Jump to content

  • 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

Vitamin Levels Ok, Still Exhausted, More Testing

CajunChic

Recommended Posts

CajunChic Explorer
CajunChic
Posted

I've recently had my vitamin levels and thyroid levels checked because of exhaustion. My dr called me to tell me all of my levels were normal and she wants me to follow up with an ENT. (I had an enlarged lymph node.) Saw him and he said my sinuses could be causing me to be tired. Now he wants to do a CT scan, antibiotics after if infection is found, then balloons in my sinuses to increase oxygen flow.

Maybe I spent so much time getting a celiac dx that I'm not wanting to follow through with all of this sinus stuff.

Could this constant sinus pressure be food derived? Should I go through with more testing, more trial and error? Is exhaustion just part of celiac? I've read many stories of people healing their sinuses with their diet, but don't know where to start or if I should.

I'm overwhelmed.

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

Celiac.com Sponsor (A8-M):


NatureChick Rookie
NatureChick
Posted

I had sinus issues, but they cleared up quickly after going gluten-free so I don't know what to tell you. But I'd definitely get a second opinion before getting balloons put in. I'd also try a different type of doctor who might consider other possibilities.

HavaneseMom Explorer
HavaneseMom
Posted

Hi CajunChic,

I have sinus pain and pressure too. Have you tried eliminating dairy? I do notice that I have increased pain/pressure when I eat dairy and I recently learned that it is a known offender for causing some people sinus problems. If you call your ENT, they might have a diet they would recommend that you try. It might be worth a phone call to find out what they say and if they think it could work in your case. I think alot of doctors assume that patients aren't willing to try self help approaches, so those options go unmentioned.

Another thing that I have tried and liked was a Neti Pot. If you haven't tried it before, there are some YouTube videos showing how to use it properly. I'm not going to lie, it does feel a little strange at first, but it does temporarily relieve some pressure.

I do think that the exhaustion hangs on for a while for some of us. I'm not sure how long you have been gluten free, but I have been for 8+months now and am still pretty tired most of the time. Hang in there and I hope you feel better soon.

flowerqueen Community Regular
flowerqueen
Posted

Giving up dairy products can help with sinus problems. I have been plagued with sinus problems almost all my life. When I was diagnosed with Coeliacs disease a few years ago, I had already given up dairy as I was unable to tolerate it and noticed my sinus problems improved.

Other people I know have also given up diary to improve sinus issues. There's only one way for you to find out and that is to try it and see, as nothing works for everyone.

CajunChic Explorer
CajunChic
Posted
  • Author

Thanks y'all. I've been gluten-free for 11 months, with a few hiccups in between. I eat dairy-light as it bothers me. I'll try giving it up completely and see if it helps. Also, thanks for the neti-pot advice. I looked it up and it seems it'll help! I'll def be getting one.

I also think I'll see an acupuncturist and chiropractor for a while. I think I'll give modern medicine a break for now. Thanks for y'all's input!

NatureChick Rookie
NatureChick
Posted

I did have another thought though it is not something I know much about. I know at least one of my real-life gluten-free friends claims to have adrenal insufficiency that was caused by celiac and have seen others comment about it on the forum as well. And I know there are tests for it. I don't know enough to know if it can cause exhaustion though I'm sure you can look it up online.

CajunChic Explorer
CajunChic
Posted
  • Author

I did have another thought though it is not something I know much about. I know at least one of my real-life gluten-free friends claims to have adrenal insufficiency that was caused by celiac and have seen others comment about it on the forum as well. And I know there are tests for it. I don't know enough to know if it can cause exhaustion though I'm sure you can look it up online.

Thank you, I've heard of it but don't know much about it. I'll look it up.

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

get your lab work from the doc, "normal" doesn't mean "optimal".

CajunChic Explorer
CajunChic
Posted
  • Author

get your lab work from the doc, "normal" doesn't mean "optimal".

True Frieze. I definitely will do that and check to see if they're a low normal. Thanks for the reminder!

millerb68 Newbie
millerb68
Posted

Just because you tested normal for thyroid doesn't mean all things are normal. My thyroid levels were "normal" also, but my doctor diagnosed "subclinical hypothyroid" (yet another autoimmune disease) based on some other markers that she explained, but were rather complicated.  I'd never heard of it, but it's real: (Open Original Shared Link Open Original Shared Link now taking T4/T3. 

 

As for sinuses, food allergies can contribute to sinus pain and pressure, as well as dehydration. My migraines almost always start in my sinuses. 

 

I had sinus surgery in 1992. Although I'm sure it has improved since then, it was not pleasant, and didn't take care of the whole problem. 

 

Good luck.

nvsmom Community Regular
nvsmom
Posted

Like the last couple of posters, I was a "normal" thyroid tester for years but it really was hypothyroidism - they just looked at the wrong things.  Definitely get your lab reports.

 

I have found that generally thyroiditis patients feel their best when the TSH is near a 1, free T4 and free T3 are in the 50-75% range of your lab's normal reference range, and TPO Ab should be pretty low. That's not true for everyone, but it is for many - and it was for me.

 

Good luck. I hope you find your answers soon!

CajunChic Explorer
CajunChic
Posted
  • Author

It's been a while, but I got my results from my vitamin test. Though the dr said normal, they were a low normal. my vit D was 39 (range 30-100 norm) and my calcium was an 88.8 (88-90-something norm). I don't want to supplement because I'm scared of overdosing, so I'll add more to my diet. Hopefully I'll be feeling much better! My TSH was really normal(2), lol. So good news there.

I'll continue to find a dietary cause for my sinuses before any medical intervention.

As always, thank y'all for the advice!

HavaneseMom Explorer
HavaneseMom
Posted

Hi CajunChic,

I'm glad you came back to follow up. I know we talked about dairy earlier and I just wanted to let you know that I myself have been off of dairy for 10 days in an attempt to try to relieve sinus pain/pressure/headaches. They have all lessened a bit already and I have had a rather annoying buzzing noise in my left ear for years that is now down to whisper. My doctor always told me that buzzing noise was caused by congestion. It's not easy to give up my beloved cheese and dairy, but I just wanted to let you know that I have seen some improvement and hopefully you will too :-) .

NatureChick Rookie
NatureChick
Posted

CahunChic. I totally agree on skipping supplements for vitamin D because they tend to do very little compared to the side effects or damage they can cause. 

Sun is really the best way to get D levels back up again. One tip for that. The "good" rays from the sun do get blocked by our atmosphere so you get the most of them if you expose your skin at high noon, when the sun has to penetrate the least amount of atmosphere to get to us. The "bad" rays don't get blocked so they hit us all day long. 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,470
    • Most Online (within 30 mins)
      7,748
    Elkay008
    Newest Member
    Elkay008
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.