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

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.

  • 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. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    2. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    5. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • 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.