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Refractory to gluten free diet?

Discussion in 'Celiac' started by DadCares, Jan 29, 2010.

  1. DadCares

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    Does anyone have experience with celiac refractory to a gluten free diet? At her 8 month checkup, her TTG was an astounding 400+. That was August. She will have a next appt in about a month. If the TTG is not dramatically lower, we will need to find a specialist familiar with kids refractory to a GF diet. Any guidance would be appreciated.
     
  2. aklap

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    Hi Ken,

    Sorry to hear things are not getting better. :( From what I've seen, Refractory Sprue (RS) is rare. In many cases, patients are still ingesting gluten unknowingly. (I'm not passing any judgement on your or your daughter).

    http://www.celiac.com/articles/710/...-of-Chicago-Celiac-Disease-Program/Page1.html

    Here's some info on RS: http://www.celiac.com/categories/Ce...efractory-Celiac-Disease-&-Collagenous-Sprue/

    Getting to the bottom of this certain is important. Can you be referred to a teaching hospital? Here in WI, if there are issues than can't be figured out, patients are sent to UW Madison.

    Has she had another biopsy after her initial dx?

    You also might consider getting a second opinion from other celiac experts. I know for a fact that Univ. Chicago Celiac Center will review cases [for a fee of course]. The same might hold true for Dr. Peter Green at Columbia CD Center or Dr. Fasano at Univ. of Maryland CD Research Center.

    You also might talk to a few DFW Celiac Support groups to about knowledgeable docs:
    http://www.dfwceliac.org/html/med__professionals.html
    http://www.dallasrock.org/


    Good luck! Please let us know how things are going.
     
    Last edited: Jan 29, 2010
  3. DadCares

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    AK:

    Thank you for the wealth of information. I am merely doing some advance research in case our next results are poor. After the August checkup, we went through everything in our house again such as calling manufacturers of hand soap, etc. The only change we made is our only real hope. We quit ordering bread from Sammy's Bakery in Florida after they admitted to us over the phone that their gluten free bread is sometimes used on the same lines as gluten containing bread. Marissa ate that bread every day before August and we are hoping we caused the problem by using that bakey.
     
  4. aklap

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    You're welcome!

    ACK! I would not eat Sami's bread.

    This info is not recent, but...

    http://www.examiner.com/x-12164-Glu...7d27-Warning--Samis-Breads-are-not-glutenfree

    Original Delphi Source

    I hope you get some answers soon.
     
  5. DadCares

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    AK:

    Yes, that was the primary post that caught our attention and caused us to research further. I asked the owner about that posting.
     
  6. WestinsMom

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    We used to eat Sami's too until I saw that post. I noticed in our local healthfood store that they have put up a big sign :D It's all good. We tried Udi's and love it more than Sami's :)
     
  7. DadCares

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    I wanted to circle back with this thread with good news from our daughter. Our daughter is confirmed NOT refractory to a gluten free diet. Her celiac bloodwork came back with major improvement. Her TTG IGa dropped to 29 (from 403) and her celiac antibody went negative! This is 14 months after diagnosis and 6 months after her checkup in August. Her gastro doctor said he couldn't be more pleased.

    We conclude one of the biggest culprits was Sammy's Bakery Bread. In August, after another exhaustive round of research of foods, home products, etc., Sammy's bread is the only product we uncovered that was suspicious. We eliminated it and made no other changes to cooking, food purchases, etc.
     
  8. hrermgr

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    So glad to hear the good news! The bread probably was the culprit.
     
  9. kim5798

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    That is great!

    kim
     
  10. aklap

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    Good news! Thanks for the update. Deland is probably another bakery that had issues in the past. I haven't kept up with it.

    Keep up the great work.
     
  11. Flutterby

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    Is Sammy's that bread that really wasn't gluten free but they were selling it as such? In any case, I'm so glad to hear things are better.. 400+, wow, that is quite a number, thats great you got it down so quickly!
     
  12. jcanolson

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    Different bread. The one in NC was complete fraud. They were taking regular bread and repackaging with "Gluten-free" labels. Sami's is in Florida, and the problem was simply cross-contamination.

    We are fairly close to NC, so I was trying to pay attention to that in case they decide to just come across the state line and try the same thing.
     
  13. Flutterby

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    We use Deland's from Fl and have had no problems (her levels are under 3, been eating deland's for a year..). Has anyone heard anything about them?
     
  14. jcanolson

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    Al just commented about them having problems in the past. Not sure. I guess her levels would indicate they it is safe.:D

    We finally got our local Natural Food Market to carry Udi's, and the girls love it. Now if they would just carry the blueberry muffins...;)
     
  15. aklap

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  16. aklap

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    Sami's Breads have had more testing. This time Gluten-Free Watchdog [Tricia Thompson, RD] has done the testing.

    In order to see the results of the test, you must be a paid subscriber*.

    As I've said in the past - if you are GF, stay away from products coming from this bakery.

    One of the GF products tested was Sami's Bakery GF Almond Biscotti.

    Other gluten-free by ingredient items, but not labeled GF were tested and came in with astounding amounts of gluten. Note - there is a disclaimer on those products about containing traces of gluten.

    Due to grave nature, Tricia said she will post about this on her GlutenFreeDietitian website - so keep an eye out, it's not there as of this posting.

    *Note: I have no financial connection to Gluten-free watchdog, nor profit from mentioning this service. I am a subscriber because I value Tricia's knowledge and services.
     
    Last edited: Sep 6, 2011

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