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 Our Content
    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. 


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.

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 I just took my doctor's word for it that I was normal and didn't realize that was high (our outdated lab goes up to 6.0 for its reference range).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.

  • 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.

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.

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.

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. 


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
      131,054
    • Most Online (within 30 mins)
      7,748

    GingerTea
    Newest Member
    GingerTea
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Heatherisle
      Sorry, typing error, not strophic, should read strophic!!!! Did it again, atrophic, not strophic, (flippin technology)
    • Heatherisle
      Hi  My daughter has had her endoscopy and biopsies done but still none the wiser as to whether it’s coeliac even though she has many of the signs and symptoms. Gastroenterologist not 100% convinced as herEMAb blood test was negative even though her TTG Ab19 was positive at 19, lab range was 0.0-7.0. Bulb D1 biopsy potentially looked a little flat/strophic, D2 relatively unremarkable. Also found some oesophagitis and mild gastritis, biopsy taken from there. She has also to hand take another stool sample for faecal Calprotectin which I’ve never heard of!! Als advised to trial a gluten free diet. Just wondering if anyone has had similar results. Thanks so much
    • knitty kitty
      Welcome to the forum, @Natalia Revelo! Yes, I've been in a similar situation.  You can read about my journey in my blog here. I found most doctors and others do not pay much attention to vitamins.  Herbal supplements can be helpful, but they can't help as much as supplementing with vitamins.  You're not deficient in herbs, you're deficient in essential nutrients. Vitamins are chemical compounds that our bodies cannot make.  The body must absorb theses essential vitamins from what we consume.  The Gluten Free diet can be low in these vitamins.  Gluten free processed facsimile foods are usually not fortified nor enriched with vitamins to replace those lost in processing like gluten containing foods are required to do.  Malabsorption of celiac disease can cause deficiencies in these essential vitamins as well.  Correction of nutritional deficiencies is essential.  Doctors are not required to complete many hours of nutritional education (twenty hours compared to seven years in medical schools funded by big pharma companies).   There are nine water soluble vitamins, the eight B vitamins and Vitamin C, four fat soluble vitamins, A, D, E and K.  There are about a dozen trace minerals heeded, too.  Without these, our bodies' health slowly deteriorates.   Iron deficiency requires not only iron, but the eight essential B vitamins, and Vitamin C to make red blood cells.  The B vitamins and magnesium and other trace minerals like boron are needed to build the bone matrix.  Vitamin D is needed to regulate the immune system, make hormones and build bones and healthy joints.  Vitamin D helps with depression. The eight essential B vitamins are needed for brain function.  Deficiency in Thiamine B 1 and the other B vitamins can cause weight loss, anorexia, depression, as well as anxiety and panic attacks.   I suffered through the same symptoms because my doctors did not recognize nutritional deficiencies.  I had studied nutrition before switching to Microbiology at university, because I wanted to find out what those vitamins were doing inside the body.  They are instrumental in repairing and healing our bodies.  They are necessary for proper brain function.  Nutritional deficiencies develop over time and our health declines on a sliding scale as our vitamin stores are depleted and not restocked.  Nutritional deficiencies can drag on for years.   Blood tests for nutritional deficiencies in the B vitamins are notoriously inaccurate.  The best way to see if you're deficient is to take B vitamins and look for health improvements.  High dose thiamine can help immensely.  Mitochondria die if there's insufficient thiamine, adding to poor health.  Thiamine Mononitrate is frequently used in vitamin supplements because it won't deteriorate in a jar on a shelf, Thiamine Mononitrate is shelf stable, and is as unreactive in the body as in a jar on a shelf.  Other forms of thiamine are easier for our bodies to utilize.  Benfotiamine promotes intestinal healing.  The form of thiamine called TTFD (tetrahydrofurfuryl disulfide) improves brain function, mental health problems, and therefore body function.   Celiac disease greatly affects ones ability to absorb essential nutrients.  Correction of nutritional deficiencies quickly is important because, well, we've seen how bad our health can get if deficiencies are allowed to drag on for years.  We cannot eat sufficient food to correct  nutritional deficiencies.  Supplementation with essential vitamins and minerals is required.    
    • Natalia Revelo
      TLDR: Despite following a very strict gluten-free diet for 15 years, I have dealt with multiple physical and mental health issues for years, which improved with supplements. My gastro doesn't provide any solution on how to improve nutrient absorption because my MARSH is normal. Dear all, Sorry for the long post but I really need help. I was diagnosed 15 years ago with very severe symptoms (weight loss, tiredness, diarrhea, fainting, hair loss, numbness in hands and feet, anxiety). Since then I have followed a very strict gluten free diet. With time I became extremely sensitive and just a few normal bread crumbs laying on the table while I eat can make me sick if I visit someone. At home my husband and child eat gluten free because I can definitely not have gluten at home. Despite physical improvements after going gluten free, my life as training as a scientist was marked by panic attacks, severe anxiety and depression while trying to obtain my PhD and working as a postdoc. 7 years ago I started to have mini burnouts, fibromyalgia-like symptoms (e.g. unbearable pain in joints and muscles) and not being able to perform at my job. 5 years ago while being pregnant my ferritin levels were practically zero and after delivering my child, my body completely collapsed. I could not walk for the first 2 years postpartum due to severe pelvic floor issues, diastasis, bladder pain and fatigue, which led to me not able to work and getting a massive burnout. Unfortunately my GP was very dismissive of all my symptoms. Eventually I was diagnosed with osteoporosis and this led me to conclude that I have been going through nutrient deficiencies for years, if not decades. With the help of an orthomolecular dietitian I started taking supplements and my pelvic floor and diastasis improved a lot (I think my body was unable to produce collagen for tissue strength) and my burnout started to improve (it seems my brain could not work due to lack of nutrients). My gastroenterologist is too busy to take me seriously, and he doesn't believe my deficiencies are real because he doesn't see it on paper (despite me having low erythrocyte counts and low ferritin). I ended up visiting a functional doctors and she could see deficiencies in magnesium, copper, omega-3, iodine, sodium and markers of inflammation and my microbiota is very imbalanced. She also found that I am allergic to milk protein and eggs and those were giving me IBS symptoms, plus there is a FODMAP group making me sick but haven't found out which. The costs of the supplements I get from the functional doctor and the tests she does are very expensive and I have to pay out of my own pocket. It's very expensive but I'm finally getting stronger and I feel like I have a completely different brain, no anxiety or depression, which is amazing after decades of feeling miserable. I convinced the gastro to check my MARSH score and while in the gastroscopy they did see scar tissue in my duodenum, the histological exam shows no damage in the MARSH score. Therefore, my gastro says I'm fine, but I'm obviously not fine. My question is if anyone has been in this situation, and how can I move forward. I suspect that the inflammation caused by milk and egg could have contributed to poor absortion. The functional doctor gave me iron infusions and my ferritine levels went up and I felt amazing, but after a few months the levels go down again. Somehow I cannot keep the iron in my body. I want to know if there is any possibility of healing my gut. The functional doctor is giving me herb supplements that heal the gut, and I tried taking glutamine but it burns my bladder (I have intersticial cystitis). I really need to go back to work, but first I need my body to have steady health and anergy.  Thanks for any help! 
    • Wheatwacked
      Has your doctor tested your vitamin D?  Urine Iodine deficiency? Vitamin B12 deficiency can be a contributing factor for oral thrush, especial if you are vegan. Celiac Disease causes  malabsorbtion leading to vitamin and mineral deficiencies. Zinc supplementation reduces Candida infections  I know that zinc is an antiviral and have been using zinc glycomate (Cold Eeze lozanges) since 2004 and have not gotten cold or flu since.  The lozenge coats the mucous membrane with zinc, protecting the cell wall from the virus.  This research paper and some others indicate that zinc also acts as an antifungal.  Worth a try, Try to reduce how much food with high omega 6 that you eat to lower your omeaga 6 to 3 ratio.  It helps with inflammation.  Try eating foods with lots of benificial bacteria.  The goal is to repopulate your gut with good guys. Assuming you do not have dermatitis herpetiformis or another reason to limit iodine, Liquid Iodine to raise your iodine to the 600 mcg a day (middle of the RDA range (150-1000mcg)  to boost your immune system.  Iodine has anti-fungal properties that can help kill Candida species.  Your whole body will heal quicker when you have sufficient iodine and vitamin D.
×
×
  • Create New...