Unclear Diagnosis

[jmn1958]

For five years I suffered with diarhea, depression, stomach pains, and bowels so bad everything went right through me, finally I had a endoscopy that was proven I had celiac. I went on the gluten-free diet and lost over 50 lbs and felt terrific, but I decided to have a second opinion, and I went on a gluten challenge for 3 months, had another biopsy and it was normal, no celiac, so now they told me about a year ago, I don't have celiac, but since I've been eating regualar foods and getting back the symptoms, I asked another stomach doctor to check me, another endoscopy, but he won't because he said the person who concluded I wasn't a celiac was the best doctor in diagnosing celiac in Boston. Anyway I still feel I have it, I can't eat without running to the bathroom afterwoods and I'm getting that bloat feeling again, and tiredness back. I was very anemic with the first diagnosis so bad my red blood cell were depleted in my storage cell area. I also have a problem with affording the food, but usually I'll just eat veggies. Anyway I have two brothers that have it and a nephew so far who are willing to do the testing, everyone else seems to be in denial and won't even talk about it. My youngest brother diagnosis first in 1968 when he was born doesn't stick to the diet because his doctor told him he didn't have it that bad, now we all no that's not even true, if you have it you must be on the diet and nothing else. My older brother got checked after my first diagnosis and he discovered he had along with his son. He sticks pretty much to the diet. Anyway I know I have it but I can't get a doctor to recheck me and give me a firm diagnosis. They said if you felt better on the diet just continue it but it will be an expense and I can't get it off my taxes without a doctor's note. Help???

[CarlaB]

I'm wondering why you would want a second opinion if the biopsy had clearly shown you had it? The biopsies are known for their false negative rate, but NOT their false positive rate!!!

That being said, your newer biopsy could have shown a false negative, or could have been negative because three months just didn't do enough damage.

If you had a firm diagnosis, YOU HAVE CELIAC!! It doesn't go away even though the damage does once you are gluten-free. Go back on the diet and you will stop feeling bad. Your first biopsy was accurate ... your second one wasn't necessarily so since your intestine had healed from being gluten-free. You would have needed four months and the equivalent of four slices of bread per day to cause enough damage, which still may not have been found. Biopsies can prove you have celiac if they're positive, but they cannot rule it out if they're negative.

[tarnalberry]

I agree with Carla - you don't have an unclear diagnosis at all. You have a very clear one. Three months may not have been long enough to get enough damage if you'd been gluten free for very long, heal quickly, they didn't do sufficient sampling in the right place, and the lab had strict guidelines for what constituted "enough damage" to qualify as celiac. Not only that, but you do well on the diet, and badly off the diet. Doubly conclusive!

As for the cost... You don't need to buy any specialty food. Beans and rice are cheap and filling. Add those veggies and fruit, and *small* portions of meat and eggs (and dairy if you can have it), and you've got a well balanced diet that does not have to be expensive.

[AndreaB]

I agree with the Carla and Tiffany.

If you had a positive biopsy you have Celiac. It would seem that you had healed enough to show a negative after your 3 month challenge.

Back to the gluten free diet. You have a definate diagnosis with the first biopsy.

[Rachel--24]

Yup....I agree with everyone. You had a very clear diagnosis....you had a positive biopsy. You also went on the diet and felt great. A 3 month challenge may have not been enough time to cause significant damage and the biopsy is a "hit or miss". They could easily miss damage.

I dont understand why you need another firm diagnosis?? Wasnt the first positive biopsy as firm a diagnosis as you can get? You obviously have Celiac as do many of your relatives. The only reason your last biopsy was normal was because you'd been following the diet and were doing well.

I would just get back on the diet and get well again.

[Guest nini]

I agree with the other posters, you have a firm dx from the first biopsy, if it was positive THERE IS NO DOUBT... if you went gluten-free and saw results quickly you probably healed quickly, and 3 months back on gluten is not enough to cause full blown damage so it can be easily missed. I don't care how much of an "expert" in his field a Dr. is, he is still subject to making mistakes and from what we've seen on this board from so many people, the biopsy often misses damage if they didn't take enough samples or the lab didn't know how to read them or the threshold for dx was set at a higher standard... anyway, the point is, YOU DO HAVE CELIAC.

As far as getting a break on your taxes, my accountant hasn't found it to be worth my while at all. It's too much of a PITA to keep track of the difference in price between regular pasta and gluten-free pasta or regular bread vs. gluten-free bread and you really don't get that good of a break... (this was from my accountant, your results may vary)

Another thing, if you did have a firm dx on your permanent health record, you can be denied health insurance or life insurance or both in the future if you have to have to apply as an individual instead of through a group. Think it can't happen? I was denied health insurance coverage. Told I was uninsurable solely because of my Celiac dx.

[jerseyangel]

No doubt about it--a positive biopsy is just that--positive. You have Celiac Disease. I agree with everyone else that what happened was, your intestine healed enough so that no damage showed up the second time.

The best thing you can do for yourself is to get back to 100% gluten-free, and not look back. The positive response to the diet is really the best indicator, anyway!

[happygirl]

You have Celiac. Start the diet and never go back

The above posters have named all the reasons for why you biopsy was potentially negative the second time. If you went on the gluten free diet, did better....and then went back on gluten and now you are having problems: that is a better diagnostic tool than any biopsy.

The diet really isn't that expensive, considering all the foods you won't be buying anymore. I was diagnosed at age 23, in graduate school (poor!) and I did ok...I just wouldn't eat a ton of "treats"...no different than if I was eating regular and watching my budget.

We are here to help! Let us know what else we can do.

[PeggyV]

I agree with the others, I have not had a positive test, but over the years I cut a good deal of gluten out of my diet....just made me feel better. I did not realise what Celiac was. Once I had chronic diarea, years at a time. I had my gallbladder out, was diagnose with irritalbe bowel, etc. Then I started breaking out in small itchy blisters..... My daughter was told to go on a gluten free diet to help her symptoms (not the same as mine) and I started reading about gluten intolerance and Celiac. I had a biopsy and blood test, both came back negitive. When I went on a gluten free diet my blisters and adominal problems went away. I dont plan on wasting any more money on tests, I feel better and lost all of my abdominal problems on this diet. No more gas, bloating and diahrea. Now when I eat something with gluten I have to run to the bathroom...... I dont care what the test say I know I have a problem with gluten.

For five years I suffered with diarhea, depression, stomach pains, and bowels so bad everything went right through me, finally I had a endoscopy that was proven I had celiac. I went on the gluten-free diet and lost over 50 lbs and felt terrific, but I decided to have a second opinion, and I went on a gluten challenge for 3 months, had another biopsy and it was normal, no celiac, so now they told me about a year ago, I don't have celiac, but since I've been eating regualar foods and getting back the symptoms, I asked another stomach doctor to check me, another endoscopy, but he won't because he said the person who concluded I wasn't a celiac was the best doctor in diagnosing celiac in Boston. Anyway I still feel I have it, I can't eat without running to the bathroom afterwoods and I'm getting that bloat feeling again, and tiredness back. I was very anemic with the first diagnosis so bad my red blood cell were depleted in my storage cell area. I also have a problem with affording the food, but usually I'll just eat veggies. Anyway I have two brothers that have it and a nephew so far who are willing to do the testing, everyone else seems to be in denial and won't even talk about it. My youngest brother diagnosis first in 1968 when he was born doesn't stick to the diet because his doctor told him he didn't have it that bad, now we all no that's not even true, if you have it you must be on the diet and nothing else. My older brother got checked after my first diagnosis and he discovered he had along with his son. He sticks pretty much to the diet. Anyway I know I have it but I can't get a doctor to recheck me and give me a firm diagnosis. They said if you felt better on the diet just continue it but it will be an expense and I can't get it off my taxes without a doctor's note. Help???

[ReneCox]

wow that doctor was really ignorant.

[Electra]

See this is one of the things that I'm afraid of. I have tested positive for Celiac through blood tests but it will be at least a month or two before I can get into the GI specialist and my primary care dr's seems to think that they will have to do a biopsy to have solid proof. I want to go gluten free right now because I'm getting nerve damage and everything else, but what if they won't diagnose me without the biopsy even though my blood tests said I was positive. Man this stinks!! What if I get one of those crappy GI Dr.s that doesn't know what in the heck they are doing UG!!

I'm new to all this, but as far as I've read a positive biopsy is a positive and you NEVER grow out of Celiac, so I'd say you definitely are positive for Celiac!!

[Jestgar]

See this is one of the things that I'm afraid of. I have tested positive for Celiac through blood tests but it will be at least a month or two before I can get into the GI specialist and my primary care dr's seems to think that they will have to do a biopsy to have solid proof. I want to go gluten free right now because I'm getting nerve damage and everything else, but what if they won't diagnose me without the biopsy even though my blood tests said I was positive.

But Electra, you don't need a doctor's diagnosis. The treatment is diet, so what do you care if your doctor proves to himself that you're sick. It doesn't change anything in terms of what he can do to help you.

[GlutenWrangler]

One positive biopsy is all you need. You definitely have celiac. That doctor is an idiot, no two ways about it.

-Brian

[super-sally888]

Hi Electra!

Since when did they have false positive - with blood tests?? I reckon a positive blood test means you have it. Your Dr. also not knowledgeable to insist on a biopsy. Why wait? Even if you have celiac the biopsy may be false negative and then where would you be?

Don't wait just start the diet and start feeling better!

Have a great Christmas.

Sally

But Electra, you don't need a doctor's diagnosis. The treatment is diet, so what do you care if your doctor proves to himself that you're sick. It doesn't change anything in terms of what he can do to help you.