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Could It Still Be Celiac Or Gluten Sensitivity?

Lovelivedance

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Lovelivedance Newbie
Lovelivedance
Posted

Okay, here's my story. Ever since the age of 7 I have been experiencing stomach pain after meals. In the last few years the stomach pains have been going away but I still have many symptoms such as headaches,skin rashes,dizziness and constipation. I went to the doctor for my problems and they told me to go off dairy and tested me for celiac among other things.The next day they called to say all my blood work was fine and that I don't have celiac ( I find this strange because doesn't the blood work take more than 1 day) Anyways so going off dairy helped a bit but I still have many symptoms. The reason I'm still thinking gluten is the culprit is because my mom also has many symptoms such as psoriasis,keratosis Polaris, fatigue and sleep apnea. I still live with my mom and she thinks that gluten sensitivity is a myth and won't let me go off of gluten to see if I have a sensitivity. Anyways so what should I do and is it possible I still have celiac or even a gluten sensitivity?

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nvsmom Community Regular
nvsmom
Posted

Can you get a hold of what tests were done?  Some doctors run the old tests, misinterpret the results, or only run one test when more should be done.  You do have some symptoms that could be attributed to celiac disease or NCGS (non-celiac gluten sensitivity) so it is worth rechecking.

 

If you think it could be NCGS, go gluten-free for a few months and documents your symptoms.  No one needs a doctor's prescription to go gluten-free. Gluten has no nutritional value anyways, and is not heavily eaten in other parts of the world... it is just convenient and tastes good.  ;)

user001 Contributor
user001
Posted

I do think the test does take more than one day to run and interpret. I was told 4 days is about the shortest. So that is strange. I have heard that many people have the test run several times and sometimes it takes a few times to actually come back positive. I was young (17) when I first started to realize something was wrong, like yourself. I wish I knew about celiac disease then, because I am about to turn 30 and I have been through a lifetime of hurt because of this disease. I was always misunderstood by my parents because of the way I ate and felt all the time. It is certainly difficult. You are very lucky to have the resources to help you determine what tests the doctors should run, i wish i had the resources at a young age because I would have asked the Dr to run the tests sooner and saved myself and my health.

Lovelivedance Newbie
Lovelivedance
Posted
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Thank you both for you're help

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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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