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

New Here - Please Help! Feeling So Weary...long


LoriG

Recommended Posts

LoriG Contributor

I am on this site everyday, but have not posted yet to this thread. I don't know where else to go....

My whole life I have always felt "sick". In 2001 I was diagnosed hypothyroid. I thought I finally figured out why I just never felt good (depressed, insomnia, fatigued). I was put on synthyroid. After 6 years and many meds to fight my symptoms, I started seeing a natural doctor (5/06). She discovered I had hashimoto's and my free t3 was too low and free t4 was too high (for those of you who understand thyroid). She also said I had candida based on the questionnaire. A saliva test showed depressed cortisol at noon. So it all began......

She put me on armour thyroid and tons of supplements for adrenals and sleep and depression. I started hydrocortisone for adrenals. After 3 months with no change I asked her to increase armour and she suggested an antidepressant. Ugh! So long to her. I started increasing armour and hydrocortisone on my own and just got terribly bad.

In January 07' I started seeing a medical doc who changed my thyroid meds 3 different times because I had no improvement and weaned me off hydrocoritsone. He didn't know what to do with me either. In May, I saw an applied kinesiologist who said I had a gluten allergy based on muscle testing. I wasn't sure what to believe. At this same time my mom died of cancer. So I was dealing with a whole lot of emotional stress.

I attempted a gluten free diet but was so ignorant to it all and I was doubtful of his diagnosis. In August I started seeing a natropath who uses energy fields/biophysics to diagnose. He found celiac disease based on severe malabsorption, adrenals/thyroid, mercury toxicity, a virus called flavivirus, and emotional trauma. As weird as his diagnosis sounded, I really trusted it because I know so many people who he has helped. He treated with homopathic type drops (www.nutrienergetics.com). Month after month went by and mercury got better as well as thyroid/adrenals although I didn't feel much better. That is when I decided to go with enterolab for one more diagnosis. My malabsorption score was 771, positive antibodies 15, one celiac gene, one gluten intolerant gene, positive for dairy. At this point the blood work was negative and too late for a biopsy.

OK.... so that was in 10/07' and here we are 6 months later and I am still so sick! I started working with a nutritionist who has Celiac herself. She is starting with the basics and really seems knowledgeable so I am glad to be working with her. She says I am a complicated case because chronic fatigue is my symptom and we will have to do some digging and I have thyroid disease. I am currently on a complete no grain diet and no dairy. She is taking away one group at a time I think. She told me I should notice improvement after a week if it was the grains. No improvement and it has been over a week. I talk to her again in mid March.

I am taking digestive enzymes, 4500mg vitamin c, fish oil, ground flaxseeds, probiotics, 1300 mg magnesium powder, liquid vitamins, l-glutamine, adrenal extract, 3 grains armour thyroid ( a side note here: my free t3 is still mid range and I know it needs to be increased but I fear doing so because of adrenals).

I asked my natropath about lyme disease and based on his diagnosis he doesn't think I have that. He says that I have a lot going on especially Celiac's and it takes time. Ugh. I truly believe his diagnosis is correct with all of my ailments, I just don't know why his treatment isn't working.

I have called companies about all my products for gluten, I am very careful about cc, I double checked supplements....I don't eat out anymore. I work with my medical doctor who is alternative and he is treating my thyroid. He has tried osteopathic manipulation and no results either. He's at a loss. He suggested the myer's cocktail and see how it goes.

Next week I start IV nutrition once a week called Myer's cocktail (magnesium, b vitamins, vitamin c). My symptoms are mainly chronic fatigue, overall feeling unwell. I have no energy at all even when I sleep 9 hours. My constipation is slightly better as well as insomnia. I have had all the basic bloodwork that doesn't show anemia or any abnormal results. Why is nothing working? What is wrong with me? If it is adrenals why aren't any of the supplements or the hc I took even making a dent in the fatigue? I don't even know what test to take next or where to go to get help. I've been everywhere.

I am so weary and in despair that I can't even think or know what to do next. I am broke from all the money I've spent. I have 3 kids to raise and everyday is a struggle. I am beyond depressed with this journey. My husband doesn't even know what to say to me anymore. I'm impossible to live with.

I recently started exploring the mind/body connection. I have done yoga and worked with a therapist. I have had a lot of emotional trauma in my life and major stresses. I don't

"think" all of it is still bothering me. My therapist says it can be subconscious. I've read every self-help book there is. People have talked to me about the "law of attraction" because of my negative thinking. That I need to be more positive and hopeful. I am trying to change my prayer life around to praying for healing from God and thanking Him for it ahead of time. I am so weary of trying something and being hopeful and then I don't get better and then I'm disappointed. I don't know how to change it around in my mind. And I know people in my life are sick of hearing the same old song and dance with me.

Thank you for reading my very long post about my life. I posted here because I know you all understand and can maybe offer some guidance or new insight.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

I certainly don't have all the answers for you, but wanted to share this recent journal article that you might want to discuss with your nutrionist and/or doctor. I hope that your health improves!

Dig Liver Dis. 2007 Oct;39(10):922-8. Epub 2007 Aug 10.

L-Carnitine in the treatment of fatigue in adult celiac disease patients: a pilot study.

Ciacci C, Peluso G, Iannoni E, Siniscalchi M, Iovino P, Rispo A, Tortora R, Bucci C, Zingone F, Margarucci S, Calvani M.

Gastrointestinal Unit, Department of Clinical and Experimental Medicine, University Federico II, Naples, Italy. ciacci@unina.it

BACKGROUND: Fatigue is common in celiac disease. L-Carnitine blood levels are low in untreated celiac disease. L-Carnitine therapy was shown to improve muscular fatigue in several diseases. AIM: To evaluate the effect of L-carnitine treatment in fatigue in adult celiac patients. METHODS: Randomised double-blind versus placebo parallel study. Thirty celiac disease patients received 2 g daily, 180 days (L-carnitine group) and 30 were assigned to the placebo group (P group). The patients underwent clinical investigation and questionnaires (Scott-Huskisson Visual Analogue Scale for Asthenia, Verbal Scale for Asthenia, Zung Depression Scale, SF-36 Health Status Survey, EuroQoL). OCTN2 levels, the specific carnitine transporter, were detected in intestinal tissue. RESULTS: Fatigue measured by Scott-Huskisson Visual Analogue Scale for Asthenia was significantly reduced in the L-carnitine group compared with the placebo group (p=0.0021). OCTN2 was decreased in celiac patients when compared to normal subjects (-134.67% in jejunum), and increased after diet in both celiac disease treatments. The other scales used did not show any significant difference between the two celiac disease treatment groups. CONCLUSION: L-Carnitine therapy is safe and effective in ameliorating fatigue in celiac disease. Since L-carnitine is involved in muscle energy production its decreased absorption due to OCTN2 reduction might explain muscular symptoms in celiac disease patients. The diet-induced OCTN2 increase, improving carnitine absorption, might explain the L-carnitine treatment efficacy.

LoriG Contributor
I certainly don't have all the answers for you, but wanted to share this recent journal article that you might want to discuss with your nutrionist and/or doctor. I hope that your health improves!

Dig Liver Dis. 2007 Oct;39(10):922-8. Epub 2007 Aug 10.

L-Carnitine in the treatment of fatigue in adult celiac disease patients: a pilot study.

Ciacci C, Peluso G, Iannoni E, Siniscalchi M, Iovino P, Rispo A, Tortora R, Bucci C, Zingone F, Margarucci S, Calvani M.

Gastrointestinal Unit, Department of Clinical and Experimental Medicine, University Federico II, Naples, Italy. ciacci@unina.it

BACKGROUND: Fatigue is common in celiac disease. L-Carnitine blood levels are low in untreated celiac disease. L-Carnitine therapy was shown to improve muscular fatigue in several diseases. AIM: To evaluate the effect of L-carnitine treatment in fatigue in adult celiac patients. METHODS: Randomised double-blind versus placebo parallel study. Thirty celiac disease patients received 2 g daily, 180 days (L-carnitine group) and 30 were assigned to the placebo group (P group). The patients underwent clinical investigation and questionnaires (Scott-Huskisson Visual Analogue Scale for Asthenia, Verbal Scale for Asthenia, Zung Depression Scale, SF-36 Health Status Survey, EuroQoL). OCTN2 levels, the specific carnitine transporter, were detected in intestinal tissue. RESULTS: Fatigue measured by Scott-Huskisson Visual Analogue Scale for Asthenia was significantly reduced in the L-carnitine group compared with the placebo group (p=0.0021). OCTN2 was decreased in celiac patients when compared to normal subjects (-134.67% in jejunum), and increased after diet in both celiac disease treatments. The other scales used did not show any significant difference between the two celiac disease treatment groups. CONCLUSION: L-Carnitine therapy is safe and effective in ameliorating fatigue in celiac disease. Since L-carnitine is involved in muscle energy production its decreased absorption due to OCTN2 reduction might explain muscular symptoms in celiac disease patients. The diet-induced OCTN2 increase, improving carnitine absorption, might explain the L-carnitine treatment efficacy.

Thank you happygirl. This is interesting that's for sure. Would you know how one tested if you were low? Would I just start supplementing with it to see if it helps? This must be an amino acid like l-glutamine right?

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.