Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

New To The Gluten Free Life - Help


Trenten's Mommy

Recommended Posts

Trenten's Mommy Newbie

Hello,

My son was diagnosed 1 week ago with Celiac Disease. We had been to the doctor's office about 5 times in a month and a half period. The first sign I noticed was his distended stomach. I took him and they did an X-Ray. The PA told us that he was "backed up" and put him on Miralax. Probably the worst thing you could do for a child (or anyone for that matter) with Celiac Disease. He was supposed to be on it for 2 weeks. I thank the stars that I took him off after just 4 days. I finally took him back in 2 weeks later when his diapers got worse, he stared vomiting, his belly seemed to get bigger and he seemed to not be gaining any weight. His personality completely changed as well. He didn't want to play outside or even inside for that matter. He just wanted to sit and watch Backyardigans ALL DAY LONG. We went back in and I told his doctor that I wasn't leaving until he figured out what was wrong with Trenten. His doctor mentioned 5 things he was going to test him for with Celiac Disease being one of them. Of course, like almost everyone else, we had NEVER heard of such a thing. It took 3 days for the test result to come back positive. His levels were almost TRIPLE the normal level. I'm pretty sure that my husband and I are just now coming out of the denial phase, or starting to anyway. Trenten had always been sick. He's had just about every strain of Flu, Virus and Cold that you can think of along with RSV, Asthma, Roto Virus, Ear Infections and Strep throat. We now know why he's been so sick. Now, I know that this is something that is managable and he will live a long healthy happy life. I guess I'm here because I don't know what to do. I've never been one to cook or plan a meal. We are very much a "Eat on the go, or order a pizza" family. I'm feeling very much overwhelmed. I know we've taken the first step by eliminating ALL Glutens from his diet but I don't know where to go from here. I went to the grocery store last Saturday to get some last minute things for our daughters 7th birthday party and I was there for two hours reading labels on Ice Cream and Frosting. I had my best friend on the phone googling ingredients as I shopped! I know that this will get easier with time, but right now, it's very overwhelming. It would be greatly appreciated if we could get some ideas on how to handle telling him he can't have certain things, on how to tell my 7 year old that her diet has to change as well (she's not showing any signs whatsoever of Celiac Disease), on what to make for meals, or what to pack for daycare lunches and snacks. I appreciate you taking the time to read my story. This website has made a difference in my life already. I don't feel so alone. Thank you so much.

Tara

Trenten's Mommy.


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



Celiac.com Sponsor (A8-M):



PeggyV Apprentice

Tara,

Welcome to the forum. You will get a lot of good advice and sympathy here. I know it is rough in the beginning. How old is Trenton?

I cant even imagine how difficult this would be with a young child, but it will get easier.

Planning is something very helpful with meal planning. But it doesnt have to be hard. Fresh fruits and veggies are good snacks, but he can half fritos, some potatoe chips and tortilla chips too. You will find a lot of common items are glutten free, my best advice is read labels.

Welcome, and best of luck.

Guest j_mommy

Welcome!!!

Go under the recipes section and print off recipes...that is what I did and you know they are tried and true and do not taste like cardboard. I put all of them in a binder.

Also for shopping...print this off and take it with you, tons easier than "phoning" a friend!LOL

https://www.celiac.com/st_prod.html?p_prodi...-32107512505.ed

Make sure you go through all your cooking things....is new toaster, cook ware if scratched...I use my old stuff b/c it was fairly new with no scratches!!Same with plastic utensils, if you use wood I would get new.

Buy a good gluten-free cookbook...there is one for families which has some good kid friendly recipes. I buy mine on amazon!

Books: Living Gluten Free for Dummies by Dana Korn...great book and has some starter recipes

Celiac Disease: A hidden Epidemic by Dr. Peter Green

I was an eat and go person too, but you learn to cook enough of something and freeze things so you don't have to spend ALL your time in the kitchen!!! I do cook afternoon on sunday when my son is naping and do up a couple things for the week so I don't have too cook everynight!

know that the road does get smoother as you get the hang of things and we are all here for you. I'm sure more posters will add more!

Good Luck and welcome again!

jadobson Newbie

Try shopping at Walmart. They label their brand of foods Gluten-Free if they are. They are even stocking gluten free pasta, brownie mixes, muffin mixes, and waffles in our area. Some of our staples are corn tortillas with beans and cheese. However, since he's pretty torn up dairy might not work for him. For snacks Trix is good along with the usual fruit or applesauce. We also like bologna w/cheese rolls for lunch. Our favorite flour is Tom Sawyer Flour which works well as an equal replacement. I know our Whole Foods carries it.

For on the go meals check and see if any restaurants are in your area that offer gluten free food. Outback Steakhouse is one that is common in most states. We have an In-and-Oout hamburger joint that we go to that will cater to us. Red Robin is good too. Don't forget to ask places to change their gloves. You might be surprised by the places you currently go to. Just ask the places to find out what is safe and what isn't. Most places will accomadate, but you will have to explain the cross contaimination issues to them.

Good luck!

dionnek Enthusiast

Tara, it will get easier. Just keep reading. Also, don't be ashamed if you break down crying in the grocery store - I did this for a few months!

Wallmart's brand of scalloped/augratin potatoes (in the box) are gluten free - says so on the box. I was thrilled to find those (the Betty Crocker and other brands are NOT gluten-free). Also, Fruity Pebbles, Cocoa Pebbles, and several Disney cereals are gluten-free - just read ingredients. Envirokidz makes great gluten-free vanilla animal cracker, and Blue Diamond nut thins are good snack crackers (I have a 2 1/2 yr old who loves these, even though she does not need to eat gluten-free). Van's frozen waffles (make sure you get the Gluten Free ones - they make regular too) and Trader Joes now has gluten-free frozen pancakes that are way better than their waffles. I eat way more fruit and veggies now, and meat and eggs too. A lot of hot dogs/lunch meats and keilbasa/sausages are gluten free - just always read labels. Also, make sure you check for barely/malt and rye in ingredients, not just wheat (my first glutening was with a "wheat free" cookie a friend bought me - it had barely in it!). Day care is going to be tough - at ours they are constantly giving the kids cookies and crackers, so I don't know how I'd do it. I'm probably going to have our daughter tested when she's 3, and if she is positive I'm thinking I'll have to stay at home just to keep her from getting all the gluten at daycare!

Freezing food is your friend also :) I bought another freezer just for my gluten-free foods (I'm the only gluten-free one in our family) - I make a lot of pancakes/waffles and freeze them, and make large dishes (lasagna using Tinkyada noodles, chili, rice and beans, crock pot items, etc.) and freeze half in small containers to take out for lunch or dinner. You definitely need a new toaster (we don't use a toaster - just use a toaster oven which I can clean and I still put my bread on foil to toast it) and collander and wooden cutting boards/spoons. My best "investment" so far is the KitchenAid stand mixer - expensive but well worth it if yoiu plan to make bread/pizza crust. I burnt up my hand mixer the first time I tried to make gluten-free bread :)

Darn210 Enthusiast

One of your best bets is to get familiar with the brands that list their gluten. Kraft is a huge one since they make so many products. This website has a good list of those companies. You may want to make a copy of the list to have handy in your purse or car at least for a while.

Open Original Shared Link

A lot of mainstream items are gluten-free . . . you just might need to change the brand that you normally buy.

This website is a good resource for checking particular food items. Chances are somebody has already done the research.

The nice thing about kids is they don't require the same diversity in their menu as we do. My daughter would have peanut butter on a rice cake, apple sauce, and a few chips for lunch everyday if I would let her. She would have pasta every night for supper. Also, in general, they accept whatever you put down in front of them. That doesn't include vegetables :P those you have to sneak in whether they have Celiac Disease or not!

Some generalized food products for kids (I'll list my brand but there are others that are OK, too) that make for the quick meals:

All fresh fruits and vegetables are OK

All fresh meats are OK - watch for meats that have been marinated, seasoned, or broth added - doesn't mean they are NOT - they just have to be checked

Lunch meats/cold cuts/hot dogs - we use Oscar Mayer (they are part of Kraft and will list gluten on the label)

Rice cakes

Peanut butter (Jif)

Pasta (Tinkyada - will find in a specialty store but this one is good enough that the whole family eats it)

Lots of the jarred spaghetti sauces are OK - I make my own but I know Classico red sauces are OK

Tacos - Ortego brand lists gluten

Ore-Ida fries (not all are OK - lots are - I know the basic ones are - shoestring & crinkle cut)

Cheese sticks

Frito-Lay has quite a few products - check their website

Van's waffles have a gluten free version

Log cabin syrup

Mainstream cereal: Dora the Explorer, fruity pebbles and coco pebbles (at a health food store, you'll find gluten-free corn flake type cereal, cheerio type cerial, chex type . . .)

Potato Buds instant mashed potatos

Great Value brand (Wal-Mart) au gratin potatos

You can bake from scratch or there are lots of mixes (that are just as easy as the gluten mixes) but freeze whatever you are not going to eat in a couple of days. The gluten-free food will not last as long on your counter as you are use to. Also, I think that the items that you make from scratch or from mixes taste a lot better and are cheaper than the frozen ones that you can buy in the store (here, I'm talking mostly about muffins and bread). So far, I haven't had any problems freezing something to use for later.

I liked the book: Kids with Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-Free Children. She talks about a lot of the issues you have listed. You can check the table of contents on Amazon.

Good Luck - its overwhelming now, but I promise it gets a lot easier.

Darn210 Enthusiast
Log cabin syrup

Oops . . . it has to be Log Cabin Country Kitchen. Aunt Jemima is OK, too.


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
      128,075
    • Most Online (within 30 mins)
      7,748

    Judy Taylor
    Newest Member
    Judy Taylor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @KRipple, thank you for the lab results from your husband's celiac disease blood antibody testing. The lab result you share would seem to be the tTG-IGA (Tissue Transglutaminase IGA) and the test result is in excess of 10x normal. This is significant as there is an increasing tendency for physicians to grant a celiac disease diagnosis on the basis of antibody testing alone when the scores on that particular test exceed 10x normal. This trend started in the UK during the COVID pandemic when there was tremendous pressure on the medical system over there and it has spread to the USA. The tTG-IGA is the centerpiece of celiac disease blood antibody testing. All this to say that some doctors would grant a celiac disease diagnosis on your husband's bloodwork alone and not feel a need to go forward with an endoscopy with biopsy. This is something you and your husband might wish to take up with his physicians. In view of his many health issues it might be wise to avoid any further damage to his small bowel lining by the continuing consumption of gluten and also to allow healing of such to progress. The lining of the small bowel is the place where essentially all of our nutrition is absorbed. This is why celiac disease when it is not addressed with a gluten free diet for many years typically results in additional health problems that are tied to nutritional deficiencies. The millions and millions of tiny finger-like projections that make up the nutrient absorbing surface of the small bowel lining are worn down by the constant inflammation from gluten consumption. In celiac disease, the immune system has been tricked into labeling gluten as an invader. As these finger-like projections are worn down, the efficiency of nutrient absorption becomes more and more compromised. We call this villous atrophy.   
    • KRipple
      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
    • Jmartes71
      Ginger is my best friend, it helps alot with tummy issues..
    • aattana
      Hi Phosphone, did you ever figure out what elevated your DGP?  I am in the same boat. 
    • trents
      Scott makes a good point about the prednisone. It has a general suppressing effect on the immune system. Don't misunderstand me. In view of your husband's several autoimmune afflictions, it would seem to be an appropriate medication therapy but it will likely invalidate endoscopy/biopsy test results for celiac disease.
×
×
  • Create New...