Jump to content
  • 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

Trying To Figure Out What - If Anything - My Daughter Can Eat


Nanhosen

Recommended Posts

Nanhosen Newbie

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


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

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.

StephanieL Enthusiast

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.

GFinDC Veteran

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/

Worried mommy Apprentice

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

tarnalberry Community Regular

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.

Denine Newbie

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.


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



Celiac.com Sponsor (A8-M):



  • 4 weeks later...
Nanhosen Newbie

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.

Nanhosen Newbie

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.

Nanhosen Newbie

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!

mushroom Proficient

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.

Nanhosen Newbie

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. Open Original Shared Link

Thanks for the suggestion!

mushroom Proficient

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. Open Original Shared Link

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.