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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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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
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      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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