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Well...it's Official.

mommy2krj

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mommy2krj Explorer
mommy2krj
Posted

Or mostly official. The biopsies did come back negative but the GI doc said given the scalloping in his intestines and the positive blood test to try a strict gluten free diet for the next 3.5 months and we'll see her in October to see how things are going.

So a strict diet it is. I am relieved to have some direction. She did take more blood to run the EMA IgA tests (again, why don't they do this all at the same time?!?!) and also is running the genetics test for the DQ2 and DQ8 genes.

We had rice noodles tonight for our spaghetti and some gluten free crunchy breadsticks from Schar....my 15 year old was surprised that everything was gluten free. :) He liked it all...well..the spaghetti sauce wasn't a big hit but it was a jarred organic/gluten-free sauce and we usually make our own so it was....different. I bought some brownie mix and may go get some cupcake mix so I can make some gluten-free stuff little man can have for my daughter's graduation party...so we'll give those a try and see how they are. I just didn't feel like doing anything fancy tonight. Now I need to go grocery shopping. Hopefully I can get over the sticker shock.

I did get copies of the pathology and blood  work results...but haven't really had a chance to look them over. They did give me a nice binder full of information....I'll have to look through it and see how informative it is. The nutritionist was lovely. I think she was a bit relieved that we had already been on a whole foods path and that I had been researching the heck out of this. :) She pretty much left her door open if I need help with anything and had some lovely pointers about local stores I didn't know existed. :)

The GI doc was wonderful too. Explained everything in detail and answered all my questions....she even drew me a nice little picture to help me understand what and where and how with the scalloping. I am so glad I have access to such a wonderful doctor.....even if her Polish accent makes her difficult for my American brain to understand all the time. She made sure I was understanding. :)

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powerofpositivethinking Community Regular
powerofpositivethinking
Posted

so glad you've got a plan!!

greenbeanie Enthusiast
greenbeanie
Posted

Good! It's great that you found a helpful doctor. I hope you see quick improvements!

nvsmom Community Regular
nvsmom
Posted

Good plan.  :)

 

Just a warning about the EMA IgA, it seems to detect more advanced damage to the intestine. The EMA basically kicks in after the villi have been damaged and tries to wipe out the top layer of the intestines in an effort to eradicate whatever was damaging them in the first place (as I understand it) - it's not exactly logical, is it?  Anyway, the EMA is rarely positive in kids so don't be surprised if you get a negative result.

 

good luck!

blmoreschi Apprentice
blmoreschi
Posted

Good luck - we're about to mark 3 months since diagnosis and I vividly remember how you're feeling. Overwhelmed mostly! But 3 months in it certainly is less overwhelming and I've even gotten immune to the cost aspect. Once I started thinking of it as a medical necessity I didn't mind spending the money. Also, you won't have to make THAT many changes at home - I've found that just by making my kitchen gluten free and having the right ingredients we are still eating mostly like we did before. I cook a lot from scratch anyway, so just making sure all the ingredients are gluten-free and then we're good to go is our approach. Your homemade sauce should be fine once you make your kitchen gluten safe! Eating out is a lot scarier and harder, but do yourself a favor and try not to eat out for a few weeks until you have a handle on things. And you'll get more confident asking for special treatment the more sure you are of what you need. Good luck, and hang in there!

mommy2krj Explorer
mommy2krj
Posted
  • Author

Good luck - we're about to mark 3 months since diagnosis and I vividly remember how you're feeling. Overwhelmed mostly! But 3 months in it certainly is less overwhelming and I've even gotten immune to the cost aspect. Once I started thinking of it as a medical necessity I didn't mind spending the money. Also, you won't have to make THAT many changes at home - I've found that just by making my kitchen gluten free and having the right ingredients we are still eating mostly like we did before. I cook a lot from scratch anyway, so just making sure all the ingredients are gluten-free and then we're good to go is our approach. Your homemade sauce should be fine once you make your kitchen gluten safe! Eating out is a lot scarier and harder, but do yourself a favor and try not to eat out for a few weeks until you have a handle on things. And you'll get more confident asking for special treatment the more sure you are of what you need. Good luck, and hang in there!

Thank you! :) It's definitely good to know it will be less overwhelming down the road. I feel more pulled together now that we actually have some answers and a definitive go gluten free. It's also nice to hear from someone that was already cooking a lot from scratch....we don't do a lot of processed foods but I was worried about the noodles. We'll just be eating them a little less, which is ok too. Little man is going through corn tortillas like they're water so I'm definitely going to have to find a good recipe for those.

We don't eat out very often at all to begin with....not with two boys that eat like they have never been fed! ;)

mommy2krj Explorer
mommy2krj
Posted
  • Author

Good plan.   :)

 

Just a warning about the EMA IgA, it seems to detect more advanced damage to the intestine. The EMA basically kicks in after the villi have been damaged and tries to wipe out the top layer of the intestines in an effort to eradicate whatever was damaging them in the first place (as I understand it) - it's not exactly logical, is it?  Anyway, the EMA is rarely positive in kids so don't be surprised if you get a negative result.

 

good luck!

Thanks for the heads up on that. I didn't know that....she just said it was a more sensitive test and that the DGP one was generally just used for very young children. Hmmmm....guess we'll see what happens there.

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stanleymonkey Explorer
stanleymonkey
Posted

Having to go gluten-free turned out to be a blessing in disguise for us, we had to change some of the things we ate, and making them gluten-free meant less processed things, my 4 yr old will eat things that her friends won't touch. We tend to make as much as possible from scratch then we know itvs safe, and she seems to like the food more. Reading labels I found out what was in some of our food, yikes!

If you want god safe rice noodles Vietnamese dry rice noodles are good. The factories that make them tend only to make all the different thickness of noodles, and nothing else. Keep away from Japanese rice noodles they always add wheat, dried Chinese tend to be safe, but fresh Chinese rice noodles can sometimes have wheat flour they sprinkle it's on them so they don't stick together

GottaSki Mentor
GottaSki
Posted

Thank you! :) It's definitely good to know it will be less overwhelming down the road. I feel more pulled together now that we actually have some answers and a definitive go gluten free. It's also nice to hear from someone that was already cooking a lot from scratch....we don't do a lot of processed foods but I was worried about the noodles. We'll just be eating them a little less, which is ok too. Little man is going through corn tortillas like they're water so I'm definitely going to have to find a good recipe for those.

We don't eat out very often at all to begin with....not with two boys that eat like they have never been fed! ;)

 

If you already know how to cook...you know how to cook gluten-free.  Don't worry about noodles...substitute rice, corn, quinoa -- or combo....you've got this.

 

Hang in there :)

Mom-of-Two Contributor
Mom-of-Two
Posted

My daughter DID have positive EMA, but normal biopsy! Go figure :)

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