Suspecting CD - Is a diagnosis worth it???

raelara · Joined: 03 Apr 2006 Posts: 8 Location: Berkeley, California

I have had problems with my stomach for years: very gassy, often having stomach pain, constipation all my life, the list goes on. I was told a few years ago that I might have Chronic Fatigue Syndrome and some food sensitivities (as well as being allergic to every chemical on the planet). Just recently I found out about celiac disease and read up on it only to find out that my food problems, as well as my "CFS", constipation, and multiple other issues could be simply celiac disease instead of being a number of separate situations. I have a friend who has celiac disease and asked her about diagnosis and she said that the tests are so often not sensitive enough that it was not worth it to try and get a diagnosis yet everything I read says otherwise. It's confusing and I don't know what to do now. I have been off gluten for a week and feel a lot better (although symptoms return when I eat sugar so I know I need to cut that out too). I don't really want to go through the agony of going back on gluten, eating enough to make me sick again, and then trying to find a doctor only to be told once again that there is nothing wrong.

I am also wondering if celiac disease can mimic something like Polycystic Ovarian Syndrome. I have been told that I have that as well but am wondering if it is a misdiagnosis as well. I have a lot of the symptoms but none of the fertility issues and it seems to me that insulin resistance could also be simulated by the problems of celiac disease. What do you think?? Any advice and/or opinions would be truly appreciated.
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Jenni Sherriff
Mommy to Ayanna - 5/26/05
Aspie, PCOS, and Suspected CD

cruelshoes · Joined: 23 Sep 2005 Posts: 2152 Location: Washington State

Jenni - welcome to the board. I must respectfully disagreee with your friend. There has never been a better time for diagnosis with celiac. Doctors are becoming more aware, and testing is sensitive. No, it is not perfect, but it is getting better. I seriously question your friend's motives for telling you this. I don't know any celiac that would tell someone not to get tested. Does she follow a GF diet religiously? Sounds like she is a bit ambivalent about her diagnosis.

The only thing I can see as possibly throwing a monkey wrench into the works is that you are beginning to avoid gluten. You must be consuming gluten in order to get a diagnosis. A week is probably not long enough to foul things up for a diagnosis, but I would encourage you to make an appointment with you dr. without delay. Ask for the full celiac panel. If the results are positive, you could proceed to an endoscopy.

As far as the PCOS goes, I don't know enough about that to say if it is linked to CD. I have read posts on other boards from other people that struggle with both, so clearly they can happen simultaneously in the same person. Is that considered an autoimmune disorder? Your chronic fatigue could certainly be linked to CD, due to malabsorption of nutrients. Have you ever been diagnosed with anemia or osteopenia/osteoporosis?

Let us know what other questions you have. None of us are doctors (nor do we play them on TV), but many people here have been through a lot and have done a lot of research.
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-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

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

yellowoctopus · Joined: 19 Sep 2005 Posts: 45 Location: Washington, DC USA

Hi: I had this dilemma (to diagnose or not) about a year ago and brought it up on this forum. Some of the folks here suggested that it is really for your own peace of mind. Since then, I have not made an attempt to diagnose but have been gluten-free for about a year now. I feel good about the decision to go gluten-free, even without the 'official' diagnosis.

I still plan to do a colonoscopy (endoscopy) in the near future, just to check to make sure everything is in proper working order.

Although I cannot give you advice, I hope that telling you my story can help you to make your own decision.

Also, if you haven't done so already, try searching this forum for diagnosis to see what other advices and suggestions were given.

Best of luck and be well

Fidissimus · Joined: 17 Mar 2006 Posts: 1411 Location: Portland, OR.

Besides piece of mind there are other implications to being diagnosed that you might want to consider.

1.) It will affect your medical insurance.
2.) You can write off a portion of the money you spend on GF Foods on your taxes. If you choose to do this w/out the diagnoses and get audited I hear you can get in a load of trouble... cause our lives aren't difficult enough - ha!
3.) Without an official diagnosis you cannot participate in any case studies, which may directly benefit you (and the rest of us later)

Personally I was never officially diagnosed and I wish I was. I had the blood panel come back inconclusive. At that point the doctor recommended I go GF. After day three of eating no gluten, the difference in how good I felt was so enormous I swore I'd never eat another bite of gluten again. I didn't find out until a few years later that in order to have a conclusive biopsy I needed to still be eating gluten. I can't do it. Cannot. No way. No how. I'm waiting for them to figure out to diagnose me without me having to re-poison my body. I know more information doesn't always make it easier to decide, but it does give you something to think about.
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Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, rice, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

NickisDragon · Joined: 06 Oct 2005 Posts: 330 Location: S.E. Michigan

Somewhere in this forum is a thread for Enterolabs, which tests for Celiac by fecal sample and genetic swabs and is done by mail. I understand that some insurance companies will pick up the tab if it's doctor ordered. It's about $500 to pay for on your own. You do NOT have to be GF at the time of this test. It was worth it for me to test and they were very accurate regarding the antibodies as well as the genetic flag--they also tested for dairy/casein intolerance. Good luck on your quest.
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The Love we withhold is the pain that we carry.
Nicki

B-Day: January 18
DX: October 2005

raelara · Joined: 03 Apr 2006 Posts: 8 Location: Berkeley, California

Is there a specific type of doctor that I need to see? I used to see an internist regularly but she has since moved out of the area. I could go back to the same clinic, I suppose, but if there is a certain type of doctor that would be best I would rather go that route.
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Jenni Sherriff
Mommy to Ayanna - 5/26/05
Aspie, PCOS, and Suspected CD

The Edifying Conscience · Joined: 29 Aug 2005 Posts: 2262

Generally, a gastro is the type of doctor one would see for diagnosis of CD.

For me, there is no way that I would/could follow this diet if I wasn't 100% certain that I had CD. Thus, I would strongly encourage you to get the official diagnosis if at all possible.

Regarding Enterlob, Dr. Fine has never published and thus it's hard to determine if his form of fecal testing is at all reliable or accurate.

Regarding blood tests, the University of Chicago CD Program uses Prometheus labs for all of their CD diagnostic tests exclusively.

Yellow Octopus,
A colonoscopy is not used to diagnose CD. It is the endoscopy(goes down through the throat) that is used to determine if one has CD.

TEC

aklap · Joined: 02 Oct 2004 Posts: 7818 Location: WI, USA

I'm short on time right now, but wanted to post this. A chart in Sensitivity & Specificity for CD blood work...

http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=13&p_catid=2&sid=91hH9H1UO5BmCYH-57106342397.da

Prometheus labs CD Panel Info: http://www.prometheuslabs.com/212f.asp?nav=products

More info...

http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-pTesting.htm

I'll be back... Wink

_________________
Al

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

raelara · Joined: 03 Apr 2006 Posts: 8 Location: Berkeley, California

Don't know if anyone will read the end of this or not, but I have decided not to worry about a diagnosis right now. I have tried. Believe me. I have been to two doctors, both ones that I have been to before (an not gastroenterologists but I figured this didn't matter since I had a list of the necessary tests and know how to read the results) and neither of them would run the tests for me. I am so miserable forcing myself to eat gluten when I know that it makes me sick that I am deciding that my health comes before a diagnosis right now. Maybe one day there will be a way to diagnose without having to kill yourself eating gluten while waiting. I just don't feel like I can afford to wait a month or two until a doc I have never been to before feels like they can fit me in. I am on a waiting list for a PCOS clinic and maybe that doctor will have some ideas but after seeing two doctors in one week and being treated like an idiot by both of them, I am DONE!!!!!
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Jenni Sherriff
Mommy to Ayanna - 5/26/05
Aspie, PCOS, and Suspected CD

The Edifying Conscience · Joined: 29 Aug 2005 Posts: 2262

There is one other option that wasn't offered in the thread. You can order the celiac disease panel from Prometheuslabs.com and they will send you the kit.I believe the kit costs @$270. You take the kit to the doctor(any doctor, quick care, lab,etc) who will simply draw the blood and mail it back to Prometheus. Doing it this way you don't have to beg the doctor for the test, etc. Now, if you're lucky enough to have a Prometheus Lab in your neck of the woods perhaps you can just go there.

I reread the thread and just want to clarify or add my experience regarding a couple of points made by Jenn.
Jenn said "it (the CD diagnosis) will affect your medical insurance." I have found this not to be true. I have never been denied medical insurance nor have my rates increased since the CD diagnosis.

Jenn also said that "You can write off a portion of the money you spend on GF Foods on your taxes. If you choose to do this w/out the diagnoses and get audited I hear you can get in a load of trouble... cause our lives aren't difficult enough - ha!" I believe that it is much more complicated than it seems. Before anyone tries to deduct GF foods from their taxes I would strongly encourage seeing a CPA.
TEC

Fidissimus · Joined: 17 Mar 2006 Posts: 1411 Location: Portland, OR.

aklap · Joined: 02 Oct 2004 Posts: 7818 Location: WI, USA

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1395 Location: GF Kitchen

I wonder if it could affect your life insurance policies............after you get a diagnosis.
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Noatak · Joined: 13 Nov 2005 Posts: 482 Location: Massachusetts

raelara....there is one other way that would give you a definitive diagnosis of whether or not you DO have CD and that is the HLA testing. My information comes from a doctor who has CD herself. If there are no markers on the affected gene, then without any doubt, you do not have CD. However, if you have a marker, you have the pre-disposition for CD and it could rear it ugly head at any time in your life. Those that have the marker, according to this doctor, should absolutely go GF as people that are tested at a very young age that have a marker on the gene will not develop full blown CD if they follow a GF diet. I would tend to totally believe this as what better person for information than a doctor that HAS CD?

I never got the biopsy as my bloodwork was totally positive on all tests and I was so sick, I could not go one more day eating gluten to wait for a biopsy....that would only tell me what I already knew. The blood work is a diagnosis and I am convinced the only reason GI's demand a biopsy is they always have to see things with their own eyes, even though a person has positive bloodwork AND many symptoms. Plus, and I know this may rankle some people, they make alot of money doing biopsies. Medicine is a business, after all.

Luckily, my internist is not like that and after viewing my bloodwork, she looked at me and said, "You most definitely have CD!"

The HLA testing is bloodwork and is essentially a DNA test. You may have to pay for it yourself and you can decide how important this is to you. It may be a good option for those that have negative bloodwork with symptoms or questionable bloodwork. As far as I know, you do not have to consume gluten to have this done as gluten will not affect DNA...only your intestinal tract!

As far as deducting GF food costs, forget about it! You can only deduct the difference between GF and non-GF and quite frankly, you'd have to buy tons of GF stuff, plus have other out of pocket medical expenses to even come close. Medical deductions are 7 1/2% of your adjusted gross income before you can deduct anything...that's the threshold. This information is from my CPA and he's good at what he does! I do not save receipts anymore and I figure my good health is worth every penny I spend on food items.

Good luck to you and I hope you feel better soon!

raelara · Joined: 03 Apr 2006 Posts: 8 Location: Berkeley, California

Noatak: It is interesting that you see an internist since the last doctor to refuse to run the bloodwork for me was an internist. Her excuse was that "CD is not her specialty and she was concerned my insurance wouldn't cover the tests if they were run by her." I had a feeling that was bull at the time but your post just proved it for me. Then again, I should have known better than to go see her since I have had nothing but problems with her. After refusing to run the bloodwork I requested she started harping on my blood pressure (I quit seeing her before because she had me coming in every two weeks for about three months for that same issue -- without prescribing anything). The fact that it could possibly be related to the bloodwork I wanted run was completely lost on her. Apparently mine is just a moron. One more reason not to ever see her again.
_________________
Jenni Sherriff
Mommy to Ayanna - 5/26/05
Aspie, PCOS, and Suspected CD