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ohsroac

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ohsroac Apprentice
ohsroac
Posted

I previously made a post about my daughter being tested, the waiting is killing me. I have spent a lot of money going to doctors for years because of my many symptoms and I am at the point where I am tired of going. I know I should get tested for Celiac but I don't want to, I thought well if I go on the diet and I feel better why get tested and pay thousands of dollars for them to tell me to go on a diet?

I had a hysterectomy 3 years ago and the surgeon messed up and I almost died. He punctured my bowels three different places and recovering from that was stressful. I am 33 years old now and feel like I am 60ish at times.

The doctor thinks I have IBS, but I don't agree with him. My BM's are different each time, I can function at work without having to go to the restroom ( I have a fear of having BM's in public). I can have 4 BM's in a day and then feel constipated afterwards. My stomach feels great in the morning, but after I eat I get bloated. I stay that way all day! I drink water, and limit soda to 1 or 2 a week. I don't salt my foods! At night after I have a BM I am in pain the rest of the night. I get zero relief! My bones hurt my feet throb! OHHH my feet hurt so bad and I don't work on my feet much! I want to exercise and I try, but my energy is gone. I use it all up to clean and cook and take care of my kids. When I do exerice I am more tired than when I begain. I don't get, should'nt I have more energy?

2 years ago I started breaking out in hives. My skin gets red and now it has progressed to my face; mainly around my nose and lips and forhead. I went to a RA doctor because my SED rate was 46 and he tested me for RA but it was negative-thank you Jesus! then he thought I may have lupus.. He said, "well you have something but it is laying dormat and we can't find it" that is not help to me when I don't feel good!

My B-12 blood test was within normal range

My WBC was a little high but not majorly high

Whatever a neutreophil is, both results were a bit high but not by much...

I don't know. I am on day four of gluten free and I have not noticed a change yet, too soon maby?

Here are my main symptoms and you all help me understand please:

hives

IBS symptoms

joint aches and pains, but I can still function and get through it

back pain at times when I bend over I will get really sharps pains sometimes taking my breath away

I love my teeth, I take care of them, but I have horrible TOOTH DECAY I hate it

feet numb and tingling all day and restless legs at night! HORRIBLE

I have skin discoloration on my neck and the doctor thougth I had a thyroid problem or diabeties, but both test were negative!

So, what do ya'll think?

Thanks,

Lena

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Charlee22 Newbie
Charlee22
Posted

Wow, your BM problems sound just like mine- it differs from day to day- but there is something always going on in my tummy. I can feel it.- I almost feel worse after i go- or the same- but never better. im still in the process of being diagnosed- i had inclusive blood results

ohsroac Apprentice
ohsroac
Posted
  • Author
Wow, your BM problems sound just like mine- it differs from day to day- but there is something always going on in my tummy. I can feel it.- I almost feel worse after i go- or the same- but never better. im still in the process of being diagnosed- i had inclusive blood results

I hate the unknown and I like this group because I can find others who understands and can relate to me! Thanks for your reply.

Lena

mimommy Contributor
mimommy
Posted

Hi there. I can certainly relate to your plight, as I have similiar symptoms and no positive labs for any of the usual suspects. But, negative labs don't mean that there isn't anything wrong, only that your doctors haven't figured it out yet. My daughter has celiac, my mother has psoriatic arthritis and fibromiyalgia, my father has rheumatoid arthritis, my grandmother had heartburn that plagued her her entire life along w/ arthritis and tendinitis, and my grandfather and another grandmother both had diabetes. All of these are related, as all are auto-immune/inflammatory/genetic disorders. Not to be bore, but have a look at the links below. I think it is entirely possible your pain and GI issues are connected.

And, I feel your pain--literally.

Open Original Shared Link

Open Original Shared Link

BigDogz Explorer
BigDogz
Posted
My B-12 blood test was within normal range

My WBC was a little high but not majorly high

Whatever a neutreophil is, both results were a bit high but not by much...

I don't know. I am on day four of gluten free and I have not noticed a change yet, too soon maby?

Here are my main symptoms and you all help me understand please:

hives

IBS symptoms

joint aches and pains, but I can still function and get through it

back pain at times when I bend over I will get really sharps pains sometimes taking my breath away

I love my teeth, I take care of them, but I have horrible TOOTH DECAY I hate it

feet numb and tingling all day and restless legs at night! HORRIBLE

I have skin discoloration on my neck and the doctor thougth I had a thyroid problem or diabeties, but both test were negative!

So, what do ya'll think?

Thanks,

Lena

Do you happen to know what your B12 level was? US practitioners are just know coming around to the fact that or "low normal" levels are too low. Many people have symptoms such as the numb, tingly and restless feelings when B12 drops below 450. The National Institute of Health now recommends levels of 450-900 but most US doctors still go by the old-school values.

I've gone from having what my dentist classified as "fantastic teeth" to having dental enamel of "poor quality". From what I understand, this is common with Celiac Disease. I'm currently undiagnosed (officially), too, because my doctor has been unwilling to pursue testing. I'm going to do a home test kit that I'm getting shipped in from the UK but I'm confident in my own diagnosis since my symptoms disappeared during a month-long gluten-free trial and came right back, hot and heavy, when I went back to eating gluten again.

Thankfully, I don't get the hives that you do but my tongue gets kind of sore...almost as though I've burned it even if I haven't.

ohsroac Apprentice
ohsroac
Posted
  • Author
Do you happen to know what your B12 level was? US practitioners are just know coming around to the fact that or "low normal" levels are too low. Many people have symptoms such as the numb, tingly and restless feelings when B12 drops below 450. The National Institute of Health now recommends levels of 450-900 but most US doctors still go by the old-school values.

I've gone from having what my dentist classified as "fantastic teeth" to having dental enamel of "poor quality". From what I understand, this is common with Celiac Disease. I'm currently undiagnosed (officially), too, because my doctor has been unwilling to pursue testing. I'm going to do a home test kit that I'm getting shipped in from the UK but I'm confident in my own diagnosis since my symptoms disappeared during a month-long gluten-free trial and came right back, hot and heavy, when I went back to eating gluten again.

Thankfully, I don't get the hives that you do but my tongue gets kind of sore...almost as though I've burned it even if I haven't.

Interesting about the B12. Mine was 266 and was based on a range of 236 to 1030? I am starting to feel better though!

BigDogz Explorer
BigDogz
Posted
Interesting about the B12. Mine was 266 and was based on a range of 236 to 1030? I am starting to feel better though!

My lab puts the lower limit at 180, which is one reason my doc didn't even want to treat me. The Europeans and Japanese go by much higher limits than we do in the US. They say that the ideal B12 level is 1,100-1,300. What's really interesting about that is that Alzheimer's is virtually unheard of in Japan and not nearly the problem in Europe as it is here in the US. Sure makes you think our levels are just way too low. Isn't it a shame to think that so many of our elderly are suffering from a horrible, memory-stealing disease just because our doctors aren't prescribing enough vitamins, of all things?!

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

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

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