Neg Blood Test

[woolwhippet]

Well, my blood work shows that gluten is supposedly not the cause of my illness (my result was 5 and positive was greater than 20 and apparently the test is 97% accurate). I was SO positive it was gluten because I responded so well to the diet (butt rash cleared up, no brain fog, and NORMAL BMs).

The doctor suggested it may be dairy I am reacting to. She told me she wouldn't rule out gluten 100% yet but to stay dairy free for three weeks and then reintroduce in small amount to see effects.

My own plan is to reintroduce gluten and go dairy free. If I stay healthy while eating gluten then it's dairy. But if I sink back into losing weight and my itchy butt rash comes back then I guess I'll have my answer.

Thanks to all of you for your help. I have so enjoyed reading your posts and have learned a lot from reading this baord.

Lenore

[Nancym]

Well, I think the blood test is about as accurate as reading tea leaves. If you've been around the forum for awhile, you know lots of us have had positive results on the diet and negative results on their various tests.

Your plan sounds good though. Go for it!

[Ursa Major]

You may be gluten intolerant without celiac disease (which is one form of gluten intolerance). In that case your blood tests would always be negative, but it is just as serious as celiac disease. From your positive response to the gluten-free diet I believe your doctor is wrong and as ill informed on gluten intolerance as most doctors.

You may be dairy intolerant as well as gluten intolerant. But you really shouldn't ignore your very positive response to the gluten-free diet.

I myself have no idea if I have celiac disease or 'just' a gluten intolerance. It doesn't matter, the treatment is the same: The gluten-free diet.

The people who don't have villi damage usually have other problems, like skin outbreaks, mental reactions (like depression and brain fog) and nerve damage (neuralgias, bone and muscle pain and many more). Which can become irreversible if you don't stay gluten-free, even if your blood work and biopsies are negative.

[GFJan]

My gastroenterologist is a huge gluten-free diet fan. He's been to seminars all over and has seen so many cases where everything seems normal including blood tests, biopsies, etc and yet the patient responded to the diet. He feels that's the only reliable "test" and believes that someday the science will catch up with what they're observing.

Jan

[Lisa]

My gastroenterologist is a huge gluten-free diet fan. He's been to seminars all over and has seen so many cases where everything seems normal including blood tests, biopsies, etc and yet the patient responded to the diet. He feels that's the only reliable "test" and believes that someday the science will catch up with what they're observing.

Jan

Wow! How lucky you are to have such a wise doctor.

[hathor]

Did you eliminate gluten prior to the blood test? If so, the test wouldn't be accurate.

Also, you need a battery of blood tests, not just one. You only mention one result. Search through celiac.com and the message board; I'm sure all the different tests are explained. I would have to look the stuff up myself to explain it in more depth to you because I had the Enterolab stool testing (theoretically more sensitive [at least according to Enterolab ], plus I didn't have to involve [i.e., convince] a doctor or add gluten back into my diet).

I wonder about the accuracy figure. Is this measuring how many positives are really positive, or how many negatives are really negative? (And if so, what is the test for being "really" positive or negative?) I've certainly heard lots of folks here mention false negatives -- as well as problems with doctors not realizing that someone must be consuming appreciable amounts of gluten for an appreciate amount of time prior to testing nor that several different tests need to be run on the blood.

The best test is how you reacted to the diet. Of course, your plan to reintroduce gluten may confirm things for you in any event.

But won't you be confounding things if you introduce one thing and take out another? What if you negatively react to both but in different ways? If I were you, I would take out dairy and still keep gluten out. See if you feel better. Once you resolve whether dairy impacts you, you can still challenge with gluten if you wish.

[woolwhippet]

Well, I think the blood test is about as accurate as reading tea leaves.

HA! That made me laugh!

[ravenwoodglass]

"But won't you be confounding things if you introduce one thing and take out another? What if you negatively react to both but in different ways? If I were you, I would take out dairy and still keep gluten out. See if you feel better. Once you resolve whether dairy impacts you, you can still challenge with gluten if you wish"

This was exactly what I was going to suggest. A word of caution on the challenge, when you challenge with gluten it may be up to five days before you react gut wise. DO NOT chow down on copious amounts of burgers and pizza, you might really regret it. If you do challenge use something like cream of wheat or triscuts or shredded wheat at least 3 times a day.

[woolwhippet]

Thanks--this is very good advice esp about how to introduce gluten. I honestly was ready to do the pizza thing.

I notice that many here that many people are gluten free regardless of test results. I find this very inspiring and reassuring.

Lenore

[dally099]

Well, my blood work shows that gluten is supposedly not the cause of my illness (my result was 5 and positive was greater than 20 and apparently the test is 97% accurate). I was SO positive it was gluten because I responded so well to the diet (butt rash cleared up, no brain fog, and NORMAL BMs).

The doctor suggested it may be dairy I am reacting to. She told me she wouldn't rule out gluten 100% yet but to stay dairy free for three weeks and then reintroduce in small amount to see effects.

My own plan is to reintroduce gluten and go dairy free. If I stay healthy while eating gluten then it's dairy. But if I sink back into losing weight and my itchy butt rash comes back then I guess I'll have my answer.

Thanks to all of you for your help. I have so enjoyed reading your posts and have learned a lot from reading this baord.

Lenore

hi lenore, well if you have been on the diet for any period of time no kidding your blood test was negative, but if youve had positive response to the diet and your rash is going away i would take that as a sign, my blood test was negative but i had been on the diet for 2 weeks, after 2 months of being on the diet my bm's were normal i gained the weight back, the dark circles went away etc etc, so i did a challenge for a week, i knew my answere pretty quick, it is gluten. you can get testing from enterolab as well, thats what im doing. good luck!!

[ravenwoodglass]

I notice that many here that many people are gluten free regardless of test results. I find this very inspiring and reassuring.

Lenore

It is also in so many ways so sad. The testing for celiac and gluten intolerance is so inadaquate in terms of false negatives. Most doctors don't even suggest the diet they just give us pills, or worse tell us it is 'all in our heads'. So many lives cut short and so many desperate people that just want to be well. And so, so many ignorant doctors. I hope you find the answers you need.

[debmidge]

Lactose intolerance tip: keep in mind that like gluten, lactose is in a lot of foods as a single ingredient. So check labels for this as well. It can be found in (besides obviously in diary foods) margarines in amounts higher than what is naturally found in pure butter, found in frozen foods, in candies, in grocery items, buttered popcorn, prescriptions and over the counter medicines, wheat breads, baked goods from bakery, white sauces, commerciallly made mashed potatoes - potato salad, cole slaw, & other creamy salads, quick mix stuff.....

So be careful about sources of lactose too if you are going to eliminate it as a test. It's not serious like gluten, as it leaves your body 1 to 72 hours after consumption. I've had lactose unknowlingly at noon lunch and found myself in ladies room having D an hour later. And Lactaid pills work "pot-shot." With the pills, I won't have sudden D but for the next day or so I'll have a lot of gas working through my intestines.

[hathor]

woolwhippet, is it lactose or casein you are going to eliminate? Casein is in lots of things as well, including supposedly "veggy" cheeses. You have to really check ingredient lists.

[woolwhippet]

Thanks again. I am struggling with the dairy thing--you are right, it's eveywhere!