I'm Scared I Might Have Celiac.... (Help Me!)

[DanielleS]

I have been in severe pain for weeks. The doctors don't seem to know what's wrong....I've been researching Celiacs and it sounds like I could have it. Does this sound like Celiac?:

I am a junior in college and have never experienced anything like this until a little over a month ago. I started just getting severe pain (like a sharp stabbing) in my upper stomach after I ate. I also felt very nauseous after eating and wanted to throw up. I have also lost 20 pounds and am now considered underweight. I have been trying to gain weight and I haven't been able to. I went to my college health center, and they said it was gastritis, due to stress, and gave me Prilosec and Carafate to help with stomach acidity. They recommended I take the medicine and take it easy (which I did; I literally did nothing but lay around.) A week later, the pains stopped being just after I ate and started being more persistent....like they stayed with me the whole day. It also stopped being just in my upper stomach and moved to my whole stomach-ribs, upper, middle, lower). The nausea continued. The pain moved to my back, and I noticed I was getting more headaches. The pain wasn't just a sharp stabbing anymore...but sometimes it's like a churning or rumbling. While the pain was with me from the time I woke up til the time I went to bed, I noticed it did get worse after eating. I went back to the health center because the medicine didn't seem to be helping at all after a week and a half, and they suspected it was my gallbladder. So I had an ultrasound, but the results came back negative.

I went back a week later because I will still in so much pain, and the medicine didn't seem to be helping at all, even though I had been taking it continously for over two weeks. I then made an appointment with the gastroenterologist. The first visit, they didn't seem to really have a diagnosis, but said they wanted to perform an upper endoscopy. So I had the upper endoscopy and bloodwork done and was diagnosed with chronic gastritis and candida esophagitis, or yeast infection of the esophagus. So they gave me medication (Diflucan) for that. They said everything else came back fairly normal except for a little acid reflux, and now they want to perform another test to see if it's my gallbladder.

A week and a half later, still taking all 3 medications as I should, and have followed the Dr's instructions to avoid caffeine, acidic foods, chocolate, fatty and fried foods, and not to lay down right after eating, and I feel worse. My symptoms are:

-headaches

-nausea

-back pain

-sharp stomach pains

-stomach rumbling/churning

- heartburn

-gas

-itching

-inablility to gain weight

All usually after eating. I have been trying to figure out if certain foods trigger it, and have noticed the last few times over the past week that I have had severe pain I had just eaten cereal, a burrito, a snack wrap from McDonalds, and biscuits and cornbread from Cracker Barrel. At Cracker Barrel for lunch yesterday, I had a vegetable plate (all vegetables) and then a biscuit and cornbread. I was feeling fine until the biscuit and cornbread. I then got heartburn, a headache, severe nausea, gas, and bad stomach pains (stabbing, churning, and felt kinda like there was a brick stuck in it). This continued for the rest of the day. At night, I almost threw up and couldn't go to sleep because of the pain. When I had slept for 2 hours, I woke up to this intense itching all over my body, head to toe. No rash, just itching. I still feel nauseous and my stomach hurts, although not as bad.

What do you think.... Does it sound like Celiac? Or could it really be my gallbladder?

Family history:

Mom:IBS

Aunt: Diverticulosis

Grandmother: unexplained stomach pain last summer that finally went away

Please help me...I can't take this pain anymore. It seems to be a guessing game for the Doctors.

[ruca55]

could be both. I just had my gallbladder out last month, I had many of those symptom almost all of the time. After my surgery, I seemed to have some of them some times. I suspect it is also food related / celiac. I had my endo on Monday. If they test your gallbladder, ask for a hida scan, not just an ultra sound. If they had done an ultra sound on me it wouldn't have shown any stones. The hida scan shows function, I was only at 9%. I had a "mini - run" of gluten free after my surgey, as my appetite increased and I started adding food back in, I was able to link symptoms to what I was eating. Today is only my second day of gluten free, but noticing small improvement already. Regardless of biopsy results I personally will be staying gluten free.

[GFinDC]

It could be celiac, or gluten intolerance, or a wheat allergy for that matter. Could be something else too. Did the GI take biopsy samples during the endoscopy? They can examine them under a microscope to look for villi damage.

There are also blood antibodie tests they can do to help identify celiac. None of the testing for celiac is reliable if you are not eating gluten. So stay on it until testing is complete if you want a diagnosis.

If you don't need a diagnosis then you could go ahead and try going gluten-free and see if it helps.

[DanielleS]

Thanks. I am scheduling a hida scan for early next week. When they did the endo, this is what the Dr said (on the piece of paper he gave me after):

Impressions:

-Duodenal mucosal changes, suspicious for celiac disease. This was biopsied.

-Chronic gastritis. This was biopsied.

-Mildly severe monilial esophagitis. This was biopsied.

When I called earlier today and spoke with the nurse, all she said was that all of my results came back relatively normal, except that it was noticed I had a little acid reflux and esophagitis.

Suppose my gallbladder is not fully functioning and I have it out. I am just scared that that is not the primary cause of my pain and that it will be pointless and I will still hurt. Is it possible that I have a gluten intolerance even though the tests were negative?

[IrishHeart]

Thanks. I am scheduling a hida scan for early next week. When they did the endo, this is what the Dr said (on the piece of paper he gave me after):

Impressions:

-Duodenal mucosal changes, suspicious for celiac disease. This was biopsied.

-Chronic gastritis. This was biopsied.

-Mildly severe monilial esophagitis. This was biopsied.

When I called earlier today and spoke with the nurse, all she said was that all of my results came back relatively normal, except that it was noticed I had a little acid reflux and esophagitis.

Suppose my gallbladder is not fully functioning and I have it out. I am just scared that that is not the primary cause of my pain and that it will be pointless and I will still hurt. Is it possible that I have a gluten intolerance even though the tests were negative?

My trouble all started with my gall bladder (25 years ago). Impaired gall bladder function is associated with celiac disease and at least the doctor was bright enough to do the biopsy.

A yeast infection of the GI tract--also celiac disease related.

Biopsies are considered the "gold standard" for diagnosing celiac disease, but people often report that they have a negative biopsy and it turns out later, people have celiac disease after all. It can "trigger" at any time if you have the genes for it.

You sound like me---prilosec and carafate--and told I had "irritable bowel syndrome" and acid reflux....

Did they order a celiac blood panel? That may help clarify things (although mine was NEG--that also happens a lot, I am afraid) YET I have the genes for it. I had a bugger of a time getting diagnosed.

You could try a gluten-free diet and see. Sounds like you would feel better on it for sure!

[Goof]

Absolutely you can have a gluten intolerance without true Celiac. That's what I seem to have. Had many of the symptoms you have (abdominal pain, fatigue, weight loss). Had the endoscopy done, biopsy for Celiac came back normal. But before I got the results back, because I was so miserable, I tried going gluten free on my own. The difference is night and day. All the symptoms are pretty much gone, and the weight is (slowly) coming back on.

The way my doctor explained it is that since Celiac is genetic, and involves more than one gene, that it is possible you only have one or some of genes needed for true Celiac. So you what you get is partial Celiac, or a gluten intolerance. (Please feel free to correct if I'm wrong!!)

And don't be scared. If it is Celiac, it's very treatable, simply by diet. Yes, it can be tough, but you're not stuck taking drugs the rest of your life. And the difference is dramatic. I actually eat healthier now then I ever have, because I don't do fast food or a lot of junk anymore. (NOT perfect, though, by any means!)

[mushroom]

-Duodenal mucosal changes, suspicious for celiac disease. This was biopsied.

You have been having symptoms for only a month. You have probably not yet done enough damage to your small intestine to get anything more definitive than this in your biopsy. I agree that you need the antibody blood tests also and then, regardless of the results, you need to try eating gluten free and see if it makes a difference, regardless of what eventuates with our gallbaldder. And gallbladder and celiac symptoms seem to follow each other around

[Pam.Jung]

Hi, my name is Pam and I'm reaching out to the Celiac community for help.

I had my endoscopy in 10/11 and results showed mildy severe monilial esophagitis, erosive gastropathy, single gastric polyp that was removed, and suspected Candida esophagitis. Normal duodenum, so negative for Celiac. I have an extensive list of food allergies: wheat, soy, corn, nuts. Can not tolerate dairy or grains. My symptoms include: excessive gas and bloating with few bites of food, chronic fatigue, intense sugar cravings, brain fog, memory loss, depression, and joint pain. Can anyone help, being gluten-free is not enough.

Thank you.

[beachbirdie]

Hi, my name is Pam and I'm reaching out to the Celiac community for help.

I had my endoscopy in 10/11 and results showed mildy severe monilial esophagitis, erosive gastropathy, single gastric polyp that was removed, and suspected Candida esophagitis. Normal duodenum, so negative for Celiac. I have an extensive list of food allergies: wheat, soy, corn, nuts. Can not tolerate dairy or grains. My symptoms include: excessive gas and bloating with few bites of food, chronic fatigue, intense sugar cravings, brain fog, memory loss, depression, and joint pain. Can anyone help, being gluten-free is not enough.

Thank you.

Hi Pam, and welcome to the forum. To give you a short answer, you might look into the Open Original Shared Link or the Open Original Shared Link ("Gut and Psychology Syndrome") diet. They have helped many people for whom gluten-free is not sufficient. They are challenging diets, but really good ones. If you've had overgrowth of candida, it could really help you a lot because these diets remove the substances that feed the fungus.

Next, and please don't think I'm being picky, I'm just trying to make sure you get more exposure to your question and get better help from other forum members; try starting a new topic under the pre-diagnosis heading rather than by replying to someone else's thread. More folks are likely to see it and give better answers. Or, message one of the moderators and have them move your post; more people will be able to give you good advice!