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

Being Sick Is My Full Time Job!

feelingbetter

Recommended Posts

feelingbetter Rookie
feelingbetter
Posted

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

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

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
feelingbetter
Posted
  • Author
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
motif
Posted

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
imhungry
Posted

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
Wonka
Posted

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
imhungry
Posted

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

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

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin and low vitamin D. I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,341
    • Most Online (within 30 mins)
      7,748
    Eppie
    Newest Member
    Eppie
    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

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin and low vitamin D. I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.