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Thread: Celiac update on daughter

  1. #1
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    Default Celiac update on daughter

    My type 1 daughter for 10 years tested positive (greater than 100) on her ttg iga antibody blood test. We are under the impression that this is most certainly celiac--she also has had numerous symptoms over the years that now could make some sense if she has had celiac--although tested yearly this is the first time that she tested positive for celiac. She had the endoscopy on Tuesday and the GI said she saw villi---she did see some inflammation in her stomach, esophagus, etc. but it appeared normal in her 2nd portion of her duodenum. GI seemed to take several samples from different spots. Can you sometimes conduct a biopsy too soon for damage to appear?

    Is it possible that her biopsy could turn out negative? If so, what do we do? I think at this point that is my biggest fear because we had just started to wrap our heads around this new diagnosis and for her (and me) to be strict about doing a gluten-free diet I think a positive biopsy will be important? I'm not much of a cook and I'm already feeling quite lost as to how I am going to make dinner every night.

    Sorry I'm stressing over this---I know that we will find out soon--next week but I can't let this go.
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  2. #2

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    Quote Originally Posted by 22jules View Post
    My type 1 daughter for 10 years tested positive (greater than 100) on her ttg iga antibody blood test. We are under the impression that this is most certainly celiac--she also has had numerous symptoms over the years that now could make some sense if she has had celiac--although tested yearly this is the first time that she tested positive for celiac. She had the endoscopy on Tuesday and the GI said she saw villi---she did see some inflammation in her stomach, esophagus, etc. but it appeared normal in her 2nd portion of her duodenum. GI seemed to take several samples from different spots. Can you sometimes conduct a biopsy too soon for damage to appear?

    Is it possible that her biopsy could turn out negative? If so, what do we do? I think at this point that is my biggest fear because we had just started to wrap our heads around this new diagnosis and for her (and me) to be strict about doing a gluten-free diet I think a positive biopsy will be important? I'm not much of a cook and I'm already feeling quite lost as to how I am going to make dinner every night.

    Sorry I'm stressing over this---I know that we will find out soon--next week but I can't let this go.
    This is a tough question. Our GI's comments were inconclusive immediately after he did the scope so we spent a week hoping that it wasn't really celiac, but the biopsy ultimately confirmed it.

    Here is info from U-Chicago on false positive TTG blood results, particularly in those with T1D. It gives suggestions on additional, more conclusive blood testing that you might consider:

    http://www.cureceliacdisease.org/faq...eliac-disease/
    Snowflake
    Mom to
    DD TR, age 7. Dx-ed with T1 04/04/2012. Omnipod & Dexcom user. Dx-ed with celiac 12/23/2013.
    DS1, age 5.
    DS2, age 1.

  3. #3
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    Quote Originally Posted by Snowflake View Post
    This is a tough question. Our GI's comments were inconclusive immediately after he did the scope so we spent a week hoping that it wasn't really celiac, but the biopsy ultimately confirmed it.

    Here is info from U-Chicago on false positive TTG blood results, particularly in those with T1D. It gives suggestions on additional, more conclusive blood testing that you might consider:

    http://www.cureceliacdisease.org/faq...eliac-disease/
    I remember when they did the endoscopy, the dr's talking to us after & it seemed like they were indicating that it would be negative, based on what they told us. Maybe that was wishful thinking. I remember that it took longer than a week for them to get back to us & we were seriously bummed out when they said yes, she in fact had celiac disease. This was in 2009 or so... a while ago, but I still remember. It sucked big time. The good thing is that I really feel it is a lot easier to deal with now. There are more gluten free products available & it so much more acceptable to ask for something gluten free when eating out. All those gluten free dieters have helped out the celiacs
    Kim
    Mom to Danielle, age 18, dx'd type 1 age 3 in 2001. MM 630G pump with cgm. dx'd celiac 6/09
    She will be a sophomore at University of Utah in the fall 2017.
    Go Utes!

  4. #4
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    Well met with Gastro today and it's official- she has celiac. They saw partial villous blunting in several different areas. 10 1/2 years almost to the day she was diagnosed with type 1. A new normal! In a way I'm relieved in a way I'm annoyed! So much to learn!
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  5. #5
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    ok I typed a huge reply & idk what happened. trying again now

    First off, sorry about this diagnosis. It stinks. The only good thing is you don't have to take meds for it. Just eat right.

    A lot of people stop eating bread of any kind when first diagnosed. This can be good idea, because then you aren't comparing with such fresh memories. Even if you don't give her bread for a couple weeks, it might be a good idea. Of course that will depend on your daughter. My daughter's favorite gf bread is the Canyon Bakehouse Mountain White bread. Her second choice is the Udi's white bread. We buy the Canyon Bakehouse at Target, you will find it on the racks in between the fruits/veggies & the meat case. Price is around $5.99, so not cheap, but tastes good. We usually freeze & take out the slices to defrost as we need them to avoid waste. Mission also makes gluten free flour tortillas. My daughter loves these. They are about $4.99 a package. Corn tortillas are always an option & way less expensive.

    Pamela''s baking mix is good. Basically a bisquick equivalent. You can use it for pancakes, to make muffins or bisquits, waffles, etc. I prefer it to the Gluten Free Bisquick. That is ok if you find it, but the Pamela's tastes better.

    In the beginning a good thing to remember is to keep it simple & eat foods the way they came in nature. Fruit, veggies, meats, all good & naturally gluten free. Rice is good. Be careful of seasonings & seasoning mixes...a lot of times they have wheat flour. If you weren't before, you are now a LABEL READER!

    if you tell me what your daughter likes to eat, I can give suggestions based on what we have tried. In the early days, we kept a notebook every time we bought/tried a new food. A lot of the gf specialty things are expensive, so I am happy to share our experience to help you save a few dollars.

    Kim
    Kim
    Mom to Danielle, age 18, dx'd type 1 age 3 in 2001. MM 630G pump with cgm. dx'd celiac 6/09
    She will be a sophomore at University of Utah in the fall 2017.
    Go Utes!

  6. #6
    Join Date
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    Quote Originally Posted by kim5798 View Post
    ok I typed a huge reply & idk what happened. trying again now

    First off, sorry about this diagnosis. It stinks. The only good thing is you don't have to take meds for it. Just eat right.

    A lot of people stop eating bread of any kind when first diagnosed. This can be good idea, because then you aren't comparing with such fresh memories. Even if you don't give her bread for a couple weeks, it might be a good idea. Of course that will depend on your daughter. My daughter's favorite gf bread is the Canyon Bakehouse Mountain White bread. Her second choice is the Udi's white bread. We buy the Canyon Bakehouse at Target, you will find it on the racks in between the fruits/veggies & the meat case. Price is around $5.99, so not cheap, but tastes good. We usually freeze & take out the slices to defrost as we need them to avoid waste. Mission also makes gluten free flour tortillas. My daughter loves these. They are about $4.99 a package. Corn tortillas are always an option & way less expensive.

    Pamela''s baking mix is good. Basically a bisquick equivalent. You can use it for pancakes, to make muffins or bisquits, waffles, etc. I prefer it to the Gluten Free Bisquick. That is ok if you find it, but the Pamela's tastes better.

    In the beginning a good thing to remember is to keep it simple & eat foods the way they came in nature. Fruit, veggies, meats, all good & naturally gluten free. Rice is good. Be careful of seasonings & seasoning mixes...a lot of times they have wheat flour. If you weren't before, you are now a LABEL READER!

    if you tell me what your daughter likes to eat, I can give suggestions based on what we have tried. In the early days, we kept a notebook every time we bought/tried a new food. A lot of the gf specialty things are expensive, so I am happy to share our experience to help you save a few dollars.

    Kim
    Thank you for the reply-it does stink but I really appreciate connecting with others like you who have gone through this. Can you give me an idea of what kinds of items you purchased to help prevent cross-contamination? I know the obvious- cutting boards-pots-pans but like did you purchase separate dining plates and utensils? I imagine that we will eat gluten free dinners but the rest of the house will continue eating the same cereals and bread at lunch. It's hard because she is 19- my youngest- and since she will be going back to college soon- and I have some frozen foods with gluten- I don't see having the whole house convert.

    Also-luckily for us we have stopped eating out a ton but as a family we had a weekly Friday night dinner at a local Mexican restaurant and trying to recreate that at home will be a challenge I think. Maybe when we get more into it we can talk to the owner- small place so we know who she is- but I don't think we will attempt that any time soon!

    As to recommendations- would love a gluten free pizza? Another of our things is picking up a Costco pizza-anything I could get to substitute?

    I'm sure I'll have lots more questions- thank you!
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  7. #7

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    Quote Originally Posted by 22jules View Post
    Thank you for the reply-it does stink but I really appreciate connecting with others like you who have gone through this. Can you give me an idea of what kinds of items you purchased to help prevent cross-contamination? I know the obvious- cutting boards-pots-pans but like did you purchase separate dining plates and utensils? I imagine that we will eat gluten free dinners but the rest of the house will continue eating the same cereals and bread at lunch. It's hard because she is 19- my youngest- and since she will be going back to college soon- and I have some frozen foods with gluten- I don't see having the whole house convert.

    Also-luckily for us we have stopped eating out a ton but as a family we had a weekly Friday night dinner at a local Mexican restaurant and trying to recreate that at home will be a challenge I think. Maybe when we get more into it we can talk to the owner- small place so we know who she is- but I don't think we will attempt that any time soon!

    As to recommendations- would love a gluten free pizza? Another of our things is picking up a Costco pizza-anything I could get to substitute?

    I'm sure I'll have lots more questions- thank you!
    I'm so sorry to hear this, but at least you have certainty!

    For kitchen supplies: also consider the colander/strainer, the silverware divider, the knife block, and the toaster. If you have a mixed gluten/GF kitchen, you might consider having a separate GF station for all of these.

    For pizza: I like the frozen Freschetta GF, which is very similar to a traditional thin crust. My kids like the individual size kinnikinnick frozen crusts for build your own. Depending on where you are in southern California, you might find local chains that do GF well. California Pizza Kitchen and Pizza Rev both have pretty solid GF protocols, for example (while it's impossible to entirely eliminate the cross-contamination risk in a pizza restaurant, we take the risk on occasion).

    Good luck!
    Snowflake
    Mom to
    DD TR, age 7. Dx-ed with T1 04/04/2012. Omnipod & Dexcom user. Dx-ed with celiac 12/23/2013.
    DS1, age 5.
    DS2, age 1.

  8. #8
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    May 2008
    Location
    Southern California
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    Quote Originally Posted by Snowflake View Post
    I'm so sorry to hear this, but at least you have certainty!

    For kitchen supplies: also consider the colander/strainer, the silverware divider, the knife block, and the toaster. If you have a mixed gluten/GF kitchen, you might consider having a separate GF station for all of these.

    For pizza: I like the frozen Freschetta GF, which is very similar to a traditional thin crust. My kids like the individual size kinnikinnick frozen crusts for build your own. Depending on where you are in southern California, you might find local chains that do GF well. California Pizza Kitchen and Pizza Rev both have pretty solid GF protocols, for example (while it's impossible to entirely eliminate the cross-contamination risk in a pizza restaurant, we take the risk on occasion).

    Good luck!
    Thank you for the suggestions! Do you think that it would be too soon to try eating out at like a California Pizza Kitchen? We are in So Cal--we have tickets to see a musical this Saturday--something we try to do a couple of times a year and our routine is to go to an Italian restaurant-Maggiano's beforehand. I was trying to decide whether I should just make something here and then go or try to eat out. Obviously she is 19 and the thought that she can't go out to eat--has been weighing on her since that is something that she would do often with friends at school. I know that she can but thought it best to have her heal and learn a bit first. Although by the end of the month she will be back at school and that will add a whole new dimension to this. The school in its literature says its good with celiac and gluten free but I guess we will see.

    Oh and thanks for the heads up on the silverware divider--hadn't thought of that--but the silverware itself should be good or should I set aside a new set for her in her own drawer?

    Thanks!
    Julie (mom to Jessica 21 dx Hashimotos 12-21-10 and Erin 19 dx 2-9-07 pumping humalog in Medtronic Revel

  9. #9

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    Quote Originally Posted by 22jules View Post
    Thank you for the suggestions! Do you think that it would be too soon to try eating out at like a California Pizza Kitchen? We are in So Cal--we have tickets to see a musical this Saturday--something we try to do a couple of times a year and our routine is to go to an Italian restaurant-Maggiano's beforehand. I was trying to decide whether I should just make something here and then go or try to eat out. Obviously she is 19 and the thought that she can't go out to eat--has been weighing on her since that is something that she would do often with friends at school. I know that she can but thought it best to have her heal and learn a bit first. Although by the end of the month she will be back at school and that will add a whole new dimension to this. The school in its literature says its good with celiac and gluten free but I guess we will see.

    Oh and thanks for the heads up on the silverware divider--hadn't thought of that--but the silverware itself should be good or should I set aside a new set for her in her own drawer?

    Thanks!
    With pizza, I don't think there's any way to completely eliminate cross-contamination risk, but California Pizza Kitchen/CPK does better than most national chains. As I recall, CPK's gluten-free protocol includes keeping the GF crusts wrapped separately and prepping GF foods in a separate area. At our local CPK, they sent the manager over to talk with us whenever we mentioned celiac/GF. We have also asked pizza places to put down a clean board or foil or other barrier when they put pizza in the oven to avoid cross-contamination.

    On the silverware divider: silverware should be fine to reuse when it comes out of the wash, and it should be ok to have a common silverware drawer for everyone if you're sure that there's no reason for gluten to settle there. We replaced our plastic divider with a new one when we went GF because gluten likes to stick to plastic, and we also had a lot of kids' plasticwear, plus plastic measuring spoons, in and out of that drawer prior to going GF. It might not be as much of an issue if you have older kids, or only use metalware.

    Good luck!
    Snowflake
    Mom to
    DD TR, age 7. Dx-ed with T1 04/04/2012. Omnipod & Dexcom user. Dx-ed with celiac 12/23/2013.
    DS1, age 5.
    DS2, age 1.

  10. #10
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    May 2009
    Location
    Southern CA
    Posts
    707

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    How's it all going?
    I was gone taking my daughter back to college, so hadn't checked in here for a while.

    Hope it's going well.
    Kim
    Mom to Danielle, age 18, dx'd type 1 age 3 in 2001. MM 630G pump with cgm. dx'd celiac 6/09
    She will be a sophomore at University of Utah in the fall 2017.
    Go Utes!

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