
Celiac-in-AZ
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Celiac-in-AZ reacted to knitty kitty in Which Doctor/s to See...
@Celiac-in-AZ,
I'm a big fan of Dr. Derek Lonsdale. He and Dr. Chandler Marrs have written a book
"Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition"
Here's one of his published articles...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
Other articles are on Dr. Marrs' website...
https://www.hormonesmatter.com/navigating-thiamine-supplements/
Elliot Overton has written articles there and has videos on YouTube.
https://m.youtube.com/channel/UCFqXidfUsI0vm73xsBMIQdQ
I was so severely malnourished I had developed ataxia. My doctors didn't recognize nutritional deficiency symptoms. I followed Dr. Lonsdale's high dose Thiamine supplementation and have recovered much.
I hope you have as much improvement as I have.
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Celiac-in-AZ reacted to knitty kitty in Which Doctor/s to See...
@Celiac-in-AZ,
Have you been to a nutritionist?
You may be low in other vitamins and minerals. If you are low in one or two, you are probably low across the board. There are reliable tests for B12 and Vitamin D, but no really reliable tests for other B vitamins.
There's eight B vitamins. They all work together. Taking just one B vitamin can throw the others out of whack. A B Complex supplement should be taken with your B12.
Ataxia is caused by Thiamine deficiency. Blood tests for thiamine are not accurate. Thiamine is used inside cells, so blood tests for thiamine don't reflect how much is inside cells. Thiamine blood tests can reflect how much Thiamine you've consumed in your diet in the past couple of days. Thiamine is water soluble and nontoxic. High doses of thiamine are needed to correct a deficiency. With high doses, thiamine can get into cells by passive diffusion. The World Health Organization WHO recommends taking between 500 and 2000mg Thiamine Hydrochloride per day for several days. Every one is different and increasing doses should be tried. Benfotiamine and Allithiamine and Thiamax can also be used. These are fat soluble forms that get into cells easily so lower doses of these can be taken. If improvement is seen within hours or a few days, thiamine supplementation should continue for several months.
This is what I used to correct my ataxia.
Hope this helps!
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Celiac-in-AZ got a reaction from Scott Adams in Which Doctor/s to See...
Thanks for the response, Scott.
At this point, I'm more concerned about ataxia than malabsorption. My Vitamin D and B12 were slightly low right after my diagnosis, otherwise all looked okay. I have not yet found a neurologist I trust to address possible ataxia.
Good advice about the possible reflux. Other than legumes and occasional nuts, I'm basically on the Autoimmune Protocol because of all the cross-reactivities that showed up on my Cyrex tests. There's a possibility that it's a mold issue, but this is another area where I can't find the right doctor to test things.
I really wish I had the right medical professional to take a close look at me, but the search goes on.
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Celiac-in-AZ got a reaction from knitty kitty in Test Results / Cyrex Labs / Datis Kharrazian
That is very telling, indeed. It helps me a ton to read the accounts from you and others who've been navigating these waters for awhile.
I have been taking 6,000 IU of D3 daily for over a year and just got blood work done -- I'm at 30ng/ml. Exactly where I was before I started supplementing. And homocysteine at 14.5 despite taking a good amount of B12. Keep in mind, I'm still less than 2 months gluten free so hoping that the gut heals and I can get those numbers to a better place!
Figuring out all of this with my 11-year-old daughter is going to to be an entirely different challenge that I haven't started to wrap my mind around. Her attitude is great, though. And she gets to go on a gluten farewell tour while we're waiting on the biopsy, so that's fun.
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Celiac-in-AZ got a reaction from LCAnacortes in Test Results / Cyrex Labs / Datis Kharrazian
That is very telling, indeed. It helps me a ton to read the accounts from you and others who've been navigating these waters for awhile.
I have been taking 6,000 IU of D3 daily for over a year and just got blood work done -- I'm at 30ng/ml. Exactly where I was before I started supplementing. And homocysteine at 14.5 despite taking a good amount of B12. Keep in mind, I'm still less than 2 months gluten free so hoping that the gut heals and I can get those numbers to a better place!
Figuring out all of this with my 11-year-old daughter is going to to be an entirely different challenge that I haven't started to wrap my mind around. Her attitude is great, though. And she gets to go on a gluten farewell tour while we're waiting on the biopsy, so that's fun.
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Celiac-in-AZ got a reaction from LCAnacortes in Test Results / Cyrex Labs / Datis Kharrazian
Scott, thanks for the reply and for creating this resource for all of us!
You have a great point about insurance that I had not considered. That said, I decided more information can only be useful in the long run. For the time being, I'm being extremely cautious about cross-contamination, not eating out, and treating all of the cross-reactivities on the Cyrex panels just as I would gluten -- regardless of what additional testing says. If it turns out to be a sensitivity rather than Celiac, management (especially of cross-reactivities) might be easier down the road. I also have a kid, so a Celiac diagnosis would affect whether we get her tested immediately.
For now, I feel fortunate to know that my years of bizarre undiagnosable symptoms are likely being caused by food. The path forward is still being drawn, but it's great to be on it.
-
Celiac-in-AZ got a reaction from Scott Adams in Test Results / Cyrex Labs / Datis Kharrazian
That is very telling, indeed. It helps me a ton to read the accounts from you and others who've been navigating these waters for awhile.
I have been taking 6,000 IU of D3 daily for over a year and just got blood work done -- I'm at 30ng/ml. Exactly where I was before I started supplementing. And homocysteine at 14.5 despite taking a good amount of B12. Keep in mind, I'm still less than 2 months gluten free so hoping that the gut heals and I can get those numbers to a better place!
Figuring out all of this with my 11-year-old daughter is going to to be an entirely different challenge that I haven't started to wrap my mind around. Her attitude is great, though. And she gets to go on a gluten farewell tour while we're waiting on the biopsy, so that's fun.
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Celiac-in-AZ reacted to Scott Adams in Test Results / Cyrex Labs / Datis Kharrazian
My pleasure...btw, I grew up in AZ and went to Tempe High School and then ASU!
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Celiac-in-AZ got a reaction from Scott Adams in Test Results / Cyrex Labs / Datis Kharrazian
Scott, thanks for the reply and for creating this resource for all of us!
You have a great point about insurance that I had not considered. That said, I decided more information can only be useful in the long run. For the time being, I'm being extremely cautious about cross-contamination, not eating out, and treating all of the cross-reactivities on the Cyrex panels just as I would gluten -- regardless of what additional testing says. If it turns out to be a sensitivity rather than Celiac, management (especially of cross-reactivities) might be easier down the road. I also have a kid, so a Celiac diagnosis would affect whether we get her tested immediately.
For now, I feel fortunate to know that my years of bizarre undiagnosable symptoms are likely being caused by food. The path forward is still being drawn, but it's great to be on it.