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Being Sick Is My Full Time Job!


feelingbetter

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feelingbetter Rookie

I haven't posted much. I am 6 weeks gluten free and 2 weeks dairy, soy and corn free. I only eat meat. vegs, fruit and eggs. No processed food.

I am 45 and finally seeing an alternative doctor who feels I have celiac. I am waiting for entero results. He is also treating me for adrenal fatigue, B12 shots, malic acid and betaine hydrochloride to increase stomach acid. I also take very high doses of vitamins. I also take a salt solution to increase electrolyte balance.

I must say the constant body pain is much much better now that I am on this diet. The problem is this fatigue which is so severe. I am very weak and tired most of the time. Yesterday I felt so depressed and just cried and cried. I have been very sick for the last 6 months. I have been exhausted my whole life. Depression is something that I have struggled with since childhood. I lost my career in 2004 as I was so burnt out. I took myself off of anti-depressants in Oct/07 and started taking high doses of vitamins. The depression was gone after 2 months.

I know I am feeling sorry for myself. Most people do not understand how serious celiac is and the damage it can do. I know that I will be understood here.

Thanks Brenda


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RiceGuy Collaborator

Yeah, I do understand how it feels to be exhausted constantly. It does get better, and for me it was magnesium which has helped most. That and just giving the body the time it needs to recover. I would try to sleep a lot, though my body was so messed up I found it nearly impossible to remain asleep long enough to do much good. Thankfully over time it has improved quite a bit since then.

So from my own experience, I'd say make sure you're getting a good magnesium supplement, and that the vitamins are real, not synthetic.

Hang in there. Hope you feel better soon!

feelingbetter Rookie
Yeah, I do understand how it feels to be exhausted constantly. It does get better, and for me it was magnesium which has helped most. That and just giving the body the time it needs to recover. I would try to sleep a lot, though my body was so messed up I found it nearly impossible to remain asleep long enough to do much good. Thankfully over time it has improved quite a bit since then.

So from my own experience, I'd say make sure you're getting a good magnesium supplement, and that the vitamins are real, not synthetic.

Hang in there. Hope you feel better soon!

Thanks RiceGuy- I take a pharmaceutical grade vitamin from Truehope called Empower Plus. The magnesium I am getting is 480 mg. Do you think I need more?

motif Contributor

I had fatigue and weakness since 3 months and slowly getting into depression too, but do you remember that line from the Galaxy Quest movie? "never give up never surrender" :)

BTW isn't that weird we have to search for alternative doctors and therapy? where are all the doctors?

imhungry Rookie

It DOES suck, it IS a full time job, it does stink when you go to a potluck or a luncheon places and you can't eat a thing or very little if you brought it and are the first to dish your serving out andpeople ask you why you are not eating more and you have to explain over and over and over again.

I know how it is. Sounds like you are int he beginning of figuring this out at 2 months. Hang in there. Read everything you can on-line - I got tons of lists of safe foods, safe companies, safe restaurants, and peruse them as much as you can as you build your information bank in your brain.

You are learning a completely new thing - how to manage a chronic disease correctly takes lots of time and energy which you don't have right now. Stick with the foods you know are okay, and then expand slowly from there... Take it slow.

Wonka Apprentice

I hear you. I have fibromyalgia, celiac and at the moment iron deficiency anemia and a wicked sore throat and cough. I have been tired for years but more so lately.

I'm curious about the malic acid for increasing stomach acid. I take it with my magnesium for my fibromyalgia but I have too much stomach acid (GERD). I'm wondering if I should switch to magnesium without malic acid. Anyone have any recommendations? As I am on an antidepressant that cause constipation and I am on iron supplements that have the same effect and I naturally have a sluggish bowel that causes constipation I am on 700 mg of magnesium to just to have a normal BM.

imhungry Rookie

My GERD, for which I was even evaluated for surgery for, went away once I stopped dairy products... something to think about...


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      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
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