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Ok We're Forgoing The Biopsy...now What?

celiacsmom

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celiacsmom Rookie
celiacsmom
Posted

Thank you so much for your responses to my biopsy question! What a great network you have here! I also called the Gastro. dept as Children's Hospital Boston and spoke with a nurse there to get a better feel for what the biopsy tells you. After discussing it with my hubby tonight we decided it makes no sense what-so-ever to put him through it. So, the diet starts tomorrow morning. I went to a local grocery store that I was told carries gluten-free products and found lots of stuff but most of it is snacks, cereals & some baking ingredients so I've got those covered but I'm not quite yet ready to start the baking. I think I'll give that a shot this weekend. What I'm really wondering is does anyone know of a comprehensive list of dos & dont's? I know I'll be able to get help from a nutritionist, but who knows how long it will be until I can get an appointment and Cody just can't go the next month or two on EnviroKids cereal and snack bars! LOL I really want to get going on learning all those hidden sources of gluten - i.e. I know Malt is a no-no, but what about maltodextrin? How about lunch meats? Modified Food Starch is a no-no, but how about modified corn starch? As all you been there done that parents know, my list of what's OK, what's not seems to be growing exponentially at this point.

I'm so overwhelmed, but I also know that this can be done and isn't too bad once you get used to it and build your confidence in choosing the right things. Baby steps, right?

OK - Doc (my little guy) is actually sleeping well at the moment and it's 12:30 am so I really better take advantage of these precious few moments of potential sleep. ;o)

Again, thanks so much for the support I've already seen and received here! I just can't wait to be able to give the support also & I apologize for this turning into somewhat of a BLOG!!! LOL

Heidi

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Rachel--24 Collaborator
Rachel--24
Posted

Heidi,

Have you seen the safe/forbidden ingredient list yet? If not here is a link. You can print out the list and take it with you when you shop. Thats what helped me in the beginning but it becomes second nature with time.

https://www.celiac.com/st_main.html?p_catid...-02106297805.47

Also here is directions on how to download the Delphi list which is a huge list of mainstream products that are gluten free including lunchmeats, snacks, etc. Its always a good idea to double check with companies to make sure no ingredients have been changed.

1) Go to the website, Open Original Shared Link

2) Click on "messages" or "start reading"

3) Select the folder "gluten-free Product List"

4) Click on the topic called "Downloadable files word"

5) Of the four options, choose the one in the upper right.

You may need to register (the basic version is free) in which case, just register first, then complete the steps above.

Hope this helps....good luck! :)

Guest nini
Guest nini
Posted

I actually have a "newbie survival kit" that I've put together with a lot of useful files INCLUDING the delphi forums list, naturally gluten free menu ideas, 50 things to eat RIGHT NOW, and menus for fast food and other restaurants. If you would like this "kit" e-mail me at nisla@comcast.net and in the subject put "request newbie survival kit" and I'll send it on to you.

It's in a zip file format, so you'll need a unzip program to open it. If you can't open it, I can send the files individually, or several at a time, but it's pretty time consuming. I don't mind doing it though, so just let me know!

happygirl Collaborator
happygirl
Posted

You are right-malt is bad, but maltodextrin is safe (seems like it should be bad though!)

modified food starch is bad simply because it doesn't tell us what the source is. It very well could be safe. I don't risk it. Modified corn starch is safe.

lunchmeats can have wheat starch in them as fillers .....i have found it twice---both in roast beef. One at the store, one at a deli. When I buy lunch meat and have it sliced, I ask to see the ingredients, and then I ask them to wipe down the machine because I have "allergies."

another confusing one is MSG....monosodium glutamate. Based on the name, I think many people think it has gluten. It does not, however. Safe for Celiacs.

momandgirls Enthusiast
momandgirls
Posted

Hi - My daughter has Celiac and her care was at Children's in Boston. I just sent you an email with some information. Hope it helps!

key Contributor
key
Posted

My son didn't have the biopsy and he had such a dramatic response to the diet that that was enough for the doctors and us. He never cheats or gets gluten. He is almost a year into the diet. Very glad we didn't have to put him through having the biopsy.

Good luck starting the diet. At first it was hard with our son, because he wasn't eating very many solid foods and we are vegetarian and he couldn't tolerate dairy for about six months. Now he can have dairy and eats adult cereal, etc. At first we fed him alot of mashed gluten-free pasta, potatoes and he lived on yogurt. It is much easier now and the variety is much better. It does get easier.

MOnica

celiacsmom Rookie
celiacsmom
Posted
  • Author

Thank you! Thank you! That is exactly what I am looking for and this will really help the cook at the day care!

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    • plumbago
      Anyone else with very high HDL?

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      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
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