Celiac Disease And Gluten Intolerance

[stephharjo]

I have suffered all my life with stomach issues but since about 2005 I have had really bad digestive problems that have intensified immensely. I have suffered through the removal of my gallbladder and two problematic pregnancies while on Reglan for about three years. I was misdiagnosed with gastroparesis and then SMA syndrome. Then after my son was born my OBG took me off my Reglan. I was just recently able to get with a gastro who has diagnosed me with IBS. Right before he diagnosed me I went on a gluten free diet and was amazed at the results. So when he called me and wanted me to start a new medication I told him I wanted to try gluten free first. I have been gluten free for a little over a week and today for lunch I had nachos with corn chips, beans, meat, and salsa, like I had earlier this week with no problems. I had a bad reaction. Come to find out my husband said he used a different taco seasoning than we normally do. Sure enough when I looked at the package it had wheat in it. I couldn't believe that such a little bit had such a big impact. So my questions are in 2007 I had a negative blood test for celiac disease and what I have read about gluten intolerance says that its dose specific, I had very little gluten but big reaction. Could it be the test was a false negative? Are the tests very accurate? I am also confused on the differce between celiac and gluten intolerance. Also does gluten intolerance run in families and is it genetic like celiac disease? I can't bare a retest by introducing gluten in my diet again. Im not near 100% but the differnce I feel off of gluten is just awesome. Since I was taken off reglan, which helped me eat at night without vomiting and stomach pain, In January, I have lost 21 pounds I am 5'7" and 108lbs. I worry for my kids and with no real way of testing for gluten intolerance and its hard to ask a 2 1/2 year old and a 9 month old what they are feeling I know that it could be easily missed. My daughter has a dairy allergy as well so I'm thinking the whole house should go gluten free along with me. Sorry for such a long post. I am new to gluten intolerance and still really don't understand it, most articles I read pertain to celiac disease and I don't know if the same things apply to both. Thank you for any help. I plan to seek out dietary help from someone who specalizes in gastro/gluten problems but until then any advice would be great!

[AVR1962]

Gluten intolerance, like Celiac, does run in families. I have 2 grown daughters, an uncle and 4 grandchildren from the same side of the family who are all gluten intolerant. I am the only one who has been tested for Celiac but test was done after I was on a restricted diet so results were negative.

It helped me to read a book about Celiac to understand just how the glutens affect the body. I too am very sensitive. I had a small piece of steak and knew the marinade must have had wheat. I am equally as sensative to high fructose so just be aware that you could have more than one sensativity going on. One of my daughters is off of corn right now because she thinks is might be giving her issues. Another daughter cannot anything with soy in it.

[Jenniferxgfx]

I also took reglan for gastroparesis and it turned out to be a gluten problem. I also had a negative celiac test, and I'm sure it was a false negative now.

I think medical science just hasn't come up with a test as sensitive as we are

[T.H.]

With re: to gluten intolerance, the short answer is that nobody knows much about it. They don't know why gluten intolerance happens, or how it works. I know people with it who have mild problems, and people who are so sensitive that they rival some of the more sensitive celiacs I know of. Perhaps they are false negative celiacs, perhaps not. Truly - nobody knows. Researchers only just recently did a study to even try and prove it existed in the first place, and that was just a starter study that showed people have reactions without developing anti-bodies.

So sensitivity levels, what gluten intolerance does to your body, how it manifests - your guess is as good as theirs.

Although the idea that gluten reactions are dose specific seems to be true, the concept of 'amount' may be different than you are thinking. For some people with gluten issues (celiac disease OR intolerant), they will get very sick if they eat a piece of bread, and mildly ill if they got a couple crumbs on their food.

For some people, like a couple in my family, they will get mildly ill if they eat grains that were processed in a facility that also processes wheat, and get very sick if a piece of bread merely touched their food but left no visible crumbs.

For many of us, actual wheat, rye, or barley added - as opposed to cross contamination in minute amounts - is enough to make us really, really sick. And, also for many of us, our sensitivity level to gluten increases once we go gluten free. I started having trouble with gluten cross contamination within days. Some have it within weeks, some months.

I wouldn't discount the idea that you have celiac disease - you're right that there can be false negatives. False negative blood tests run about 20%, if I recall correctly. I think you're smart not to try and do a gluten challenge to retake test. Some people have become quite ill doing that sort of thing, but most doctors aren't really aware of HOW ill you can get doing it.

However, you can still have your kids tested for it - they may test positive. Also...is your daughter's allergy diagnosed by an IgE type test, or through her reactions? I only ask because many celiacs have lactose issues (as opposed to an allergy) because the damaged villi have trouble producing lactase to digest the lactose. So if your daughter's symptoms were what prompted the dairy diagnosis, it could be a sign she has gluten issues, or at least that you may want to trial her on a gluten-free diet.

My son has had dairy issues most of his life. When he went gluten free after myself and my daughter were diagnosed and his test was negative, within a few months he could have dairy again without the same problems. It was eye-opening.

In the end, this is what I told my son when we made him go gluten free with no positive test: gluten makes our bodies sick. We're not sure why, because the doctors are still learning about this. But even if we don't know why, we want to make sure we are all safe and healthy, and since we know gluten makes us sick, we are going to keep it out of our food so we won't BE sick.

We've been more detailed with him the more we learn, but he's slowly come to see that it makes him sick and he avoids it now very carefully. He'll even chide his granpa (also a celiac) if granpa looks like he's thinking of cheating on the diet.

Good luck - and congrats on figuring out what is making you feel better! It's a wonderful thing, isn't it? I couldn't believe how much of a difference it made, once we got it all figured out.

[stephharjo]

With re: to gluten intolerance, the short answer is that nobody knows much about it. They don't know why gluten intolerance happens, or how it works. I know people with it who have mild problems, and people who are so sensitive that they rival some of the more sensitive celiacs I know of. Perhaps they are false negative celiacs, perhaps not. Truly - nobody knows. Researchers only just recently did a study to even try and prove it existed in the first place, and that was just a starter study that showed people have reactions without developing anti-bodies.

So sensitivity levels, what gluten intolerance does to your body, how it manifests - your guess is as good as theirs.

Although the idea that gluten reactions are dose specific seems to be true, the concept of 'amount' may be different than you are thinking. For some people with gluten issues (celiac disease OR intolerant), they will get very sick if they eat a piece of bread, and mildly ill if they got a couple crumbs on their food.

For some people, like a couple in my family, they will get mildly ill if they eat grains that were processed in a facility that also processes wheat, and get very sick if a piece of bread merely touched their food but left no visible crumbs.

For many of us, actual wheat, rye, or barley added - as opposed to cross contamination in minute amounts - is enough to make us really, really sick. And, also for many of us, our sensitivity level to gluten increases once we go gluten free. I started having trouble with gluten cross contamination within days. Some have it within weeks, some months.

I wouldn't discount the idea that you have celiac disease - you're right that there can be false negatives. False negative blood tests run about 20%, if I recall correctly. I think you're smart not to try and do a gluten challenge to retake test. Some people have become quite ill doing that sort of thing, but most doctors aren't really aware of HOW ill you can get doing it.

However, you can still have your kids tested for it - they may test positive. Also...is your daughter's allergy diagnosed by an IgE type test, or through her reactions? I only ask because many celiacs have lactose issues (as opposed to an allergy) because the damaged villi have trouble producing lactase to digest the lactose. So if your daughter's symptoms were what prompted the dairy diagnosis, it could be a sign she has gluten issues, or at least that you may want to trial her on a gluten-free diet.

My son has had dairy issues most of his life. When he went gluten free after myself and my daughter were diagnosed and his test was negative, within a few months he could have dairy again without the same problems. It was eye-opening.

In the end, this is what I told my son when we made him go gluten free with no positive test: gluten makes our bodies sick. We're not sure why, because the doctors are still learning about this. But even if we don't know why, we want to make sure we are all safe and healthy, and since we know gluten makes us sick, we are going to keep it out of our food so we won't BE sick.

We've been more detailed with him the more we learn, but he's slowly come to see that it makes him sick and he avoids it now very carefully. He'll even chide his granpa (also a celiac) if granpa looks like he's thinking of cheating on the diet.

Good luck - and congrats on figuring out what is making you feel better! It's a wonderful thing, isn't it? I couldn't believe how much of a difference it made, once we got it all figured out.

Thank you so much for your insight it has answered so many questions of mine. We have not tested our daughter's milk allergy because her last doctor said that she was too young to test, but she has a new pedi that she will see in september so maybe they will help us out. When she was one we weened her from the bottle on to regular milk and I noticed she had a runny nose constantly that cleared up when we changed her to almond milk. Not really knowing though we still allowed her to have cheese and yogurt because it didnt seem to affect her. Then she started breaking out with MRSA staff. Soon it was a constant battle, we took her to a ND and she had us take her off of all milk and see if that helped. Amazingly her MRSA cleared up dramatically. We have to be very strict though or she will break out. So the milk is lowering her immune system allowing the MRSA to take its oppurtunity to cause problems.

Again thank you so much

[stephharjo]

Thank you for everyone's help. It really helps to be able to talk to other people that are going through the same thing. I don't know anyone that has an issue with gluten or at least that has identified it so this is a whole new world for me. Best wishes to all!

[Bubba's Mom]

My blood test was negative, but I was fortunate because the GI did an endoscope anyway. It showed obvious villi damage and biopsies confirmed Celic Sprue.

A lot of Dr.s stop looking once they get a blood test result that looks normal. The fortunate people are the ones that are aware of Celiac disease or gluten intollerance and give gluten free a test. The reactions in their body tells them they need to be gluten free.

I have had so many different symptoms since childhood, differing as I aged, and according to my diet, that it's not surprising I was misdaignosed all of my life. It wasn't until I started losing weight and had nausea and reflux so bad that I didn't want eat, along with stinging pain in several places in my belly, that I was told that maybe I should find a GI specialist by my primary care Dr. A food intollerance or Celiac wasn't even on my radar..or my Doc's.