Does This Sound Like Celiac?

[bellybattle]

Hi everyone!

I'm new here. I've found many of your postings very helpful and everyone here seems so nice and knowledgable. I do have a question though if anyone can help me:

Last October I was diagnosed with IBS-D (mostly anxiety related). I never could relate any particular food to my symptoms. I've been taking Lomotil and Immodium and they have helped a lot (although they tend to back me up sometimes). I've also tried Bentyl, Levsin, and Ativan, been none of those seemed to help.

However, over the last 3 months or so, I've been experiencing severe nausea, abdominal distention, and plain old bad stomachaches. I just had my first appointment today with the gastroenterologist and he thinks I may have Celiac disease due to my waste having a lot of mucus and a yellow-orange color. He was also concerned that I have lost about 10 lbs. in the past few months. Now I only weigh 94 pounds and I'm 5'4. I have to have more blood and stool test done to find out for sure.

Anyways, I've been doing a lot of research. Some of my symptoms makes sense while others don't. When I do have D, it normally seems like an anxiety issue to me - never really food related. However, when I get the nausea and bloating, it often happens right after I eat. It is almost like I ate a huge meal when I have really only eaten a snack! Does this sound like Celiac disease to anyone? I have tried a generic form of Caltrate Plus in recent weeks and have had a horrible time with stomach pain after only taking a half a pill. I read the ingredients and noticed that one of the last ones listed was Gluten. Maybe I do have Celiac disease, but sometimes the symptoms don't really add up. If I did have Celiac, wouldn't I have really bad D right after I eat? Any thoughts? Sorry this was so long, I'm just really confused and frustrated. Thanks everyone!

[KaitiUSA]

Sounds like a definite possibility of celiac. You should get a complete blood panel done(while still eating gluten)

You do not have to have any symptoms at all with celiac. Some people get none at all. There are over 200 symptoms with celiac though and everyone gets different ones. You do not need to have anything in particular. I never got "d" with celiac...I had nausea and anxiety bad with some weight loss and then quite a few other ones that were not as severe.

Some people get constipation instead too...so never rule anything with celiac based on symptoms alone.

[Pegster]

I would never had believed I had celiac disease if I hadn't had a skin biopsy which was positive (for DH whcih means I have celiac disease.) I had eaten gluten all my life and NEVER DREAMED I had a sensitivity to wheat, etc. In fact, if I had stomach problems I always ate BREAD to make me feel better (oops!) ! So yes, your symptoms could easily be celiac disease. Everyone is different and there is an enormous list of symptoms which can be caused by celiac disease.

[bellybattle]

Thanks ladies for your help! I guess I'll just have to wait and see for the results to come back. I wish I didn't have to wait so long!

[Lisa]

I, most likely have had celiac disease all my life. I am now 51 and just now diagnosed. I have had digestive issues for as long as I remember.........but it took a period of high stress to kick in the severe symptoms. At that point, at my insistance, my GP sent me to a Gastro DR. and had the endoscopy exam and biopsy. The results were a poss. for celiac.

This seems to be a mystic disease. You can be non-symptomatic (sp?) for many years.........but when it kicks in it really kicks in. Thats when the diognosis becomes clear for yourself and most doctors. But unfortunally, by that time some damage has occured.

I have recently explained to some of my friends that it is like a car in neutral on a hill, in front of a cliff. The car inches each day toward the cliff. The car is still good but still inching toward the cliff.... it get closer and closer, car is still good.

Then one day That Car falls over.... Well, maybe a little dramatic. But celiac disease usually takes a catalist to rare it's head.

But on the better half of this dreary tale. You will know what you are dealing with. It is not a life sentence and you have the power to "heal" yourself. It is not a cancer that you have no control of. You have the power within yourself.

You will have a wonderful life ahead of you, with or course a controled diet, but be thankful that your future is in YOUR hands.

Many people here will get you started toward a Gluten Free diet and as they have said to me "no question is unanswered".

We are all here for you. Ask away.............

G-mail me if you wish, but those on this site are very knowlegable.

Good luck and we will be with you as you process though, as call it Celiacland.

Lisa B

[bellybattle]

Lisa -

Thanks, I needed to hear that! If this is what I really have, I can be thankful to know that I can help make myself feel better instead of thinking, "what's wrong with me?". It's weird, I just got married a month ago, and these symptoms started getting worse during all of the wedding planning. The wedding is over now, but I still have the symptoms. I think you are right with contributing stress to this disease. Thanks again for your help!

[Rachel--24]

I never even had diarreah and rarely have tummy aches either. There are so many symptoms and nobody seems to be exactly alike. I had bloating and constipation yet somehow I lost 25 lbs in 6 months. I ended up at 94 lbs. without ever having diarreah. The only time I got D was after going out to eat...that happened a few times but it was nothing that I would have even mentioned to the doctor. I had a ton of symtoms and the most insignificant ones to me were the GI symtoms...they paled in comparison to what was going on everywhere else in my body. I think I remember reading that constipation is actually more common than diarreah in celiacs. I think the description of Celiac really needs to be updated because alot of doctors still think that a celiac patient is rail thin with a distended belly and diarreah.

[Lisa]

I am guessing that you are now in Celiacland. Sorry to say, there is no going back. You are there now, if in fact you have celiac disease.

I can pin-prick the time and the situation that my stress was way beyond what it shoud be. I am in public service and one particular instance put me over the cliff.

I am planning a wedding for my youngest daughter , so weddings, I can realize the stress. Stress can play a major mind/body meltdown for your system.

I don't remember if you have had a blood testing or any other test of celiac disease. But I do want to advise you not to try the gluten free diet before you are tested. It will show neg. in the blood work and endoscopy (if you choose that) will not show the true results.

If your intent is to be tested, stay on your normal diet (not gluten free). Eat what you usually do before testing.

If you choose not be be tested. You may go on a gluten-free diet. If you try it for a month or so, and you feel better......perhaps you have celiac disease. Some times it takes months to heal the "villi" that have been damaged in your small intestines.

If you need the exact blood work needed to be tested I will send that to you. The endoscopy test/biopsy is the "gold standard" to a true diognosis. It is costly, unless you have good insurance.

Keep in touch.

PS I will be 51 on October 26.....over the hill, but barely.

I would certainly recommend a DR. that has knowlege of Celaic Disease or a Gastro Dr.