Questions

[Pink-Bunny]

Ever since I could remember I've never felt 'good'. I've always been tired, stomach problems, migraines, D, dizziness, and a bunch of other stuff that I'd be here forever typing it all. For the past year it's been getting a lot worse. My boyfriend of almost 4 years thought that I was full of crap when I told him I never felt good, but he started working at a call center for a food company and he gets a lot of calls from people asking about ingredients because of celiac. So we were talking and he said that I should research it. I did and it starts to make sense now. My question is I've read that if you plan/want to get tested for celiac that you shouldn't try the diet because you could semi heal and it wouldn't give a true reading.

I have tried it for about a week. No gluten and I felt great. And then I tried a week with gluten and I sucked I felt horrible.

My problem is I don't know when I'll be able to get tested. Along with if my doctor will even consider testing me for it. I could say that it's in my family history because I really don't know if it is our not. My mom was adopted and my father's side doesn't talk about medical 'issues'. So I'm debating on whether or not to try the diet before i see the doctor. Any thoughts?

Also I'm trying to research what the difference is between celiac and gluten intolerance. I thought it was the same thing but I read somewhere on here that they are different. Are they?

Thanks for your help in advance

[CarlaB]

If gluten makes you sick and you can't go to the doc right now for it, then just eat gluten-free. If you request the blood test, be sure it's the complete panel as many docs only test the IgA, and that doesn't tell you enough.

I don't really think anyone really knows the difference between gluten intolerance and celiac, except that by definition celiac has damage to the intestine and someone may be intolerant and not have the damage -- either because they will never get it, or because they haven't gotten it yet.

[par18]

I agree with Carla. Really does it matter whether or not it is the same or that you even have a diagnosis if when you change your eating habits you feel better. The bottom line is if you are seeking a better quality of life what difference does it make how you get there or whether you have a name for it. It seems as though some people have been so sick for so long that those closest to them don't care what you have to do as long as you get well so they don't have to listen to you complain or worry about you. Do whatever you think is in the best interests of you and no one else. By the way no one in my family "ever" had symptoms so there is no info for me to research. Hope this helps.

Tom

[tarnalberry]

If you want to get a blood test, you need to be eating plenty of gluten for approximately three months prior to the test. You don't have to get a blood test to eat gluten free - the diet is entirely up to you - but for your potential future family, the test could prove useful. There are pros on cons on both sides.

[Nic]

If you want to get a blood test, you need to be eating plenty of gluten for approximately three months prior to the test.

Just a question about this, my son just tested negative for the antibodies through a blood test. He really only eats gluten at lunch time as his brother is gluten free and therefore breakfast and dinner always are. The cookies and snack food in the house are all gluten free. So as I said, he is only eating gluten for 1 meal a day. Does that sound like a reason for a false negative.

Nicole

[AmandaD]

I feel pretty strongly that you should be appropriately tested by a doctor at a health care practice. You should discuss your concern about Celiac with your doctor if you feel you have symptoms of Celiac.

There are some very serious possible long-term consequences from Celiac. It's important that if you do actually have Celiac diagnosed by a blood test and biopsy then you need to adhere strictly to the diet.

That's just my two cents...

[Guest nini]

there are pros and cons to both, let me just tell you a little about my story... I was sick all my life, was tested by applied kinesiology about 10 years ago and told wheat was poison to me... I didn't buy it and continued to eat wheat... about 8 years ago my husband and I started trying to have a family. After I had several miscarriages a friend of mine told me that my symptoms sounded like her mom's, her mom had this really rare thing called Celiac and couldn't eat any gluten. So I did the research, the symptoms matched including the miscarriages and I tried the diet, I then conceived my daughter, and continued the gluten-free diet through the first trimester and felt GREAT. My OB/GYN told me that it was all in my head, that a gluten-free diet was BAD FOR THE BABY and to go off the gluten-free diet... I listened to him. I ended up getting really ill and developing many complications during my pregnancy and delivered a preterm infant by emergency c-section after her and I very nearly died. I still didn't make the connection that it was the gluten. I continued to eat it while nursing my daughter and she was dx'ed with GERD, failure to thrive, anemia and hypoglycemia, before she was one we had tried so many drugs with her and she had horrible bloody diaper rashes and NEVER had a formed stool.

When she was three I was really getting sick, to the point that I couldn't keep anything in me but I kept gaining weight and my blood pressure was high... I tested positive for Celiac and then had my daughter tested. Her tests were negative and her Ped. GI said she couldn't possibly have it. With the help of her pediatrician (after being threatened to be reported to CPS for her failing to gain weight) I said I wanted to just try the diet... Miracle of miracles my daughter was responding well to the very same diet I had to be on.

Fast forward to my boss cancelling my health insurance and me trying to get coverage on my own, I WAS DENIED HEALTH INSURANCE because of my positive dx. Because my daughter does not have a positive dx on her records she can still get insurance.

so that's my story. do you test or do you go on positive dietary response? well, the testing is not as accurate as the medical community would like you to believe and many people get false negatives but respond miraculously to the diet. Positive dietary response is the most valid diagnostic tool and if you feel better off gluten then you obviously need to be off it. Does it matter if it's Celiac or Gluten Intolerance? NOPE you treat it exactly the same, lifelong adherance to the gluten-free diet, AND if you are on the gluten-free diet (if you are Celiac) your chances of developing any of the other complications returns to that of the "normal" population...

so I ask you... can you live with self dx? could you accept that if you got a negative result to blood and biopsy testing that you might still have it if you responded to the diet?

[Pink-Bunny]

Thanks for your responses everyone.

I have one more question. If you get a dx that you are...granted there could be complications to health...why do insurance companies turn people with celiac down if it just means staying gluten free?

[par18]

Thanks for your responses everyone.

I have one more question. If you get a dx that you are...granted there could be complications to health...why do insurance companies turn people with celiac down if it just means staying gluten free?

Because insurance companies understand this condition about as well as the majority of the medical community. They don't view genetic testing as preventive medicine. How else do you explain why 95% of the estimated 3 million people with this disorder are still undiagnosed. Insurance companies look for "any" reason to increase your rates. With only 5% of the people properly diagnosed what makes you think you would have any chance of being diagnosed anyway. This is why I feel the positive diet response makes the most sense and costs the least amount. If we both in fact have Celiac disease you have the same chance of developing additional disorders with the positive diet response as I do with a biopsy and the same positive diet response. I doubt if any of the insurance companies really know that the diet is an option. If they did they might require all persons requesting Celiac tests to try the diet first or they would not pay for the tests. This would be real preventive medicine. How this might be accomplished I am not sure. It would take honesty on behalf of both parties. Think of all the money (this part I know the insurance companies would understand )and suffering that might be saved. If anyone has a better idea on how to best get the message across I would love to hear it.

Tom

[Nancym]

Also, outside of forums like this where people get lots of support and guidance, the adherance to a gluten-free diet is probably pretty abysmal.