Still Angry Sometimes After 2 Years

[beebs]

I would just like to point out this thread that couldn't have come at a better time - this woman had two negative biopsies and has just had a positive one 6 weeks ago! They are NOT reliable, its not black and white at all. Much like the ASD spectrum, not black and white!!

I had negative bloods - I haven't had an endo but the Paed GI said there is no way my symptoms aren't celiac - no diagnosis though. But if I eat gluten I can die from it - no black and white I tell you!!

[ravenwoodglass]

I had negative bloods - I haven't had an endo but the Paed GI said there is no way my symptoms aren't celiac - no diagnosis though. But if I eat gluten I can die from it - no black and white I tell you!!

I had negative bloods also but when the second challenge ordered by my GI left me bleeding on the bathroom floor I was given an 'official' diagnosis of celiac. Some here would call me gluten intolerant because of those negative bloods and because I didn't have an endo but my doctors know that gluten for me is a very serious issue. I am celiac and was celiac since childhood.

People with DH are diagnosed celiac even if they have no gut damage at all, they are not called gluten intolerant. So that blows the 'not celiac cause no villi damage' thinking right out of the room. In the end it doesn't matter what label we have, it doesn't matter what body system is impacted the most it matters that gluten is poison to us no matter what label someone chooses to put on it.

And yes I am still very angry at the doctors who took so long to diagnose me. If they had done it sooner perhaps a little bit of CC wouldn't leave me wiped out with a three day GI bleed like I have been dealing with for the last 3 days. While the anger doesn't control my life it does make me sad when I think of all I lost for the sake of doctors who trusted those blood tests like they were absolutes and never even told me what the 'sprue' they were testing me for over and over was. If I had been diagnosed sooner perhaps that a bit of CC wouldn't leave me breathless, bleeding and needing to have a phone with me for hours in the bathroom wondering if I am going to survive.

[Di2011]

I have no diagnosis.

I just call gluten "my poison". I don't care what others want to call me or my condition or my reaction or my recovery. When others need some excuse/understanding for my appearance (DH all over) then I tell them I have a "problem with gluten".

I've had a long list of non-skin related (including GI issues) that have resolved gluten free that I had thought must be "normal". Some I know now would have become very serious very soon (it was getting to that point) if I hadn't worked in a bakery and fortunately developed head to ankle DH.

Knowing what it is six months later - I know what my poison does to me. I don't much care for anything official right now probably ever. I just hope that people that have "it doesn't feel right" in their head/body go with the feeling. If it doesn't feel right and medical professionals and meds don't seem to help or feel right, they probably aren't.

[saintmaybe]

Yet another reason why trusting biopsy results would be misguided at best. In the U.S. at least, they're rarely performed correctly!

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Biopsies are only performed with the correct number of samples taken about 30% of the time. When they are performed with four or more samples, the rate of diagnosis of celiac disease increases *sevenfold.* That is just plain ignorance, malfeasance. I don't even have the words for how angry that makes me.

There is no reason whatsoever that a GI specialist should not be able to perform an endoscopy correctly. This is 2011, and this is barbaric.

[Leper Messiah]

I agree, they're pretentious know-it-alls!!

Experienced or not...you're are very lucky indeed if you've not experienced the inadequacy of modern medicine. Otherwise I would suggest your symptoms can't be that bad! Mine make me feel like death and not one doctor has eased that, in fact they have prolonged mine substantially. If I had been accurately diagnosed I could saved 10 years of suffering which started off light but is now at the point where I struggle to have any quality of life, basically dragging my sorry behind to work and then back to bed/the sofa as soon as I can.

The purpose of this forum to me is to provide the support and guidance that should be provided by the medical community....it's a sad and frankly disgusting irony.

[Celtic Queen]

There is no reason whatsoever that a GI specialist should not be able to perform an endoscopy correctly. This is 2011, and this is barbaric.

I totally agree. My GI was an arrogant idiot more interested in taking my money than helping me. I told him during our initial appointment that I hadn't been eating gluten for 4 weeks. He still ordered a colonoscopy, endoscopy, and biopsy. At that point I hadn't found all the intelligent people on this board who would tell me that it wouldn't do any good to have all those tests run since I'd been off the gluten. So when the tests were run, I'd been off of it for 6 weeks. And of course, everything came back fine. And I don't even know how many samples he took.

When the nurse called to tell me that the biopsies were fine, I asked about a follow up visit. She said, "But everything is fine." And I explained about not eating wheat before the test and that I still had a positive Celiac panel. She said she would check with him and would get back to me. She even metioned that the whole office had attended a presentation about gluten intolerance the day before and how she had learned so much.

Another nurse called back and said the doctor didn't want to see me again. I explained to her, yet again, about the positive blood work and how the diet affected the test. I said that I would have gone back on gluten if I had known it was going to affect the test. She mentioned that they wouldn't have allowed that because that would be cruel. Okay, how else are you going to diagnose me again.

Twice I tried to get the doctor of follow up with me and twice he refused. Now I'm out $1,100 of my money for a test that is basically worthless. I can't even begin to tell you how mad that made me. I did make sure to tell my GP, the one who had referred me to this idiot. She was pretty upset. So maybe I helped someone from her practice getting stuck with this guy in the future.

I've learned so much more from everyone here on the board than I have from any of my doctors.

[beebs]

Nope - I still want a diagnosis. I mean- lets face it Gluten intolerance is treated like lactose intolerance by the general public - no matter how bad it makes you feel. Some people have life threatening reactions to eating gluten one time - ravenwood - myself, and when I say things like "Gluten makes me sick, gluten intolerance, gluten free" I can see how peoples eyes glaze over and they are not (including medical professionals) taking me seriously. And at restaurants if you say "Do you have gluten free" and they go "errmmm, yeah, yes, yes we do" and I think - WTF?? I could literally die on your floor if you give me gluten. It just makes me want to scream!

Part of my other reasons for wanting a correct diagnosis - is that it was literally a no brainer, family history, positive genes, severe symptoms - but because a GP lied to me and said my genes were not the right ones no one ever went down the path of celiac. Part of the anger is the ignorance surrounding Celiac testing - and it will only change if enough of us are angry about it.

Another reason - I may be torturing myself - but is the reason for all my other autoimmune crap because I was undiagnosed Celia so long?

And my very last reason for wanting a diagnosis - is what if I am wrong. What if it is not gluten? Ok - so the very last time I had a meal with gluten in I ended up in emergency with intussusception - but what if that was a fluke. And then I am scared and worried about food all the time for no reason!! I am not one of those who likes Gluten free, I doubt I'd keep to it if I didn't get so bad with it. If it was just a little intolerance I would probably fudge it here and there.

[pricklypear1971]

And my very last reason for wanting a diagnosis - is what if I am wrong. What if it is not gluten? Ok - so the very last time I had a meal with gluten in I ended up in emergency with intussusception - but what if that was a fluke. And then I am scared and worried about food all the time for no reason!! I am not one of those who likes Gluten free, I doubt I'd keep to it if I didn't get so bad with it. If it was just a little intolerance I would probably fudge it here and there.

I so get this.

I had no Celiac antibody testing - my ND assumed "gluten intolerance" instead of Celiac because I had no gastro symptoms and was dx'ed with Hashis and "felt bad from thyroid stuff". She thought my rash was ringworm...

Good news, she quickly recognized the mistake. Bad news is the window has passed.

Sometimes I wonder...can I eat a bit of this or that? Then I look at the pics of my rash, and look at the latest round of rash (barely at all) and I know the ONLY thing missing in my life is GLUTEN. No gluten = no rash, and better health.

You're right though, unless the gluten challenged DO something, better and more accurate and widespread dx will NOT happen.

[beebs]

I forgot the most important reason for me to get a diag! You will only be able to get the vaccine when it comes out (In Australia) if you have been diagnosed via biopsy - otherwise it is tough luck. Now - I know that lots of people don't want to have it and that is great. But truth be told - every time I am out of the house - I bite into something and think "is this the day where it all ends for me" It is very stressful - I hate it. I just want to be able to eat again without being scared of dying, not asking much!?? haha!

[pricklypear1971]

I forgot the most important reason for me to get a diag! You will only be able to get the vaccine when it comes out (In Australia) if you have been diagnosed via biopsy - otherwise it is tough luck. Now - I know that lots of people don't want to have it and that is great. But truth be told - every time I am out of the house - I bite into something and think "is this the day where it all ends for me" It is very stressful - I hate it. I just want to be able to eat again without being scared of dying, not asking much!?? haha!

Okay, WHAT vaccine?

[beebs]

They are in clinical trials here in Australia - seems to be going well .

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09/05/11

Coeliac disease vaccine shows promising results in Phase I trial

The world

[beebs]

Arrghh = I just read that it'll only work with bloody DQ2 - arrghhh!! Where is the little emoticon that hits itself in the head with a hammer!

[sandsurfgirl]

My concern with a vaccine would be that they are only looking at resolution of GI symptoms.

Personally I wouldn't quit being gluten free because of a vaccine, but if it could lessen the impact of getting glutened that would be great.

Saying that celiac affects 1% of the population makes me say "ARRRGH!" One percent is diagnosed but everything I've read says it's probably more like 10 to 30%.

[pricklypear1971]

And is it effective against DH?

I'm half dq2, half dq8. Wonder if it works on half genes?

[beebs]

I am the same ssg (can I call you that - Even if I had the vaccine, it wouldn't mean I would eat gluten again - just that I won't have to be scared if I did get glutened!

[beebs]

And is it effective against DH?

I'm half dq2, half dq8. Wonder if it works on half genes?

Wouldn't it be which one of your genes was the one that was triggered, which they still can't tell can they? So if its your DQ8 it wouldn't work but if it was your DQ2 it would...Complicated!

[pricklypear1971]

Wouldn't it be which one of your genes was the one that was triggered, which they still can't tell can they? So if its your DQ8 it wouldn't work but if it was your DQ2 it would...Complicated!

My dq2 is clearer, does that make sense? The dq8 is a translated gene.

I still wonder about the dh, and neuro issues...and does it stop the autoimmune cascade?

[Katrala]

My concern with a vaccine would be that they are only looking at resolution of GI symptoms.

From my understanding, the goal of the vaccine is to make it so the body no longer attacks itself (the lining) when gluten is present.

Saying that celiac affects 1% of the population makes me say "ARRRGH!" One percent is diagnosed but everything I've read says it's probably more like 10 to 30%.

Which studies mention this percentage as an estimate for celiac disease?

[saintmaybe]

It sounds like the vaccine is developed on an antiquated or limited understanding of the spectrum of celiac and gluten intolerant symptoms. Perhaps.

If it stops the body from attacking itself, in whatever capacity, in response to gluten, great! If it's only addressing the intestinal response, well, that's not so helpful for the thousands of us whose primary and *first* symptoms were neurological or "Other", even if we did go on to develop more traditional symptoms of the disease.

[beebs]

If you read up about it, it says that it is dealing with the immune response. Says nothing about the type of symptoms, but that it is similar to what they do to desensitise people who are allergic to things.

[saintmaybe]

If you read up about it, it says that it is dealing with the immune response. Says nothing about the type of symptoms, but that it is similar to what they do to desensitise people who are allergic to things.

Eh, I'm not holding my breath. Phase II is a long way from Phase IV, or on the market. Lots of products stall out in III or IV. Let alone getting through the FDA approval process here in the U.S. which is fraught with politics.

Aside from all of which, it sounds like a weekly injection. Thanks but no thanks. I'm not giving the pharmaceutical industry one more red cent than I absolutely have to for something that seems very intrusive and time consuming. Since I can just...not eat gluten, I'm gonna go do that.

[pricklypear1971]

This is why I ask....

https://www.celiac.com/articles/21880/1/Is-Gluten-Sensitivity-a-Neurological-Disease/Page1.html

I assume it would help with DH (iga is an autoimmune reaction).

[beebs]

Wow - what an interesting read prickly - especially about the 53% who felt better on the diet with no elevated anitbodies or gut damage! I know gluten intolerance is very real -but that means it is very very, common also!

I would feel much the same saintmaybe - re the vaccine, if I could guarantee that I never got glutened again Does sound invasive and its a fair while off - but it still gives me hope!

[ravenwoodglass]

Aside from all of which, it sounds like a weekly injection. Thanks but no thanks. I'm not giving the pharmaceutical industry one more red cent than I absolutely have to for something that seems very intrusive and time consuming. Since I can just...not eat gluten, I'm gonna go do that.

But think of all the $$$$$$ the pharm companies could make off this!!!! Would kind of make up for all the money they lose when we go on the diet. They lost thousands off me alone in the last 9 years since I no longer have to take the 5 different and very expensive meds that I had to take before diagnosis just to get painfully through the day.