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


LoriG

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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.


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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?

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