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Getting Tested Soon.
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4 posts in this topic

I'm going to try to piece this together as well as I can for everyone. My name is Brad and I'm 22 years old, a graphic designer, engaged to be married to my beautiful fiance...and up until recently I've lived pretty well! Until I started noticing a lot of weird things going on, not all at once, but some all at the same time, actually, throwback time...when I was a youngin' going into high school I started experiencing stomach pains, chronic fatigue, irritability, anxiety (at that time I didn't know the term anxiety or what it meant, in retrospect it was). I was eventually sent to a GI, who sent me to a Chron's specialist and that was ruled out. Oh ding! Dibetes runs in my family, that could be it! I was then sent on to a diabetes specialist who dealt with children only, I was told this "It runs in your family, you're borderline, eat healthy and lose 30 pounds"...I was obese as a kid, still kind of chunky now. So after the GI does an endoscopy and colonoscopy the only closure we really had was (and that I can remember) is mild inflammation, and it could be signs of celiac. All of my teenage / high school years were spent being tired, confused, upset stomach, nauseous, constipated, loose stools, joint pain, insomina, afraid, depressed I guess you could say, but I was a kid who didn't have much health insurance so I just dealt with it accepting it as that's how my body is. Fast forward 7 to 8 years. I've finished technical school, landed a job, got engaged...now I'm living an adult life, Monday through Friday, 9 to 5. My dad's health is down the drain, my fiance has a horrible life-changing experience and ends up having PTSD and now I'm juggling work, my life, my relationship, my family, paying bills, getting restless sleep and my symptoms slowly start to creep back. It took me 2 months of having the aching, sleeplessness, loose stool, joint pain, sinus congestion, brain fog, etc...to realize that my symptoms are the exact same as they were in my high school days, just now I have health insurance (yay for health care!).

My true bottom of the line questions to this is, do these sound like celiac / gluten sensitivity symptoms? I'm sure I've missed a lot of things going on or not gone into true detail, so I'll list them at the bottom of this post. I have setup an appointment with my doctor to get to the bottom of this, after my test for hypothyroidism came back negative (runs on my mothers side of the family, grandma is diagnosed), and to be honest I'm a bit scared / anxious of going back for testing. I have it setup to be tested for diabetes, celiac and to check my vitamins (I learned about that one after lurking the celiac.com forums here for a few weeks).

Also, I'm sure this is redundant and asked everyday but...do I need to be eating gluten before the test if I've been eating is for my whole life? I've gone gluten free for 5 days now and I'm seeing an improvement, I just want an official yes or no. Even if the test returns no, can I eat gluten-free? What should I do, any supplements or special vitamins?

I was just sent to the ER last Friday too, they said I just had gastritis and swollen lymph nodes around my intestines (I think, I was really anxious and in the midst of a panic attack when they told me what was going on, hospitals suck). I'm food logging as well, I noticed today I had a HIGH intake of dairy and that I had blood in my stool from hemorrhoids acting up. So tomorrow I'm not taking in any / very little dairy.

All of this can be a lot, but I'm sure with the help of the forums and testing I can get through this.

Okay, symptoms list time!

-Nausea, bad in the morning.

-Pain, all in stomach area.

-Beating heart feeling, usually coupled with anxiety.

-Tingling/Pins & Needles in feet & hands.

-Exhaustion, even though getting rest.

-Brain fog, concentration sucks at times, can't put together sentences, I'll even forget what I'm doing / where I'm at sometimes.

-Coughing real bad after I drink milk, dunno if this is a gluten response or not?

-Headaches, usually in the front or back of my head, feels like someones hammering a nail into my skull.

-Hyperactivity...I don't get this often, but sometimes I get super wired (noticed this today after eating beef jerky stick & a vitamin water)

-Constipation

-Hemorrhoids

-Insomnia

-Tight breathing, feels like I can't get a "good" breathe in

-Sensitivity to cold

-Sinus problems (stuffy nose, congestion)

-Feelings of weakness, these come and go.

-Weird colored stools, yellow, dark brown, black.

-Pain in hands, knees, neck.

That's all I can really name off the top of my head, and yes, I do workout occasionally and I try to drink a gallon of water a day. I hope this hasn't been an information overload and I can get some response to this.

Thanks for all the useful information that I've found through celiac.com, can't wait to hear from some of you!

-Bradlee

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Yes,m it sounds exactly like celiac, and stress is a common trigger to have the disease reactivate in adulthood.

Yes, you need to start eating gluten again immediately, and continue eating it until all testing, including biopsy, is done. Then, by all means, go gluten free. Many celiacs still get negative test results (it is a flawed science still) and non-celiac gluten intolerance cannot be tested for at all, but causes the exact same symptoms. Blood tests look for antibodies to gluten, and when you stop eating gluten, your body stops making them, quickly. It is imperative you resume eating gluten NOW. Biopsies look for damaged villi. Villi renew themselves every 3 days, and in some people, significant healing can take place in a matter of weeks, rendering a false negative biopsy.

You do not need a drs permission to eat gluten-free. It is important to know if it IS celiac though, as it predisposes you to other auto immune issues and is genetic, so your future children will be at risk, as well as other blood family members.

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Yes,m it sounds exactly like celiac, and stress is a common trigger to have the disease reactivate in adulthood.

Yes, you need to start eating gluten again immediately, and continue eating it until all testing, including biopsy, is done. Then, by all means, go gluten free. Many celiacs still get negative test results (it is a flawed science still) and non-celiac gluten intolerance cannot be tested for at all, but causes the exact same symptoms. Blood tests look for antibodies to gluten, and when you stop eating gluten, your body stops making them, quickly. It is imperative you resume eating gluten NOW. Biopsies look for damaged villi. Villi renew themselves every 3 days, and in some people, significant healing can take place in a matter of weeks, rendering a false negative biopsy.

You do not need a drs permission to eat gluten-free. It is important to know if it IS celiac though, as it predisposes you to other auto immune issues and is genetic, so your future children will be at risk, as well as other blood family members.

Well that is a bit relieving in a sense, that stress can trigger it to reactivate...I've been trying to tell my fiance and her family that stress can trigger and they kinda thought I was crazy I guess!

The only cruddy part about all this information is obviously eating gluten again, I just now started to feel GREAT not eating it, except last night when I thought a piece of beef jerkey was gluten-free and I looked to see it contained wheat, soy and corn protein...yucky.

The weird thing is now that I'm discovering my mother has lived MANY years of her life with the same symptoms but they diagnosed her diabetic, but our symptoms are spot on, match to match. I'm now wondering if she is not celiac or gluten sensitive and she just passed it right on to me. It's weird how life works sometimes, right?!

Even if the tests come back negative, false-negative or positive I know I will continue a gluten free lifestyle. just the way I've felt the past two days has been great compared to the past 4 months of feeling overwhelmed and sick.

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    • Oh you're most welcome!  Another thing --- no steroids, oral or injected for 2 months prior to a dh biopsy. Lay off any topical steroid creams for 2 weeks prior. Really, stand your ground with them. It would also be great if you can get a friend or family member to go with you in case they take the biopsy from somewhere that you can't see such as the back of your neck. Your friend/family member can watch to make sure they don't take it directly ON a lesion. Do you have a primary care doc? You can also go to that doc & ask for a full celiac panel PLUS an eTG or TG3. 60% of people with dh test negative on the celiac blood panel but maybe you're one of the 40% who will test positive. It's worth a shot.
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