Not sure about my celiac diagnosis

Hey guys, I'm new here. I have been trying to figure out what is going on with me and I need some advice.

According to my birth records, I was on soy formula, and I spit up constantly as a baby. I was never put on any medications because unfortunately, my parents do not believe in doctors or medications.

I have had issues with reflux my entire life. I did not know what was wrong with me, I just ignored it. When I was around 5 years old, I started to develop problems with constipation and stomach cramps. I had a horrible diet to be honest, and I barely drank any fluids what so ever so the constipation part isn't too alarming.
I got stomach cramps constantly when I was a kid. Nothing really triggered them, it was random things. Sometimes it was a piece of candy, sometimes it was a milkshake. Sometimes it was god knows what. I don't have any known triggers to my stomach cramps.

As I grew older, I started having to use fiber power and dulcolax to keep myself regular. Any amount of water did nothing for my constipation. Nothing helped except that mixture.

I never had any growth issues, but when I was 18, I was told I had anemia. I've had it ever since.

Still to this day, anything could trigger my stomach cramps. If I were to sit down and drink a glass of milk, I would barf...but, on occasion, I can eat ice cream or yogurt...other times I couldn't. It is so confusing. I am now down to eating ramen and alfredo lean cuisines...

My doctor told me that she thinks I have celiac disease. Except...I don't get stomach cramps when I eat wheat...frankly, my stomach cramps are so ridiculous and all over the place that I don't know what triggers them. For example, when I was a child, I could eat McDonald's chicken nuggets but I could not eat store brand chicken nuggets. I cannot eat store brand pizzas. Something in the dough causes problems...but I have been able to eat delivery pizza.

I've been looking into gluten free, and to be honest, all food makes me nauseated at this point...no matter what it is. I get indigestion and nausea from anything. I have tried some of the gluten free products. I know it takes awhile to get the gluten out of my system but can I really have celiac disease if I don't have obvious stomach cramps after I eat gluten?

I was looking over the celiac disease symptoms on google, and the most obvious symptoms I have off the list are the stomach cramps, indigestion, gas, anemia, and I also have had teeth problems my entire life. My teeth rot very easily even though I take care of them. I've had two molars pulled due to rotting. My wisdom teeth have all developed holes in them and rotted to the core of the tooth. I take care of my teeth...I don't eat a lot of sugar. I've also always had issues with fatigue, and muscle pain.
I just don't know if I can actually have celiac disease if I don't actually have any triggers...my stomach cramps are so random.

Thanks for any advice.

Thank you, I appreciate the response but I don't have any obvious symptoms when I eat gluten. Like I mentioned before, I don't have any obvious trigger foods. One day I can have dairy creamer in my coffee the next day...I'll get nauseated and stomach cramps if I go anywhere near dairy.
The issue is, I have hyperthyroidism and the hot flashes/flush thing, I have that in general. Also, the general run down flu symptoms I have had since I was diagnosed with my thyroid condition. I have no idea if it's linked to celiac/gluten sensitivity. My thyroid condition has nothing to do with the GI thing, I actually developed it after I had heart failure in case you were wondering. I know I saw thyroid problems on the list.

Another thing I forgot to mention is...I have to eat, constantly. My stomach constantly has the hunger burn. When I say constantly, I mean...within 30 minutes after eating, even a big meal. The hunger isn't mild either, it end up getting hypoglycemia type of symptoms if I don't eat. I eat, and eat, but I also gain weight so it's obviously going somewhere. My stomach is really bloated and sore when I push on it too. My entire abdomen is sore to the touch. I have a really hard time losing weight, especially in the stomach area. I have a pot belly, but, I can kind of feel my intestines instead of a lot of fat. It feels like my intestines are pushing out of my stomach.

I am looking into the GI doctors, but at the moment, I'm broke and have 5 other conditions I'm having looked at. That's one of the reasons I'm here.
I keep trying to eat gluten free but honestly, the gluten free products make my stomach hurt worse than regular food...so I dunno. Maybe it's just because I haven't eaten the products before. New food is usually a big trigger for me.
My body needs to make up it's mind.

I've never been treated for worms, ever. I don't even know how I would get them. I barely eat any meat, although I have no idea if that's how you get them but seeing as how I've had this issue since I was a teenager, I have considered worms. The issue being the constant hunger.
I see my GP tomorrow and I'll ask for the blood test. Thank you :)

I don't have children, but I didn't think of people preparing food. I have eaten out a few times in the last few weeks.
Thanks! :) I've written it down on my paper and I'll update as soon as I can.

Catrena, it sounds like you are trying to self-diagnose based on a fuzzy history of stomach issues. Please go see a gastroenterologist and approach your concerns methodically. There are tests that can be done to eliminate or confirm a variety of diagnoses. You do not have a celiac diagnosis and maybe you never will. The people on this forum cannot diagnose you.

Your doctor cannot diagnose celiac disease without a biopsy of the upper gi tract. In your original post you wrote that "My doctor told me that she thinks I have celiac disease." That is not the same as a diagnosis.

First, I'm sorry you have had to deal with these issues for your entire life. I would recommend that you get tested to rule out/in Celiac for sure. Even if the test is negative, it does not mean that you do not have gluten sensitivity which would require the same treatment. I have a friend with diagnosed celiac who does not follow the diet. (I have given up trying to get her to do so) If she makes herself a sandwich at home with store bought bread, she vomits. But eating a sandwich at a deli, she does not have the same reaction. Some corn chips with wheat in them settle her stomach, but other things instantly make her sick, which is why I can't get her to take it seriously - inconsistent reactions. I was similar prior to my diagnosis. A single bite of pasta would instantly make me sick, but having something like a chicken sandwich would cause delayed reaction or even make me feel better for a time. (I assume the protein slowed down the digestion). Now, even a slight cross contamination produces instant reaction.

I also have other food intolerances: dairy (casein-not just lactose), soy, corn, grapeseed. These didn't become apparent until gluten was out of my system and I could feel symptoms from eating them. I had reduced myself to baked potatoes with butter, and was still in pain. Go figure, turned out the butter on my potato was making me sick and I was eating it twice a day and losing weight like crazy because I was too sick to eat anything else. I also have fructose malabsorption. This was diagnosed after a long time of everything I ate making me sick ( with being GF,DF,SF naturally I ate tons of fruits and veggies and was in serious pain and still sick - again making myself sick with "healthy food"), so I can relate to that feeling. I am also FODMAP sensitive. I deal with constipation as well. Miralax is my go to solution if I go too many days.

Food intolerance can be subject to quantity (load) which can explain why you can have a little one time, but get sick other time. A little butter might be okay, but have butter and a glass of milk, and sour cream on your baked potato and you could have a problem.

I would recommend cutting all dairy and if you can, request the celiac testing if your doctor suspects celiac. If she really thinks you are celiac, they should be willing to do the tests. But even with your inconsistent reactions, it is certainly possible. Even if it is negative, your food issues are real and gluten sensitivity is possible without celiac. There are also many other possible causes to be explored. It took an immunologist to find my fructose malabsorption when my traditional doctor had just shrugged at all the pain I was in.

I agree with Caligirl that quantity may have something to do with feeling bad after  a meal.  I really need will power to cut down to very small meals but I confess I get really hungry at meal times so it is difficult to cut down.  However, remembering Caligirl's suggestions, I will make a greater effort.

With regard to the other posters, on fruit and non-gluten items that affect you adversely, how do you find food enough to eat?  Also, reference lactose intolerance, milk apparently has more protein than most substitutes...example, rice milk only 1 gram protein per 8 oz verus dairy milk 8 grams protein.  (I don't eat a lot of meat sometimes and therefore don't get but about 15 grams of protein a day which is not enough.)  These digestive problems are so puzzling. I think I only feel good about 50% of the time. 

In reading the replies to the original question I am struck by several things: treating MD's diagnostic prowess as good when in fact the ability of MD's to diagnose Celiac Disease is horrible; generally ignoring the hyperthyroid condition that seems obvious; and the consistent overuse of meds that can contribute or in fact be the cause of all/most symptoms.
I have been diagnosed for over 26 years and what I have found is that newly diagnosed Celiacs are among the worst at giving advice about the condition. That is not to say that ALL long term celiacs have answers but the chances become better with long term
Celiacs that continue to research and find practical work-arounds in day to day living.
Wheat/gluten is rather recent as an addition to the human diet and as such should be considered questionable as a useful human food. That MD's should be given gatekeeper status as diagnosticians for CD is stupid ~ their formal education in the area is less than one day as is their education in diet. Remember that Big Pharma runs the game and there is no upside to telling a patient that they need to be on a Gluten Free diet ~ FOREVER. No, a diagnosis of IBS or Croen's Disease or some other Gluten induced problem will be treated with drugs and surgery which keeps the patient coming back for more of Big Pharma's stuff. The very idea that one would eat a dangerous diet to confirm what is self-evident is beyond stupid ~ but MD's do it all the time.
After going to an MD with specific complaints the AVERAGE time to diagnosis is 12 Years, and this is for a condition that is now recognized as having a prevalence of >1% of the population.
No, take the MD's out of the loop ~ they offer nothing and can be a source of terrible mis-diagnosis.

Post Edited (frazere) : 10/20/2013 1:08:58 PM (GMT-6)