jenn42

Thank you so much for your information. It's been very helpful. Yes, I'm sure she's getting some kind of cross contamination. Matter of fact I'm positive. Our kitchen at home isn't completely gluten-free. I'm still in the process of getting it that way. We really try by keeping one counter for gluten only!! The rest of the kitchen is all gluten-free. Hopefully bread crumbs are cleaned up??

I will have to say, I have never been a "cook", so this is a little challenging for me to find things gluten-free that our family will like and that I can cook to taste good. We did eat out quite a bit and conveniece food was always in our pantry. That has changed dramatically. I am cooking more and have found great gluten-free recipe's on Pinterest and several gluten-free cook books. My daugher is and always has been a wonderful eater, fruits, veggies, yogurt, and more, so this transition has been easier for her than if I had a picky eater. My 15 year old son is different. He is a very picky eater and we have turned his world upside down with no convenience food. He's adjusting well though. So, slight cross contamination in our home is definitely a problem I'm sure.

She is a very determined/strong willed child and she knows what she can and can't do. I feel confident that she's folllowing her diet when she's not at home. She doesn't want to feel that sick ever again...is what she's told me. She has downloaded all the gluten-free apps on her i-touch so she can be refer to them for gluten-free information. We are very proud of her. So, it looks like I need to do some more cooking/baking and work on a gluten-free kitchen in hopes that her antibodies get back to normal.

Thanks again for all your help.

Take Care,

Jenn

  On 10/15/2012 at 8:43 PM, GottaSki said:

No apologies ever needed here...most of us learn about about Celiac Disease as we go - I had no clue what celiac was prior to my own diagnosis.

All of your daughter's tests are within normal range which is good. I haven't heard of numbers going up after removing gluten, but that certainly doesn't mean they can't. I also agree that if you are researching and your daughter's symptoms have improved you don't necessarily need to see a nutritionist. There are members that have found them very helpful - it depends on the nutritionist - I saw one after I was gluten-free for one month and she did not tell me anything that I hadn't already learned, so for me it was a disappointment and was not covered by my insurance.

I think I'd focus on making sure you have removed all sources of gluten and cross-contamination. Perhaps she is getting minute quantities somewhere that is enough to trigger the immune system, but not enough to cause symptoms. She's 12 - so I'll ask - is it possible she is eating something with her friends or at school that either has gluten or is prepared in a gluten containing kitchen?

It can be very tough to get all sources of gluten out - it takes time.

Patience helps too - perhaps her results will come down by the next check.

In case you are curious:

AGA (Gliadin Antibody) - tests for antibodies in the blood created in reaction to one of the proteins found in gluten

DGP (Diamated Gliadin Peptide) - tests for antibodies in the blood created in reaction to the peptides specific to gliadin (during digestion gliadin proteins are broken down into smaller units called peptides).

From what I've read the DGP is more sensitive and thought to be the first to react to gluten - again I don't know if the small amount your daughter's went up is significant or not - personally I think it's a little too early to know.

Please forgive me, after 6 months I'm still learning all this.

Her Gliadin Antibody IGG , which I'm assuming is the DGP was 7 and now it's 8, the DGP IGA was 4 and now it's 7, (went up a little)? Both were "in range"??

The TTG IGG was 13, now it's 8, TTG IGA was 6, now it's 7.

Hopefully that makes sense to you. The G.I. doctor was concerned they were not coming down and going up a little. She asked me to see a Nutritionist. I'm really not wanting to do that. I have done so much research that I feel with no symptoms we don't need to go that route. My Pediatrician said no worries, as long as she's not having any symptoms.

I appreciate your imput on this.

Thanks again,

Jenn

  On 10/14/2012 at 2:16 PM, GottaSki said:

Hi Jenn-

Which levels are high? Have the numbers come down from her original tests? It can take time for all antibodies to get down to normal ranges. Did her DGP IgA or IgG come down? DGP is often the first to rise with gluten ingestion and first to fall with gluten withdrawal.

I'd think that if her health has improved drastically, you are doing a great job removing gluten from her life. Has she had any instance of symptoms from accidental glutening or cross contamination. If your daughter doesn't have obvious reactions, all you can do is be a gluten-free compliant as possible and test every six months to watch for the numbers to come down.

My 12 year old daughter just had her 6 month lab work done after being diagnosed with Celiac in March 2012. Her levels are still high. She's feeling MUCH better on the gluten-free diet and hasn't had any stomach aches, headaches and she is tolerating stress much easier. Why are the levels still high and should I be concerned even if she's feeling 100%???

Question...Is Modified Food Starch Gluten Free? I've heard conflicting reports.

I recently read an article that states preservatives in foods are not good for celiacs and they shoud stay away. I recognize that preservatives are bad for everyone. It's just another concern and wanted to get feedback on this.

That's what I thought. Thank you

I'm still so confused about Natural Flavorings and Carmel Color. It's in EVERYTHING!! Can anyone explain this to me.

I agree with xjrosie. Why spend all that money on a lunchable when you can buy high quality meats/cheeses (Boars Head) and do it yourself. I'm sure the nutritional value is much better.

I have a question about Zone Protein Bars. My DD used to eat the Peanut Butter/Chocolate one's before she was diagnosed with Celiac. I read the label and there's no gluten, however it's manufactured in a facility that contains wheat. I did skim through this thread and figured out that it depends on your sensitivity on whether to "try" it or not. As a Celiac isn't it important to just "stay away" from even facilities. Some symptoms are happening when you are not aware??? What's this about the whole Barley thing? The U.S. doesn't have to label barley containing ingredients?

Thanks everyone. It seems to be getting better. She's such a trooper. And....the glass of wine does help Mommy!

My DD has been gluten-free for almost 2 weeks now and her moods are all over the board. She's been very irritable. I'm not sure if it's hormonal (she's almost 12) or it's the gluten-free diet. She did the gluten-free diet for 12 days a couple months ago and was an angel, then we had to go back on gluten for the biopsy. Is this normal as she's adjusting to the food change. I'm thinking maybe my kitchen is as clean of gluten as I think it might be. We are still learning new things every day, so possibly some CC is going on? Any suggestions? Thanks.

I thought Rice Krispies were gluten free. Am I wrong?

  On 3/28/2012 at 6:34 PM, Cara in Boston said:

We use crushed cereal (chex, gluten-free Rice Krispees, etc.) all the time instead of Panko. It does taste different - maybe sweeter? I also use crushed gluten-free Pretzels . . . sometimes I mix the two for a balance. I bought a mini food processor just to make crumbs - it was inexpensive and works great. You can make a whole bunch and freeze it to use later.

Cara

Is the Kraft Deluxe cheese gluten free?

My 11 year old DD was diagnosed in February with Celiac. Blood tests and Endoscopy were slightly postitive, but still positive. My DS, DH and I were all negative. My recommendation would be to keep your child on gluten and get an Endoscopy done if you want. I have noticed a huge difference in my DD since we have gone gluten-free. Her's is mainly behavior and headaches.

Good luck.

Thanks everyone. This information has made it a lot easier

THANK YOU SO MUCH!!!! Now I can communicate with everyone

I forgot to mention, I just lost 30 pounds on a fruits, veggies, protein and of course, whole grains. I hope I don't gain it all back eating no gluten

Marshmellows, maltodextrin, and dextrin are ok? We don't have Kroger, only Publix. Maybe I can find those brands at Whole Foods Market? I haven't found a good bread yet. I guess I should start making my own

Dishwasher detergent?

I hope this isn't a stupid topic. I'm not realy computer savy when it comes to these forums. Is there a help button on how to navigate through our profile's and the forum's? I'm having a heard time understanding some of the "lingo" on the topic's and such. DD, DH, and more, what do all of these mean? Thank you.

This is all a great start! Thanks so much. I too want to go out and buy every cook book, but now I'm not going to waste the money. Lisa, you mentioned spices. What should I look for on the label? Is there wheat is spices? I have heard that carmel color and natural flavorings are something to watch. Is this true?

We are in the first stages of turning our household/kitchen gluten free. Does anyone have any suggestions on a starter grocery list for gluten free must haves? Also, is it important to get new shampoo/conditioner, make-up, toothpaste, deoderant and any other personal items we need for daily use? I'd appreciate all the help.

Thanks.

Ok, we finally have confirmation. Blood tests, genetic testing are postive for Celiac. The Endoscopy isn't showing any damage or signs of Celiac as of right now, but may in the future if she continue's eating gluten. The doc is still diagnosing Celiac and wants her on a gluten free diet for 6 months and recheck blood at that time. Are the follow up visits usually 6 months, and is blood work needed each time? Maybe that depends on the doc? So, I guess this means we caught this in time before any damage. I do realize that every case of Celiac is different, with everyone having different symptoms and such. We do believe that my DD has slight nausea with minor headaches, and we are thinking maybe some behavior/anxiety issue's when on gluten.

I'm glad all the testing has been completed. It took quite some time to get this done. I feel relieved for some reason. I hope that's not a bad thing. We finally can get closure and get started on this whole new way of eating. I thought I did a lot of research before all the testing and I still feel so confused as to where to start. I know everything will come together eventually.

I'm going to make this short. My DD's blood work came back positive for Celiac. DH, myself and son are all negative for Celiac. The Endoscopy was done and the GI said there is absolutely no damage to the small intestine, looks very healthy. She has a tiny ulcer and a hiatal hernia, (don't we all). What does this all mean? She is still eating gluten with no complications. Any advice would be helpful. Do I go gluten free for her or not?

Thank you everyone. This whole thing gets easier (emotionally) the more information I get, and with the help of others. Thanks so much!

My DD had her Endoscopy today and it went perfect! I was so nervous and it was absolutely nothing! She did great! They gave her a teddy bear and a HUGE orange popsicle.

The unknown is so scary! Thanks to everyone for your supportive words.