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Negative Celiac Panel, Confused?

psusharon

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psusharon Newbie
psusharon
Posted

Hi out there,

I am new to this board, and I am reaching out b/c I am now utterly confused. I thought that I had everything figured out. I have type 1 diabetes and in the months since having my baby in January I have been getting sicker and sicker. My blood sugars have been all over the board but beyond that I have been experiencing joint pains, extreme fatigue, muscle aches, bone aching (if you can believe that) and my mind has been in a haze. About a month ago, after being tired of having high blood sugar for no good reason, I started knocking carbs out of my diet (which by default accidentally cut out gluten) and I noticed immediately that I my mind came out of the fog. I experimented with taking gluten out of my diet and soon the fatigue, muscle aches, bone tenderness, and foggy thinking were all gone. My blood sugars even became more dependable. Looking back on things, I fought with G.I. issues my entire "tween" years and was diagnosed with IBS in middle school. I have karatosis pilaris that has cleared up quite a bit while off gluten, and the kicker is that i reintroduced gluten for one meal before taking my case to the doctor and I felt horrible for three days. My celiac panel came back negative and my doctor said that I should stop my quest b/c there is little hope beyond there. I just don't know what I should do now. I felt so strongly that I was getting somewhere with my body after feeling so sick for 4 months. Has anyone gone through anything similar? I would appreciate some feedback. I feel as like giving up on this, but at the same time, I don't want to be sick anymore (and every other test shows nothing wrong with me), you know?

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Jestgar Rising Star
Jestgar
Posted
I just don't know what I should do now.

Get a new doctor because

I felt so strongly that I was getting somewhere with my body after feeling so sick for 4 months.

You are the best interpreter of what you should and shouldn't eat.

lizard00 Enthusiast
lizard00
Posted

Hello and welcome!!

Take a poll and see how many of us had negative blood work...

If you went gluten-free before your doctor visit for any length of time, even a week, you reduce your chances of getting an accurate blood test. But some of us just would probably never show up. Do you have your results? If you post them on here we can take a look at them and see if something jumps out at us. If you don't have them, get them. Unfortunately, many doctors are not so well versed in Celiac.

If your health has improved, then you should NOT listen to your doctor. The gluten-free diet is not unhealthy; if anything, I eat healthier now because of it. So, you are not hurting your body by doing it. My doctor(GP) didn't tell me to give it up, but the first GI I saw basically told me that it was an unnecessary choice, but he couldn't stop me. I didn't go back to him. So, maybe it would be worth it to you to get another opinion.

The best advice I feel I can offer is to research as much as you can on Celiac/Gluten Intolerance. Most doctors, even the good ones, cannot give you any more info that what you can find yourself. And this website/forum is a great place to be. There are many knowledgeable minds here w/ lots of experience ready to help. It got me through the rough beginning, especially when I was where you are and felt unvalidated.

Oh, and BTW, my symptoms kicked in after my son was born. Don't allow people to tell you that you are just stressed or tired because you have a new baby. You know your body and don't accept something that goes against what you know. I wish you the best!!!

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