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

New diagnosis for kiddo


Idaho mom

Recommended Posts

Idaho mom Newbie

Hi all.  I am new to this but was hoping I could reach out for some suggestions.  My 9 year old has just been diagnosed with non celiac and we are 3 weeks into this lifestyle change.  It is a challenge for our family to say the least but one I am truly hoping will lead to no more stomachaches, vomiting, headaches, fatigue, emotional roller coaster rides, etc etc.  Can any of you tell me the best apps or sites to determine what foods/ingredients are gluten free?  I think that is my biggest struggle right now - the words "spices" and "artificial or natural flavoring".  Also, can someone point me to good sites for kid and family friendly recipes that also taste good?  Thank you all for any help and support as we journey down this path.


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

"Spices" allows for a long list of possible things, but none of them are grains, so no gluten in that ingredient. Flavoring rarely contains gluten. By law, wheat would have to be disclosed. Barley malt is expensive, so the manufacturer will boast of it rather than hide it.

tessa25 Rising Star

Here's a list of my favorites so far:

Note: insert the words "gluten free" in every item mentioned as some of the companies also sell non gluten free stuff. It's tedious to write that phrase all the time.

Get a chest freezer to store all of your frozen gluten-free foods. Makes things easier.

Bread: Canyon bakehouse without question is the most realistic tasting bread.
  Schar comes in a close second.
    Canyon bakehouse plain bagels are practically indistinguishable from regular bagels.
    Canyon bakehouse white bread makes fantastic toast. It has a very slight
                 sweet taste to it. My friend says it tastes like normal bread. The
                 only difference to me is the sweetness.
    Canyon bakehouse deli rye is great if you like rye bread sandwiches. Toasted is best.
    Canyon bakehouse multigrain tastes exactly like multigrain bread and does not need
                 to be toasted.
    Schar baguettes are fantastic.
    Katz makes an English muffin that, after toasted, reminds me of a real one provided
                 it has stuff on it like butter. I think that's the brand.
    Etalia has a good boule (sp?) if you prefer artisan bread.

Pizza crust:
    Shar makes a good thick and chewy crust.
    Udis makes a good thin and crispy crust.
    Etalia makes a great New York crust.

Pasta:
    Barilla makes the only good pasta that I know of. Spaghetti cooks the best.
    RP has a frozen pasta that I'm going to try next.

Flour:
    Pamelas all-purpose flour is great for making gravy and batter for fried foods.

Cereal:
    Envirokidz Gorilla Munch cereal is an equivalent to corn Pops.

Cookies:
    Glutino and Kinnikinnik make a decent Oreo equivalent.
    Mi Del makes a great ginger snap.
    Goodie Girl mint slims - fantastic girl scout mint cookie equivalent

Cake:
    Betty Crocker chocolate cake tastes the same, but you have to get the time
                exactly right. It is a very small window of time. Too long and it's too dry.

Frozen meals:
    Udi's Chicken Florentine is addictive and Broccoli Kale lasagna is a good white lasagna.

Restaurants (not from personal experience, just from research)
    Chinese – PF Changs. Employees are supposedly trained in gluten free.
    Burgers – In N Out. The only thing here that is not gluten free are the
                buns so it is very easy for them to do gluten free. They are
                also trained in it. They are only out west. Road Trip!
    Outback steakhouse. Employees are supposedly trained in gluten free. How
                good they are depends on where you live.

 

kareng Grand Master
1 hour ago, Idaho mom said:

Hi all.  I am new to this but was hoping I could reach out for some suggestions.  My 9 year old has just been diagnosed with non celiac and we are 3 weeks into this lifestyle change.  It is a challenge for our family to say the least but one I am truly hoping will lead to no more stomachaches, vomiting, headaches, fatigue, emotional roller coaster rides, etc etc.  Can any of you tell me the best apps or sites to determine what foods/ingredients are gluten free?  I think that is my biggest struggle right now - the words "spices" and "artificial or natural flavoring".  Also, can someone point me to good sites for kid and family friendly recipes that also taste good?  Thank you all for any help and support as we journey down this path.

I agree with what Peter said.  Also, because he doesn't  actually have Celiac, you may not need to be as extremely careful as a Celiac.  That will make life much easier, especially when eating out or at parties, etc.

Idaho mom Newbie

Thank you all so much for the help!  And yes, we are very lucky that she does not have to worry as much about cross contamination as if she had celiac.  Although I was shocked as to how sick she became the other day after eating a snow cone of all things!  The gal did not think the syrup had gluten but within a half hour of eating it, my daughter had a severe stomachache with a headache followed by fatigue and crying off/on the rest of the day.  We are also only a few weeks into this and understand the first few weeks to months of being gluten free can be hard as the body essentially is cleansed of gluten and heals.  Anyway, Thank you all again for the advice and support!  The information is wonderful!

kareng Grand Master
20 minutes ago, Idaho mom said:

Thank you all so much for the help!  And yes, we are very lucky that she does not have to worry as much about cross contamination as if she had celiac.  Although I was shocked as to how sick she became the other day after eating a snow cone of all things!  The gal did not think the syrup had gluten but within a half hour of eating it, my daughter had a severe stomachache with a headache followed by fatigue and crying off/on the rest of the day.  We are also only a few weeks into this and understand the first few weeks to months of being gluten free can be hard as the body essentially is cleansed of gluten and heals.  Anyway, Thank you all again for the advice and support!  The information is wonderful!

There likely was no gluten in the snocone.  But you might want to figure outj why she is  NCGI.  Maybe it's FODMAPS? Wheat is a high FODMAP food, but I think the snow cone is, too.  

You don't store gluten, so you aren't cleansing yourself of it.  Healing from Celiac damage does take time.  Depending on why you think she is NCGI, she may not need much time to heal.  It may just be a matter of getting her GI system regulated and working with the new normal diet

Victoria1234 Experienced

King Arthur makes my favorite gluten-free chocolate cake :)

do not try the store brand Walmart version of gluten-free Oreo style cookies... they are awful.

Have you read the noob section yet? Has some great info on how to buy things and organizing the kitchen, and what to get rid of. 

Welcome!


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



Celiac.com Sponsor (A8-M):



Idaho mom Newbie

Kareng, you bring up an interesting question.  She sees a pediatric GI who diagnosed her with NCGI.  She tested negative on blood work and biopsy was negative 3 years ago.  She continued struggling with stomaches, vomiting, headaches, emotional behavior, fatigue or hyperactivity, constipation, etc.  he thought for sure she was celiac 3 years ago but tested negative.  When we returned for a follow up as the symptoms were increasing, he diagnosed the NCGI.  I do have to say besides the snow cone incident, she has felt better the last 3 weeks than in a long time.  Should I be looking for a second opinion?  I just want her to feel better.

Jmg Mentor

Hello :)

I also tested negative after being convinced it would be positive. If you're interested in learning more about NCGS I collected a few links here.

One thing I wanted to comment on is the idea that NCGS means you don't have to be as careful about slipping from the diet. My own experience is that very small amounts of cross contamination can cause symptoms to return. Mostly neuro rather than GI. Of course others may have different experiences, this condition is not yet fully understood. However this is what one of the leading researchers Umberto Volta says:

Quote

In my opinion, patients with non-celiac gluten sensitivity cannot tolerate gluten and cannot reintroduce gluten in their alimentation. Another important point is that of the small amounts of gluten for these patients represented by contamination in consuming food outside the home, probably, the majority of these patients do not tolerate small amounts of gluten presented by contamination. So, the situation is similar to those with celiac disease, probably not for the possibility of complications or major complications. But, because small amounts of gluten are able to cause the reappearance of symptoms.

The good news is all my symptoms resolve on the diet. Hopefully that will also be the case for your daughter too. You will both find things get easier as you get more used to the diet, better at reading labels and more comfortable with the 'safe' brands you get to know and trust. It will get easier for you both, just may be rough at the outset. 

Best of luck!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    2. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    3. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    4. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    5. - Wheatwacked replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    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
      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
    • Theresa2407
      Usually when I digest gluten or wheat I have a 4 hour window before reacting.  If it is immediate it may be an intollerence to another food.  Dairy, Frutose, and bacteria (SIBO) will react with many of the celiac disease symtoms.Has your Doctor ran a  Fructose test which is measuring your Fruit Sugar?  A Hydrogen Beath Test which checks your intestinal bacteria and Dairy?After my biopsy and blood work, these (3) tests were also ran, along with allergy tests, which allery test was sent out of State.  It was a mouth swab. How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works!  This is what I have found will work for you.                                                                                            First 6 weeks should be:                                                                                                                                 lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer)                                                   fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup)                                                                                                                                      fresh fruit (3 servings; include strawberries, blackberries and blueberries daily)  Makes good shakes with Almond milk.                                                                                                                                        A hand full of almonds daily (pecans and walnuts can be substituted)                                                        brown rice, lentils, Citrucel daily (or the equivalent) Good source of fiber. I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. First 6 weeks should be: lean meat (beef, pork, chicken, turkey, salmon, sardines, buffalo, deer) fresh vegetables (steamed or roasted with a little Olive Oil) with 2 cups per day being raw (5 servings; a serving is 1/2 cup) fresh fruit (3 servings; include strawberries, blackberries and blueberries daily) a hand full of almonds daily (pecans and walnuts can be substituted) brown rice lentils Citrucel daily (or the equivalent) Good source of fiber. No dairy of any kind (milk, cheese, yogurt) No breads No pasta No oats No pizza No gluten-free beer No snacks like cake, biscuits, pies, donuts. Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us. 10% of people with gluten-free will be intolerant to dairy 10% can not tolerate oats After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food. Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
    • Wheatwacked
      Marsh 3b is the Gold Standard of diagnosis for Celiac Disease.  Until recently, regardless of antibody tests, positive or negative, you had to have Marsh 3 damage to be awarded the diagnosis of Celiac. As I understand you,  you were having constant symptoms..  Your symptoms improved on GFD, with occassional flare ups. Did your doctor say you do and you are questioning the diagnosis? Regarding your increasing severity when you get glutened it is "normal".  Gluten acts on the Opiod receptors to numb your body.  Some report withdrawal symptoms on GFD.  I was an alcoholic for 30 years, about 1/2 pint of voda a day. Each time I identified a trigger and dealt with it, a new trigger would pop up.  Even a 30 day rehab stint, with a low fat diet (severe pancreatis) during which I rarely had cravings.  Stopped at a Wendys on the way home and the next day I was drinking again.  20 years later, sick as a dog, bedridden on Thanksgiving, after months of reasearch, I realized that gluten free was my Hail Mary.  Back in 1976 my son was diagnosed at weaning by biopsy with Celiac Disease and his doctor suggested my wife and I should also be gluten free because it is genetic.  At 25 years old I felt no gastro problems and promised if I ever did I would try gluten free.  Well, I forgot that promise until I was 63 and my wife 10 years dead.  Three days of gluten and alcohol free, I could no longer tolerate alcohol. Eleven years gluten and alcohol free, with no regrets. Improvement was quick, but always two steps forward and one back.  Over time I found nineteen symptoms that I had been living with for my entire life, that doctors had said, "We don't know why, but that is normal for some people". Celiac Disease causes multiple vitamin and mineral deficiency.  It is an autoimmune disease, meaning your immune system B and T cells create antibodies against ttg(2) in the small intestine in Celiac Disease, and sometimes ttg(3) in skin in Dermatitis Herpetiformus.  'Why' is poorly understood.  In fact, it wasn't even known that wheat, barley and rye gluten was the cause.  Celiac Disease was also called Infantilism, because it was deadly, and believed to only be a childhood disease. So, as part of your recovery you must deal with those deficiencies.  Especially vitamin D because it contols your immune system.  Virtually all newly diagnosed Celiacs have vitamin D deficiency.  There are about 30 vitamin and minerals that are absorbed in the small intestine.  With Marsh 3 damage you may be eating the amount everyone else does, but you are not absorbing them into your system, so you will display symptoms of their deficiency.   As time passes and you replenish your deficiencies you may notice other symptoms improve, some you did not even know were symptoms. Our western diet has many deficiencies built into it.   That is the reason foods with gluten are fortified.  Gluten free processed food are not required to fortify.  Vitamin D, Iodine, choline.  The B vitamins, especially Thiamine (B1) run deficient quickly.  We only store enough thiamine for 2 weeks so the symptoms of Gastrointestinal BeriBeri can come and go quickly.  Magnesium, zinc, etc. each having its own symptoms affecting multiple systems.  High homocystene, an indicator of vascular inflamation can be cause by deficient Choline, folate, B6 and or B12.  Brain fog symptoms by deficient choline, iodine, thiamine B1. Dietary intake of choline and phosphatidylcholine and risk of type 2 diabetes in men: The Kuopio Ischaemic Heart Disease Risk Factor Study  
×
×
  • 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.