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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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    • catnapt
      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
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