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

Life Essence


WendyLee

Recommended Posts

WendyLee Rookie

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

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

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

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

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

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

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

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

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

Are you depressed?

richard

WendyLee Rookie

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,981
    • Most Online (within 30 mins)
      7,748

    Mink38
    Newest Member
    Mink38
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
    • WildFlower1
      The results of my blood tests after 4 weeks: *Tissue Transglutaminase Ab IgA —->   “<0.5 NEGATIVE” *Immunoglobulin IgA —-> “1.25” *Deamidated Gliadin peptide Ab IgG —-> “<0.5 NEGATIVE”    
    • WildFlower1
      Hi there, I have been scouring the forums, medical journals, celiac websites, speaking to my doctor and there seems to be a contradiction in the exact amount of time one must do the gluten challenge for a blood test. Let me please express my gratitude for taking your time to help! I will try and keep this short. In a nutshell, I am positive genetically for celiac. Previously for many years 10+ I have been on a strict gluten free diet. At a very young age, I had infertility, hair loss, low iron, stomach problems, neurological symptoms, continued low bone density etc. etc. all the symptoms that line up with celiac.  I could never get an “official diagnosis” because I was not eating gluten for years.   Recently, I had a bone density scan, and was shocked at the results. I am young and my low bone density is continuously lowering. This lead me  to seriously consider doing the celiac blood test to confirm if I actually have celiac. Years ago, I had an endoscopy and they did a biopsy saying it was negative for celiac - but I had been on a gluten free diet for years. Now, I asked my doctor if I can start the gluten challenge and get this over with. My doctor said two weeks then get the blood test. I have been having 2-3 pieces of bread daily. After four weeks of doing this, I went for the bloodwork - it came back negative for celiac. I am continuing to eat bread daily, it has now been over 6 weeks. I am not able to get an endoscopy. Please, from your experience how long really must I eat bread daily to ensure I do not get a false negative blood test for celiac? I have read up to 12 weeks. One doctor advised this is foolish to even do this gluten challenge as I am damaging my body. My other doctor said 2 weeks eat it, but it showed negative. But with my recent continuous lowering of bone density I personally need to rule celiac out.   Thank you VERY much for your help, I truly appreciate it!!
    • Soleihey
    • Scott Adams
      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
×
×
  • Create New...