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

Life Essence

WendyLee

By WendyLee
in Coping with Celiac Disease

Recommended Posts

WendyLee Rookie
WendyLee
Posted

Hi Guys

Any one who remembers the movie "The Dark Crystal" might recall the poor little creatures having their 'life essence' drained....well that's about how I feel.

I've only been gluten-free since 17 March. Was diagnosed Coeliac with bloodwork and biopsy. The first 10 days of gluten-free was wretched as I went through detox then I notice a bit of a change for the better and nothing since. I wake every morning feeling as though my life essence has been drained. Not much energy and no inclination to do anything. I've been keeping my brain busy by helping index the US 1940 Census through FamilySearch.

I'm trying to eat as well as my lack of appetite will let me. I take a Blackmore's multivit, Caltrate that contains calcium and Vit D, Fish Oil and an extra big dose of Vit D once a month as ordered by the doctor. My bloodwork showed my Vit12 as within the range. What else might I take that could help?

I feel like a wet tissue..........

Patience is one thing I lack and I can't take a pill for that.......

Wendy

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Hi Guys

Any one who remembers the movie "The Dark Crystal" might recall the poor little creatures having their 'life essence' drained....well that's about how I feel.

I've only been gluten-free since 17 March. Was diagnosed Coeliac with bloodwork and biopsy. The first 10 days of gluten-free was wretched as I went through detox then I notice a bit of a change for the better and nothing since. I wake every morning feeling as though my life essence has been drained. Not much energy and no inclination to do anything. I've been keeping my brain busy by helping index the US 1940 Census through FamilySearch.

I'm trying to eat as well as my lack of appetite will let me. I take a Blackmore's multivit, Caltrate that contains calcium and Vit D, Fish Oil and an extra big dose of Vit D once a month as ordered by the doctor. My bloodwork showed my Vit12 as within the range. What else might I take that could help?

I feel like a wet tissue..........

Patience is one thing I lack and I can't take a pill for that.......

Wendy

Have you checked on the gluten free status of the supplements that you take? Revisit everything that goes into your mouth.

You are relatively new to the diet, as intense as it may be, it's had to know the ins and outs. It can be complicated. That's why we are here to help.

AND, depending on your level of damage, it may take some more time to feel a recovery. Make sure that you are eliminating dairy from your diet, at least for a month or two.

You will recover! :)

WendyLee Rookie
WendyLee
Posted
  • Author

Have you checked on the gluten free status of the supplements that you take? Revisit everything that goes into your mouth.

You are relatively new to the diet, as intense as it may be, it's had to know the ins and outs. It can be complicated. That's why we are here to help.

AND, depending on your level of damage, it may take some more time to feel a recovery. Make sure that you are eliminating dairy from your diet, at least for a month or two.

You will recover! :)

Hi Lisa, thx for your reply, yes I went down to my chemist and we went through the list and they appear to be gluten free. The biopsy also showed lactose intolerance so I'm having lactose free milk and butter and no other dairy. Also cutting out as much sugar as I can for the time being. I'm thinking of stopping all pill-taking for a week to see if there isn't something that we're missing. I have found too much corn isn't a good thing.

I think some of the problem are the wrong messages I got from both the doctor and the gastro specialist....both of them said, ok, go on the gluten-free diet and you'll feel much better in a couple of weeks. NO I don't, in fact, I feel much the same as I did before I started the diet but at least the anxiety seems to of gone. I would describe the specialist's approach as almost 'chevalier'.

I need to change my expectations. I have never been a sick person so this is a hard pill to swallow. I want my energy back and I want it yesterday :P

This forum is just the best thing.......

Wendy

Lisa Mentor
Lisa
Posted

Hi Lisa, thx for your reply, yes I went down to my chemist and we went through the list and they appear to be gluten free. The biopsy also showed lactose intolerance so I'm having lactose free milk and butter and no other dairy. Also cutting out as much sugar as I can for the time being. I'm thinking of stopping all pill-taking for a week to see if there isn't something that we're missing. I have found too much corn isn't a good thing.

I think some of the problem are the wrong messages I got from both the doctor and the gastro specialist....both of them said, ok, go on the gluten-free diet and you'll feel much better in a couple of weeks. NO I don't, in fact, I feel much the same as I did before I started the diet but at least the anxiety seems to of gone. I would describe the specialist's approach as almost 'chevalier'.

I need to change my expectations. I have never been a sick person so this is a hard pill to swallow. I want my energy back and I want it yesterday :P

This forum is just the best thing.......

Wendy

Yes, you are a smart lady! Take some time to be careful about your diet and learn new things. Give it some time.

Keep a food diary or anything that can enter your mouth. Keep a daily account. It might revel an issue.

When you recover from your cause, you recovery will be back. :D

Skylark Collaborator
Skylark
Posted

Have you been checked for thyroid trouble? Hypothyroidism does exactly what you are describing and it goes hand-in-hand with celiac disease.

WendyLee Rookie
WendyLee
Posted
  • Author

Yes, you are a smart lady! Take some time to be careful about your diet and learn new things. Give it some time.

Keep a food diary or anything that can enter your mouth. Keep a daily account. It might revel an issue.

When you recover from your cause, you recovery will be back. :D

Many thanks, Lisa, I find your words encouraging....

WendyLee Rookie
WendyLee
Posted
  • Author

Have you been checked for thyroid trouble? Hypothyroidism does exactly what you are describing and it goes hand-in-hand with celiac disease.

Hello Skylark

When I had my initial blood work done, a thyroid function test was ordered. Now I'm clueless when it comes to TFT's but the results were:

TSH 1.3 mIU/L which apparently is in the range of 0.5 - 4.5.

My last TFT was done in 2010 and the result was lower at .58 mIU/L.

.....Wendy

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

That seems OK, though I don't like that it went up. The new range for TSH is 0.5-2.5 but you're still well below 2.5. You could try taking the RDA of selenium if you have other hypothyroid symptoms like dry skin, hair loss, weight gain, or get cold easily. Your thyroid needs selenium to function properly and some people are deficient. Also make sure you're using iodized salt or eating a couple servings of seafood a week to get adequate iodine (assuming you don't have dermatitis herpetiformis).

WendyLee Rookie
WendyLee
Posted
  • Author

That seems OK, though I don't like that it went up. The new range for TSH is 0.5-2.5 but you're still well below 2.5. You could try taking the RDA of selenium if you have other hypothyroid symptoms like dry skin, hair loss, weight gain, or get cold easily. Your thyroid needs selenium to function properly and some people are deficient. Also make sure you're using iodized salt or eating a couple servings of seafood a week to get adequate iodine (assuming you don't have dermatitis herpetiformis).

Morning Skylark, I'm having some selenium in the multivit I'm taking also Iodine. Iodized table salt was the only kind of salt you could buy in Australia in my younger days except cooking salt but now you can get it with or without. But I'll make sure I'm getting enough of both on your advise, many thanks.

.....Wendy

lovegrov Collaborator
lovegrov
Posted

Are you depressed?

richard

WendyLee Rookie
WendyLee
Posted
  • Author

Are you depressed?

richard

No I don't think so, Richard. I did have a lot of anxiety that seems to of dissipated with the GFD. I have a chat to a Councillor about

once a month. I think I'm more angry about the whole darn thing than anything. My DH (Dear Husband) suffers from Chronic Fatigue, has for years and we really didn't need the "healthy" one in the family to come down with anything more serious than a cold :blink: . I've been out of action for 9 months before being diagnosed and he has had to do much of my jobs around the house. I need to get well but then don't we all :)

.....Wendy

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,025
    • Most Online (within 30 mins)
      7,748
    Amari Love
    Newest Member
    Amari Love
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.