Ok, Now What!?

[mythreesuns]

After reviewing my bloodwork, stool tests, and biopsy, the GI doc just told me there's no chance I could have celiac or gluten intolerence.

PLUS, he said all the auto-immune diseases my primary doc is checking me for won't cause the diarrhea! But he did say it could be ulcerative colitis, which is also an auto-immune disease.

He's recommending that I come in for a colonoscopy.

[queenofhearts]

The colonoscopy is a good idea just to rule out other issues, but there is no-one stopping you from pursuing the gluten-free diet if you think it might help. In my opinion, it's worth giving it a serious try for several months, & evaluating your response. The beauty of this diet is that it doesn't have to be prescribed, & it can be a very healthy diet, so there is really no downside (aside from the hassle of checking ingredients &c.) to trying it.

[elonwy]

My GI insisted there was no way I had celiac disease, since my blood work, though positive, was low, and my biopsy was inconclusive. "no gross evidence of sprue" whatever that means. I went gluten-free the day after the endoscopy, and came back to discuss results two weeks later, and you could SEE the change in my face. I went militantly gluten-free though, to the point of throwing or giving away all my cosmetics and personal products and buying new ones, etc, etc. He reviewed my chart and finally apologized and changed the diagnosis.

My mom tested negative, but went on the diet anyway and had great results. We found out last week they did the wrong blood tests! She's not going to challenge.

Elonwy

[mythreesuns]

Ugh! So then, how do I know??????

I'm planning on staying on the diet (despite continuing diarrhea, though not as bad as before) at least until the rest of the tests are in (Lupus, Lyme, RA, colonoscopy, etc.) because if it DOES turn out to be celiac I don't want to lose that time getting gluten-free. Oh, and if it DOES turn out to be something else I'm eating a whole pizza.

But still....I thought I was close to having an answer and the dr just blew my bubble.

[oceangirl]

Ugh! So then, how do I know??????

I'm planning on staying on the diet (despite continuing diarrhea, though not as bad as before) at least until the rest of the tests are in (Lupus, Lyme, RA, colonoscopy, etc.) because if it DOES turn out to be celiac I don't want to lose that time getting gluten-free. Oh, and if it DOES turn out to be something else I'm eating a whole pizza.

But still....I thought I was close to having an answer and the dr just blew my bubble.

Toni,

I had low positive bloodwork after 4 months mostly gluten-free and an inconclusive biopsy and NO diagnosis from the Gastro! Hmmmm..... I haven't gone back to talk with him because I went through Enterolab to confirm I'm gluten intolerant. But I have been meaning to let him know there's a whole range of gluten reactions and he missed the boat. Have the colonoscopy and other tests, but don't give up on gluten-free! After being sent away from doctor after doctor since I was 13 with the stupid IBS diagnosis, I know how you feel to finally think you're going to get a definitive answer and just end up with the same old band-aid diagnosis! But, ultimately, you must trust yourself and your gut! Best of luck to you.

lisa

[bklynceliac]

I had a GI say the same thing to me, even though the gluten-free diet was the only thing that helped me. Then a week later I saw a PCP who said "Don't listen to other doctors. Do what makes you feel better." It's good advice. I followed it and I'm happy I did. You should definitely go in for the colonscopy as there could be other problems lurking, but if that comes back negative and you're still sick, give the diet a try. I think deep down we all know what feels right for us, the trick is listening to it.

[ravenwoodglass]

Ugh! So then, how do I know??????

I'm planning on staying on the diet (despite continuing diarrhea, though not as bad as before) at least until the rest of the tests are in (Lupus, Lyme, RA, colonoscopy, etc.) because if it DOES turn out to be celiac I don't want to lose that time getting gluten-free. Oh, and if it DOES turn out to be something else I'm eating a whole pizza.

But still....I thought I was close to having an answer and the dr just blew my bubble.

I know it's frustrating. I was told over and over again after tests that nothing was really wrong and everything was in my head. It wasn't until after a while on the diet that I really believed it myself. After all how could an allergist figure out what was wrong when all these other specialists were just telling me to live with my pain and handing me pills and telling me to prepare my home and myself for a wheelchair. I am glad you are going to stay with the diet for awhile. If and when you do challenge it though please just have 1 or 2 slices of that pizza. When I did my challenge I went 'whole hog' for a couple of days and when the reaction hit it was so severe my intestines bled. That morning was the same one where I was supposed to go for my biopsy. Needless to say it was canceled and the doc diagnosed celiac without it. Have you thought about going with Enterolab? Their tests are the most reliable out there and especially if you suspect you may have other intolerances may be the way to go.

[mythreesuns]

If and when you do challenge it though please just have 1 or 2 slices of that pizza. When I did my challenge I went 'whole hog' for a couple of days and when the reaction hit it was so severe my intestines bled.

Have you thought about going with Enterolab? Their tests are the most reliable out there and especially if you suspect you may have other intolerances may be the way to go.

Hee hee.....yes I know. I was just joking, trying to look for some light at the end of this dark tunnel.

I would LOVE to go to EnteroLab for testing (for everything, not just gluten) but there are two things stopping me. First, of course, is the money. I'll only be able to do it if DH gets a full-time teaching job, and as its nearing the end of August, that's looking less and less likely. He is waiting to hear about one job, but if that falls through we're still broke.

Second, I know I have a limited perspective reading about EnteroLab on a celiac message board, but does EnteroLab ever say someone DOESN'T have gluten intolerence or celiac? Stupid thought, but it just occurred to me today that I've never read anyone post about negative results. Which is REALLY stupid given that they wouldn't stick around if they DID turn up negative. Duh.

Anyway, thanks everyone for your insights. I'm definitely keeping up with the diet at least until I get some definitive diagnosis, of celiac or otherwise. It has helped *some*. A little. But it's still early.

[Ursa Major]

Actually, yes, I have heard from several people about negative test results from Enterolab. Carla had two of her daughters tested by them, one came back positive, the other negative. I remember somebody else, but can't remember who it was.

I am not officially diagnosed either, and don't care. I know what I know. Doctors have failed me all my life, I've always been my own doctor when possible, this is no exception. Listen to your own body. I agree that it's a good idea to go through with the colonoscopy, now that it's scheduled, to rule out other things, though. But staying on the gluten-free diet is still a good idea, you don't need anybody else's permission to do that.

[CarlaB]

As Ursula said, one of my daugthers was positive for it, the other negative. I was positive. I did the tests because the GI doc found nothing. I look so different gluten-free that we just moved to a place we live three years ago and people don't recognize me. One friend, a 25 year old man (and you know how oblivious men can be to catching on to small changes in people) was amazed and talked about how different my face looked. He couldn't pinpoint what it was, but it was definately different. Now I see old pictures of myself and see what everyone is talking about. Much less "puffy", more clearly defined jaw line, no bags or dark circles, better color, etc.

The diet is the best indicator, even Enterolab says that. If you don't get better off gluten alone, try eliminating dairy as well. I believe it was Enterolab's website that said about 50% of people intolerant to gluten are intolerant to casein as well.

[Guest nini]

my daughter's gi insisted she absolutely didn't have celiac that there was no way blah blah blah it was only IBS blah blah blah... despite the fact that mom(ME) had a positive dx of it, he refused to consider it at all. Fortunately her pediatrician supported me on trying the diet with her to miraculous results! And now that she's the healthiest kid around, NO ONE questions her dx based on positive dietary response. So NYAH NAH to Dr.s that think they know everything and refuse to consider it.

stay gluten-free for a while, (give it at least 6 months before you decide if it's helping or not) in the mean time you can still pursue other testing if you feel the need, and keep in mind especially if you've been ill for a while, it may take a while for your immune system to respond to the diet. (This is why I say at least 6 months) and most people take an average of 2 years to start to really feel better. Some are lucky and feel better almost immediately, and others it takes a while and there may be other food intolerances to consider as well.

[mythreesuns]

As Ursula said, one of my daugthers was positive for it, the other negative. I was positive.

The diet is the best indicator, even Enterolab says that.

If you don't get better off gluten alone, try eliminating dairy as well. I believe it was Enterolab's website that said about 50% of people intolerant to gluten are intolerant to casein as well.

Thanks, like I said it was a stupid assumption, given that people who tested negative most likely wouldn't bother with a gluten free diet (thus go looking for support on this website).

I'm still too early into the diet to know if it's helping. It's been less than a month. The diarrhea is different now, though. The days I have it...I HAVE it. But it's not every day now. 2 or 3 days a week, more or less. Less bloating, too. Still gassy sometimes. That's something, right?

I started this quest by eliminating dairy. I've been dairy free a month or so longer than I've been gluten free. I saw great improvement right away, then it got worse than BEFORE I eliminated dairy.

Thanks for all the comments. After I hung up with the dr I started thinking my mother was right and I WAS a hypochondriac.

[CarlaB]

It takes time, as nini said, to get better. I'm 8 months gluten-free, about 2 dairy free, and still sick. I have good days and bad, and overall I'm getting better, but I have a ways to go.

[Ursa Major]

It takes time, as nini said, to get better. I'm 8 months gluten-free, about 2 dairy free, and still sick. I have good days and bad, and overall I'm getting better, but I have a ways to go.

Yes, me too. I've been gluten-free for ten months now (lectin free for a little less, and salicylate low for seven months), and I have ups and downs. But mostly, I am a whole lot better than I was. I also found out about celiac disease relatively late in life, and may not heal completely. But I expect it will be years before I will know how far the healing will go.

[Nancym]

Second, I know I have a limited perspective reading about EnteroLab on a celiac message board, but does EnteroLab ever say someone DOESN'T have gluten intolerence or celiac? Stupid thought, but it just occurred to me today that I've never read anyone post about negative results. Which is REALLY stupid given that they wouldn't stick around if they DID turn up negative. Duh.

Yeah, you can search the message forums near and find quite a few people who were negative.

He says about 70% of the random people he tested when he was first researching the procedure are negative.

100% of confirmed by biopsy celiacs (with villious atrophy) are caught by his test. And then there's the other 29% of us that have the antibodies to gluten in our gut but haven't progressed to the point of illness that full blown celiacs do. The problem is, right now the disease is only caught at the far, far end of the spectrum. That would be unacceptable for cancer. It'd be like diagnosing it two weeks before you died.

Anyway, that so many people have antigenic reactions to wheat is not something that is easily digested (so to speak) for a society that has it as a staple. Some truths are just bloody inconvenient.

Here's an essay he wrote: Open Original Shared Link

And this is Dr. Fine's resume: Open Original Shared Link

Can you tell I love this man to pieces for what he has done and is doing?

[CarlaB]

Yeah, you can search the message forums near and find quite a few people who were negative.

He says about 70% of the random people he tested when he was first researching the procedure are negative.

100% of confirmed by biopsy celiacs (with villious atrophy) are caught by his test. And then there's the other 29% of us that have the antibodies to gluten in our gut but haven't progressed to the point of illness that full blown celiacs do. The problem is, right now the disease is only caught at the far, far end of the spectrum. That would be unacceptable for cancer. It'd be like diagnosing it two weeks before you died.

Anyway, that so many people have antigenic reactions to wheat is not something that is easily digested (so to speak) for a society that has it as a staple. Some truths are just bloody inconvenient.

Here's an essay he wrote: Open Original Shared Link

And this is Dr. Fine's resume: Open Original Shared Link

Can you tell I love this man to pieces for what he has done and is doing?

My biopsy was not positive (negative does not rule out celiac), but I was very ill. My daughter who came out positive was a "low positive" compared to me, but she would have eventually gotten as sick as I was. She understands she's fortunate to have caught it early and is as dilligent with the diet as I am even though she has very minor symptoms. Her main motivation is seeing how sick it makes me and not wanting to be like me in that regard.

[rutland]

Ive been gluten free for a month and I see some improvments but I keep hoping to wake up one morning and find that I am vibrant again! It just scares me because I will be going to nursing school in the spring and I need to be in good shape. Brain fog, anxiety and poor concentration are some of my issues so Im eager to get well.

I havent been officially diagnosed because I couldnt find a doctor willing to listen to me and since Ive been gluten free and dont plan to go back. I have no chance of being diagnosed under the medical model. However I did look into enterolab as well. The only problem is I dont know if its worth putting out the money if I already know in my heart that gluten is a poison to me.

[justjane]

Ive been gluten free for a month and I see some improvments but I keep hoping to wake up one morning and find that I am vibrant again! It just scares me because I will be going to nursing school in the spring and I need to be in good shape. Brain fog, anxiety and poor concentration are some of my issues so Im eager to get well.

I havent been officially diagnosed because I couldnt find a doctor willing to listen to me and since Ive been gluten free and dont plan to go back. I have no chance of being diagnosed under the medical model. However I did look into enterolab as well. The only problem is I dont know if its worth putting out the money if I already know in my heart that gluten is a poison to me.

I would still do it because if you are still ill even going gluten-free, you could find out if you had a casein intolerance or soy intolerance as well. You would then know what to avoid and that is crucial to getting better. It is expensive, but I feel very worth it.

[azmom3]

I had the same thoughts about Enterolab...seems like everyone's diagnosed and nobody comes back negative. My husband made a good point....The majority of people going to Enterolab already suspect they have some sort of intolerance and/or celiac, so the chances that these people would be diagnosed would be a lot higher than just random testing. I'm going to use them as soon as we can scrape together the money. We'll at least start with the basic stuff and can always test for other stuff later.

[e&j0304]

My son tested negative through enterolab. My dd was positive. My husband and I have not been tested. Hope that helps!

[CarlaB]

One of my daughters tested negative at Enterolab. I think it's true that most who test there are already pretty sure they have it, so most you hear about, especially those who stick around a celiac message board will have had positive results!

[mellajane]

I also have all negative test results but have been gluten free for two years almost. This has been the only thing that has worked. When is enough a enough? I recently gave my Dr.s opinion the benefit of the doubt. They stating we should go through all the testing again.....I did it. The gastro dr. who did my colonoscopy read my history and asked why are you here for a colonoscopy if the diet has worked this long...HMMMM I am wondering the same thing. He gave me a 95% chance of negative results before the testing. Came back negative and was advised to stick to the diet. This disease is to new to the medical field and very hard to diagnose. If you have not gone on a gluten challenge yet try for a month. You will notice a difference the first week.In my research I have realized that gluten allergy causes more bowel symptoms. I am opposite I get very sick like throwing up for days....this is a wheat allergy. I do avoid both at all cost. Good Luck. Mella Q.

After reviewing my bloodwork, stool tests, and biopsy, the GI doc just told me there's no chance I could have celiac or gluten intolerence.

PLUS, he said all the auto-immune diseases my primary doc is checking me for won't cause the diarrhea! But he did say it could be ulcerative colitis, which is also an auto-immune disease.

He's recommending that I come in for a colonoscopy.

[KaitiUSA]

Doctors are full of it sometimes when it comes to celiac. Listen to your body. Every test in the book can come back negative but you can still have a problem with gluten.

[moonunit]

I'm sorry to hear you're not getting help from your docs! It is true that not everyone who thinks they have celiac disease/gluten intolerance necessarily has it, but there are a LOT LOT LOT of people who are told by doctors that they don't have it when they clearly do.

My tests (Enterolab, blood work through regular doc) keep coming back positive and the doctors still tell me gluten isn't the issue. Even while holding their own test results with numbers in the positive range in their hands.

I agree with the others. I hate to say it, but with this disease, we have to be our own guides as to what is right. Someday the medical community will catch up with us, but we can't afford to wait until then.

[AndreaB]

Second, I know I have a limited perspective reading about EnteroLab on a celiac message board, but does EnteroLab ever say someone DOESN'T have gluten intolerence or celiac? Stupid thought, but it just occurred to me today that I've never read anyone post about negative results. Which is REALLY stupid given that they wouldn't stick around if they DID turn up negative. Duh.

My husband tested negative out of our family but does have two celiac genes. See sig...I only listed what was over normal according to enterolab.