All the symptoms...none of the positive tests

[C F Hixenbaugh]

Discovered by chance while dieting for weight loss that gastric symptoms disappeared when no wheat is eaten. Was told 22 years ago (during 1st pregnancy) that the itchy rash on my joints was dermatitis herpetiformis, but since it wasn't going to infect the other mommies, they left me to it and didn't mention a connection to CD.

Tremendous bloating, diarrhea,etc with wheat; fine without. Diagnosed 7 years ago with osteopenia (still not menopausal even at 50), had joint pain the MD said was arthritis...disappeared off wheat. No deformities of the joints. Kidney stones at 21.

Been off gluten strictly since October, only problems when I made mistakes and ate a won ton-wrapped potsticker or had blue cheese in a salad.

Antigen tests, of course, come back negative, endoscopy today came back clean...so MD has pronounced me "Just fine! No CD!"

Yippee. Now what do I do? Call him an idiot and jump in the middle of a pile of gluten, then have him do another endoscopy? He doesn't seem to have heard of a 'gluten challenge' or the possibility that because I've been avoiding gluten the tests might give a false negative. He's a gastroenterologist of some local reknown, which I find pretty scary.

I'm really depressed. I get so sick when I eat gluten and don't want to expose myself to it if no one's going to take me seriously.

Any ideas?

[aklap]

Hi Collen (hehehehe I saw you sign up under your 1st version of your screen name )

Welcome to the board!! Glad you stopped by.

Unfortunately, many are in the same boat as you. Me, in particular. None of my tests were positive. My dietary trials were enough to convince me to stay away from gluten. The medical community could offer no answers or help. It sounds like you have your answer already - it's just a matter of convincing yourself. By the resolve of many of your symptoms, it sounds like that might be sort of "easy". Sometimes convincing yourself is not always easy.

Do you know what tests your doc ran? Depending on what tests he ran it may not show gluten sensitivity - which you may have - not CD.

You could opt for testing thru Enterolab. Dr Fine is on the cutting edge and is not yet widely accept by mainstream medical. The big reason is that he has not published any data - yet. Many have gone GF because of his testing and have not looked back.

You ultimately have the power...YOU can decide what you do. You don't have to do a gluten challenge. If you feel better off gluten - make it so! People put themselves on diets for all sorts of reasons. I can't think of a better reason. I think you named 3 or 4

Here's some info for you:

Our Thread on Do We Need a Confirmed diagnosis? or Do I have to be Diagnosed.
Gluten Sensitivity - Before the Villi are gone
Celiac vs Gluten Sensitivity
GIG's PDF: Gluten Intolerance vs CD
More on Diagnostic Testing

You also might want to check out Our Path's to Gluten Free-dom Thread. These are stories of several members and how they came to be GF. This was another huge contributing factor in my going GF.

As for the connection of DH to CD...I suspect they didn't know. Many still don't know the connection.

I wish you well on your Knowledge Quest. If there's anything else we can do...just yell!!

Take care.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Kathie]

Just wanted to jump in an tell you that I was diagnosed with CD in 1988. This year I was having problems and having moved had to find a new doctor. I told him I had CD and he ran bloodwork (I don't know which tests, and for me personally I don't really care, didn't expect it to come back positive) and an endoscopy because I hadn't had one since diagnosis. Well when I went back in for the follow up he showed me the pretty pictures and basically told me he thought my problems were related to stress and there was no sign that I had CD, (except of course my old copies of the original reports). So according to him I AM CURED. Yeah, right. (Actually he didn't say cured, just that he wasn't sure I had CD, would I like some pretty pills to relax my mind and some other ones to stop the diarrhea and keep all that lovely poison locked inside my body?) I said no thank you, and he told me to come back in 5 years for another endoscopy. Hope he isn't holding his breath.

If you have to have a definitive diagnosis (some do) you will have to go back on gluten. For me I know what works and I don't really care too much what the doctors official diagnosis is. (most of mine have been wrong). Hope you keep feeling good, thats what counts.
_________________
CD by Biopsy 3/25/88

[Noatak]

Kathie...that was one of the funniest posts I've read in a long time and I'm NOT making light of your predicament or the treatment by this doctor. I just wonder why some find it so imperative to have a positive result on a test to convince themselves they have a form of CD or gluten sensitivity? I know you have the same attitude I do and I wish that for those who have negative results, trust what your own body is telling you and don't let anyone convince you that you don't have a particular problem when you clearly are on to something. Although my bloodwork was flamingly positive, that, coupled with my response to the GF diet and subsequent weight gain, convinced me beyond a doubt of what I had. Same as yourself. I just wish doctor's would open their minds up a bit and not always go by what comes back on a medical report!

I was happy to hear that CD can be cured though and happy that you have been......

[cruelshoes]

If you decide to do a gluten challenge, please read this article from Celiac.com first. It seems VERY risky to me.

http://www.celiac.com/st_prod.html?p_prodid=1281&p_catid=&sid=91hH9H1UP2djDgS-19106361234.46

Challenging the Gluten Challenge - By Dr. Ron Hoggan, Ed.D.

This article appeared in the Autumn 2005 edition of Celiac.com's Scott-Free Newsletter.

Celiac.com 01/11/2006 - There is an abundance of stories about people who begin a gluten-free diet, find that they feel better then decide they want a firm diagnosis of celiac disease. They are facing several problems. First, they may be gluten sensitive without the intestinal lesion of celiac disease. This is very likely since about twelve percent of the population is gluten sensitive, but only a little more than one percent of the general population has celiac disease. Another problem faced by gluten-free individuals who want a diagnosis is that it can take more than five years after returning to a regular gluten-containing diet before the characteristic damage of celiac disease can be seen on a biopsy1. Simply put, after beginning a gluten-free diet, only a positive biopsy is meaningful. A negative biopsy does not rule out celiac disease.

A variety of opinions have been offered regarding how much gluten, for how long, should result in a definitive biopsy. The reality is that no such recommendation is consistent with the medical literature1-4. Some people with celiac disease will experience a return of intestinal damage within a few weeks of consuming relatively small amounts of gluten. Such brief challenges are valuable for these individuals. However, many people with celiac disease or dermatitis herpetiformis will require much larger doses of gluten, over much longer periods, to induce characteristic lesions on the intestinal wall. Unfortunately for these latter individuals, a negative biopsy after a brief gluten challenge can, and often is, misinterpreted as having ruled out celiac disease. Blood tests can compound this problem. If, as seems likely, celiac patients who are slow to relapse are also the ones who develop milder intestinal lesions, they are the very celiac patients for whom blood tests are very unreliable5. Claims to have ruled out celiac disease based on brief challenges with small quantities of gluten is a mistake that could lead to serious, even deadly, consequences.

We may forget that gluten consumption by a person with celiac disease can lead to deadly cancers and a variety of debilitating autoimmune diseases. Any recommendation of a gluten challenge should be accompanied by a clear warning that the process may overlook many cases of celiac disease. The absence of such warnings is inexcusable.

And what about non-celiac gluten sensitivity? The absence of an intestinal lesion does not rule out gluten induced damage to other tissues, organs, and systems. Evidence and research-based information in this area is sadly lacking but we do know that undigested or partly digested gliadin can damage a wide range of human cells6. Thus, one need only be consuming gluten and experience increased intestinal permeability for gluten-induced damage to be a factor in an almost infinite number of ailments.

There are several partial answers to this problem. One, which I’ve raised before, is to employ Dr. Michael N. Marsh’s rectal challenge for the diagnosis of celiac disease, particularly when the individual has already begun a gluten-free diet. This test permits a definitive diagnosis of celiac disease for up to six months after beginning a gluten-free diet. That would catch a great number of celiac patients who have found relief through a gluten-free diet and now want a diagnosis. Another piece of this puzzle is to test for IgG anti-gliadin antibodies. Although these antibodies are considered “non-specific,” they inarguably identify an immune response to one of the most common foods in a regular North American diet. Although these individuals may experience improved wellness on a gluten-free diet, we just don’t know enough about non-celiac gluten sensitivity to do more than recommend that they continue on this diet since it makes them feel better.

Ron Hoggan is an author, teacher and diagnosed celiac who lives in Canada. His book “Dangerous Grains” can be ordered at Celiac.com. Ron’s Web page is: www.DangerousGrains.com.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[Kathie]

[Noatak]

OK....that last statement nearly did me in!

You (and I), plus many others are a doctor's biggest fear....a patient with knowledge who isn't afraid to question what they say. If I did everything they told me to do in the past, I'd be in bad shape by now. When I originally went to the GI for stomach problems, after a few tests (basic stuff) and not finding anything (no surprise there), she proceeded to whip out the RX pad to give me some acid reducer. I told her very nicely that I didn't come to get a pill, the pharmacy had plenty of those, but to find out what was wrong. I ended up switching doctor's she was so mad at me! It still seems bizarre to me I figured it all out, in desperation, and asked for bloodwork myself. I kept thinking of all those that won't speak up and rely heavily on MD's!

If I had known how many potential people are out there with CD who go undiagnosed for a long time, I would have bought stock in Immodium!

[Kathie]

[aklap]

[Kathie]

Ok I read the links (thanks Al) and respectfully disagree, it looks to me like gluten sensitivity IS celiac disease, caught before villi or severe damage occurs. Those really, really, lucky people. I guess we'll have to wait a few more years for the scientists to examine enough GS & CD guinea pigs and decide. Its all just a label anyway.

Like with type 2 diabetics, for years they would tell people (my mother and daughter) that they were pre-diabetic, meaning that they had certain symptoms (my daugther was symptomatic during stress or illnesses), a crappy family history and had a higher than average potential to eventually get diabetes and should adjust their diet accordingly but did not require any form of pill or insulin therapy. Now they don't call it pre-diabetic anymore, you are diabetic and how it is treated is determined by how much damage was done before they caught it or you decided to treat it.
_________________
CD by Biopsy 3/25/88

[aklap]

[lavelle1029]

If I just listened to what doctors said, I would have been officially diagnosed with a simple case of IBS a year ago (which stands for "It's Bull S***")
But because I didn't accept that, I had laparoscopic surgery last year and I was diagnosed instead with endometriosis.
For a year, I thought my gastro and fatigue problems were due only to the endometriosis, but since my 2nd laparoscopy a month ago, all the lesions were removed (there really weren't many) and yet I'm still having:
pain in my right side
fatigue
depression
worse pain after eating
diarrhea
hair falling out
achiness

I'm refusing to accept any doctor's roundabout way of saying "I don't see anything, you must be fine"
If you know something is wrong, you need to research and just push. You have to. I'm only 26, and I don't want this pain the rest of my life.

[The Edifying Conscience]

I fully admit that I haven't read the whole thread, but wanted to add that if you were definitively diagnosed with DH then you probably don't need a CD diagnosis. Can you get the medical records(for your own piece of mind) from the DH diagnosis?

If you have been following a GF diet for 6 months it's quite possible and likely that your blood tests/endoscopy were negatively scewed. In order to get correct results you would have to undergo a gluten challenge which means you would have to eat gluten for an extended period of time. I'm sure someone already mentioned this, but like I said I didn't read the whole thread.

If I was you I would try to find the DH diagnosis in the medical records.

TEC

[Professor]

[Kathie]