Celiac Or Non-allergic Pasta Intolerance?

[ExPastaQueen]

Hi everyone,

I'm new around here. My story is a little long, so I hope you will bear with me; I'll try to summarize.

I'm 30 years old and female. All my life, I've had a sensitive stomach. I'd frequently have stomach pains, especially after eating large pasta meals, which I frequently did because I love pasta, but if I lay down for a few minutes, the pain usually resolved. Since my early 20s, I had some symptoms of what I thought might be IBS--alternating mild constipation with bloating and mild diarrhea, all of which improved after using the toilet. However, I never got it diagnosed because I had no intention of going on permanent meds.

About a month ago, I noticed that my stomach was severely bloated to the point that I couldn't fit in my pants. I had a tremendous sense of pressure and lots of gurgling and gargling. My abdomen was so swollen that it was hard to walk without getting breathless. Although I could move my bowels without any problems, I didn't find any relief from that. After several weeks of this, I saw my GP, and after an ultrasound ruled out ovarian cancer, she referred me to a gastroenterologist.

While I was waiting to see the gastro, I began looking into my symptoms, and Celiac kept turning up. To see if I could find some relief, I stuck to only fruits, vegetables, meat, and dairy for a few days. I continued to be severely bloated during this time but was aware that it can take awhile for gluten-related bloating to diminish. When I went to see the gastro, she immediately suggested Celiac and had my blood drawn that day even though I had told her that my diet hadn't included gluten products for a couple of days. She also gave me a laxative powder to try since her other suspicion was that I might have trapped air in my large intestine.

Over the next week, I faithfully took the laxative but saw no improvement in the terrible bloating. There was less pressure and gurgling, but I still couldn't fit in my pants because my abdomen was so distended. The distension was always most severe after eating and least severe when waking in the morning. During this time, I experimented to see how I would react to different foods and found that I had a particularly awful reaction to pasta, both wheat-based and corn-based. However, I responded a lot better to pasta that was rice-based.

The Celiac test came back negative. I asked the nurse who called me what percentage of negatives were false, and she assured me that a false negative was highly unlikely. At that time, I didn't know what else in the results might be significant, but from reading here, I see that anemia, B12 deficiency, and iron deficiency are red flags. My RBC and MPV were slightly below normal, but the doctor said nothing about that. Hemoglobin was on the lower end of normal, and hematocrit was on the very low end of normal. When I compared my current blood work to blood work from last year for an unrelated problem, I noticed that last year's RBC and MPV were below normal, too. Hemoglobin last year was barely normal, and hematocrit was below normal. The current test didn't check my iron or B12, but last year's test checked B12, and the result was 440--in the normal range, but on the lower end. My doctors have always said that these results were "fine."

When I had my follow-up with the gastro, she seemed to have totally dismissed Celiac as a possibility. I told her about my observations with pasta, and she took note of that but didn't say anything else about it. Then she said she didn't want to do an endoscopy because it was a highly specific test whereas she thought my problem was more "global." So she referred me for a CT scan. She appeared to be looking for air or solids trapped in the intestine.

While waiting for the CT scan, I noticed that my bloating was improving more and more. I had not had wheat- or corn-based pasta at this point for over a week, and although my stomach wasn't 100% flat, it was a lot better. During this time, I was also eating a little gluten (cookies, crackers), but I didn't respond horribly to those like I had to the pasta. Since my bloating was nearly gone, I started to wonder if there was going to be anything for the CT scan to pick up, so I decided to try wheat-based pasta again and see what would happen. Bingo! I bloated right back up again. The CT scan is scheduled for tomorrow, but I wonder if they can find anything significant from that if what I have is a food allergy or intolerance.

Does anyone think I could have Celiac even though the test was negative and I seem to be able to eat some gluten-based foods without obvious trouble? What might it say that I can't eat either wheat-based OR corn-based pasta without a reaction but have less trouble with rice-based pasta? What in pasta could cause a reaction if not gluten? Finally, what kinds of tests should I be pushing for? Is there anything else in my blood work that I should be looking for? Am I right in thinking that a CT scan probably isn't going to pick up results of a food allergy or intolerance?

Thanks so much to anyone who might have some insight!

[momxyz]

I believe you are right, the CT scan will show solid material or trapped air, but will do nothing to rule in or rule out an intolerance. But, ruling out solids or air that shouldn't be there would be valueable.

I will let others more experienced speak to the testing algorithms. Just want to add that it would be very possible to be gluten intolerant and also intolerant to corn. (I have a friend who is a self diagnosed Celiac that can't eat corn or corn products) But she can enjoy rice pastas...

[ExPastaQueen]

Thanks for your reply, momxyz. I just wanted to update this for anyone who might've read it.

I followed through with the CT scan, and low and behold, it showed that my stomach was seriously enlarged and not digesting food properly. An endoscopy didn't show any signs of Celiac, and I was diagnosed with gastroparesis, a condition in which the stomach stops functioning properly.

I thought I would post this as a reminder that sometimes the problem is something we never would've thought of or known about ourselves if we didn't follow through with testing and remain open to possibilities that we can't self-diagnose. I was really leaning toward Celiac or a pasta intolerance, and here the problem was something drastically different. Just wanted to encourage everyone to pursue your GI problems and not just assume that you can figure out what's wrong on your own because it could end up being something more serious than you thought.

[GFinDC]

Welcome to the site exPastaQueen.

Talking to your doc is good advice Pastaqueen. You might want to try a search on this forum for gastroparesis also. There are several people here who have had that condition. Actually there are a whole host of related conditions to celiac disease. One of them is an autoimmune diesease of the stomach lining, although I forget the name of it. I am pretty sure I remember it can cause gastroparesis.

Your doc might be off on the false negatives. Some tests are pretty accurate on the posistive side, but false negatives are possible too. There is an article on the main forum page about testing and the reliblility of the various tests.

Interpretation of Celiac Disease Blood Test Results

When you read some of the threads here, you see there are other people whose docs told them they didn't have celiac disease, based on test results. Some times people go on to find they do have celiac disease. Sometimes they find they have gluten intolerance. Sometimes it is something totally unrelated too. Some people do an elimination diet to learn about possible food intolerances that might be bothering them.

Anyhow, welcome again and I hope yuo stick around and share your findings with us.