• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
0
BeccaMeadows

Sick And Tired Of Being Sick And Tired

Rate this topic

Recommended Posts

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!

Share this post


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


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!

  • Upvote 3

Share this post


Link to post
Share on other sites

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. :)

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
Ads by Google:


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. :)

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
      108,915
    • Total Posts
      943,492
  • Member Statistics

    • Total Members
      67,090
    • Most Online
      3,093

    Newest Member
    Angie663
    Joined
  • Popular Now

  • Topics

  • Posts

    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
  • Upcoming Events