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99.9% Certain, Though Undiagnosed

eternal

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eternal Rookie
eternal
Posted

Hi everyone :) I'm new to the forum (I didn't notice an introduction board, did I miss it?). My name is Kim, I'm 21, and I've suffered symptoms of celiac for years. I've had digestive issues the most commonly (constipation, bloating, abdominal pain), as well as headaches, fatigue, poor skin. Most recently I've developed a skin rash that looks suspiciously like Dermatitis Herpetiformis. I've been to the doctor twice. He says it's an allergy, but for some reason just prescribed me a second round of antibiotics. But, I digress..

I was just wondering, is anyone else undiagnosed?

I've decided to remove gluten from my diet 100 percent for the next 4 weeks. Then, I'll try eating something containing gluten and see how I react.. If it's bad, that's enough of a diagnosis for me. I don't see the sense of having a scope or more blood tests to prove it! This is my personal opinion. I'm just wondering if anyone else is "self diagnosed" so to speak.

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bartfull Rising Star
bartfull
Posted

I am self-diagnosed. My Mom had diagnosed celiac and diagnosed psoriasis that went away after she went gluten-free. Knowing that both of these maladies run in families, I went gluten-free and MY psoriasis went away, plus other symptoms (like insomnia, brain fog, swelling ankles, heart palpitations, not to mention the minor digestive symptoms) went away too.

But I can honestly say that if I had insurance I would get tested. There is no doubt in my mind that I have celiac, but there is no way I can tell if I am getting better. I have read here that some folks FEEL better, but their follow-up tests show that they are still sustaining intestinal damage and they are still producing antibodies. They may not get sick with cross contamination, but they are doing damage just the same. No matter HOW careful you are, you WILL get glutened from time to time.

Another thing I would get checked if I had insurance would be thyroid and vitamin deficiencies. Those are both common in celiacs too.

So it's up to you but if you have insurance and can find a GOOD doctor, it might be a good thing in the long run to get tested.

MitziG Enthusiast
MitziG
Posted

I really recommend you get tested before going gluten free. One, if it is celiac, your family members MUST be tested too.

Two, if you have celiac, you must be 100% gluten free for the rest of your life. It is not an easy undertaking. Even though you may feel better gluten free, down the road you may question if gluten is really your problem. Reactions can change over time. You could go on to develop silent celiac, where you have no symptoms but your immune system is still destroying your organs. By the time you know, it may be too late.

If you read the posts on this board you will find a myriad of people who thought they would just try the diet and see how they felt. Most of them really regret not getting tested first.

bartfull Rising Star
bartfull
Posted

You may have already seen this, but if not, check out this thread:

yo

eternal Rookie
eternal
Posted
  • Author

Thank you for your replies :)

I did just read that thread (still haven't had a lot of time to be on- I have an 8 month old daughter, and there's an abundance of information on the site!), and I didn't realize that even after thinking you had been gluten free for so long, you could still be causing yourself inner damage. I think I may just suck it up, deal with the symptoms another week, and make a doctors appointment to be tested.

I read somewhere that there are a certain group of blood tests you should ask for, I'll have to see if I can find it again..

I also should have added, I'm Canadian; we don't pay for things like blood tests and such. They're covered by our provincial governments, so long as you are registered with your provincial government. It's free of charge, so I've really no excuse not to be tested. If a doctor orders and endoscope or other tests post blood test results, I wouldn't pay for that either. One of the things I love very much about my country ^.^

For future reference, if I'm positive- ALL of my family should get tested? Mom, dad, sisters, niece and nephew..? I knew my own daughter would have to be tested when she's older, but I didn't realize that everyone should be expected to!

frieze Community Regular
frieze
Posted

Thank you for your replies :)

I did just read that thread (still haven't had a lot of time to be on- I have an 8 month old daughter, and there's an abundance of information on the site!), and I didn't realize that even after thinking you had been gluten free for so long, you could still be causing yourself inner damage. I think I may just suck it up, deal with the symptoms another week, and make a doctors appointment to be tested.

I read somewhere that there are a certain group of blood tests you should ask for, I'll have to see if I can find it again..

I also should have added, I'm Canadian; we don't pay for things like blood tests and such. They're covered by our provincial governments, so long as you are registered with your provincial government. It's free of charge, so I've really no excuse not to be tested. If a doctor orders and endoscope or other tests post blood test results, I wouldn't pay for that either. One of the things I love very much about my country ^.^

For future reference, if I'm positive- ALL of my family should get tested? Mom, dad, sisters, niece and nephew..? I knew my own daughter would have to be tested when she's older, but I didn't realize that everyone should be expected to!

ALL first degree relatives, ie, mom,dad, and siblings. the nieces and nephews would be if THIER parents Are positive....

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