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Sick And Tired Of Being Sick And Tired
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This is my first post, and my apologies if this is posted in the wrong area of the forum. I have been reading several posts about people with Celiac Disease and a weak immune system, however most of the topics have shown that it was due to going off of their gluten-free diets.

I started eating gluten-free since I was initially diagnosed through a blood test and later followed up with the biopsy (the day day before my biopsy was the only exception to not eating gluten-free) about 2 years ago this September. Although I do not get nearly as sick as before, I still pick up basically everything that goes around and take a long time to get over it. I also get really weak for about a day every two weeks. I am currently on Midodrine due to syncope fainting spells caused by low blood pressure.

Is there anyone else here who experiences/experienced this? It's been two years and I am extremely frustrated to say the least. It's difficult enough to follow a gluten-free diet at times while also still experiencing some of the side effects I was told should have subsided by now. I am extremely careful of my diet, and I hardly eat out. I have my own gluten free section of the kitchen to prevent any cross-contamination.

Any support is greatly needed and extremely appreciated. Thank you so much!

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This is my first post, and my apologies if this is posted in the wrong area of the forum. I have been reading several posts about people with Celiac Disease and a weak immune system, however most of the topics have shown that it was due to going off of their gluten-free diets.

I started eating gluten-free since I was initially diagnosed through a blood test and later followed up with the biopsy (the day day before my biopsy was the only exception to not eating gluten-free) about 2 years ago this September. Although I do not get nearly as sick as before, I still pick up basically everything that goes around and take a long time to get over it. I also get really weak for about a day every two weeks. I am currently on Midodrine due to syncope fainting spells caused by low blood pressure.

Is there anyone else here who experiences/experienced this? It's been two years and I am extremely frustrated to say the least. It's difficult enough to follow a gluten-free diet at times while also still experiencing some of the side effects I was told should have subsided by now. I am extremely careful of my diet, and I hardly eat out. I have my own gluten free section of the kitchen to prevent any cross-contamination.

Any support is greatly needed and extremely appreciated. Thank you so much!

You definitely are in the right section of the forum - I am not an expert as I was only diagnosed May of this year, but Celiac disease calls for a steep learning curve so I've had to learn quick. Before going gluten-free I was pretty fatigued most of the time and it was either related to the Celiac itself or my iron deficiency. I also experienced syncope for YEARS before realizing that it was most likely related to the Celiac. I would faint in the shower, at the gym, and yes, even during intimate moments with my fiance (so mortifying!!!) Here are my thoughts - are you taking a multi-vitamin or supplement? Have you had blood work to see if you're deficient in anything? They have gluten free supplements at GNC and Whole Foods and I believe that it helped tremendously for me. If you're not taking one, I would recommend considering it. Also, I've been seeing a nutritionist who is experienced in working with Celiac patients who is also helping me to eat the RIGHT foods. Going gluten free isn't always healthy if you're loading up on the gluten-free replacement foods. The nutritionist is showing me how to get nutrients into my damaged GI system in different ways such as making homemade beef/chicken broth to ease the GI tract while providing nutrients. She also has me juicing now to get additional fruits and veggies into my system (which I HATE eating). I feel your pain on this but there are tons of incredibly knowledgeable people on this site who I know could give you great information as well. Feel free to vent anytime...I hope some of this was helpful!

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This is one of those situations where, if you have any tendency to be a bit..... compulsive about something, you can use it to your advantage.

Anytime I go somewhere, anywhere, the first thing I do when I come home is that I wash my hands. I even do this before putting groceries away, and then afterwards again, when they're put away. I also try to keep my hands away from my face, while in public, as not rubbing my eyes, etc, so less chance of picking up germs then getting them near the mucous membranes. And I try to shop at hours when the stores are less crowded. I can't believe some people, the way they just hack and cough with their mouths uncovered, and wipe noses like la dee dah, no consequences for anybody else. Oh, and those cell phones they carry around everywhere ? Do you think they ever think to clean those things off ? HAH ! Not likely.

My spouse and I went out to eat last week, and we're sitting there late in a nice restaurant (w/ a gluten-free menu) with about 3 other couples at other tables nearby, quietly talking, and these other sets all have one person alternately looking bored, and playing with a cell phone constantly. Wow. Talk about wasted ambience. :rolleyes::ph34r::blink:

Won't help with the fainting, but the hand washing may cut down the germs. :)

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Hi Becca,

I can relate. I have been gluten-free now for about 15 months and am still struggling with frequent colds, canker sores,an and fatigue as well as other random symptoms. I never really know whether they are connected to celiac or not. Maddening! Although I am still having canker sores and colds (was going to write my own post about this) I can say that I have felt better in general, going in the right direction, since seeing a naturopath, eliminating more foods such as dairy, eggs, and grains, and increasing my intake of green vegetables (she has me eating at least 6 servings of veggies in general per day). For the most part I feel like I am going in the right direction, though I too still get frustrated. No one else I know gets colds so often! Anyway--much love for you on this path, we know it's not a simple one.

This is my first post, and my apologies if this is posted in the wrong area of the forum. I have been reading several posts about people with Celiac Disease and a weak immune system, however most of the topics have shown that it was due to going off of their gluten-free diets.

I started eating gluten-free since I was initially diagnosed through a blood test and later followed up with the biopsy (the day day before my biopsy was the only exception to not eating gluten-free) about 2 years ago this September. Although I do not get nearly as sick as before, I still pick up basically everything that goes around and take a long time to get over it. I also get really weak for about a day every two weeks. I am currently on Midodrine due to syncope fainting spells caused by low blood pressure.

Is there anyone else here who experiences/experienced this? It's been two years and I am extremely frustrated to say the least. It's difficult enough to follow a gluten-free diet at times while also still experiencing some of the side effects I was told should have subsided by now. I am extremely careful of my diet, and I hardly eat out. I have my own gluten free section of the kitchen to prevent any cross-contamination.

Any support is greatly needed and extremely appreciated. Thank you so much!

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Thank you so much for all your comments and support!

Goodness Laura, I hope the fainting spells are getting better for you! That would be so bad. I had moments where I would get dizzy during intimate moments with my boyfriend, but I haven't full-out fainted. I don't faint like I used to all the time, I had to be put on midodrine to help with my blood pressure. Hopefully eating gluten-free will help with yours. I am taking a lot of vitamins and seeing a N.D. I'm about to start a detox which I have been told will help with any toxicity in my system and I'm hoping I'll feel a lot better once it's done and allow my body to retain nutrients better. Other people being sick is a huge problem because getting sick is what my immune system seems to do best. Hopefully something will work to help with immunity. The juicing sounds really good actually. Have you heard of Kriss Carr? She has an amazing book which has a ton of juicing recipes. Hopefully you'll find one that is more tasty for yourself.

Thank you all again, and if you find something that gives your immunity a big kickstart please do keep me updated!

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I really do need to start being more compulsive about germs though, especially touching my face. It's so hard to stop because you hardly realize you're doing it. But some people really do have a lack of courtesy as if they're trying to spread the plague, ack.

And I used to get really bad canker sores. I heard water and sea salt helps them go away although it may sting a little. It's worth a shot if anything. I hope they get better, but I'm happy that you're feeling a lot better already.

Do you get your antibodies checked through a blood test on a regular basis at all?

Thank you. :)

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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