• 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.

Sick And Tired Of Being Sick And Tired
0

6 posts in this topic

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!

0

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!

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. :)

0

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!

0

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!

0

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. :)

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
0

  • Forum Statistics

    • Total Topics
      106,420
    • Total Posts
      930,454
  • Member Statistics

    • Total Members
      63,845
    • Most Online
      3,093

    Newest Member
    Gaerty
    Joined
  • Popular Now

  • Topics

  • Posts

    • Have been dealing with splinter hemorrhages on three of my toe nails since February. I did go to my doctor who rightly so did a very complete blood work-up ruling out other diseases such as lupus and RA and referred me to several other doctors to make sure that it was not cancer, endocarditis, or something serious. I went to the doctors.   I have done some research on vitamin deficiency and it seems that some link splinter hemorrhages to vitamin C deficiency. For the past 2 1/2 weeks I have been eating 3 clementines a day (in addition to the usual multivitamin that I take) and it seems to be helping the splinter hemorrhages. One has grown out and not returned. Visited my GI doctor today and talked about malabsorption of nutrients as a potential issue. We are doing more blood work and checking nutrient levels.  I have to believe it has something to do with the celiac. Sorry I don't have a better answer, but like you am trying to figure this out. Please let me know if you find any answers, and yes, be sure to check with your doctor to rule out anything serious.
    • You only need one positive on the celiac panel.  I tested positive only to the DGP IgA and had a Marsh Stage IIIB intestinal damage.   Good luck!  
    • Welcome to the forum.  First, you need to get copies of your celiac test to confirm you actually had it done and what the results were.  Second, to confirm a diagnosis, you must obtain biopsies via an endoscopy.  Were the doctors gastroenterologists?  Third you need to research  celiac disease.  Yes, you can be asymptomatic, but could still have instestinal damage as the small intestine is vast. here is a good place to start:  http://www.cureceliacdisease.org/screening/ You might think you are a silent celiac, but ever been anemic?  Had your bones checked?  
    • That's good to know about Texas Children's, unfortunately I don't believe they accept our insurance. Our former pediatrician joined with one of their medical groups and we had to find a new one due to insurance. I'll check out their site though.
    • 9 months ago I went to my doctor for normal blood work.  She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high.  I should probably stop eating gluten since it looks like I have celiac.  She hung up and I never heard from her again.  I cut out gluten completely, even though I have never experienced one single symptom of celiac.  9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet.  All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone.  This angers me tremendously on two counts.  One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened".  Two, the complete lack of information or support from both doctors is horrifying to me.  And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again.  I would never know the difference.  I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free.  Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten.  I could just pretend I never heard from either terrible doctor and go on living my life.  Someone has to have been in the same situation as me, right?
  • Upcoming Events