Am I Going Gluten-Free For Nothing?

[jnish83]

hello friends, I am so confused and frustrated now, as I have been for a year or more...

my current ailments: abdominal pain, gas, diarrhea, yellowish stool, vomiting bile/frothy mucous each morning, severe fatigue, nausea, sometimes feeling like Im going to have diarrhea but in fact am constipated, worsening sypmtoms with my menstrual, trouble waking in the wee hours of the morning in sweats

past ailments: migraines, severe allergies, easily catchs colds, treated for slight anemia twice, depression, anxiety, stress

what the docs have figured out (or not figured out) thus far:

neg stool samples for the usual suspects

seen in Emergency a few years back and had normal abd xrays

the only blood tests that came back slightly abnormal:

Gliadin IGA 5

Gliadin IGG 16

TT IGG: 1.07

TT IGA: 0.43

BIOPSY: "unremarkable villi structure with some inflammation seen"

So, last year in Sept 09, I started suffering with severe abdominal pains after eating even a bite of food. I had abnormal stools, mostly diarrhea. Once they got my weak positive blood tests, I waited a month later for my biopsy. During this month of waiting, I was barely able to eat any food, gluten or non. I had been warned not to change my diet before my biopsy so I was eating some gluten, when I was able to force anything down. My biopsy results finally came back, and they told me it was a negative for celiacs. THEY TOLD ME I HAD IBS AND GO HOME AND TAKE PRILOSEC.

My symptoms slowly abided, as did my weight, I dropped 40 lbs within 2 months because of the severity of my abdominal pain. After a while, I started eating as usual and was fine, until this July 2010, my symptoms returned. I went to my doctor and was put on several different acid reducing medications and IBS medications. My symptoms have continued to worsen, abd pain and diarrhea being the worse symptoms.

A few weeks ago, I go to my doctor yet again, and she checks last years biopsy results again and says "well they did note inflammation so maybe you should try to go gluten-free."

My first thought, "ARE YOU SERIOUS? Here you were warning me last year that celiacs causes destruction of the intestine and your GI doc tells me im negative, but here we are a year later saying um maybe you are still?" Doing some checking on my own, I have found according to many websites that IBS does NOT cause inflammation of the intestine...?

So I have been gluten free for 1 week now. I have to say that my abdominal pain and vomiting had subsided yet I am still having yellow runny stools... I will continue on my gluten-free diet until I figure something else out- possibly forever. But missing out on all the regular food has left me wondering:

"DO I REALLY HAVE CELIACS OR AM I GOING ON A LIFETIME DIET FOR NOTHING?"

oh and another interesting note: my lil (half) brother suffered many abdominal problems as a child, they tested him for celiacs but yet again, by the time they got him in for the test he had not been eating at all and the biopsy was negative. they wrote his symptoms off as a milk-protein allergy and he continued to suffer throughout childhood but now is semi-fine as a young adult, oh and I am very short and brother has problems keeping on weight

can anyone tell me what they think of this quasi-diagnosis??

[mushroom]

Any GI worth his/her salt should, upon negative test results, recommend that the patient try the gluten free diet anyway because there is a 20% false negative rate on the testing. Doctors like their scientific evidence but we as patients sometimes have to live in the fuzzy zone because it's what makes us feel better.

I would definitely give the gluten free (and lactose free) diet a good three month trial and see how you feel at the end of it. If no improvement whatever, then further exploration is called for. However, any improvement will show that you are reacting to what you eat. You just have to find out which things you are reacting to, because it may well be only gluten and possibly lactose, but could also well be other things as well.

By the way, IBS is a diagnosis of exclusion. If they can't come up with anything else, that's the label they stick on you

[sb2178]

Yeah, you need longer than a week. And you've already seen some improvement.

I also had weakly positive tests with a negative biopsy, but the diet made an enormous difference in quality of life.

[Takala]

Well, you could always wait for the autopsy....

Remember that one of the symptoms of celiac and gluten intolerance is brain fog or fuzz on the part of the sufferer, lack of wanting to change diet but this myth that the medical profession can somehow produce a medication to relieve the symptoms, and denial on the part of the medical profession that they keep misdiagnosing the majority of people they see with gluten intolerance and/or celiac.....

you won't miss out on the so called "regular" food once you figure out how sick it made you, and you learn to find, prepare, and eat the better stuff we have.

[aedixon]

Wow. I'm glad I found this thread. I feel a tiny bit better.

I have been gluten free (mostly, I think) for about a month now. I've dropped 10 pounds and feel pretty good for the most part.

y work folks love to have food around and go out to eat a lot, so maybe I've just taken too many chances in the name of being a team-player. I recently ate at Chuy's - some corn tortilla-based thingies and beans, rice, guacamole. Actually I've been subsisting on a lot of corn tortillas at home too. I've eaten off some gluten free menus, too, that I'm just not certain about. (Like Carraba's.)

When I was first sort of diagnosed with celiac, I immediately began to eat only sandwiches and Udis muffins, plain rice and veggies with just butter, and fruit, yogurt, coffee and usual beverages. I just didn't have a lot of food in the house at that point and I was overwhelmed with not knowing what I could eat. My digestive system was amazing for about that first week, but it's not been as good since then. Not as bad as before, but not as good as at first. So...

Do you think I'm having a corn or milk issue now?

Maybe I just should not eat anything outside of the house for awhile.

Have any thoughts on how exercise plays into how you feel??

I'll keep on keeping on. Maybe a few more months of stricter eating habits will show more improvement.

Thanks for your comments!