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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Not Sure What Is Going On........
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12 posts in this topic

My 8 year old son has been gluten free for about 5 weeks since being diagnosed with Celiac. He did not really have any GI symptoms but does have short stature so it is difficult to know how he is actually responding to the diet. For dinner last night he had gluten free meat ravioli and veggies. For dessert he had strawberries and bananas dipped in ghirardelli milk chocolate baking chips that I melted myself and a crystal light flavor packet mixed with water. He woke up at 1:30am this morning screaming that his stomach hurt, he said it felt like a pinching pain. I had him eat a banana and drink some water and he calmed down and went back to sleep. When we woke him up for school he began crying and saying that his stomach still hurt. He has not vomited or had diarrhea so I'm not sure what to do, is it possible he got "glutened" by something?

I had previously called ghirardelli about the chocolate chips and they assured me they were gluten free. My husband gave him the drink at football practice. I asked him if he read the ingredients and he said he hadn't but that he "thought" he remember reading in one of our books that it was gluten free (grrrr). After doing some research this morning it does appear to be gluten free. I'm wondering if the culprit might be the ravioli as this is the first time we have eaten it. We bought it at a local "gluten free" mom and pop shop but had previously tasted it at our city's gluten free food fair. I checked the ingredients are all gluten free so I am stumped.

Based on experience (since I have none) does this sound like he has gotten some gluten or could it be something else? Thanks for the help!

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Could it be the artificial sweetener?

Crystal Light is gluten-free. I believe it has aspartame in it. My son (not celiac)) and I have stomach pains and bloating from that sweetener. Crystal Light has a few flavors called "Pure"" that use Truvia as a sweetener that works for me. Just looking at the package it says gluten-free on the box.

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what did he have earlier in the day? Is it possible lunch or snack could be culprit ?

Also is your cookware gluten free?

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Also is your cookware gluten free?

My first though is what did you strain your ravioli in? If it's a cookware issue, this is the first place I would think. Is your strainer new and gluten-free? They can be really hard to clean.

Hope he's feeling better really soon.

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I have gotten sick from Ghiradelli before. I believe they process on shared equipment with wheat if I recall.

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It is possible he got glutened or something else he ate is bothering him. Since he has never reacted to gluten before it is possible that your kitchen still needs some fine tuning. If you are preparing gluten items for the rest of the family, it is likely that he could become ill from cross contamination. The colander would also be my first guess, but pots, pans, cooking utensils, cutting boards, toasters, can opener, etc. can all be a problem. Often as time gluten free increases the sensitivity to gluten increases - so it is not uncommon for this to happen in the first few months gluten-free.

Is the stomach pain better this morning or the same? If the pain gets better and he just feels crummy it was likely something he ate. Definitely write down everything he ate if you are not already keeping a food journal to compare if this should happen in the future.

If the pain is still severe or sharp stabbing - I'd take him to the doctor to be checked just in case something else is going on - especially if he has never had severe stomach pain before - while gluten could be the problem, I wouldn't want to dismiss sudden severe pain.

Hope he is feeling better very quickly.

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I missed the football practice part the first time. I'm assuming it was a full pads practice. If he is still having stabbing pain today, I would take him to the doc. Tell him he had practice. It is possible he got hit just right and injured something. Not trying to scare you as the odds are against it but, this is similiar to a kid on my son's team. It didn't hurt until later.

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Thank you for your help! We did take him to the doctor because he just wouldn't settle down and she said that it is not uncommon to develop GI symptoms after being on a gluten free diet when you are exposed to gluten. So she said that he either got some gluten or he has a stomach bug that seems to be going around. Time will tell because she said if it was a bug he should have vomiting or diarrhea. He does seem to be feeling better thankfully!

After reading responses I'm thinking maybe it was the colander as we have not purchased a new one. This has actually been a point of contention between me, our nutritionist and my husband. He doesn't understand why we need a new colander even though the nutritionist recommended it. His reasoning is that we all use the same silverware and plates so why should the colander be any different. He was fine with the new toaster and I have even convinced him to buy a George Foreman grill so we don't have to put foil down everytime we cook something for our son on the grill but he is hung up on the colander for some reason. Funny, I know! Anyway, he has lost the battle and I am going to purchase one specifically for the gluten free pasta today.

Thanks again!

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Men....I don't get them ;) A $10 colander, really??? lol

My think with a colander is that if it's a fine mesh one, getting it REALLY clean it hard. Dishes and silver are easy to get really clean. A colander, not so much. We have basically a kosher kitchen for cooking but not eating. We have allergy/gluten free pots, pans, baking racks, serving utensils but our dishes (I feel and DS's tests revel) are a-ok.

I hope he's feeling better no matter the issue. Sick kids aren't fun for Mom either!

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...I agree with all of the above, AND...

We recently bought a pie from a Mom and Pop shop locally which produces certified gluten free pies and quiches. Both of my kids got glutened within 20 minutes of eating the pie. I called the owner who was not particularly helpful or compassionate. She could not convince me that the pie, although labeled correctly, was actually gluten-free. (Note that this Mom and Pop also produces non-gluten-free goods as well).

I called the gluten-free certification organization and THEY were amazing. They told me that this particular shop is newly certified and that they would send secret shoppers and also retest the pies, etc. The incredibly helpful woman also said that the dedicated facilities truly are the most reliable.

As much as I want to support local Mom and Pops, I simply can't expose myself or my kids to the cross contamination which can come along with purchasing goods from a (small) facility which also handles gluten.

Instead, I've been "cross-training" our babysitter in gluten-free baking and cooking...

Thinking of your guy!

Hope he feels better soon!

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I suggest a stainless steel colander...it can theoretically be scoured down if someone puts gluten in it. The fine mesh ones are impossible. I have all new colanders now, and a mesh one, but gluten isn't allowed near it.

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My 8 year old son has been gluten free for about 5 weeks since being diagnosed with Celiac. He did not really have any GI symptoms but does have short stature so it is difficult to know how he is actually responding to the diet. For dinner last night he had gluten free meat ravioli and veggies. For dessert he had strawberries and bananas dipped in ghirardelli milk chocolate baking chips that I melted myself and a crystal light flavor packet mixed with water. He woke up at 1:30am this morning screaming that his stomach hurt, he said it felt like a pinching pain. I had him eat a banana and drink some water and he calmed down and went back to sleep. When we woke him up for school he began crying and saying that his stomach still hurt. He has not vomited or had diarrhea so I'm not sure what to do, is it possible he got "glutened" by something?

I had previously called ghirardelli about the chocolate chips and they assured me they were gluten free. My husband gave him the drink at football practice. I asked him if he read the ingredients and he said he hadn't but that he "thought" he remember reading in one of our books that it was gluten free (grrrr). After doing some research this morning it does appear to be gluten free. I'm wondering if the culprit might be the ravioli as this is the first time we have eaten it. We bought it at a local "gluten free" mom and pop shop but had previously tasted it at our city's gluten free food fair. I checked the ingredients are all gluten free so I am stumped.

Based on experience (since I have none) does this sound like he has gotten some gluten or could it be something else? Thanks for the help!

Probably with signs of GI problems he will have reactions to chocolate and bannanas and things like tomatos (acidic/caffinated/heavy starches). Maybe something like raw fruit fresh cut (store packaged stuff has got gluten even on the lable) but fresh cut with agave nectar (usually easier on tummys than chocolate). Or iced tea. Just brain storming ;)

Hope he feels better :D

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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