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Hello Again...

JerryK

By JerryK
in Coping with Celiac Disease

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JerryK Community Regular
JerryK
Posted

Hello everyone,

Perhaps some of you remember me. It's been perhaps a year or so since I last posted. Something interesting has happened that I wanted to share and get some opinions on.

Just a recap on me. I was tested by Enterolab a couple years ago....Gluten Intolerance was confirmed...a gene test did not indicate I have the main Celiac genes. Blood testing at my HMO was not conclusive for Celiac. I have been on a gluten-free diet for a couple years now. It comes pretty naturally...I just avoid anything that seems questionable. I can eat things with trace amounts of wheat, with little impact, but any gluten of substantial amount and I get all the symptoms (you know what they are).

Soooo, I have an identical twin brother. He has, for the last couple years, ignored my attempts to get him to go gluten-free. In that time he has been diagnosed with "Fibromyalgia". (ok, no offense to anyone with fibro, but I believe this is a medical code word for --we don't know why you don't feel good, so here's a diagnosis).

About three weeks ago, he calls me...he's in so much pain that he cannot work. He's on his way to the Dr. Of course I ask him what he's eating....(Doy, he had three pieces of toast the night before).... Now here's where it gets interesting: He gets an email from his Dr. a couple days later: "Your vitamin D level is severely low, we've prescribed 50,000 IUs of D to be taken 1/per week for the next 8 weeks". His level

was "less than 4"...when 25 is considered the low end of normal.

A week after he starts taking his vitamin D, he tells me his pain is 95% gone. He feels the best he has in 10 years. His fibro appears to be cured or in remission.

Since vitamin D is the hormone that helps the body to regulate calcium absorbtion...does anyone here doubt that this is related to Gluten Intolerance/Celiac? Did I mention that we both had to have all of our teeth crowned in our early 40s, due to massive wear and decay.

I'm of the opinion that I didn't get the Fibro symptoms because I spend loads of time outside running, especially in the summer and perhaps my levels stayed up due to this. Also, I've been gluten-free for two years and all of my gastro symptoms have resolved.

Thoughts??

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mushroom Proficient
mushroom
Posted

Two quick thoughts.

Your brother should stop eating gluten (but you already know that, he doesn't apparently)

Everyone diagnosed with gluten intolerance should get their vitamin D level checked.

(By the way, most of my teeth have crowns too!)

Jestgar Rising Star
Jestgar
Posted
Since vitamin D is the hormone that helps the body to regulate calcium absorbtion...does anyone here doubt that this is related to Gluten Intolerance/Celiac? Did I mention that we both had to have all of our teeth crowned in our early 40s, due to massive wear and decay.

I'm of the opinion that I didn't get the Fibro symptoms because I spend loads of time outside running, especially in the summer and perhaps my levels stayed up due to this. Also, I've been gluten-free for two years and all of my gastro symptoms have resolved.

Thoughts??

Welcome back!!

Interesting thought on the vit D - fibro connection. Is your brother also physically active (just wondering about the exercise thing confounding the vit D question)? Did you ever have your D levels tested?

JerryK Community Regular
JerryK
Posted
  • Author
Welcome back!!

Interesting thought on the vit D - fibro connection. Is your brother also physically active (just wondering about the exercise thing confounding the vit D question)? Did you ever have your D levels tested?

Never had it tested. Never even considered that it was a possibility. Now given all the different ADs they tried on me with dubious success. The only thing that ever made me feel better was running...outside..in the sunshine :P

I suspect my levels were low, but probably not as low as his were. It's amazing he was still walking around.

AZKat Newbie
AZKat
Posted
Never had it tested. Never even considered that it was a possibility. Now given all the different ADs they tried on me with dubious success. The only thing that ever made me feel better was running...outside..in the sunshine :P

I suspect my levels were low, but probably not as low as his were. It's amazing he was still walking around.

Hi Jerry,

My husband also has low vitamin D and we suspect it is the cause of his osteoporosis.

Your brother may need to have his bone density checked too. My dh is also taking

the large doses of Vit D. Malabsorption of fat adds to it with low cholesterol. It requires

a certain cholesterol compound in the skin for the body to make Vit D from sunshine,

and apparently dh has such low cholesterol he isn't making it from the sunshine.

Low Vit D can have lots of unpleasant symptoms. I have the tooth issues too. We've both

been gluten/casein free for a little over two years as well.

mushroom Proficient
mushroom
Posted
Never had it tested. Never even considered that it was a possibility. Now given all the different ADs they tried on me with dubious success. The only thing that ever made me feel better was running...outside..in the sunshine :P

I suspect my levels were low, but probably not as low as his were. It's amazing he was still walking around.

Considering ther latitude of Oregon and the angle of the sun, you would probably only make Vitamin D from sunshine for 4-5 months a year, max. Maybe if you spend that much time out in it that would be enough, or maybe you drink enough D-fortified milk. But I still think it would be a good idea to have it checked or have a DEXA scan. Osteoporosis is pretty darned sneaky.

tarnalberry Community Regular
tarnalberry
Posted

But you can have fibromyalgia and have perfectly good vit-D levels. Mine are great, and I still supplement with normal doses, since I'm in Washington, and I have fibro.

(In fact, vitamin levels, particularly iron and D, should be checked before a fibro diagnosis. I think the problem with fibro isn't "we don't know what's wrong with you" (even though they haven't concluded on a main cause, which isn't uncommon with something that manifests from the brain), but rather so many other things cause similar symptoms that it's a big masquerade ball you have to figure out.)

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GFinDC Veteran
GFinDC
Posted

I don't know what my D level is, but my doc did put me on a 1000 units each day (above the 800 I was already taking) after my last blood test. Hey aren't them twins 'sposed to think alike or something? Does brother have any GI sypmptoms? Maybe it's time for him to consider how he got to such a low D level in the first place. Taking supplements is fine, but the low D level probably indicates he isn't absorbing other nutrients properly too. I wonder what else he is low on? Seems like he would want to think about the root cause and try to adjust to improve that situation. What the hey, viamin D is cheap now but what if there is an embargo someday? LOL. His positive reaction sure is a good sign that he can improve his health by adjusting something.

The blood tests are not always accurate for celiac from what I have read. False negatives are up to 30% on some tests. There is an article on testing on the celiac.com main page that explains it better.

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

jaime1103 Rookie
jaime1103
Posted

Vitamin D and Calcium mal-absorption were my only main symptoms before I was diagnosed. I never had stomach issues, just heartburn for the last few years. I was having joint and neurological issues, getting tested for MS and ALS, and a friend mentioned a cousin of her's that had celiac and had MS symptoms. I told my doctor, he thought I was crazy, but ran bloodwork anyway.... my calcium and vitamin D were scary low, and my celiac panel came positive. I then had the biopsy, and that came out positive, as well. My doctor apologized! It has taken me a year of gluten free, and vitamin/calcium supplementation to get my levels up to almost normal.

Good luck with everything!

JerryK Community Regular
JerryK
Posted
  • Author

My brother just sent me this email re his Vitamin D regimen...

I would say it's helping...

----

Man I am serious

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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

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

      By knitty kitty · Posted

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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. 
    • 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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