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How Long For Diagnosis?

SharonF

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Guest Viola
Guest Viola
Posted

I'm not sure how it works in the U.S., but here in Canada you would think that the government would want celiac disease tested for right away. It took over 20 years of doctor appointments, hospital visits etc. before I was diagnosed, and here health care is paid by taxes. Early diagnosis of celiac disease would save a lot of tax money! :rolleyes:

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ianm Apprentice
ianm
Posted

In the US you keep going to the doctor until your insurance company drops you for excessive usage. However they won't pay for you to see a nutritionist or homeopath who may actually solve the problem. Then you are forced to only go to emergency rooms which are more expensive and are required by law to treat you regardless if you have insurance or not. Since you can't pay the bill the hospitals and insurance companies charge even more to recover their costs. Then you can get Medicaid which about 90% of the tax dollars go to supporting a bureacracy and not to health care. It just seems to me that if everyone focused on proper nutrition that at least half of what we spend on health care could be spent on something else. Maybe we could afford to invade another oil rich Middle Eastern country.

Wait there is someone knocking on my door, oh no it's the goons from ConAgra and Pfizer coming to take me away!

Guest Viola
Guest Viola
Posted
:lol: Ianm, I hope those goons didn't take you away, we don't want to loose you :rolleyes:
mytummyhurts Contributor
mytummyhurts
Posted

I'm becoming really disappointed in our doctors and their schooling. Insurance companies too. It's all about the profits now. That's probably why they don't do the test on everyone, the insurance companies probably don't want to pay for it, even if it's cheap. But even if it only costs them $20, $20 multiplied by millions is a lot. And they do need to stay in business. :unsure:

Guest ajlauer
Guest ajlauer
Posted
I'll never forget when the docoor told me I had it, that he didn't know much about it and that in a year I would know more about it than he did. When I saw him about a month ago he said he had just given a talk on it to other doctors. I sure hope he learned a lot in the meantime!

:o You gotta give that doctor credit. I've never had one admit that they didn't know something!! It's usually an attitude of, "If I didn't learn it in medical school, it doesn't exist, and you're crazy!" I would think that if the doctor was decent enough to admit an ignorance.... he probably did do some research on celiac disease when he got home that night. :)

Guest nini
Guest nini
Posted

I had been sick all my life. My mom said that as an infant I had projectile vomiting, couldn't tolerate breast milk, infant formula or even regular milk... She gave me regular milk though because at the time in the small town she was in there weren't any options. I've had chronic ailments all my life, as a teenager I was very skinny except for my bloated belly and my mom would tell me to just "suck in my stomach" :blink::blink:

I'll be 36 in May and I didn't get diagnosed until 2 years ago, after several years of severely declining health during and after my pregnancy with my daughter. I had been going to the same medical group for almost 2 years with what they termed as "bizarre" symptoms and they kept sending me for test after test. Fortunately they finally sent me to a GI that recognized all of the symptoms as celiac and tested me for it right away.

I'm just thankful that we found out and also got my daughter dx, and now she won't have to go through the same health issues that I did.

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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

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

      By trents · Posted

      Contact them.
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