Test Results

[Lillyth]

I got my tTG test results back - they say I'm negative, but I've been gluten free.

She (the doc) only did the tTG because she said the celiac would show up on that one, regardless of my consumption of gluten.

She also reiterated that the rash I have does not look like DH - if I had that it would be in little red clumps (which it was before I went off gluten), and that if I had DH it would be on my elbows.

"Good News!" she said, "It doesn't look like you have celiac."

That doesn't sound so good to me, because if it's not celiac, then I need to figure out what else out there could possibly give me all the symptoms of it - weight gain, distended tummy, excessive gas & bowel activity, extreme fatigue, and major break-outs on my back any time I use shampoo or conditiner with wheat in them.

I guess my questions are 1) do I need to be consuming gluten for the tTG to come back positive, and 2) if I don't have celiac, what the hell IS wrong with me?

TYIA

Lil

[Lillyth]

Someone, anyone?!?!

I looked on the site for info but couldn't find any.

Anyone, Bueller, Bueller?

[lonewolf]

If you've been gluten-free, your tests will come back negative. I've been wheat-free and mostly gluten-free for 10 years, and my doctor still thought I should have the whole celiac panel. At least she took me seriously, but she obviously didn't know what she was doing. I know nothing about DH - sorry I can't help you there.

It sounds like you already know you have a problem with gluten - your symptoms sound pretty convincing. Do you need a diagnosis for peace of mind? I thought I did, but figured out there was no way I was going to get it, so I just need to take care of myself.

[Canadian Karen]

Don't forget that even if you do not get the "official" diagnosis of celiac, you may very well likely be gluten intolerant at the very least. I think this is the "tip of the iceberg" they keep talking about, the tip that is showing is the actual celiac cases being diagnosed, but the whole huge iceberg underneath the water is all the rest of society that has a problem with gluten or not diagnosed celiac yet......

I still think the best test is the gluten free diet. If you have a positive response to the gluten-free diet, then you have your answer regardless of what the tests say......

Hugs.

Karen

[LaurieAnn13]

I would agree, if you seem to be benefiting from the gluten-free diet then stay with it. Your body is your best indicator. A problem I've run into is how some doctors really aren't that educated when it comes to celiac disease. After all, look at EVERYTHING that can go wrong with the human body...doctors are only human, they can't know everything about everything! I've had doctors tell me that I don't need to completely cut it out of my diet and if I take a prescription that contains gluten, it's not really a big deal. Well, we all know that is not true! Also, celiac is such an "individual disease." I have had friends diagnosed with no other symptoms than blisters on their hands, or because they were told they had ADD and decided to seach out another explanation than accept that diagnosis. One of my many symptoms was a skin condition that no dermatologist could diagnose. I always got these big, circular, deep sores on my skin that would not go away for weeks, if not months at a time! Well, guess what...when I started the gluten-free diet, the sores went away! Unfortunately, I still have many scars from it that may never go away, but at least the sores did!! So if you have a rash that disappears with this diet, I say keep it up... Especially because no matter how knowledgable your physician is, medicine is in and of itself imperfect.

Good luck!

[Lillyth]

If you've been gluten-free, your tests will come back negative. I've been wheat-free and mostly gluten-free for 10 years, and my doctor still thought I should have the whole celiac panel. At least she took me seriously, but she obviously didn't know what she was doing. I know nothing about DH - sorry I can't help you there.

It sounds like you already know you have a problem with gluten - your symptoms sound pretty convincing. Do you need a diagnosis for peace of mind? I thought I did, but figured out there was no way I was going to get it, so I just need to take care of myself.

The main reason I want the DX is for tax reasons (I am a Realtor, which means I am an "independent contractor", therefore I itemize everything already.) As you all now, gluten-free foods are expensive, and living in a major city with a son who goes to private school, well, you get the financial idea. I know I can (as an independent contractor) write off anything as long as I have a prescription for it. (Which was the whole idea behind the DX in the first place).

Funny thing is I tried to tell the doc I saw (not my usual one) that my being gluten-free would effect the blood tests, which was why I wanted the test for DH in the first place. Surprisingly, (can you detect the sarcasm), the test came back negative.

I have regular conversations with my chiropractor (who sees me WAY more than my medical doc), and he says that just cutting out the wheat (not even ALL gluten), my body was 10x stronger within a week. (He also poked my tummy when I pointed out the distention, and he kept poking it, saying "what a trip", I've never felt anything like that" - meaning a taught tummy a good 6 inches out from my ribs). His basic thought is why go through the testing hassle when I know I have this medical condition - not to mention my IMMEDIATE body reaction to going off gluten. (Not that I necessarily feel that great immediately, but that my body is so much stronger when he tests it).

I have much more to say, but I am tired now - I will respond more tomorrow.

Thnaks for all the responses & for listening (reading)

Lil

[tiredofdoctors]

I say, if it works, keep with it. If you just have elevated antigliadin antibodies, you STILL have gluten intolerance. As Karen said, it is the tip of the iceberg. I had no idea that I had elevated antigliadin antibodies -- until I walked like I had MS and I kept falling. Had every test known to man and G-d performed on me until they realized that the gluten was destroying my cerebellum. I know that I'm a little "over the top" about gluten now, but I had no idea that it could do this to you. If being gluten free helps you -- stay with it. I agree, too that your levels could have gone down - if you don't expose your body to the poison, the levels are going to go down. Take care of yourself . . . . Lynne

The other thing that I thought about -- did they do a biopsy on the rash? If they didn't, even though it doesn't LOOK like the normal DH, how do they know it isn't?????

[Lillyth]

I say, if it works, keep with it. If you just have elevated antigliadin antibodies, you STILL have gluten intolerance. As Karen said, it is the tip of the iceberg. I had no idea that I had elevated antigliadin antibodies -- until I walked like I had MS and I kept falling. Had every test known to man and G-d performed on me until they realized that the gluten was destroying my cerebellum. I know that I'm a little "over the top" about gluten now, but I had no idea that it could do this to you. If being gluten free helps you -- stay with it. I agree, too that your levels could have gone down - if you don't expose your body to the poison, the levels are going to go down. Take care of yourself . . . . Lynne

The other thing that I thought about -- did they do a biopsy on the rash? If they didn't, even though it doesn't LOOK like the normal DH, how do they know it isn't?????

They wouldn't even do a biopsy. That was why I went in the first place. But that's Kaiser for ya - anythng to save money...

But I will be seeing my normal doc next month & I will be sure to raise high holy h--l to get the biopsy done. If I make it more expensive for them not to - meaning emotionally & energetically expensive...

I will let you all know how that goes...

Lil