Positive Blood Test.....

[wolfie]

antigliadin IGG and antigliadin IGA both were positive....one was 50, one was 5....I don't know which was which. Dr and nutritionist both advised me to go gluten free. I have had IBS forever (or so I thought) and was somewhat pleased to figure out what the deal was. Dr asked if I wanted a referral to a gastro and I said okay, thinking it could only help. I went to the gastro today and she wants to do a biopsy to confirm Celiac. I understand the point, but she said I had to resume eating gluten now until my test on Jan 31. I was just starting to feel better.....in fact it is amazing how much better I do feel now as opposed to when I was eating gluten. I am very upset that she wants me to eat gluten again for this test. Is it really necessary? The blood test seemed to be enough for my PCP and my nutritionist.

Any thoughts are much appreciated. I am so thankful I found this site....there is such a wealth of information.

[Guest nini]

I never had the biopsy. The positive blood test and the positive dietary response were more than enough for me and my PCP... even my GI said that the biopsy wasn't neccessary with me. Listen to your body, if you feel better on the diet, stick to it. The blood tests are sufficient enough to dx.

[floridanative]

I agree with nini. Your positive response to the diet is your answer. I had a biopsy Wed. and the doc wouldn't put me all the way out even though I begged him too (just conscious sedation) and it was NOT fun. It was not painful but I could see the doc putting the tubes down my throat and I was so mad that he would not put me out. I would not have him do any test in the future needless to say. Most everyone here said you go to sleep for the test which is the way is should be. Oh well....live and learn.

[tarnalberry]

the "clinical" gold standard is a biopsy. though, just two weeks of gluten won't be enough for reliable results. but you ask "do I need it?". the answer is up to you. is what you know enough to convince yourself that you should stay gluten free for life? you are the only one who has to make this decision, and if you already have doctors who support you, that's even better. you may want to talk to the GI about this, if you think you'll be seeing him in the future, but realize that some doctors stick hard to the "biopsy required for a diagnosis" rule.

[Rachel--24]

I agree with the previous posts. If you are satisfied with your diagnosis and dont think you'll be questioning it later skip the biopsy. It wont really tell you anything you dont already know if its positive...if its negative it could very easily be a false negative so you could go through the pain of eating gluten for nothing.

[CMCM]

Well, look at it this way: If you stopped eating all gluten and felt great as a result, and then if your doctor said your tests didn't show celiac disease so you can eat gluten and when you do eat gluten you get sick and feel terrible again, which way of eating would you follow? Wouldn't you rather feel better?

The only thing FOR ME that makes "knowing" important is that it really affirms in my mind that I MUST adhere to the gluten free diet to avoid intestinal damage and a higher risk of cancer at some point. Not knowing makes it easier to "cheat", which you absolutely should not do if you have celiac disease.

Frankly, when you look at all the health problems just in this country alone, all the digestive problems, diabetes, obesity (even in kids now), IBS and countless other things that are frequently associated with or misdiagnosed instead of celiac disease....and when you look at the astonomical increase in consumption of grains in our country since 1900, and how all the rise in heart disease etc. correlates with the rise in grain consumption since 1900, my conclusion is that probably no human digestive system handles grain very well, but some handle it better than others and some can't handle it at all, but basically, the message is clear to me: we should not eat gluten! No one should eat gluten!

If you haven't read "Dangerous Grains" and a few other similar books, it's very enlightening reading! The several books I read are what prompted me to get tested so I'd know for sure.

Carole

[Nancym]

CMCM is absolutely right. Also Dr. Fine says that damage to villi can take a long, long time to show up, like years sometimes. So what would you do if after 5 weeks, you see no damage to your villi? Assume you don't have a gluten intolerance?

[wolfie]

Thank you all so much for the insight. It helps to talk to people who are knowledgeable about all of this. DH just says it is my body and if I don't feel like doing the test, don't! LOL! Now after another full day (3 total so far) on the gluten-free diet, I really can't see going back.....I haven't felt this good in I don't know how long. I was out today for most of the day and it was the first time in a long time I didn't have to worry about embarassing gas while shopping and then eating. As a recovering anorexic I happen to be extremely diligent about following diets, so I don't intentionally plan on eating gluten ever again. I am going to follow back up with my PCP and make sure she is okay with my plan....I don't see her not be as she didn't even make me see the gastro...it was my choice.

Thanks again and I look forward to learning lots more from these boards.

[CMCM]

Thank you all so much for the insight. It helps to talk to people who are knowledgeable about all of this. DH just says it is my body and if I don't feel like doing the test, don't! LOL! Now after another full day (3 total so far) on the gluten-free diet, I really can't see going back.....I haven't felt this good in I don't know how long. I was out today for most of the day and it was the first time in a long time I didn't have to worry about embarassing gas while shopping and then eating. As a recovering anorexic I happen to be extremely diligent about following diets, so I don't intentionally plan on eating gluten ever again. I am going to follow back up with my PCP and make sure she is okay with my plan....I don't see her not be as she didn't even make me see the gastro...it was my choice.

Thanks again and I look forward to learning lots more from these boards.

I don't know how old you are and how long you've been bothered by symptoms, but it seems that some people can get away with eating gluten for quite a long time. I did. I had a bunch of things from birth, and then it seems I was doing OK all thru my teens and 20's, but stuff starting happening in my 30's. Migraines, for one. Vague digestive problems that came and went. Got worse in my 40's. I've gotten to 56 not addressing this, but the truth was, none of my other complaints (migraines, asthma like symptoms, bloating and gas, lots of upsets, nausea after eating, and finally dizziness) were quite bad enough to make me think celiac, even though my mom has it. I wasn't underweight. But I finally got to the point fairly recently where I began to feel there was NOTHING at all I could eat that didn't bother me. So who knows what damage has been done to my intestines. Frankly, I have no intention of going that far with all this. If my Enterolab tests come back as I'm sure they will, I've got my answers. No matter what damage has been done to my intestines, the answer is the same with or without a biopsy: Avoid ALL gluten. Period. My mom was diagnosed at around 42, and she nearly died....the doctors told her that her intestinal walls were totally smooth and had no villi left. She she's been gluten free since then, she healed quickly, put back the weight, and she's now 84 and doing great. So damage doesn't have to have a bad outcome, BUT....not dealing with this, ignoring it, CAN and MAY lead to a bad outcome. Simple as that.

Carole

[wolfie]

Glad that your Mom is doing well now. So are you gluten fee already or waiting for the results before you go gluten-free?

I am 33 and have had IBS issues since I had my first child at 23. The drs always said it was a food intolerance and stay away from that food. I did narrow some down...raw onions, raw peppers, all seeds. The diarrhea went away, but the gas never did...it just got progressively worse over the years. Then after the birth of my daughter 3 years ago...it got worse and I could no longer drink milk. Drs said it was IBS and to go on a high fiber diet. That worked for the consitipation, but not the gas. Then I had a relapse with my anorexia and started seeing a nutritionist. She and I were trying to work around my problem foods when she asked if I had ever been tested for Celiac. She requested that my dr run the test and here I am. Funny thing is that I did ask my allergist last year if Celiac could be an issue...he said not unless I have a problem when I eat bread. At that point, I didn't appear to, so he brushed it off. I think I will find a new allergist now though

Kim