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One Week, No Improvement?


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10 replies to this topic

#1 Mary5757

 
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Posted 08 October 2012 - 05:12 PM

My 18 month old daughter was diagnosed a week ago with celiac. We started her on a gluten free diet immediately. However, a week later she is showing no signs of improvement. She is very lethargic, little appetite, fussy, clingly. She lost weight before we diagnosed her. I'd be surprised if she hasnt lost more:(. I'm so worried about her. Is this normal? How long before you noticed a difference! I've seen so many posts where it seems like improvements are noticed within a few days. How can I be sure there is nothing else going on?
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#2 GottaSki

 
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Posted 08 October 2012 - 05:32 PM

Welcome!

I know it is very frustrating when you can't see improvement. With the symptoms you list it can take some time. The first symptoms in young children to improve are usually the digestive - tummy aches, diarrhea, etc - even these can take weeks and months, rather than days. It can take time for the inflammation to subside and for her small intestine to start healing.

During these early days minor gluten can still be causing problems - it takes time to remove all sources of gluten. If you haven't, you'll need to replace some kitchen items - toaster or use a toaster oven with foil lining the shelf, separate cutting board, colander, cooking utensils, etc. If your kitchen will remain mixed (preparing gluten) a separate color of cookware/utensils is an easy way to help reduce cross-contamination during preparation.

Hang in there - ask as many questions as you need - the transition is tough, but we've all gone thru it and are here to help.

Wishing your daughter speedy healing.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 Mary5757

 
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Posted 08 October 2012 - 05:41 PM

What about cooking on a grill? We are only putting salt and pepper on items that we are grilling but could there be remnants of gluten from previous cooking?
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#4 Mary5757

 
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Posted 08 October 2012 - 05:44 PM

Also, do most people recommend everyone going gluten free? So far she is the only one who has tested positive. Poor thing. We are trying to focus on whole foods for now. Although she does have processed gluten free snacks. Thanks for the help and advice! So stressful, I wish it was me instead of her:(
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#5 GottaSki

 
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Posted 08 October 2012 - 05:48 PM

What about cooking on a grill? We are only putting salt and pepper on items that we are grilling but could there be remnants of gluten from previous cooking?

For now you can line your daughter's food with foil on the grill.

Some will recommend replacing the grilling racks. Personally I think if it is cleanable - maybe with steel wool if needed - then clean it. For our BBQ my husband cleaned the racks with a wire brush then turned the flame up to high after cleaning and I never had a problem with it.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 psawyer

 
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Posted 08 October 2012 - 05:49 PM

There could be residual traces of gluten on a grill if buns have been toasted, or other gluten items have been cooked. Once you go gluten-free with it, the amount will diminish. A gas grill can reach over 600 degrees with the cover closed. 30 minutes of sustained heat at that temperature will destroy residual gluten--preheat cycle--don't keep any food at that level--many carcinogens develop in a short time above 550 degrees.

In the meantime, put a piece of foil on the grill to prevent contact between the grill and the food you want to protect.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
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#7 GottaSki

 
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Posted 08 October 2012 - 05:56 PM

Also, do most people recommend everyone going gluten free? So far she is the only one who has tested positive. Poor thing. We are trying to focus on whole foods for now. Although she does have processed gluten free snacks. Thanks for the help and advice! So stressful, I wish it was me instead of her:(

There is no need for everyone to go gluten-free right away. There are many whole foods that are naturally gluten-free - as you transition you'll find what is best for your family. I suggest dinners be gluten-free so you aren't preparing multiple meals. With an 18 month old you will have to be careful about where gluten is prepared. Do you have pets? - many pet foods have gluten and can be tough to separate from those shorter folks in the house.

The transition is very stressful. Know that it will take time - read what you can - keep asking questions and also know that accidental gluten will happen during the early days - heck they can happen to those of us that have been doing this for years.

Take it one step at a time - I promise it will get easier.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 nvsmom

 
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Posted 08 October 2012 - 07:48 PM

My stomachaches improved within a few days but I went through a withdrawal with made me feel tired, cranky, and unwell. It lasted a couple of weeks, perhaps your daughter is feeling some withdrawal too.

Best wishes.
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#9 NikkiP

 
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Posted 09 October 2012 - 01:51 AM

My 18 month old daughter was diagnosed a week ago with celiac. We started her on a gluten free diet immediately. However, a week later she is showing no signs of improvement. She is very lethargic, little appetite, fussy, clingly. She lost weight before we diagnosed her. I'd be surprised if she hasnt lost more:(. I'm so worried about her. Is this normal? How long before you noticed a difference! I've seen so many posts where it seems like improvements are noticed within a few days. How can I be sure there is nothing else going on?


Hi Mary,

I have read in various places, that some celiacs cannot tolerate any starchy type foods and grains for quite a while, until their gut is totally healed. It can appear that they are intolerant of many foods, but this is because the gut needs time to heal, and most starches may need to be avoided in the early stages. See the Specific Carbohydrate Diet books, by Elaine Gottschall (and there's another author) which, I believe, are also gluten free. They may contain helpful info for you in the early days with your daughter, and possibly in the longterm.

Also, have you had her checked for T1 diabetes? Sometimes the conditions co-exist.

I feel for you, and hope things improve soon for you and your baby girl. Don't be afraid of taking her back to the doctor, even if it's just for peace of mind.
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NikkiP

#10 megsybeth

 
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Posted 14 October 2012 - 04:17 AM

Did your daughter have her nutrient levels checked? Maybe she's anemic? Good luck! I'm on my third day gluten-free and having a lot of stomach pains, though I'm being very strict. I think the healing process can be painful for some of us.
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#11 Mary5757

 
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Posted 15 October 2012 - 07:05 PM

I think they checked for anemia...definitely thought no J1 diabetes. She is slowly showing improvement now. She is acting better but still pretty picky with her eating. Hopefully her appetite will come back soon. Although she's always been a finicky eater.
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