PurpleMonkey

Are you seeing a dietician? I would add a dietician to your life being as all the strictness of gluten free and paleo diets. Just a suggestion, they can help you diagnose vitamin deficiencies along with other issues due to strict diets.

These are symptoms of ataxia, dear. It's a neurological condition that goes along with celiac. Cheer up, once you stick to the diet strictly, it starts to go away, as long as you are careful and diligent, and secondly, it's the best motivator I've ever had to stay on a gluten free diet. Sometimes this means we are really sensitive to cross contamination, so you may want to start your journey by avoiding as much processed food as possible. And DO supplement with those gluten free B complex vitamins (which you can find in most stores) ! "Normal" people may not need them, but we do. Nutritionists may try to tell you to eat like a typical person, but gluten free.... which will include a lot of cereal and grain products, some of us just cannot do that, at all, because we do not react to carbohydrates the same way, so be wary if you sub in the usual gluten free versions of processed foods and don't improve.

Also, most of us start out by being lactose intolerant, because the part of the intestine damaged by the auto immune reaction is also the part which works to digest milk. This means that you may only be able to handle non lactose dairy products (properly processed high quality yogurt, or aged cheese, or butter) at first, or you may have to temporarily skip dairy for a while, then add the non lactose versions in later, and see if you can tolerate it. You know the current "low- fat" diet craze that claims milk fat leads to obesity ? This actually does not work for us, because skim milk has a lot of the lactose (milk sugar) and the high fat cream, which butter is made out of, does not. There is another subset of people who cannot handle any dairy, at all, because they are reacting to the cow milk protein, casein, so they end up using dairy substitutes. The third common culprit that a lot of celiacs react to is soy flour and soy proteins (sometimes trace soy oil is tolerable). I am putting this information out there now, so you will be aware of what your options are for further adjusting your diet. Also, hold off on gluten free oats until you get the rest of it under control, some of us react to them anyway, and it's best that they not be introduced and tested at first, so you can see what your reaction is, when you are healthier.

Are you taking any over the counter forms of acid reflux inhibitors ? That made it worse for me, oddly enough.

Also, No ma'am... The GI doctor tried giving me something, I took it for 2 days and stopped. I can't remember to take pills and I don't even feel like I have acid reflux or heart burn or anything like that so I haven't even cared to take them.

JerseyAngel & rosetapper23: Thank you so so much! Your comments had me giggling. I just can't believe he could be so closed minded on a subject like this. Even if I was 400lbs who cares, that's no reason to say even though my tests were blatantly POSITIVE that it was not my case. That's like saying men cannot get breast cancer. It would be so much easier to get used to this if I didn't have people telling me "it's just food, you can eat it if you want" My grandmother is the only one who has done research and realizes I'm not crazy or making up the pain, so to speak. And she sticks up for me quite a bit. Luckily.

Takala: The "normal people" thing cracked me up. I keep hearing about the dairy thing but i didn't fully understand the reasoning of taking it out in the beginning. Thank you for all the help I will definitely see if any of these things effect me.

I have tried staying far away from gluten for about a week now. I had crackers in my salad (my grandmother says these were gluten free), and I have had Cocoa Pebbles Cereal for breakfast and the milk didn't seem to bother me. I DID however today, I grabbed a slice of pizza without thinking and ate half of it. I've regret it all day, been in and out of the bathroom either puking or other.... I feel stupid, but I guess it's not completely registered to me that I cannot have the things I'm used to.

I saw my doctor on the 28th. All he said to me was "you tested positive for Celiac but I don't believe it being as the typical Celiac is severely underweight and you aren't".... I gained about 70 lbs when I has my daughter in 09. Since August I have lost 40 lbs without even trying. Luckily since my tests came out positive he is actually still treating me with the diagnosis. I have been referred to a Dietitian/Nutritionist, and she will be doing my nutritional blood work at the appointment next week and also give me vitamins. This process just seems like it's taking forever and more and more symptoms are popping up. I guess it could be worse though.

The technical name for dizziness or lightheadedness immediately on standing is orthostatic hypotension. (When you stand up quickly, the body doesn't adjust blood pressure quickly enough and your brain literally gets too little blood for a short period of time.)

Many things contribute to it, so investigating underlying conditions/states is good. Vitamin deficiencies, vascular problems, or just straight dehydration can contribute. But know that it is not unusual for nothing to be really wrong and some people are simply more likely to experience this. (I'm one of them.)

It's not just when I stand up, I'm continually dizzy.