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


celiacsmom

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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


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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!


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    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
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