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What Supplements Do You Take Daily?

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IrishHeart Veteran
IrishHeart
Posted

IrishHeart,

Thanks so much for the feedback on Curamin (or Curaphen?). I had suggested it to another poster here, and she mentioned that it didn't seem to help her. It's helped my mother and me quite a bit....so I'm glad you're seeing some benefit from it, too. Yay!

If you're interested, there are several other things I take for bone/muscle/connective tissue pain. I take Dr. Christopher's Joint Formula and also his Tissue and Bone Formula. This combination was recommended to me by another celiac sufferer with joint/bone/connective tissue problems, and they have helped me tremendously. Whenever I stop taking them, the pain returns within a few weeks' time, so now I faithfully take one capsule of each daily. They're very inexpensive, by the way. In addition, I also take a ratio of Omega 6's to Omega 3's in oil form to help with muscle pain. To do this, I take 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of either safflower oil or grapeseed oil. I mix these into a small glass of juice once a day. I suffered from muscle pain and lactic acid pain since I was a small child, but I started taking these oils at the recommendation of an author (Brian Peskin, who wrote, "The Hidden Story of Cancer"), and the pain has never come back. I hardly recognize my own body--no more pain!!

I wish you a long, healthy, and painfree life, my friend...

You can believe me because I've been around since 1910!

Rose--at 101, you are something!! :lol: Some days, I FEEL like 101... :rolleyes:

I took a look at the Dr. Christopher's formulas a while back--long before I knew I had celiac and was suffering from this pain. Interestingly, I had consulted a Naturopathic Doctor for help and she had me on just about ALL of those herbals at one point or another. It was crazy what I took for 18 months. What happened? NOTHING. Not because herbals don't help --many people report their effectiveness---but because I was just so sick and inflamed. I do not think anything was getting IN my system.

Right now, I am taking a bone formula, the curaphen, fish oil. The oils you mention---well, I tried taking them by the teaspoonful--and well, let's just say, they did not stay down :blink: Maybe I can try them again. I believe Dr. Wilson also suggests these oils in his book about healing Adrenal Fatigue. The point of any supplementation is REDUCE the inflammation, reduce the pain.

I am happy for you that you have found relief from your lifelong pain. :)

I continue to have faith that I, too, will get more relief as I heal my gut. :) Thanks for your suggestions!!

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

thanks AVR. I've learned to ask the Dr. for copies of the reports of all tests.

I wondered when my digestive issues turned into malabsorption and asked for copies of the blood work I had done in the past 2.5 years. The Dr. had told me everything was fine after each one, but I found several that weren't fine. Some of my levels were quite low. If he had said so I could have taken suppliments and maybe saved my health a bit?

I ask for everything now!

IrishHeart Veteran
IrishHeart
Posted

I learned the hard way about asking for test results and to ask WHY something was low or abnormal in the results. When I still naively trusted doctors and did not question anything, (dope that I was) I took every damn pill that was suggested and had whatever test they told me to take-- going on the premise that they knew best and whatever they gave me would certainly help me. :rolleyes:

WRONG!! <_<

One doctor's office called and said I was anemic and needed to take iron. That was a disaster. My ONE red blood cell count was slightly low. Taking iron was really bad for my stomach. I stopped taking it. My RBC is fine.

They also told me I had Hashimoto's thyroiditis and to take Synthroid. When I reported over-agitation, heart palps, insomnia, etc...they said it was not because of the meds, but I felt in my heart that I was on medicine for no good reason. I was too sick with undiagnosed celiac at the time and had trouble concentrating, articulating and was very ill and so, I stopped questioning after several attempts to get anyone to see I was in real trouble. I kept reading (which was not easy given how ill I was) and I went to another doctor, had him check my TSH and thyroid antibodies---NORMAL. I went off the medicine and now, my thyroid is functioning normally. What happened? Inflammation from celiac had supressed the thyroid and gave me "thyroiditis" but taking medication had made me HYPERthyroid. My hair fell out at a steady clip. No one thought this significant? Arrgh!! In truth, I need NO medication and should never have been put on it in the first place.

My PC's office told me (back in 2007) that I needed to take B-12. (I had complained of severe fatigue) I never asked why--but realize NOW that was one form of anemia associated with celiac disease. Further testing showed nothing else... Why? Because they did not test appropriately---I was still exhausted all the time. For 3 more years! I finally started reading what should be looked at when DXed with celiac...I asked him to check my Folate and ferritin storage levels. These are common deficiencies in celiacs--and guess what? That's what it was! <_<

Why did I have to figure it out? :angry: The doctors know little about celiac and so, you really need to be your own best advocate. Now that BOTH my B-12 and Folate (B9) levels have been corrected, I have NO crippling fatigue. (yaaay!) Once leveled off, my doctor told me "STOP with the supplements--you're good!!"

The Excellent GI doctor I see now (I "fired" my GI, my endo and my PC doctor--they screwed me up royally for 12 years) was absolutely appalled at what happened to me. He said had I not been my own best advocate, he does not know what would have become of me. He is the one who told me stop taking so many B vitamins--that they were in fact, causing more harm than good. In a few weeks, my "nervous agitation" stopped. Here I was, taking all those supps, upon the advice of a naturopath and an "integrative MD" ---and following the well-meaning advice of others--and it was really unnecessary. I was so determined and desperate to feel better that I took anything/everything. Now, I only take the things I am deficient in (like EFAs and cal/mag and D) and my blood panels are mostly EXCELLENT.

Once your system absorbs food and nutrients properly, you will obtain vitamins and minerals from FOOD, as the body is designed to do so.

All I can say is:

Demand test results. Learn what they all mean. Sed rate, CBC, cal/mag, etc. --these all may be affected in celiac.

ASK why any levels are off. There's almost always a reason.

Make sure the doctor follows up every few months.

I would not wish what happened to me on anyone. Ill and in horrible pain for YEARS. (Told I have fibromyalgia, irritable bowel, GERD, gastritis, colitis, thyroditis, pancreatitis, costochondritis, vaginitis, blepharitis, glossitis, cystitis, sacroiliitis, etc, etc, blah blah blah arrgh!. --Okay!-but WHY do I have these things??? What the heck is going on??? I just kept asking!!!!No one could tell me why.... but I figured it out!

I have INFLAMMATION from celiac and it caused ALL those "syndromes" and "itises"...I have NONE of those now--except osteoarthritis! Still have that "itis"--- and will for life. :( I also suffered a few other things as a RESULT of the inflammation and I hope they disappear or lessen in time.

I no longer take a doctor's word as gospel and I question EVERYTHING. If he/she doesn't like, too bad. I work with this one celiac-savvy GI doctor now who happily discusses my health concerns and never pushes drugs or supplements I do not really need. All those meds I took for arthritis? They just eroded my intestinal walls and between them and the celiac, I have a long way to go to heal.

Best wishes, everyone--it's okay to question doctors. They do not know everything! Did not mean to rant, but I feel bad when I see so many on here trying to "self-medicate" in a sense, with supplements, because they feel so lousy and want relief. Been there/done that. :rolleyes:

Cheers, IH

AVR1962 Collaborator
AVR1962
Posted

thanks AVR. I've learned to ask the Dr. for copies of the reports of all tests.

I wondered when my digestive issues turned into malabsorption and asked for copies of the blood work I had done in the past 2.5 years. The Dr. had told me everything was fine after each one, but I found several that weren't fine. Some of my levels were quite low. If he had said so I could have taken suppliments and maybe saved my health a bit?

I ask for everything now!

Oh same here. I try not to even think that way. I know if I would have depended on my doc (old doc) :D I would be in serious trouble right now.

IrishHeart Veteran
IrishHeart
Posted

Oh same here. I try not to even think that way. I know if I would have depended on my doc (old doc) :D I would be in serious trouble right now.

DITTO! I was headed for (1) a wheelchair (2) a mental health ward or (3) a coffin if I had continued to listen to the doctors I was seeing.

Even after my DX, not one apologized for missing it. And yes, I told them all......

SHUDDER...glad that's behind me now and we are, instead, chatting on here.... :)

Just hang in there, everyone--it does get better every month you remain gluten-free!

AVR1962 Collaborator
AVR1962
Posted

DITTO! I was headed for (1) a wheelchair (2) a mental health ward or (3) a coffin if I had continued to listen to the doctors I was seeing.

Even after my DX, not one apologized for missing it. And yes, I told them all......

SHUDDER...glad that's behind me now and we are, instead, chatting on here.... :)

Just hang in there, everyone--it does get better every month you remain gluten-free!

You too, huh? Makes me wonder what in the world they are thinking, what they are looking at and why, when you have all the low marks, would they not investigate this? Like I said, I hate to even think that way. I feel lucky to have requested copies of my labwork when I did which was less than 3 months after the onset of my hard symptoms.

I try to think what I am thankful for rather than what could have been prevented. I really really did not think gluten was causing my issues and I went on the gluten-free diet as a request from my adult daughter. Food allergies run in my family but I thought I was exempt. I did this as a last-ditch effort, mostly because I felt I had nothing to lose so I am forever grateful my daughter did not stop asking me to give up wheat just to "try." Oddly enough when docs thought this was all because of a bad parathyroid gland, a new student signed up for piano lessons and the mom just happened to tell me she had some real issues with memory. Realize it's not dawning on me yet. I am telling her about my parathyroidism while she is describing her very same syptoms as a diagnosed celaic. She was the one that truned me on to reading more about celiac and lead me to this group. Now how coincidental is that? Everything I have learned has been thru other people, reading, not thru my docs. Thank goodness for you all here and for this group!!!

IrishHeart Veteran
IrishHeart
Posted

She was the one that truned me on to reading more about celiac and lead me to this group. Now how coincidental is that? Everything I have learned has been thru other people, reading, not thru my docs. Thank goodness for you all here and for this group!!!

There are no coincidences kiddo! ;) Things happen as they are supposed to.

It takes another person with this thing to see it in another. You know the little boy in the movie who "sees dead people" everywhere? well, "I see celiacs everywhere" :blink: --because I can recognize the "walking dead" from gluten intolerance. I educate anyone I can.

It was my cousin's wife (a celiac) who started me thinking about celiac (I had "googled" my symptoms for a while and was often led to this site, but the doctors did not think that was it) She knew my struggle for years and said "I think you have a gluten issue!" I agreed. Hubby did, too.

Your daughter is one smart cookie! and kuddos to you for resolving your own health issues. You cannot imagine the hell I went through for nearly 4 years---well, more than that if you look at my health history--before I FIGURED IT OUT MYSELF and brought it back to my PC guy. The rest is history. His OWN CHILDREN are celiacs! he was stunned ....still has not apologized, but has been humbled and said "I just did not know how it manifested in adults...."

Regarding my earlier admonition about too many supps, I want to add---just do whatever is best for YOU. Just be careful, as I do not want anyone to suffer ill effects, that's all. I did not mean to sound like a "know it all" :rolleyes: ---I am hardly that!!! :lol: :lol:

Best wishes!!

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

I didn't take your warning as you being a "know it all" Irish. I took it more as "been there done that," and you wanting to give others a "heads up".

Before I was DXed I had been adding various suppliments. I knew I wasn't eating much and certainly not a balanced diet. I knew something was very wrong, but my Dr. just wouldn't listen. He told me to eat Tums.

I guess Dr.s aren't trained to search out WHY we have symptoms..just how to counteract the symptoms? It keeps the drug companies in business!

So..I have a new PCP. I told her I was just DXed with Celiac. She questioned my DX because I'm too old to be newly Dxed. I told her I seemed to be reacting to soy now too because I get migraines, dizziness, nausea,and pain in my joints etc. She said "soy can't do that."

Then I showed her a bump growing on my index finger. I had a Basal cell skin cancer last year. It had been let go and was quite a brutal surgery on my face. I said the bump on my finger looks a lot like that cancer did when it was new. She told me basal cell cancer only grows on your face/head area. It must be a wart, which could be frozen off.

I went to the Dermatologist for reconstructive surgery 2 weeks ago. I asked him about the bump on my finger. He said I needed to get it biopsied.It was absolutely NOT a wart..and basal cell can grow anywhere.

I went to get it biopsied and was told it's a ganglion cyst(caused by arthritis that I was told I didn't have). It's too dangerous to biopsy, so if it had been messed with I could get infection in the knuckle and lose function at the least..or the end of my finger if it got real bad. I go for surgery to have it removed by a hand specialist Tuesday.

So far..every single thing I've talked to the new Dr. about has shown me she doesn't have a clue! It's really scary.:o

IrishHeart Veteran
IrishHeart
Posted

s!

So..I have a new PCP. I told her I was just DXed with Celiac. She questioned my DX because I'm too old to be newly Dxed. I told her I seemed to be reacting to soy now too because I get migraines, dizziness, nausea,and pain in my joints etc. She said "soy can't do that."

So far..every single thing I've talked to the new Dr. about has shown me she doesn't have a clue! It's really scary.:o

She's DEAD WRONG. That is OLD school thinking---that it is a "childhood disease" . They also used to think people could recover and resume a gluten filled diet!!!--and now, there's a whole generation of us over 40 with celiac disease--suffering all our lives from various diseases and complications. For pete's sake what BS!! :blink: People are DXed in their 40s, 50s, (me) 60's, 70's (there are a few on this board!)

Sorry, this doc is CLUELESS!!

You may well be reacting to soy or dairy as secondary food intolerances often occur with celiac disease, but we do not realize them until we start to heal after eliminating gluten.

sa1937 Community Regular
sa1937
Posted

She's DEAD WRONG. That is OLD school thinking---that it is a "childhood disease" . They also used to think people could recover and resume a gluten filled diet!!!--and now, there's a whole generation of us over 40 with celiac disease--suffering all our lives from various diseases and complications. For pete's sake what BS!! :blink: People are DXed in their 40s, 50s, (me) 60's, 70's (there are a few on this board!)

Interesting article in Living Without about older people being diagnosed. Open Original Shared Link

IrishHeart Veteran
IrishHeart
Posted

Interesting article in Living Without about older people being diagnosed. Open Original Shared Link

Thanks, Sylvia! :)

My Mom will be happy to read it.

BTW, she's 84 and since going gluten-free right after my DX and our gene testing, she feels great! ;)

Now, if her daughter could just catch up.... :lol:

sa1937 Community Regular
sa1937
Posted

Thanks, Sylvia! :)

My Mom will be happy to read it.

BTW, she's 84 and since going gluten-free right after my DX and our gene testing, she feels great! ;)

Now, if her daughter could just catch up.... :lol:

I love your feisty spunky 84-year old Mom!!!

IrishHeart Veteran
IrishHeart
Posted

I love your feisty spunky 84-year old Mom!!!

Well, you know some of the stories I've told about her and yes, she's quite a character! ;) If she can go gluten-free at her age and not think it such a "big damn deal" (her words) , anyone can. :lol:

sa1937 Community Regular
sa1937
Posted

Well, you know some of the stories I've told about her and yes, she's quite a character! ;) If she can go gluten-free at her age and not think it such a "big damn deal" (her words) , anyone can. :lol:

YES!!! Like mother, like daughter!!! :D

IrishHeart Veteran
IrishHeart
Posted

YES!!! Like mother, like daughter!!! :D

:lol: :lol: aw, shucks....thanks....

jswog Contributor
jswog
Posted

Thanks, Sylvia! :)

My Mom will be happy to read it.

BTW, she's 84 and since going gluten-free right after my DX and our gene testing, she feels great! ;)

Now, if her daughter could just catch up.... :lol:

And please keep the stories about you're YOUNG 84 year old mom coming! I'm still laughing about the tomato soup story... It really made my day!

AVR1962 Collaborator
AVR1962
Posted

There are no coincidences kiddo! ;) Things happen as they are supposed to.

It takes another person with this thing to see it in another. You know the little boy in the movie who "sees dead people" everywhere? well, "I see celiacs everywhere" :blink: --because I can recognize the "walking dead" from gluten intolerance. I educate anyone I can.

It was my cousin's wife (a celiac) who started me thinking about celiac (I had "googled" my symptoms for a while and was often led to this site, but the doctors did not think that was it) She knew my struggle for years and said "I think you have a gluten issue!" I agreed. Hubby did, too.

Your daughter is one smart cookie! and kuddos to you for resolving your own health issues. You cannot imagine the hell I went through for nearly 4 years---well, more than that if you look at my health history--before I FIGURED IT OUT MYSELF and brought it back to my PC guy. The rest is history. His OWN CHILDREN are celiacs! he was stunned ....still has not apologized, but has been humbled and said "I just did not know how it manifested in adults...."

Regarding my earlier admonition about too many supps, I want to add---just do whatever is best for YOU. Just be careful, as I do not want anyone to suffer ill effects, that's all. I did not mean to sound like a "know it all" :rolleyes: ---I am hardly that!!! :lol: :lol:

Best wishes!!

I absolutely agree about the vitamin toxity, scarring stuff. I am doing so so much better and just very very thanksful! I, like you, want to help as many as I can. I too see people suffering. I look at people eating glutens and think of the damage they could be doing to themselves and not even relaize it. Glad you are doing better, I too just want to put the horror I went thru behind me.

AVR1962 Collaborator
AVR1962
Posted

I didn't take your warning as you being a "know it all" Irish. I took it more as "been there done that," and you wanting to give others a "heads up".

Before I was DXed I had been adding various suppliments. I knew I wasn't eating much and certainly not a balanced diet. I knew something was very wrong, but my Dr. just wouldn't listen. He told me to eat Tums.

I guess Dr.s aren't trained to search out WHY we have symptoms..just how to counteract the symptoms? It keeps the drug companies in business!

So..I have a new PCP. I told her I was just DXed with Celiac. She questioned my DX because I'm too old to be newly Dxed. I told her I seemed to be reacting to soy now too because I get migraines, dizziness, nausea,and pain in my joints etc. She said "soy can't do that."

Then I showed her a bump growing on my index finger. I had a Basal cell skin cancer last year. It had been let go and was quite a brutal surgery on my face. I said the bump on my finger looks a lot like that cancer did when it was new. She told me basal cell cancer only grows on your face/head area. It must be a wart, which could be frozen off.

I went to the Dermatologist for reconstructive surgery 2 weeks ago. I asked him about the bump on my finger. He said I needed to get it biopsied.It was absolutely NOT a wart..and basal cell can grow anywhere.

I went to get it biopsied and was told it's a ganglion cyst(caused by arthritis that I was told I didn't have). It's too dangerous to biopsy, so if it had been messed with I could get infection in the knuckle and lose function at the least..or the end of my finger if it got real bad. I go for surgery to have it removed by a hand specialist Tuesday.

So far..every single thing I've talked to the new Dr. about has shown me she doesn't have a clue! It's really scary.:o

That is extremely scary! The very people we lean on to help us and they have no clue. Best to you!

IrishHeart Veteran
IrishHeart
Posted

And please keep the stories about you're YOUNG 84 year old mom coming! I'm still laughing about the tomato soup story... It really made my day!

Glad it brought you some giggles. ;)

  • 2 months later...
mtdewpeg Rookie
mtdewpeg
Posted

I was just diagnosed with celiac. I have been gluten free only 3 days. I have malabsorption issues. I had lots of blood drawn yesterday. I know alot of things are out of wack by the way I feel.MY GP had me get 3 iron infusions in early Dec. My GI Dr. will be handling my celiac treatment. Has any of your dr's ever ordered other types of infusions to help you feel better? I don't absorb pills well. Any suggestions? THANKS

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    • knitty kitty
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    • Jane02
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
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