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Which Doctor/s to See...

Celiac-in-AZ
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Celiac-in-AZ Rookie
Celiac-in-AZ
Posted

Hi all,

I'm amazed at how many of my health issues have improved since my diagnosis and quitting gluten and a few other sensitivities -- and I'm only four months into this! Neuropathy, pudendal neuralgia, brain fog, ADHD... all gone. 

However, I have two issues that are not improving at all:

1) Instability in hip -- despite months of PT, I don't seem to be able to improve the strength or stability of my wonky right hip.

2) Reflux -- Neither my GI or ENT is sure whether to call it GERD or LPR/silent reflux, but a combo or throat pain and difficulty swallowing, along with post-nasal drip that I don't really feel. I tried a month of religious high-PH diet, H2 blocker, and algetate with no improvement. I'm now three days into using a PPI, which I really didn't want to do. I'm already struggling with Vitamin D and B12. 

So, my question: Do you have one type of doctor you see to quarterback your treatment? I have one naturopath who recommends a zillion supplements to heal the gut, another who preaches patience and keeping it simple, a neurologist who doesn't really see anything relevant, and a GI whose only advice is don't eat gluten. Who do you see to help guide you through complex issues of recovery? 

 

 

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Scott Adams Grand Master
Scott Adams
Posted

I can't answer the doctor question, but did want to comment on your ongoing symptoms. I think you're getting good advice about supplements to heal the gut, and hopefully your are taking broad vitamin and mineral supplements as well. If your hip issue is related to malabsorption caused by untreated celiac disease, it could take months to years to recover, but it may be something else, so you might want to get it checked out if you don't see any improvement over the next few months.

GERD can be caused by additional food intolerance issues, and you may need to keep a food diary and eliminate things one at a time to see if there is connection, for example casein/cow's milk, soy, nightshades, corn, eggs, etc. Be sure that your diet is 100% gluten-free, as this could also cause it, and celiacs who eat out in restaurants often eat trace amounts of gluten.

Celiac-in-AZ Rookie
Celiac-in-AZ
Posted
  • Author

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.  

knitty kitty Grand Master
knitty kitty
Posted

@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!

Celiac-in-AZ Rookie
Celiac-in-AZ
Posted
  • Author

What a thoughtful response, KK. 

I take a lozenge that has B6 and B12, along with folate. May I ask, how did you learn this information about thiamine and ataxia? I'd love to read up on it so I can better understand before asking a doctor or nutritionist about it. (And no, I have not yet been to a nutritionist but am looking for one that understands celiac.) 

knitty kitty Grand Master
knitty kitty
Posted

@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.

Celiac-in-AZ Rookie
Celiac-in-AZ
Posted
  • Author

I will check out all these resources. Thanks again!

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