• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Please help.. Is this recovery??
5 5

35 posts in this topic

Hi guys. I really need help/someone to listen/someone to understand. Today was absolutely horrible. I started out feeling fine this morning just a little tired but by noon or so an incredible headache washed over me and I've been sick the rest of the day. The headache wouldn't stop and along with it came stomach pain and worse joint pain than I normally have. I came back from class and basically passed out on my bed for hours and woke up to even worse joint pain and a nonstop gurgling uneasy stomach. Lately I'm so thirsty nothing quenches my thirst and I cant even sleep through the night because I have to pee so many times the amount of water I'm drinking.  I've been trying so hard to be careful and not contaminate myself. I'm not sure if this is contamination or healing. Can recovery really be this painful? I'm 2.5 weeks into recovery. I couldn't stop crying this afternoon I just wanted it all to go away and I don't know if it's from me not being careful or this is just part of the process. I feel so defeated I have no energy, I don't even remember the drive back home today from classes. If I had the choice to stay in bed all day today I would have and probably slept the entire time. I eventually mustered up the strength for a quick shower and to vent on here. I just don't know if I'm even doing anything right...I read all the books I got and asked the forum questions and I follow all the wonderful advice given to me... I just feel pretty down today because I just want to be better already I can't live this way everyday.. It's especially hard around this time of the year since I have finals which are especially important since I'm a senior and need to pass because I'm graduating in May. All day today I just wished someone was here to take care of me which is very unlike me since I'm way too independent for my own good. I'm just very overwhelmed :( 

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Who knows if you were cross contaminated or not?  It can take a long time for antibodies to come down and you are newly diagnosed.  But you will feel better.   Just focus on one day at a time.   Get some rest.  Then eat well and keep on studying!  You will be fine!

Hugs!  😊

1

Share this post


Link to post
Share on other sites

How are things going now? I'm in college, too, and working toward recovery

1

Share this post


Link to post
Share on other sites
8 hours ago, cyclinglady said:

Who knows if you were cross contaminated or not?  It can take a long time for antibodies to come down and you are newly diagnosed.  But you will feel better.   Just focus on one day at a time.   Get some rest.  Then eat well and keep on studying!  You will be fine!

Hugs!  😊

Thank you 🙂. Its really nice to have this support group because you guys understand. Today is a new day and im feeling a bit better so im gonna kick ass on my test today and just be more careful with food. 

1

Share this post


Link to post
Share on other sites

Any clue what caused it? Did you eat out, let someone else fix your food, not use a gluten-free dedicated cooking ware, try a new brands? I wish you luck, some-days especially around finals, testing, etc. you might be better off rotating to gluten-free Certified packaged foods, meal replacement shakes etc. to be 100% sure your on you game even if it gets a tad bland even just sticking the plain whole foods and no seasonings can be worth it to make sure your do not mess up at a crucial period.

1

Share this post


Link to post
Share on other sites
Ads by Google:


8 hours ago, glutenkid said:

How are things going now? I'm in college, too, and working toward recovery

Heyy! Things are ok in college now much better than last year. My junior year was rough i was really sick and I just gave up and did really poor in my classes. I was a straight A 4.0 student my frist year and not far off my second. It was hard becasue i couldnt get out of bed and people were just calling me a lazy college kid so I felt really bad about myself. By senior year I moved off campus with my friends (into a beach house 😍) and I decided to take control of my health because I knew something was wrong. I kept seeing doctors and and finally one day I ended up in the hospital because I had a gallstone attack and it was a blessing in disguise because they started to notice all these other things that were wrong with me. So I ended up in the hospital quite a bit this year with some overnight stays too but finally I decided to go to a GI doctor where they made the celiac diagnosis. Thank god because I finally felt like i wasnt crazy. I really take my time to do work and to study. I got some really good time management going and it helps tremendously because if I have a day like I did yesterday I know a night off wont ruin me lol. Im sure you can relate... its like you look away in class for one second and youre failing lol. Im really looking foward to graduating because im going to take off a little time to heal before I start applying for vet school. How does school go for you? What year are you and where do you go?

lol sorry I realized I gave you a bit of a life story but I got excited there was another college kid on here

0

Share this post


Link to post
Share on other sites
1 minute ago, Ennis_TX said:

Any clue what caused it? Did you eat out, let someone else fix your food, not use a gluten-free dedicated cooking ware, try a new brands? I wish you luck, some-days especially around finals, testing, etc. you might be better off rotating to gluten-free Certified packaged foods, meal replacement shakes etc. to be 100% sure your on you game even if it gets a tad bland even just sticking the plain whole foods and no seasonings can be worth it to make sure your do not mess up at a crucial period.

Hi, I didnt eat out for meals .. I have one idea of what it might have been so Im actually going to eat it again today and see if it makes me sick. If it doesnt then good because I made a lot of it haha but if it does I'll chuck it all out.  I do also think it could of been my coffee I got at dunkin doughnuts. There is a self serve one I go to but now im thinking maybe someone touched a doughnut than grabbed the handle of the coffee pot and I touched that. Im a nail bitter (gross i know.. i just cant kick the habit) so maybe if it was on my fingers and I bit them it made me sick. Lol that could be far fetched but who knows. 

0

Share this post


Link to post
Share on other sites
5 minutes ago, KathleenH said:

Hi, I didnt eat out for meals .. I have one idea of what it might have been so Im actually going to eat it again today and see if it makes me sick. If it doesnt then good because I made a lot of it haha but if it does I'll chuck it all out.  I do also think it could of been my coffee I got at dunkin doughnuts. There is a self serve one I go to but now im thinking maybe someone touched a doughnut than grabbed the handle of the coffee pot and I touched that. Im a nail bitter (gross i know.. i just cant kick the habit) so maybe if it was on my fingers and I bit them it made me sick. Lol that could be far fetched but who knows. 

NOT AT ALL, i have CCed myself by touching shit all the time. Becomes a tad obvious when it happens between meals lol. I tend to pop mints and gum all day, so quite easy for me, I also bite my nails when nervous, anyway good luck and hope it was not your meal....I know how much that sucks done that a few times. LOL last time I got come CCed canned beets, a few months ago and blended them into a pudding.....5L of pudding ruined and had to go down the drain (I even used a test kit on it).   Another time I chopped up 2lbs of jack fruit meat alternative and seasoned it with a chili seasoning to learn it was contaminated -__-

0

Share this post


Link to post
Share on other sites
17 minutes ago, Ennis_TX said:

NOT AT ALL, i have CCed myself by touching shit all the time. Becomes a tad obvious when it happens between meals lol. I tend to pop mints and gum all day, so quite easy for me, I also bite my nails when nervous, anyway good luck and hope it was not your meal....I know how much that sucks done that a few times. LOL last time I got come CCed canned beets, a few months ago and blended them into a pudding.....5L of pudding ruined and had to go down the drain (I even used a test kit on it).   Another time I chopped up 2lbs of jack fruit meat alternative and seasoned it with a chili seasoning to learn it was contaminated -__-

Ughh that sounds terrible. Lol i love beets. Im sure it will just happen sometimes Im just afraid of not being able to find the culprit and recontaminating myself. Thanks for the support! 

0

Share this post


Link to post
Share on other sites
14 hours ago, KathleenH said:

Hi guys. I really need help/someone to listen/someone to understand. Today was absolutely horrible. I started out feeling fine this morning just a little tired but by noon or so an incredible headache washed over me and I've been sick the rest of the day. The headache wouldn't stop and along with it came stomach pain and worse joint pain than I normally have. I came back from class and basically passed out on my bed for hours and woke up to even worse joint pain and a nonstop gurgling uneasy stomach. Lately I'm so thirsty nothing quenches my thirst and I cant even sleep through the night because I have to pee so many times the amount of water I'm drinking.  I've been trying so hard to be careful and not contaminate myself. I'm not sure if this is contamination or healing. Can recovery really be this painful? I'm 2.5 weeks into recovery. I couldn't stop crying this afternoon I just wanted it all to go away and I don't know if it's from me not being careful or this is just part of the process. I feel so defeated I have no energy, I don't even remember the drive back home today from classes. If I had the choice to stay in bed all day today I would have and probably slept the entire time. I eventually mustered up the strength for a quick shower and to vent on here. I just don't know if I'm even doing anything right...I read all the books I got and asked the forum questions and I follow all the wonderful advice given to me... I just feel pretty down today because I just want to be better already I can't live this way everyday.. It's especially hard around this time of the year since I have finals which are especially important since I'm a senior and need to pass because I'm graduating in May. All day today I just wished someone was here to take care of me which is very unlike me since I'm way too independent for my own good. I'm just very overwhelmed :( 

Hi Kathleen.....the sentence above caught my attention.  If you are still having these symptoms, you really need to have your blood sugar checked, STAT.  These are signs of diabetes. I am not trying to scare you but my brother was a Type 1 diabetic and he was diagnosed when these very symptoms drove him to go to the doctors.  Something to keep in mind if this keeps happening.

Good luck with your veterinary studies.  I love animals too and they are my favorite.....all that unconditional love they give.  :)

0

Share this post


Link to post
Share on other sites
48 minutes ago, Gemini said:

Hi Kathleen.....the sentence above caught my attention.  If you are still having these symptoms, you really need to have your blood sugar checked, STAT.  These are signs of diabetes. I am not trying to scare you but my brother was a Type 1 diabetic and he was diagnosed when these very symptoms drove him to go to the doctors.  Something to keep in mind if this keeps happening.

Good luck with your veterinary studies.  I love animals too and they are my favorite.....all that unconditional love they give.  :)

Hii! Yes, this is something i've been considering. Im going to see a nutritionist next week and im going to ask her about it. Thank you for looking out for me! Do you know id night sweats are a diabetic thing too? Ive been having that issue too lately.

0

Share this post


Link to post
Share on other sites
3 minutes ago, KathleenH said:

Hii! Yes, this is something i've been considering. Im going to see a nutritionist next week and im going to ask her about it. Thank you for looking out for me! Do you know id night sweats are a diabetic thing too? Ive been having that issue too lately.

I have never heard of night sweats being a symptom of diabetes but they can happen with undiagnosed Celiac or the newly diagnosed who have not yet healed.  Celiac really screws up all your bodily functions and hormones are usually the first target....like thyroid disease.  You are far too young for it to be menopause.  :P  But many people have complained about this symptom so give it some time as they may go away once you are feeling better and your body is working well again.  I am glad you are seeing a nutritionist so hopefully, they will order a blood sugar test.  I wouldn't get all worked about diabetes, though.  Sometimes all these symptoms are just from Celiac and they will eventually go away once your body starts healing.  If I can heal well at my age, you will too!

2

Share this post


Link to post
Share on other sites

I think it had something to do with a combination of your body fighting inflammation, and the ratios of magnesium, potassium, sodium, and vitamin C. Higher magnesium and sodium before bed  helps to retain water though the night. Potassium and vitamin C cause you to keep going. Oddly enough any of these in high amounts leads to bottomless thirst.....I suck on sugar free xylitol mints and gum all day. Even got flavored kids toothpaste to discourage the binge urges.

1

Share this post


Link to post
Share on other sites

Was just going to support the comment re diabetes. Go get that checked out asap just in case you have an issue there. If you do then just like celiac you can manage it. Hang in there, you'll get better!

2

Share this post


Link to post
Share on other sites

Great catch, Gemini!  TYpe 1 diabetes and celiac disease are genetically linked.  Kathleen should get her blood sugar checked out even if it is at the student health center (might be faster than getting into her doctor.).   

1

Share this post


Link to post
Share on other sites

Thanks all. When I was younger we were suspecting diabetes because I would get shaky, light headed, faint, etc. Nothing ever really came of it and now looking back on it I assume it could be the celiac. I feel like I should get it checked out again though, Im not sure of the last time it was done. What do I say to them? Just can you check my blood sugar levels? What if they say why? Cyclinglady you say they are genetically linked? Do you know how or why? Yes, I suppose I could just go down to my university's health services and ask if they will do it for me instead of waiting the week but what do I say to them? I only ask because I dont want to seem a little crazy about suspecting diabetes. 

0

Share this post


Link to post
Share on other sites
54 minutes ago, KathleenH said:

Thanks all. When I was younger we were suspecting diabetes because I would get shaky, light headed, faint, etc. Nothing ever really came of it and now looking back on it I assume it could be the celiac. I feel like I should get it checked out again though, Im not sure of the last time it was done. What do I say to them? Just can you check my blood sugar levels? What if they say why? Cyclinglady you say they are genetically linked? Do you know how or why? Yes, I suppose I could just go down to my university's health services and ask if they will do it for me instead of waiting the week but what do I say to them? I only ask because I dont want to seem a little crazy about suspecting diabetes. 

Just describe your symptoms, say that someone has suggested you get your blood sugar levels checked and they shouldn't have a problem with it. 

Fwiw, I thought I was either diabetic or pre diabetic and had blood sugars done several times. The constant water drinking / urination, heavy sweats, shakiness, light headedness etc all went with the gluten. 

0

Share this post


Link to post
Share on other sites

I get my blood tests ordered from an online site that has Labcorp do the tests. Not sure if I'm allowed to give the url on here. So if your doctor says no then order them yourself. If positive then give the results to your doc.

 

0

Share this post


Link to post
Share on other sites
2 hours ago, KathleenH said:

Thanks all. When I was younger we were suspecting diabetes because I would get shaky, light headed, faint, etc. Nothing ever really came of it and now looking back on it I assume it could be the celiac. I feel like I should get it checked out again though, Im not sure of the last time it was done. What do I say to them? Just can you check my blood sugar levels? What if they say why? Cyclinglady you say they are genetically linked? Do you know how or why? Yes, I suppose I could just go down to my university's health services and ask if they will do it for me instead of waiting the week but what do I say to them? I only ask because I dont want to seem a little crazy about suspecting diabetes. 

Type 1 diabetes and Celiac share the same genetics...they are both a DQ-2 gene.  Different alleles on the gene strand but they are like cousins in the gene world, if I understand the explanation correctly.  This is why Type 1 diabetes is one of the bigger AI diseases that occurs more frequently with Celiac. It does not mean a Celiac will end up with diabetes but the risk is much higher. If you follow the gluten-free diet well and do not cheat, I think it lowers your chances of tripping for it. 

My brother's granddaughter was diagnosed with Type 1 last year at the age of 16 so now she will be tested regularly for Celiac. Her mother, my brother's daughter, has Celiac also. Genetics can just suck sometimes.......:angry:

0

Share this post


Link to post
Share on other sites
1 hour ago, KathleenH said:

Thanks all. When I was younger we were suspecting diabetes because I would get shaky, light headed, faint, etc. Nothing ever really came of it and now looking back on it I assume it could be the celiac. I feel like I should get it checked out again though, Im not sure of the last time it was done. What do I say to them? Just can you check my blood sugar levels? What if they say why? Cyclinglady you say they are genetically linked? Do you know how or why? Yes, I suppose I could just go down to my university's health services and ask if they will do it for me instead of waiting the week but what do I say to them? I only ask because I dont want to seem a little crazy about suspecting diabetes. 

Just describe your symptoms of being thirsty and having to get up in the night to use the restroom.     You have been advised to get a glucose check.  It is as easy as getting your temperature taken.  Often they'll do a skin prick and test on a little monitor or they can do a blood draw and send it out (it has been a long time since I have been in a student health center).  

  Chances are you won't have it, but you should be aware of it.   You want to be in the best health for your exams.  How much rest can you get if you have to wake up at night?  I am tired from waking my kid up at 5 this morning to finish up her homework!  😜

https://celiac.org/celiac-disease/understanding-celiac-disease-2/celiac-disease-and-comorbid-conditions/celiac disease-and-diabetes/

Get tested.  It all might be just related to celiac disease.  

0

Share this post


Link to post
Share on other sites

On a side note to this, I suspected the same thing due to my issues with night sweats and constant getting up in the night, and was suggested I get a glucose testing kit, reader, strips, lances, lancer all for under $14. I started testing my glucose daily, fasting, and after meals for awhile there. While this has showed no signs of me being a diabetic, it has shown a few interesting trend between my moods and blood sugar and how it corresponds to different ends of the normal range. I keep it around and sometimes still test when I feel odd and make notes in my food journal.

0

Share this post


Link to post
Share on other sites

Thanks guys all your responses were appreciated! I will definitely have to get the blood sugar checked to be safe. You say go asap or just wait till next Wednesday for my nutritionist appt? After the celiac diagnosis I kinda chalked all my other weird symptoms up to it all being caused from that. I'm learning now though from all of you that other diseases seem to go hand in hand so I should still get them checked out. The thing about them having the same gene was very interesting I had NO IDEA! Type 1 an auto immune disease as well? Where did you purchase a glucose testing kit? Thanks =]

0

Share this post


Link to post
Share on other sites

Walmart....diabetic testing supplies, they sell kits I got the redi on ones, Just a meter, lance, test strips, lances, and if you do not have them alcohol swabs. You can get the complete kit or get them seperate. I will admit it is intriguing seeing how your blood sugar consides with moods, and fluctuates with your meals and what you eat and cravings.

Always joked about it but what we really needs is a blood testing kit like a glucose monitor for gluten antibodies -_- SOMEONE INVENT ONE

0

Share this post


Link to post
Share on other sites
9 minutes ago, Ennis_TX said:

Walmart....diabetic testing supplies, they sell kits I got the redi on ones, Just a meter, lance, test strips, lances, and if you do not have them alcohol swabs. You can get the complete kit or get them seperate. I will admit it is intriguing seeing how your blood sugar consides with moods, and fluctuates with your meals and what you eat and cravings.

Always joked about it but what we really needs is a blood testing kit like a glucose monitor for gluten antibodies -_- SOMEONE INVENT ONE

Sounds good I'll have to look into that....haha totally wish that was a thing too! This way I would know how I'm doing and if you contaminated yourself vs you're just sick. There's totally a way to do that. So I had that meal I thought may have contaminated me and I feel fine. Thank goodness for that, I would have felt bad throwing it all away. So either part of my recovery or that damn coffee lol but who will know.   

0

Share this post


Link to post
Share on other sites
10 hours ago, KathleenH said:

Heyy! Things are ok in college now much better than last year. My junior year was rough i was really sick and I just gave up and did really poor in my classes. I was a straight A 4.0 student my frist year and not far off my second. It was hard becasue i couldnt get out of bed and people were just calling me a lazy college kid so I felt really bad about myself. By senior year I moved off campus with my friends (into a beach house 😍) and I decided to take control of my health because I knew something was wrong. I kept seeing doctors and and finally one day I ended up in the hospital because I had a gallstone attack and it was a blessing in disguise because they started to notice all these other things that were wrong with me. So I ended up in the hospital quite a bit this year with some overnight stays too but finally I decided to go to a GI doctor where they made the celiac diagnosis. Thank god because I finally felt like i wasnt crazy. I really take my time to do work and to study. I got some really good time management going and it helps tremendously because if I have a day like I did yesterday I know a night off wont ruin me lol. Im sure you can relate... its like you look away in class for one second and youre failing lol. Im really looking foward to graduating because im going to take off a little time to heal before I start applying for vet school. How does school go for you? What year are you and where do you go?

lol sorry I realized I gave you a bit of a life story but I got excited there was another college kid on here

I had a very similar experience, though I've been sick as long as I can remember (I just never knew -- I thought it's how everyone felt). When I got to college I struggled in my classes a fair amount but chalked it up to depression and personality defects. It wasn't until last semester (I'm a junior at SUNY Geneseo, btw) that symptoms reached a point where I decided something was wrong and that I needed medical attention, and that all the issues of laziness and depression lay above whatever was going on. Unfortunately I had no starting point so the extent of my productivity only went as far as googling "brain fog" over and over and reading about all the conditions it's associated with (quite a lot). Celiac was big on my radar but my blood test came back negative so I kept looking elsewhere. Meanwhile, my grades were suffering and I effectively stopped attending classes because I was too sick to sit there and listen to the professors drone on. It was hurtful because I'm generally a smart, curious and high-energy person but I couldn't muster up the energy to be myself. I stopped socializing because I hated the idea of meeting someone and not being able to show them who I was behind the fatigue. It wasn't until the semester ended and I was home for winter break that I went gluten-free at the behest of a holistic nutritionist (among some other things). I started feeling a bit better, but I had a hard time believing it because I try not to get caught up in alternative medicines, particularly ones that are not only unsubstantiated but straight up controversial, as macrobiotics is. So slowly I reintroduced foods. When I reintroduced gluten I was a week off the diet, and minutes after finishing the meal (burrito with a flour tortilla) I experienced the most unbelievable stomach pain and other unpleasant GI symptoms. Everything but the tortilla were "non-problem foods" so I knew that gluten was the problem and immediately went gluten-free. Since then I've become more sensitive and I have to be really careful about cross-contamination, and I've had to cut out other foods again as well, presumably because my intestines are damaged. So now it's been 3 months, and while I can't say I feel significantly better, my quality of life has improved to such a degree that I know changes are happening. Or at least that's what I tell myself. It's hard not having a diagnosis because I generally have a few good days here and there that get me optimistic, but inevitably I slip back into illness and worry that gluten was never an issue and that all the benefits I've been getting (sociability, wit, more consistent articulation) are from a placebo effect. But my experience seems to line up with  those who are in recovery, so all I can do is wait. If by 6 months I can't look back and say there's been a marked difference, I'll try reintroducing gluten. In fact, I may just try a little when the semester ends. I wish I could have taken 6 months off to really focus on getting better, because while I'm more effective academically this semester, I still can't seem to do as well as I know I could if I were feeling healthy. 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
5 5