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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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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
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