Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


celiacsmom

Recommended Posts

celiacsmom Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

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

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

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

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

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

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,004
    • Most Online (within 30 mins)
      7,748

    Daffodil
    Newest Member
    Daffodil
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.