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New Doctor - Austin Texas

TexasJen

By TexasJen
in Doctors

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TexasJen Collaborator
TexasJen
Posted

I am grateful to my doc for diagnosing me with celiac last year. It was not on my radar at all since I have no GI symptoms (I was anemic). However, he pretty much just referred me celiac.com, told me to start a gluten free diet and he'd see me in a year. He gave me no other advice and recommended no other tests ( I have since had that all done).

Any advice on a good GI doc for celiac patients in ATX or San Antonio?

Thanks in advance!

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Jmg Mentor
Jmg
Posted

Are you quite sure you need one Jen? Your doctor already sounds better than the majority I've encountered. He knew enough about you to detect celiac from anemia for one thing. I don't think there's a great deal of a role for a doctor as you start the gluten-free diet. Checking levels after a year to see how your going is pretty standard. Maybe a referral to a dietician for advice on how to adapt to the diet would've been of help though. 

Sorry by the way, I don't have any useful info, just love Austin and couldn't help clicking :)

 

TexasJen Collaborator
TexasJen
Posted
  • Author

Well, that thought did occur to me.....After me asking him, he did give me the name of a dietician but she knew nothing about celiac specifically and had no experience. She wanted me drinking kale and almond mild smoothies all the time but couldn't address some very practical issues. :)

Some of my more atypical symptoms (fatigue, joint aches) aren't going away.  Since I don't have GI symptoms I don't know when I'm making errors. I think I'm doing a pretty good job at following the gluten-free diet, but I have suspected in retrospect, that I might be making some errors - still not sure though. I need some practical advice on how to proceed from here (i.e. only eat certified gluten-free foods and all natural foods? - There are some things I like - like cheeses, dried beans, coffee that could be cross contaminated but I really have no idea if that is the issue OR take the plunge and go dairy free?). If I do that, how long do I need to be dairy free to decide if that's the issues - is 2 months enough?  Since it often times take weeks to recover from been glutened, it's hards to tell where the problem is....

tessa25 Rising Star
tessa25
Posted

In my opinion, because you have no outward symptoms the only way to see if you're doing it right is to get your celiac blood test results so you know your starting point. After a few months retest the number that failed and see if it's going down. If it is then your doing it right.

Jmg Mentor
Jmg
Posted
1 hour ago, TexasJen said:

I need some practical advice on how to proceed from here

You may already have seen this: 

 

but if not there's lots of good advice in there. :)

Best of luck with your recovery!

cyclinglady Grand Master
cyclinglady
Posted

I think you GI has done a pretty good job (better than most).  I got pretty much the same thing from my GI.  However, I give him credit for finding celiac disease, when I went in for a routine colonoscopy and he saw that I had been anemic forever.  I did not have intestinal issues.  

Coffee, dried beans (sorted and washed), and cheese are all safe food choices provided you do not have any intolerances.  The only way to find out is to keep a food journal and give up foods that can impact joints (e.g. Night shades are common).  Reintroduce them and gauge your reactions.  Everyone is different, so there is no easy way to figure it out.  

Have other AI issues been ruled out after a year of being gluten-free?  Are your antibodies still high (can take years to go down), but are trending downward?

TexasJen Collaborator
TexasJen
Posted
  • Author

My numbers at the time of diagnosis were >100 for both IgA and IgG. When I was retested at 6months, IgA was 0 and IgG was 6 so I definitely made improvement. But, weirdly, in retrospect, there were some times when I had made some errors in my diet - minor but possible cross contamination or like drinking a tequila that wasn't 100% pure agave...

Thanks for the help!

 

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  • 3 months later...
Lexiola Newbie
Lexiola
Posted

Hi Jen,

 

 

I know this is late but my doctor just referred me to a GI for similar issues if you'd like the name. He's located in Austin, TX off James Casey Str I think?

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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.

      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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