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GFDahlia

New - Please Help

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Hi, I am hoping I am posting to the right area?

Well, I am 30 years old and just recently found out after years of severe sickness, medical testing, etc. that my mother forgot to let me in a little thing called Celiac that was apparently diagnosed when I was a child. I won't go into that long story, but basically I knew that up until about the age of 13 I was not allowed any gluten products - also no refined sugars due to a sugar allergy. Well, at that age I was told it would cause asthma attacks and it was just a food allergy. Well, here I am years later finding out that Celiac is a real thing and everything that has been wrong with me, even the skin disorder that could not be diagnosed by a dermatologist is most likely because of celiac disease!!!

Here is the thing...I cannot afford the medical tests - I am told now that I had them as a child, but the records are lost for good. Should I just try going gluten-free and see if it helps my medical issues?? My doctor is a pill pusher and doesn't really believe in Celiacs...so he is no help. My health is so bad that I am on the list for SSI disability because after about 20 years of working I am so ill I cannot work. So, until I can get a new doc is it safe to try the gluten free way and assume that this really is Celiacs?

Other family seems to remember hearing that word and knowing it had something to do with my food restrictions....just never knew I didn't know. So, I feel kind of safe in assuming this is what I have....however you know what they say about ASSuming...haha.

Any advice out there??

Thank you

Dahlia

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Alot of members on this board even come up negative on tests for celiac but had great response when maintaining the diet. If you cannot afford the medical tests you can always try the diet, there is nothing to lose there. If you start feeling better on the diet I would take that as your answer and stick with it.

Good Luck and Welcome to the board

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If you don't go in for testing I would at some point in the near future find a good doctor and consider being tested for vitamin/mineral deficiencies and possibly other things depending on your symptoms. Some things can clear up on their own with being gluten-free and others may need a little extra help. My sis is 32 and was to the point where she was barely able to hold a job and having seizures. She ended up not getting testing and just went gluten-free but did find a good doc who found that she has adrenal fatigue(cause by years of untreated celiac disease). Now she knows what she's working with and how to approach it.

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I don't see why you really need a test to prove you have Celiacs if you were diagnosed as a child? Just start in on the diet. Write down all of your sysmptoms, health issues, etc. even the ones not related to Celiacs. Then start in on the diet. You will see positive changes soon. I would have a dr check you for defiences. If you really need something to prove it to you, look into Entero labs (sp?).

I rarely do this, but in defense of your Mom/Dad, the doctors give a lot of misinformation about Celiacs. Some drs are great, but search this site for things all of us hate about Drs-its a long list. Since you are talking a good 15 yrs ago, your parents may have been told that you no longer have Celiacs at 13. Last year my child's dr told me babies CAN'T get Celiacs before age 3!!!(She has a new dr!) Your parents may never have known there was a connection between any other health issue you have had and celiacs.

I wish my parents had insisted on testing me as a child when another family member got a celiacs diagnosis. But the dr told them just by looking at me, that I didnot and could not have celiacs. After years of health issues and finally spiraling out of control health issues, I finally got a diagnosis at 30! My family still does not understand or embrace the food issues.

Ask questions if you need help starting the diet.

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Hi Dahlia! Regardless of the reason, it totally sucks that that happened to you. However, you can rest assured that Celiac does NOT go away, and you DO still have it. Just so you know, I've heard rumors of issues with health insurance people who give you a hard time over treatment if they find out you have an undisclosed condition. So, if you ever get regular medical insurance, I would ask a (different!) doc to do whatever tests he considers standard, just to be safe with the insurance people, whether it comes back positive or not. And for now, YES, go gluten-free!!! There's absolutely no way it can hurt you!

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If your doctor is just a pill pusher and doesn't believe in celiac (what, as a disorder or in you specifically, despite your history and symptoms?), why don't you get a different doctor?

There is no risk in NOT eating gluten, just risk in doing so. One doesn't outgrow celiac. If you had it once you have it now. If you feel better, you have your answer.

Enterolab, that someone else mentioned, is at www.enterolab.com. It diagnoses gluten insensitivity and measures the degree of malabsorption one may have. (Also does a gene test, and tests for intolerance to casein, egg, soy & yeast). You can do that on your own without involving any local doctor.

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Hi Dahlia!

I can't add much if anything to what's already been said, other than to echo that if you were diagnosed years ago, ya still got it! AND I also support the idea that your parents may have been very misinformed back then. There are still people out there who don't understand, and still others who CHOOSE not to understand. Yes, yes, yes, go gluten free. It won't hurt you for sure. The only thing I would caution you against is if and when you get to a doctor who will test you, they might want some gluten in your system to see if your body is reacting to it the way it does with Celiacs. Oh, and you're in the right place!!

Lins

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Thanks everyone for your help and opinions. Just helps to know there are others out there.

As for getting another Dr. - well to be honest since I am waiting on a decision from SSI, I don't have health insurance and this doctor is the only one I have found who will see me for like $30 cash office visits. So, unfortunatlely something is better than nothing until I get some insurance.

Thanks everyone

Dahlia

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