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Trying To Figure Out What - If Anything - My Daughter Can Eat
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My 2yo daughter was diagnosed via endoscopy about a month ago, and we immediately started a gluten-free diet with her. Unfortunately, there has been little, if any, improvement. After consulting with her GI doctor, we put her on an antibiotic to treat SIBO, but it didn't make any difference. The GI dr's next recommmendation is to cut sugar out of her diet, and see if that helps. So, here is my main question:

1. Has anybody here seen a dramatic difference after cutting out sugar? If so, how strict were you about sugar. For example, did you eat fruit?

After doing a bit of research (and reading WAY too many webpages full of unsubstantianted claims) I am becoming totally overwhelmed. The more I read, the more it seems like virturally every food out there is problematic! She's already dairy free, but from what I read, even non-gluten containing grains, like corn and quinoa can cause problems for celiacs. I'm considering putting her on a paleo diet for a few weeks, and see if there is any improvement. I'm wondering if anybody has had any success with paleo diets?

Thanks!!

Nanette

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As of right now, i'd stick with a whole foods diet. Nothing that has been packaged and processed (such as chex cereal).

Do not assume that what some celiacs go through is what all do. A lot of us can handle corn and quinoa just fine, while a smaller majority cannot. What you read on the 'net can drive you mad.

Its only been a month. It can take up to two years for any damage to heal.

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My DS was gluten free for 3 months with no real improvement. I put him on a really good probiotic and within 3 day he had the first normal 1poops of his 3.5 years.

Maybe try a probiotic?? Good luck. It's so tough to figure things out.

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Hi Nanette,

Sometimes the damage to the gut can lead to an overgrowth of bacteria, which produce gas and discomfort. When the gut is already damaged, blowing it up like a balloon can hurt. So why avoid sugar? Because sugar and starches are bacteria fuel and lead to lots of bacterial growth and gut inflation. Starches are just as bad as sugar usually, as they are converted to sugars in the gut. Also with a damaged gut, the enzymes needed to digest and breakdown the sugars may not be produced, and that means they are all bacteria food.

You will see a wide range of food intolerances listed on this forum. We all have our body, and our bodies react to foods that they react to. We all don't have the same food intolerances, they vary by person. Except for gluten of course.

The best way to start gluten-free is to eat whole foods that are made from scratch at home. Dairy is often a problem as the villi damage prevents the production of lactase enzyme that digests dairy sugar (lactose). That lactose intolerance sometimes goes away after some months of healing go by. A simple diet of simple whole foods is easiest to understand and troubleshoot. Lots of processed foods have 7 or more ingredients and that is just one package of food. Multiply that by however many processed foods she would eat in a day and you can see t gets complicated quickly trying to pin point one problem food or ingredient. A food and symptom diary is also helpful to detect problem foods.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

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Just out of curiosity how was your daughter tested for SIBO. I might want my daughter tested too.

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Honestly, I'd be cautious going to a paleo diet. Certainly a full one. Kids, more so the younger they are, need more carbohydrates than adults do. At two years old, her digestive system is still maturing, and she needs more foods that are more easily directly converted to energy.

I would certainly focus on making sure cross-contamination is not a problem. This includes:

- checking on play-doh in preschool (most commercial and homemade recipes contain wheat) or other things (pasta in a sensory table, etc.)

- eliminating shared toasters, cutting boards, or colanders used for pasta

- for now, eliminating commercial, prepackaged foods as much as possible

- cross contamination from friends/family during playdates and get togethers

Eliminating dairy is a good start, but if you've replaced cow milk with soy, that could be causing trouble. A probiotic can be a good idea too (and Nature's Way, iirc, has a pretty good powdered kids one that we like to use). And maybe cutting out added sugar would be good as well.

But be cautious about cutting out *all* sources of easily processed carbohydrates.

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I am in the same boat. My 10 yo daughter was just diagnosed 2 weeks ago. Her main symptom was extreme abdominal pain. She has been gluten-free for 2 weeks, Dairy and soy free for 1 week since we found out she was intolerant to those as well. Her pain has not changed at all. It is still a 9 out of 10 on the pain scale. I put her on a very bland diet as of Friday. Still no change, but I hope something will help soon. I have her on a probiotic, but I have no idea if it is helping. I know she most likely has a few years worth of damage to her gut, so it will take time. It is just so hard seeing her in this much pain all the time. It has been over 9 weeks of this pain.

I am extremely careful about cross contamination. I read labels like they are on the best seller list, LOL! I cook from scratch.

I hope you find answers soon.

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Just out of curiosity how was your daughter tested for SIBO. I might want my daughter tested too.

She wasn't tested for it; I don't know if there's a test? Her GI doctor had her take 2 different antibiotics to see if they cleared up the problem, which they didn't. From what he told me, if the antibiotic had worked, then we could assume that SIBO was the problem.

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Thanks so much everybody for your input! She recently was on a round of Alinea, an antibiotic. While she was on it she started having regular stool, but then as soon as she was done with the 3 days, her stool went back to it's mucousy nastiness. She's now scheduled to have a colonoscopy in a few weeks to see if she might have ulcerative colitis.

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I am in the same boat. My 10 yo daughter was just diagnosed 2 weeks ago. Her main symptom was extreme abdominal pain. She has been gluten-free for 2 weeks, Dairy and soy free for 1 week since we found out she was intolerant to those as well. Her pain has not changed at all. It is still a 9 out of 10 on the pain scale. I put her on a very bland diet as of Friday. Still no change, but I hope something will help soon. I have her on a probiotic, but I have no idea if it is helping. I know she most likely has a few years worth of damage to her gut, so it will take time. It is just so hard seeing her in this much pain all the time. It has been over 9 weeks of this pain.

I am extremely careful about cross contamination. I read labels like they are on the best seller list, LOL! I cook from scratch.

I hope you find answers soon.

Oh, I so agree about watching the pain. It is so frustrating for me to see my daughter in so much pain, and not have a real solution! Good luck with everything!

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If she has been on two courses of antibiotics she probably needs some good probiotics to restore the good flora in her gut.  You can get them in powder form for children.

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If she has been on two courses of antibiotics she probably needs some good probiotics to restore the good flora in her gut.  You can get them in powder form for children.

Mushroom, that's funny; I was just researching probiotics. I found this article to be pretty interesting for recommending which types of strands might be beneficial. http://www.parents.com/toddlers-preschoolers/feeding/healthy-eating/probiotics-the-friendly-bacteria/?page=4

Thanks for the suggestion!

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Mushroom, that's funny; I was just researching probiotics. I found this article to be pretty interesting for recommending which types of strands might be beneficial. http://www.parents.com/toddlers-preschoolers/feeding/healthy-eating/probiotics-the-friendly-bacteria/?page=4

Thanks for the suggestion!

 

:)

 

I personally have taken VSL#3 and highly recommend it (although it is expensive).  I took it in its powdered form but I don't think it makes much difference.  Other posters have also recommended Align.  I hope it makes a difference for your daughter and that she is soon feeling better.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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