so much time with doctors just have no answers and to be told that I am a hyperchondriac. I think that celiacs is the answer judging by what I have read and also by how I have been feeling after adjusting my diet.

PLEASE someone who knows what they're talking about...please tell me what you think. I need help

[the sensible celiac]

I think everything you have said is consistent with the possibility that you have celiac disease.  Spelt is not a gluten-free grain, Spelt is an ancient variant of wheat and it absolutely does contain gluten.

Since you have been on a gluten free diet for a month your blood would likely test negative for celiac disease.  The antigens found in the bloodstream of a person with celiac disease are only present when they have been eating gluten.

The classic method of diagnosing celiac disease is by way of a biopsy of small intestine tissue obtained during an endoscopy.  It is possible but not certain that after a month on a GF diet your villi would still show enough damage for a diagnosis.

There are also DNA tests now that will not establish that you *have* celiac disease but they might find that you have the genetic disposition to develop it.

The fact that nobody in your family has been diagnosed with celiac disease is a red herring.  Nobody in my family had been diagnosed with it either before I was, then later it was discovered that my daughter definitely has it too, and I believe it was a factor in my mother's death from stomach cancer.

If you do have celiac disease it is very important to have it diagnosed. This is because then you would know that you absolutely must stay on a strict gluten free diet for the rest of your life.  If you do have celiac disease and you don't adopt a gluten-free diet it is very likely you will develop other health problems, a few of which can be fatal.

I suggest you get a referral to a gastroenterologist, give her or him your history in detail as you have done here, then emphasize the fact that your symptoms go into remission when you eat a GF diet.  She or he will know what to do, given these facts.  It is likely that you will be asked to go back to eating gluten again for a period of time so that a diagnosis can be made.

You certainly do not seem like a hypochondriac to me, I think you are clever to have figured out as mch as you have at your relatively young age.

Be persistent, be firm, pursue this aggressively.  Chances are you will be glad later that you did.  Please keep us posted on your progress, it may help others in the future, and we want to help you too.

[celiac?]

Thank you so much for your help, I do have an appointment with my doctor next week but I do not like her, she makes me feel like a fool for asking questions like I do so I think I will simply ask her for a referral instead of asking her to do the tests. Thanks again, I'll let you know what happens....do you suggest that I start eating gluten again now to make sure that the tests run properly? or wait to see what they say?

[the sensible celiac]

....do you suggest that I start eating gluten again now to make sure that the tests run properly? or wait to see what they say?

If I were in your situation I think I would want to stay on the GF diet until told to do otherwise.

And maybe try to get your doctor or the GI doctor to talk about the DNA tests which would possibly rule out celiac disease if it is found you have none of the genetic variants that make it possible.

Good luck!