Waiting for test results and not convinced....

[GJ]

Hi--
I had a blood test for celiac five days ago, and am waiting for the results.

I have a question about my symptoms, which are:

* asthma
* low bone density
* very little tooth enamel
* teeth that are wearing down
* occasional skin sores on the back of my scalp
* a long history of irritable bowel
* anxiety
* some signs of ADD
* maternal aunt with diagnosed celiac

Does anyone know what might cause these things that isn't celiac? It's only within the past week that I put all these 'symptoms' together. Previously, I had considered celiac but my doctor was doubtful because my irritable bowel isn't severe and I don't fit the profile. I'm 42, male, 6'2", 195#, athletic and active.

(in my doctor's defense, I never mentioned the tooth problems to him, thinking it was a dental and not medical issue, and the low bone density result was found through a workplace health screening that I didn't think to share with him)

So--given that I'm in limbo waiting for the blood test results--does anyone have experience with celiac-like symptoms that weren't celiac? What else could it be? I have a feeling that any one of these things could be something else, and it's all just a coincidence that they're all happening together.

Thanks in advance.

[cruelshoes]

Hi, GJ. First off, we are not doctors. Don't take anything you read here or on any other forum as medical advice. All of those symptoms can be related to celiac. Could they all be related to some other condition(s)? Absolutely. That is what makes the bloodwork and (if indicated) biopsy such important steps in finding out what is truly going on.

What doctors are learning now is that there really is no profile for celiac. It presents in every patient very differently. The vast majority of people that are diagnosed do not present with the classic symptoms of "D" and weight loss. Many people are overweight, have no GI symptoms, and some have no symptoms at all, but are diagnosed as a result of unexplained anemia and bone loss. Low bone mass in an otherwise active, healthy male is a pretty big red flag for celiac. Your family history alone puts you at increased risk. Normal population risk is 1:133. As you have a second degree relative that has been diagnosed, your risk is 1 in 39. I am not saying all this to scare you. It is important not to rule celiac out because you don't fit the stereotypical swolen belly and "D" profile.

I hope you will post your test results when you get them.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[ostrich]

Hi GJ! First, I'm going to echo what cruelshoes said. We're not doctors, and we don't play them on the internet. You need to keep talking about this with your doctor.

That being said, it could be a few things:

1. Celiac
2. Related to Celiac. Some people have symptoms that "ripple" from the main problem. An example would be something like extreme fatigue.
2. A coincidence

Honestly, I would bring all this up with your doctor. Explain your worries. I would also suggest trying other tests/options. Not every problem your body has is related to CD. No matter what happens I hope you find the answers to your problems.
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[lbd]

And to add, if your doctor totally dismisses celiac (which he/she just might do), you can always do a gluten free trial and see how you react and if any of those symptoms go away. There is no harm to a gluten free diet, in fact, just the opposite.

My sister's doctor completely dismissed gluten sensitivity because her test results were negative for celiac. She has horrible IBS, arthritic pains, acid reflux, etc. I got the Enterolab tests for her, she sent them in, got positive results for gluten sensitivity and a celiac gene with antibodies to gluten and casein, went GF, and feels unbelievably better. Her gastro doctor still does not believe her, but she knows how she feels.

Having said that, you may also want to wait until you get the conventional testing done first. I did not go that route, preferring Enterolab instead, but most conventional doctors only recognize the standard celiac testing for diagnosis.

Laurie

[aklap]

Hi GJ,

Welcome to the board. Sorry to hear that you have to deal with all of this - it's not easy.

Could be CD, could be Non Celiac Gluten Sensitivity, could be a host of other medical issues.

The best place to start is by testing. When it comes to celiac disease testing, it might come back negative. This is not to say that gluten should be absolved of all guilt right away. Gluten can and does cause problems that will not show up on some celiac blood work or biopsies. Gluten can affect just about any other system in your body besides the gastrointestinal tract.

There are several gluten related conditions that exist without damaged villi [the gold standard diagnosis for CD].

Dermatitis Herpetiformis - the skin manifestation of CD. Not uncommon for DH sufferers to have undamaged intestines.

Gluten Ataxia - a neurological condition that affects the brain.

Non Celiac Gluten Sensitivity - many of the same symptoms of CD, but does not present with villi damage. This makes it harder to diagnose since CD testing generally looks for vilii damage.

Once all testing for CD has been completed...and..if you still have issues...doing a GF trial would be highly desirable. Of course, this does not mean you stop looking for other medical issues.

Here's some more info for you:
Our Thread on Info aimed at Medical Professionals
Our Thread on Celiac Blood Tests & More Diagnostic Info

Good luck in your knowledge quest. Please let us know how your test results come out.

BTW - My testing for CD [both limited blood work & biopsy] came back negative. Going GF resolved my biggest issues.
_________________
Al

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

[GJ]

Wow. Thanks for all the responses. You've given me a lot to think about. If the test comes back negative, I'm not sure I'll have the wherewithal to switch to a gluten free diet to see what happens.

One thing for sure is that I'll talk to my doctor and look further into the bone loss/tooth problems and to find out what other condition could be causing it.

[nancw]

[aklap]

[GJ]

[cardine45]

[celiacmaine-iac]

[Home-Based-Mom]

GJ, it's really easy to obsess about gluten being everywhere because it is everywhere.

At church the teenagers are eating donuts and touching everything without even realizing it. Toddlers eat cookies, crackers, goldfish, and who knows what else and touch everything.

Out in public, every escalator rail, ATM pad, and piece of money has been handled by someone who ate gluten (sandwich, pastry, whatever) and did not wash their hands after they ate it.

Wash *YOUR* hands often and just realize and remember the stuff is everywhere. You cannot change their behavior so you have to change yours. As everyone else says, the diet and the precautions soon become second nature. It's just what you do, and most people don't even notice!
_________________
Sandi ~ learning to live in a world obsessed and infested with wheat.
"If it wasn't food 100 years ago, it isn't food now." Mike Huckabee
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[cruelshoes]

[GJ]

I called the doctor and was told the results aren't back yet. I don't know how long it takes.

[GJ]

Still waiting for the doctor's office to call. I assume they'll call when they get the results. July 4 will have been two weeks. If they don't call by tomorrow then I'll call them.