Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

gluten-free For 2 Years, Now What?


Npealer

Recommended Posts

Npealer Rookie

Last week was the 2 year anniversary for me being diagnosed with celiac disease.  Overall I feel 100% better than I did two years ago.  Like most of you I have a few vitamin deficiencies to deal with.  So here I am still dealing with other issues.  For the last year and a half I've gained 15lbs (i know this can be related to celiac disease)  Extreme tiredness for the last 4-5 weeks, I have had issues with my hair and skin being dry, Brittle nails. I get 8-9 hours of sleep a night and yet still tired daily to the extreme.  Tired of being tired.   I have been tested for my thryroid but it's been a year or more since the last test.  I have emailed my doctor about following up with her.  

 

So for all you who have been gluten-free for awhile does this seem par for the course?  Knowing my luck my Doc will tell me it's all still related to my celiac disease but not much more I can do at home to be gluten-free at this point.  Have any of you had normal thyroid test and then within a year that changed?  TIA for any info you may have. 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mommida Enthusiast

Yes your thyroid can change drastically in a short amount of time.  Vitamin defiencies can also make you exhausted.  Get these things tested again.

Link to comment
Share on other sites
nvsmom Community Regular

Before I knew I had celiac disease or hashimoto's, I had my doctor check my thyroid (I was having symptoms) and my TSH went from a 6.8 to a 4.7 in two weeks entirely on its own. I just took my doctor's word for it that I was normal and didn't realize that was high (our outdated lab goes up to 6.0 for its reference range).  When they "discovered" my Hashi's 8 months ago, my TSH went from a 15 something to a low 14 in just 2 weeks..... A TSH can change by the day, week or season (higher in winter) never mind over a year; yout thyroid could very well be out of whack.

 

If you do get your thyroid rechecked request:

 

TSH - should be near a 1

Free T4 and free T3 - should be in the 50-75% range of your lab's normal reference range

TPO Antibodies - should be basically non-existent

 

Good luck.  :) I hope you find some answers soon.

Link to comment
Share on other sites
  • 10 months later...
MegRie Rookie

Last week was the 2 year anniversary for me being diagnosed with celiac disease.  Overall I feel 100% better than I did two years ago.  Like most of you I have a few vitamin deficiencies to deal with.  So here I am still dealing with other issues.  For the last year and a half I've gained 15lbs (i know this can be related to celiac disease)  Extreme tiredness for the last 4-5 weeks, I have had issues with my hair and skin being dry, Brittle nails. I get 8-9 hours of sleep a night and yet still tired daily to the extreme.  Tired of being tired.   I have been tested for my thryroid but it's been a year or more since the last test.  I have emailed my doctor about following up with her.  

 

So for all you who have been gluten-free for awhile does this seem par for the course?  Knowing my luck my Doc will tell me it's all still related to my celiac disease but not much more I can do at home to be gluten-free at this point.  Have any of you had normal thyroid test and then within a year that changed?  TIA for any info you may have. 

Nicole,

 

Have you had any luck with figuring out what was making you so tired, or how to have more energy.  I've been gluten-free for about 3 years now.  Overall I feel so much better, but over the last few months I have been extremely tired again.  I started taking vitamins and those seem to be helping, but I feel like fatigue is a pretty consistent issue with me.

Link to comment
Share on other sites
cyclinglady Grand Master

Nicole,

 

Have you had any luck with figuring out what was making you so tired, or how to have more energy.  I've been gluten-free for about 3 years now.  Overall I feel so much better, but over the last few months I have been extremely tired again.  I started taking vitamins and those seem to be helping, but I feel like fatigue is a pretty consistent issue with me.

How is your thyroid? My first hypo symptom has always been slowing down while running and just not feeling strong. As it worsens, I find that I have to take lots of work breaks, eyebrows thin at the outer edges and I feel a bit cold. Anemia causes fatigue for me too as well as shortness of breath. It was basically my only symptom that my caused my doc to suspect celiac disease.

Link to comment
Share on other sites
nvsmom Community Regular

Nicole,

 

Have you had any luck with figuring out what was making you so tired, or how to have more energy.  I've been gluten-free for about 3 years now.  Overall I feel so much better, but over the last few months I have been extremely tired again.  I started taking vitamins and those seem to be helping, but I feel like fatigue is a pretty consistent issue with me.

 

My hypothyroidism had a large impact on my energy. Treating it just halfway made no difference, I had to get it to the perfect level with a different medication that is normally prescribed - and it took almost a year to get there. Hypothyroidism can slow your metabolism by 30%; if it's a factor for you, treating it can make a great difference.

 

If you check your thyroid, ask for:

TSH -should be close to a 1 regardless of your lab's range

free T3 and freeT4 -  should be in the 50-75% range of your lab's normal range. Do not test T4, T3 or total T4 and Total T3 as those won't tell you as much.

TPO Ab - should be low

 

I do still get what I call "autoimmune flare-ups" where I get more tired, almost fluish, headaches, joint pains and more headaches. I am guessing that is related to my celiac disease or thyroiditis but it could be something else.

 

Diet is a large factor for me too. If I eat a lot of carbs or sugars, I get the blahs.

Link to comment
Share on other sites
BelleVie Enthusiast

Just jumping in here to suggest that it's also possible to OP has developed another food intolerance. It might be a good idea to do a food diary and take a good look at commonly intolerant foods, like soy and corn. 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,098
    • Most Online (within 30 mins)
      7,748

    Levi K
    Newest Member
    Levi K
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Oh, okay. The lower case "b" in boots in your first post didn't lead me in the direction of a proper name. I thought maybe it was a specialty apothecary for people with pedal diseases or something.
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:    
    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
×
×
  • Create New...