• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sick And Tired Of Being Sick And Tired...
0

14 posts in this topic

Recommended Posts

DucksnPucks    1

Hi All,

I haven't posted in a while, which is a reflection in part on how I've treated this horrible disease. I was diagnosed a few years back, and since then have been able to tolerate all my favorite wheat products (at least for a while) without really getting sick. I would fool myself into thinking I was eating gluten free, and would ignore little things like Chicken Nuggets, fries at McDonald's, an occasional hamburger and sandwich. But about two months ago I started getting very light headed, tired and lethargic No real stomach symptoms, but there really didn't need to be I knew what was happening. Usually this meant laying off the wheat products until the symptoms went away, but they didn't go away, just kept getting worse.

At times I felt like the top of my head had been sawed off and my brain wasn't attached anymore. I woke up in the morning and felt like I hadn't slept at all. By the middle of the day I am weak and barely able to walk. My muscles were sore (not bad but enough to notice), a little bit of joint pain here and there. Can't think straight, in a constant daze. Then about a month ago the stomach symptoms kicked in. I became more bloated then I have ever been in my life. Had D, then C, along with everything else I had been experiencing.

This time, the symptoms weren't going away, they were getting worse. This has never happened to me, usually I could get by but not anymore. I knew what was happening, my body had simply had enough and I had done serious damage, all by being naive about this terrible disease.

Over the past three weeks I've done a 180. I don't put anything in my mouth without knowing if there is a chance of it being contaminated with gluten. I did even more research to try and determine what I had done wrong, and it turns out, there is a lot I had missed. I don't eat fast food any more. In three weeks I've dropped 10 pounds (I was overweight to begin with) and feel leaner. I eat a lot of salad, baked potatoes, grilled chicken and have lost all cravings for sweets and other "naughty" foods. The brain fog and light headedness disappeared about a week and a half ago, but I'm still dealing with the extreme fatigue, though that has been gradually getting better (some days are better then others, two steps forward one step back kinda thing).

I pray that the fatigue gets better, I want so much to be able to walk for an extended time and get back to the gym. I'm still not 100% (I would say I'm stuck between 60% & 70%). But I can finally begin to see the light at the end of the tunnel.

I have no idea why I am posting any of this. Maybe its just so my story can be heard. Its so hard for my family to see me like this and I know its difficult for them to understand what I am going through. Sometimes I feel like they don't believe me when i tell them how I feel. I know my wife is sick of hearing about it. And my kids aren't old enough to understand. But this has devastated me and made it difficult to have any normal semblance of a life. I'm just tired of being tired all the time.

Thanks for listening y'all.

Jason

PS - Anyone else ever feel like they constantly needs a massage from the muscle/joint pain? lol =)

Share this post


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


Chaff    9

Thanks for posting this. I'm just 10 days off gluten, so no words of wisdom from me, but I appreciate what you're going through. It seems unfair that some people go off gluten and seem to feel better immediately, and other people take forever.

But you're healing and every week you'll get a little better. In the meantime, please come back here to rant if you need to. There's always someone here also going through it and who wants to listen.

(Argh--I took my hot water bottle to the movies today for back pain.)

  • Upvote 1

Share this post


Link to post
Share on other sites
DucksnPucks    1

Thanks for posting this. I'm just 10 days off gluten, so no words of wisdom from me, but I appreciate what you're going through. It seems unfair that some people go off gluten and seem to feel better immediately, and other people take forever.

But you're healing and every week you'll get a little better. In the meantime, please come back here to rant if you need to. There's always someone here also going through it and who wants to listen.

(Argh--I took my hot water bottle to the movies today for back pain.)

Thanks Amelia. Everyday is a battle right now, just looking forward to the little victories that keep me going to the next the day. I'd give anything just to be "normal" for a day, you know what I mean.

BTW - Love the hot water bottle idea, I might have to try that one! lol =)

Share this post


Link to post
Share on other sites
kareng    1,992

It will take a while (maybe years) for all those years of damage to heal. All the vitamin deficiencies caused by intestines that can't absorb them cause problems,too.. When you start feeling better and go back to eating gluten, it will continue.

Not much to say to you if you aren't ready to take your disease seriously. Not a very good example you are setting for your kids. Celiac is genetic, so they may have it someday, too. So many awful things those poor kids will learn from a father that doesn't care about his health.

This isn't meant to be unfriendly. Its just disheartening for me to see this.

Share this post


Link to post
Share on other sites
DucksnPucks    1

It will take a while (maybe years) for all those years of damage to heal. All the vitamin deficiencies caused by intestines that can't absorb them cause problems,too.. When you start feeling better and go back to eating gluten, it will continue.

Not much to say to you if you aren't ready to take your disease seriously. Not a very good example you are setting for your kids. Celiac is genetic, so they may have it someday, too. So many awful things those poor kids will learn from a father that doesn't care about his health.

This isn't meant to be unfriendly. Its just disheartening for me to see this.

Karen, I can't say that I've treated my body well over the past several years, but it hasn't been on purpose. I think it's easy to see that there has been a bit of denial on my part, especially since the symptoms would disappear for months on end. I could get away with eating whatever I wanted because there were no consequences. The other part of was lack of education. While I was "trying" to eat gluten free, I didn't fully understand the foods and chemicals I needed to stray away from and thought that an occasional cheat wasn't a bad. I blame myself for this.

But I do have to say one thing, respectfully, you don't know me, or my kids, or what kind of parent I am. I take offense to you being critical of me and the example I set for my kids without knowing a thing about me. This is not meant to be unfriendly, but my wife and I are great parents and do the best we can to raise our children as best we can. We probably won't win any parent of the year awards, but we provide a loving home with morals, respect and always try to set good examples.

I understand the mistakes I have made and the position I have put myself into. And I am doing everything I can to correct those things to allow myself to get healthy and remain healthy for a long time to come. I'm educating myself, eating right, and doing the right things for a change. I came here to get support, find people who I can identify with, and possible help others who are going through the same thing, not be torn back down and criticised.

Share this post


Link to post
Share on other sites
Ads by Google:


srall    112

I could give you a lecture about cheating, but I think deep down I know the only reason that I don't cheat is because I couldn't get away with it. I got some cc at my inlaws house for TG and have been racked (wracked?) with pain for days. I've also been sitting on a heating pad constantly. But it sounds like you're ready. Once you get over the hump and truly start feeling better I don't think you'll be tempted to cheat anymore.

The one thing that still gets me all these 2 1/2 years later is that I still have bad days and like now, bad periods of time where I am just sick...can't get anything done, and it bums me out. So, expect those days, and a possibly slow recovery, but embrace the good days...they are there for you if you are diligent. Good luck.

  • Upvote 1

Share this post


Link to post
Share on other sites
kareng    1,992

Sorry but posts like this make me very sad. Kids do notice things like Dad having to take extra naps or not having energy to play. Mine did. I just hope you now can realize the seriousness of this disease and that it affects the family, not just you.

This site has easy to read and understand info about Celiac disease for you and your wife to read:

http://www.cureceliacdisease.org/

We have a newbie thread with some info too.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


Adalaide    361

I missed years because of this horrid disease. Like other parents I've seen here, my children had a "safe" place to play where I could sleep and I knew they wouldn't be able to hurt themselves. When they finally went off to preschool I was so thrilled that I could send them off and nap guilt free, only that came with a whole new set of guild. It is awful that there was a lack of education that left you in a position to eat all sorts of wheat and make yourself sick for so long. While tragic that you are so terribly damaged now, the good news is that it has given you the wake up call you terribly needed and brought you where you know you can get the help and information you need to stay safe and healthy.

The bad news is that because of how long you have been systematically poisoning yourself, you may have a long road ahead. I'm coming up on a year gluten free and I'm still not to the point where I am physically capable of much. Lengthy grocery shopping trips are enough to wipe me out for the rest of a day. I still have a day or two a week where I can barely function. Short and slow walks are my exercise. These things are all hard won, and often are things I must push through still.

Your wife may get sick of hearing about it, sure. My husband probably is. But until she knows as much about it as you do, she hasn't heard enough. She has to be able to be every bit as safe as you in the kitchen, regardless of which of you is preparing meals. Once your kids are old enough to do ANYTHING in the kitchen they'll need basic celiac safety rules too and if it isn't second nature to her you'll have that many more problems. (I live with my in-laws, I know how frustrating gluten eaters can be.) The fact is, this isn't just your life, this is her life too... and the rest of it. She needs to get used to this and the sooner it becomes second nature to her the sooner she can stop hearing about it and you guys can relegate it to the back burner and jokes. I find that humor helps for me anyway.

  • Upvote 1

Share this post


Link to post
Share on other sites
rosetapper23    236

Okay, I'm not going to give you a lecture. Actually, I did a similar thing many years ago and ended up unable to absorb iron--I spent years receiving intravenous iron infusions, so I will NEVER knowingly ingest gluten again.

That said, I can give you a couple of remedies that should work for your muscles and joints. First, you should take chelated manganese, which you may be deficient in and which is extremely necessary for the health of your muscles, tendons, and ligaments. Secondly, if you take 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of organic safflower oil and mix them in a smoothie or glass of juice once a day, your muscles will stop aching almost immediately. Your joints should start feeling better, too, in a few days. I'm pretty sure these remedies will help you out--good luck!

  • Upvote 1

Share this post


Link to post
Share on other sites

Yeay for your 180!!

Sounds like you learned your lessons the real hard way. Great you are already feeling the benefits of 'true' gluten-free living.

My story is different, I didn't know I might be celiac but was wheat free mostly for years. It is horrid addictive stuff and every now and again I would have a little and be wrecked.

I still dont have a full diagnosis, but know enough to know that I must be gluten-free for life. The difference on true gluten-free has been incredible for me.

I really hope that percentage goes up for you now you have made a full comittment to the diet.

Stick around and ask questions.

With family, I have found the more I take it seriously, the more they do. But I do most of my whinging here, and drip information to my folks - very serious but not overwhelming. The convincer for my family is seeing the change in me.

Good luck, fresh start, go for it

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


DucksnPucks    1

Thanks for sharing the links Karen, really appreciate the help! =)

Sorry but posts like this make me very sad. Kids do notice things like Dad having to take extra naps or not having energy to play. Mine did. I just hope you now can realize the seriousness of this disease and that it affects the family, not just you.

This site has easy to read and understand info about Celiac disease for you and your wife to read:

http://www.cureceliacdisease.org/

We have a newbie thread with some info too.

http://www.celiac.co...ewbie-info-101/

Share this post


Link to post
Share on other sites
DucksnPucks    1

I'm done with the cheating. In fact, as I told my wife this morning, there are so many great alternatives out there now that I almost don't have to. For example, we had lunch at red Robin and I had a burger with a Gluten free bun. Yum! Also, since I've kicked the gluten completely, I've stopped craving processed foods like I used to and I "feel" thinner (if that makes any sense?). I'm not constantly bloated.

I know I'm going stumble along the way, but I just can't function doing what I've been doing all these years. The toughest part is knowing which products have gluten and which don't. I'm being 100 times more careful than I was before, and can feel the difference all ready. I hope to be able to go back to the gym and gradually begin light workouts again in a couple weeks.

I could give you a lecture about cheating, but I think deep down I know the only reason that I don't cheat is because I couldn't get away with it. I got some cc at my inlaws house for TG and have been racked (wracked?) with pain for days. I've also been sitting on a heating pad constantly. But it sounds like you're ready. Once you get over the hump and truly start feeling better I don't think you'll be tempted to cheat anymore.

The one thing that still gets me all these 2 1/2 years later is that I still have bad days and like now, bad periods of time where I am just sick...can't get anything done, and it bums me out. So, expect those days, and a possibly slow recovery, but embrace the good days...they are there for you if you are diligent. Good luck.

Share this post


Link to post
Share on other sites

Karen, I can't say that I've treated my body well over the past several years, but it hasn't been on purpose. I think it's easy to see that there has been a bit of denial on my part, especially since the symptoms would disappear for months on end. I could get away with eating whatever I wanted because there were no consequences. The other part of was lack of education. While I was "trying" to eat gluten free, I didn't fully understand the foods and chemicals I needed to stray away from and thought that an occasional cheat wasn't a bad. I blame myself for this.

But I do have to say one thing, respectfully, you don't know me, or my kids, or what kind of parent I am. I take offense to you being critical of me and the example I set for my kids without knowing a thing about me. This is not meant to be unfriendly, but my wife and I are great parents and do the best we can to raise our children as best we can. We probably won't win any parent of the year awards, but we provide a loving home with morals, respect and always try to set good examples.

I understand the mistakes I have made and the position I have put myself into. And I am doing everything I can to correct those things to allow myself to get healthy and remain healthy for a long time to come. I'm educating myself, eating right, and doing the right things for a change. I came here to get support, find people who I can identify with, and possible help others who are going through the same thing, not be torn back down and criticised.

Get well, yes, get well!

Share this post


Link to post
Share on other sites
JNBunnie1    164

But I do have to say one thing, respectfully, you don't know me, or my kids, or what kind of parent I am. I take offense to you being critical of me and the example I set for my kids without knowing a thing about me. This is not meant to be unfriendly, but my wife and I are great parents and do the best we can to raise our children as best we can. We probably won't win any parent of the year awards, but we provide a loving home with morals, respect and always try to set good examples.

All you can really do is try to be a good example. Unfortunately in this case better education and acceptance

of your situation would have made that easier for you. I don't have any children. Instead, I am now a surviving

adult child of what I believe to be a Celiac casualty. I got sick and then went gluten free when I was 19, and tried

very hard to convince my father to do so with me, as there were a number of signs that he had it, and we all

know you have to get it from somewhere! He did not, and three years later he died of leukemia, when I was 22.

There's no guarantee that had he gone along with me at the time it would have changed anything. I do still wish

I could have done something differently to convince him.

Anytime someone slaps you on the wrist here, it is because they are afraid for you. Afraid that you will continue

in denial and ignorance, and that someone else who comes along and reads this conversation in the future will

not recognize the seriousness of the situation. I try to tell as many people my story as possible, so that any

parents out there will read the story of a daughter losing her father and maybe make different decisions than they

have been. I guess that's just another way of trying to set a good example.

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

0

  • Forum Statistics

    • Total Topics
      107,896
    • Total Posts
      938,534
  • Member Statistics

    • Total Members
      65,804
    • Most Online
      3,093

    Newest Member
    Junimoon
    Joined
  • Popular Now

  • Topics

  • Posts

    • Before ordering the endoscopy, you would think they would order the complete celiac panel.  Not all celiacs (like me) ever get a positive TTG (I do test positive to the DGP, but negative to the EMA and TTG).  You would think that the additional blood tests would be way more cost effective than going directly to endoscopy.  The endoscopy usually is still considered necessary for a celiac diagnosis, but there does not seem to be strong evidence that she has celiac disease other than a family history.   Some celiacs are seronegative negative, but your daughter was only negative on just one of the celiac tests.  So, she MIGHT be seronegative.  More investigation is needed.  She is NOT IgA deficient, at least for celiac testing (for celiac disease this test is just a control test).   The DGP test seems to be better for small children.   I do not have the complete health history of your child, but I would seek a second opinion before going to an endoscopy at this time with only one test result.  Try to find a celiac-savvy GI -- one who follows what the American GI Association  recommendations for celiac disease and what the Mayo Clinic or a large celiac research center recommends for testing protocol. https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://gi.org/guideline/diagnosis-and-management-of-celiac-disease/  
    •   Hello linzk8! I would suggest you to go with natural foods as you are allergic to latex. One of my friends had the same problem. She also had latex allergic. She used Indian nuts to lose weight purchased from the official site of Nuez Dela India and achieved a success. You can also check the same. Eating at the right time is also important. Avoid eating very late at night. It's fine to eat in between meals, but limit your proportions. Never starve yourself! Hope this could help you!
    • My family visited Peru (my 13 year old has celiac) last Christmas, and we found Peru rather gluten free friendly. Peru is the land of corn and potatoes, and they have lots of grill meats.   Their cooking ingredients tend to be naturally gluten-free.   We did the 4 day Inca trail hike to Machu Picchu, and our chef did a great job making gluten-free meals for my daughter.  
    • Most physicians follow the joint commission’s guidelines on prescribing HTN medications which usually begin with a diuretic and calcium channel blocker (the amlodipine) - see below. Is it possible that your bp was still not controlled on the CCB (amlodipine)? So the ARB was added? Again, I’d just like to say that just bc a drug does have certain adverse effects does not mean you will have them, but I understand if you would not even want to take the chance, given a previous history of celiac disease. http://www.aafp.org/afp/2014/1001/p503.html “In the general nonblack population, including those with diabetes, initial anti-hypertensive treatment should include a thiazide diuretic, calcium channel blocker, angiotensin-converting enzyme (ACE) inhibitor, or angiotensin receptor blocker (ARB). In the general black population, including those with diabetes, initial treatment should include a thiazide diuretic or calcium channel blocker. If the target blood pressure is not reached within one month after initiating therapy, the dosage of the initial medication should be increased or a second medication should be added (thiazide diuretic, calcium channel blocker, ACE inhibitor, or ARB; do not combine an ACE inhibitor with an ARB). Blood pressure should be monitored and the treatment regimen adjusted until the target blood pressure is reached. A third drug should be added if necessary; however, if the target blood pressure cannot be achieved using only the drug classes listed above, antihypertensive drugs from other classes can be used (e.g., beta blockers, aldosterone antagonists). Referral to a physician with expertise in treating hypertension may be necessary for patients who do not reach the target blood pressure using these strategies.” Drugs for BP in different classes work by different mechanisms. It may be worth it to print out those huge, long drug information sheets and go over them with a fine toothed comb. As for CoQ10, have you checked for coupons online? Can your doctor write you an Rx and get your insurance to pay? They might say it’s on OTC and you have to pay out of pocket, but it may be worth it to find a way around that - would a prior authorization do the trick? I don’t know, just bringing up the questions. In the report you cited, these concluding words were to me, chilling:
      “Therefore, we suggest the possibility of a class effect.” Losartan, olmeseartan - doesn’t matter. And I'll say it again, there must be a way to disseminate this information more widely as I had no idea about this adverse effect, and never heard any docs speaking about it either. It really warrants wider sharing. Finally, one person who is often an overlooked resource is your pharmacist. They have just tons of knowledge and should be able to talk to you in some depth if asked, in an articulate, easy to understand way. They may even be able to do some digging and research for you. Plumbago
    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
  • Upcoming Events