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dhaze579

Life before knowledge of Celiac - and actions after (question)

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Story starts when I was young, feel great. kindergarten, first, second, but slowly getting more and more fatigued every year. Top student, interested in everything, never sleepy. Always stayed up during nap time and past bedtime, and never had to study because I would pay so close attention in class. Genuinely excited most of the time, but then come the later years.

Past second grade, everything felt slow, but fast at the same time - every day would go by and I would not be able to express much of an opinion about it. I slept through MOST of every single day, especially in school. I told my mom I felt like I had a brain tumor repeatedly, year after year, something was always draining my energy and productivity. Constantly distracted. I cared less and less about everything, every year a little bit more, and a bit more, more still until... I barely invited friends over, went to movies, left the house, etc. Too much trouble, WAY too much effort when I could just sit in a chair all the time and look at a screen without much work involved.

Sounds like depression? Well, maybe. Problem is, it never stopped. I had some emotional events in my childhood, everyone does, but honestly I recognized and dealt with them very fast. I am a very positive person, and I always find both sides of a problem to look at because I know not everything is just bad or good for me, I have great parents to teach me how to deal with emotional stuff, and I'm a resident assistant at my current college I attend (junior year), so I help other students deal with these issues as well. Considering that, still, I have the SYMPTOMS of depression - anxiety, fatigue, sleeping all day, trouble waking up, apathy, EXTREME MIND FOGGINESS, etc.

Doesn't check out to me. I tell a nurse practitioner about these issues that I feel like I have absolutely no reason to have, and she prescribes me Lexapro, just to try it. Well, haven't tried it yet. That stuff is pretty terrifying, as it can lead to even worsened depression and suicide in young adults, as well as ED and lowered sex drive, (which I really do NOT desire, especially considering I have a romantic interest right now) so I have held it off.

My mother has mentioned she has really intense joint pain and she thinks she might have Celiac disease because the doctors cannot figure out what's wrong with her in any other aspect. I look it up, and there it is. Absolutely everything that is and has been wrong with me that I can't explain. Everything. When I was younger, I would have ridiculously painful, gut demolishing hour-long pains in the middle of the night - this went on for years. I and others couldn't explain them, they just told me to stop eating so much cheese. So, that night, we have a gluten free dinner.

I wake up feeling like seventy-trillion bucks. Not a million - at least seventy-trillion. I haven't felt this good since kindergarten.  I only had four hours of sleep as well, usually I require at least seven. I immediately get up, shower, eat a gluten free sushi lunch, (I was at the dentist getting a cleaning) get coffee, and then come back home. I have a project to do over winter break, and I had been kind of procrastinating on it as I always do, but not that night. Noooo sir, I hopped on the computer and within two or three hours of straight working (which I NEVER do), I got everything done I needed to.

Usually that work would have taken me at least 6 hours, but man I was having FUN while working! Not a care in the world, just enjoying my process... that's weird for me. I don't usually do that. I don't usually enjoy doing anything work-wise. In fact, I never realized it, but I always had extreme anxiety while working. I didn't have any of that then, not a trace. I continue with my evening, and things only improve. I feel like I'm on cocaine, or at least what I'd imagine it to feel like. Seriously, I couldn't stop having fun! I didn't sleep that night, either. Not because I couldn't, I just really, really wanted to have more fun. I hadn't been that productive in... ever. I was so productive that I was genuinely scared of what kind of person I had become.

Well, here I am today and after a few days of gluten free and also having tonsillitis (have had it for weeks, medicated), I'm starting to feel sluggish and foggy again. I have been eating out a lot, so perhaps cross contamination is affecting me getting my gluten-free meals, or maybe it's the tonsillitis, or perhaps I completely imagined the effect of eating gluten-free and I'm just bulls$#&ting myself.

TL;DR: Ate a gluten free meal for the first time, all depression, anxiety, and fatigue went away the next day, but slowly going back to a sluggish apathy ridden me after a few days. Have no idea what's wrong, am I just fooling myself into having a gluten sensitivity?

Either way, I'm going to contact my doctor tomorrow, hopefully she is familiar with it and can help me work through this without just prescribing me more antidepressants. Just really curious as to anyone else's experiences and if someone can identify with me in the feeling of having some sort of tumorous drain physically and emotionally at all times of my life? I didn't even know things could be this good, but now that I do I really don't want to go back to the old, horrible me.

Sorry if it's too long, thanks in advance!

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Hi,

You need to stay on gluten until all testing is completed.   Testing for celiac depends on detecting antibodies in the bloodstream but they start to decline when we go gluten-free.  So going off gluten before testing can cause the testing to fail.

Welcome to the forum! :)

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Welcome,

Stay on gluten until the testing as gluten-free in dc says. Trust me it's best to go that route especially since you and your mom are consulting Drs on it. Celiac they can identify most cases especially if eating regular gluten diet, NCGS is still not a clear cut test. Going off and going on gluten will really confuse the body. Also my opinion is your body is really going to be upset the longer you are gluten-free then challenge. It will bring on your current symptoms and my experience more! Better to stay consistent eating it for the blood draw and scope. Then if they so no celiac approach the NCGS with Dr.

Some wont diagnose ncgs since no clear cut testing parameters. Then you will know  you are better gluten-free go gluten-free after. I wish in my 20's celiac was more mainstream or someone thought to test me. Better late then never but the earlier I could have educated myself and started would have been my preference. That was not my path. I won't even go into my pregnancies, labor's, delivery stories.

If you can tackle it now do it. It's never convenient. It will be more challenging as the years tick on. I know your preview of gluten-free showed you a glimpse of what you hope for I don't think your making it up but get it sorted out now then later so you are in tip top shape for next fall at school and your growing love story. 

Good luck

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39 minutes ago, GFinDC said:

Hi,

You need to stay on gluten until all testing is completed.   Testing for celiac depends on detecting antibodies in the bloodstream but they start to decline when we go gluten-free.  So going off gluten before testing can cause the testing to fail.

Welcome to the forum! :)

Hello there! Thanks for the welcome.

Unfortunately, doing the gluten challenge issued by medical professionals is likely not going to be an option unless completely necessary. I'm going back to school across the country (Illustration major, I noticed you enjoy art as well) in three days and I will not be available for any testing whatsoever during the school year which will likely last till the end of may. If I get an internship, I will not be available until next year, and I'm aiming for one this summer. My school is incredibly strict, and there is no difference between excused and unexcused absences - you miss more than three times, you fail, and it's pretty hard to get special circumstances approved.

I may be able to be formally diagnosed in the years to come, but for now I'm wondering what the best course of action is if I would like to get that feeling of general well-being back.

Thanks for your reply GFinDC!

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9 minutes ago, Awol cast iron stomach said:

Welcome,

Stay on gluten until the testing as gluten-free in dc says. Trust me it's best to go that route especially since you and your mom are consulting Drs on it. Celiac they can identify most cases especially if eating regular gluten diet, NCGS is still not a clear cut test. Going off and going on gluten will really confuse the body. Also my opinion is your body is really going to be upset the longer you are gluten-free then challenge. It will bring on your current symptoms and my experience more! Better to stay consistent eating it for the blood draw and scope. Then if they so no celiac approach the NCGS with Dr.

Some wont diagnose ncgs since no clear cut testing parameters. Then you will know  you are better gluten-free go gluten-free after. I wish in my 20's celiac was more mainstream or someone thought to test me. Better late then never but the earlier I could have educated myself and started would have been my preference. That was not my path. I won't even go into my pregnancies, labor's, delivery stories.

If you can tackle it now do it. It's never convenient. It will be more challenging as the years tick on. I know your preview of gluten-free showed you a glimpse of what you hope for I don't think your making it up but get it sorted out now then later so you are in tip top shape for next fall at school and your growing love story. 

Good luck

Oh man, well if it really is that important then do you suppose I could maybe get an emergency appointment with my doctor before the 4th of January? Would the test be effective if I ate gluten-free for 3 days? I'm thinking that even if I don't have Celiac disease, if I have other sensitivity to gluten that won't be diagnosed I will likely remain gluten-free for life anyway if it makes me feel the same way it did that day. Thanks for the fast reply and considerations!

I may have to hit the sack soon, but I will be awake tomorrow!

Edited by dhaze579

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I would eat gluten and see at minimum if you could get the blood draw before leaving for school. Sometimes Dr can order a blood draw without bringing you into his/her office worth a shot if you explain situation. Perhaps they will be willing at minimum to order blood work and have you just go to lab it's worth asking about it. If it's a Dr you have had a long time might be willing. That's best suggestion I have based on your current challenges limitations. They will not be able to rush/book an endoscopy but blood work good start.

Good luck and enjoy school sounds like an exciting year for you.

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It is suggested you be eating it for 12 weeks before a blood test, or I think it was 2 for the endoscope. Three days should not be that bad off, you can eat 1 cracker or half a slice a bread a day to keep the antibodies present you do not need to eat a whole lot of it. Do this and see about getting the blood testing done now, ask for a FULL Celiac panel make sure they do the full blood test and post your results here and others here will help you understanding them better. As your circumstances are strict I do not know if you can see about getting the endoscope and biopsy done before you school starts. But 2 week gluten challenge is a whole lot easier then a 12 week, once you get off the stuff for a extended amount of time and start feeling a whole lot better, any bit back in your system you seem to notice it like a truck running you over.

I can relate on that slowing down over time perfectly, started noticing it in Jr. High, my college and high school I was chugging energy drinks trying to stay awake and active and just sleeping most the days. As a adult it got worse and worse then one day I did some thing stupid drinking and the shock made it a WHOLE lot worse and all my symptoms from then on seemed to multiple to the point the brain fog was driving me nuts, numbness, loss of of motor control, broken record thought patterns. Actually thought I was dying and running a bucket list before we figured it out. Much better now, still have brain and nerve damage but that and the whole story is a bit long. 

I wish you luck in the testing and hope they can nail this for you without much issues or run a rounds.

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7 hours ago, dhaze579 said:

Hello there! Thanks for the welcome.

Unfortunately, doing the gluten challenge issued by medical professionals is likely not going to be an option unless completely necessary. I'm going back to school across the country (Illustration major, I noticed you enjoy art as well) in three days and I will not be available for any testing whatsoever during the school year which will likely last till the end of may. If I get an internship, I will not be available until next year, and I'm aiming for one this summer. My school is incredibly strict, and there is no difference between excused and unexcused absences - you miss more than three times, you fail, and it's pretty hard to get special circumstances approved.

I may be able to be formally diagnosed in the years to come, but for now I'm wondering what the best course of action is if I would like to get that feeling of general well-being back.

Thanks for your reply GFinDC!

Hi Dhaze,

Yes, try to get the blood tests done now.  You want to get the full celiac panel,  DGP IGA, DGP IgG, ttg-IgA, serum IgA,  Anti-endomesial antibodies.

I understand your school is strict, but we are talking about a lifelong incurable condition here.  Celiac disease is not a minor condition, and living with it takes some adjustment.  Symptoms tend to get worse over time, not better,  If you can't get the blood draw before leaving, maybe you can go to a clinic on the weekend near the school.

Sometimes people who go off gluten before testing try to do the gluten challenge for testing later.  Sometimes they succeed, but sometimes they don't.  Because symptoms seem stronger after going gluten-free.

Celiac disease is the only autoimmune disease where we know the trigger, gluten.  Other AI diseases like rhuematoid arthritis etc. we don't know the triggers.

There is also a gene test for the celiac genes.  It doesn't prove you have celiac though, just that you have the genes that are associated with celiac.  About 30% of people have the genes, but only 1% develop celiac disease.

Yep, I like art too. :)

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Your campus does not have a medical clinic?  Any MD can order a celiac panel.  

 

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Hey everyone! The medical office I go to is closed today (new year's), but tomorrow I will try to order the complete panel of blood tests from my doctor. If I can't make it, I'll keep eating a good amount of gluten before I can somehow arrange another clinic out-of-state to get the test done for me while I'm at school. My school has a small clinic with only one nurse working there to tell people if they're in bad enough shape to go to an urgent care or the ER, I don't think they draw blood there. They don't even do flu shots there, it's a really small school, but I can try to ask them if they can test for Celiac there.

Started including gluten in my diet since last night, and man do I feel absolutely dead. I've been looking up research into non-celiac gluten sensitivity not being caused by gluten, but by FODMAPs, and I'm going to discuss that with my doctor as well and see what we can do about that. Thanks for all of your suggestions, they've really helped at least reassure me that action is needed.

One of the sources I mentioned can be found here, and the article that led to it here. You guys have probably already read these, as they're a couple of years old, but they're interesting to me.

Alright I'll check back when I get some results or further news!

Edited by dhaze579
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Hi dhaze,

You don't need to eat a lot of gluten to keep the immune reaction going.  A single cracker or half slice of bread is enough.  Some people find it easier to eat the gluten first thing in the morning and get the worst symptoms over in time to get some sleep..   Others do better eating the gluten at night before bed and trying to sleep through symptoms.  If you have pain, aspirin may help.  Peppermint tea is good for bloating in the stomach and remember dairy (any milk product or ingredient) can also cause symptoms..  So stopping dairy may help symptoms but won't affect your celiac testing.

Thanks for the article links dhaze.  FODMAPS have been a subject of several threads in the past.   Some members do avoid them.  That is definitely worth noting that FODMAPS may cause depression in some people.  There are also threads about depression and other mental symptoms on the forum.  Gluten can cause problems in any part of the body.  And nutrient deficiencies can also.

Edited by GFinDC
adding additional wurdz :)

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    Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? 😉
    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
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