• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
GFmom144

Gluten Free Kid And Still Stomach Pain

Rate this topic

Recommended Posts

I need some help. My daughter has been Gluten free for about 5 years or so we think. About a month or so ago she started having belly pain again. She had her blood work and her numbers for gluten were up. We are re-evaluating everything to make sure she is gluten free and no CC happening. They gave her levsin to take to help the belly pain about a week ago. The medicine does not seem to be helping and now we are having behavior problems. Has anyone else taken Levsin and does it work? Could it be causing the behavior problems? Could she be getting traces and can that cause behavior problems? Any one have any suggestions? My daughter is only 8.

Very confused Mom

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I don't know about the medication.

But yes for sure gluten traces can cause behaviour problems.

You might have to check out the school situation very carefully.

and if you are a gluten eating home...maybe have everyone go gluten free for her sake if you can possibly swing it.

She may also be dairy intolerant...but then that wouldn't make the blood tests show elevated gluten. It would however cause tummy distress.

It's frustrating. You might have to keep a food diary for her and go through all products in the the house.

She is getting it from somewhere.

Share this post


Link to post
Share on other sites

Some celiacs are sensitive to lower levels of gluten than others. More sensitive ones can have problems living in a house with gluten, using gluten containing soaps and toiletries, or even eating processed foods. You may need to make some changes.

Some become more sensitive to lower levels as time goes on.

My son was diagnosed at age 10 and couldn't get better until we made our household gluten free and eliminated almost all processed foods from his diet.

I hope she feels better soon.

Share this post


Link to post
Share on other sites

Could it be something else? My eldest has been gluten-free since December his stool and malabsorption seemed to have resolved but his severe gut pain never did - a biopsy found it was gastritis, the Dr said overproduction of stomach acid leaky gut etc. The medication he was originally on cause psychiatric problems in him and I found out that it was not uncommon. So maybe check the medication she is on?

Or maybe she has become intolerant of something else and is malapsorbing again? Jeez I hate when the kids are the ones affected - its so hard to work it all out.Good luck!

Share this post


Link to post
Share on other sites

Does she eat gluten free oats? Around 10% of celiacs have a problem with gluten free oats also. I am one who does. I also had to eliminate any gluten free products that that might or does have gluten free oat contamination. For me, I believe it caused the same, if not worse, reactions as gluten. I had a repeat scope and biopsy 1 1/2 years after I was diagnosed because I was having such problems. It didn't show any villi blunting that time but it did show a gastric ulcer and inflammation in the esophagus, stomach and small bowel. I really think it was from the oat issue and for me symptoms took awhile to build up since I was fine for the first year. What kind of products do you buy/use?

Share this post


Link to post
Share on other sites
Ads by Google:


I just posted a question on this in the parents category of this forum - my son is also still experiencing stomach aches 2 months after getting off gluten. Is there a period of healing where it would make sense for the stomach to still hurt? It sounds like in your cases, this hasn't been the case. I worry for him and want him to feel better after making this drastic life change. He's not eating oats as we've found them to cause a reaction. Does anyone know if a really high blood result would equate with more sensitivity to gluten.

Thanks

Share this post


Link to post
Share on other sites

I just posted a question on this in the parents category of this forum - my son is also still experiencing stomach aches 2 months after getting off gluten. Is there a period of healing where it would make sense for the stomach to still hurt? It sounds like in your cases, this hasn't been the case. I worry for him and want him to feel better after making this drastic life change. He's not eating oats as we've found them to cause a reaction. Does anyone know if a really high blood result would equate with more sensitivity to gluten.

Thanks

What kind of gluten free products is he eating? If he is sensitive to oats you have to worry about the oat cc in gluten free products. They don't test for this. I had to call companies to find out if there were any gluten free oats used on shared equipment. I definately would avoid Bob's Red Mill products. They get me every time!

Share this post


Link to post
Share on other sites

Yes Roda - he has not a good response to gluten free steel cut oats from Bob's Red Mill. Do you not trust any of their products as far as all the gluten free flours and everything? I have a pantry full of this stuff now. I also use Gluten Free Pantry, and Namaste, and have just tried Bisquick for their pancakes. Mostly Udi's bread.

Any other suggestions for flours and baking goods if not Bob's?

Thanks

Share this post


Link to post
Share on other sites

Yes Roda - he has not a good response to gluten free steel cut oats from Bob's Red Mill. Do you not trust any of their products as far as all the gluten free flours and everything? I have a pantry full of this stuff now. I also use Gluten Free Pantry, and Namaste, and have just tried Bisquick for their pancakes. Mostly Udi's bread.

Any other suggestions for flours and baking goods if not Bob's?

Thanks

Unfortunately I am inclined to say yes to not use any of the Bob's products. After 8 months of miserey last year my GI wanted to put me on steroids. I refused. I did accept a script for creon and took it along with further eliminating stuff from my diet. I had been using BRM products since diagnosis and was fine for a year. I think it slowly built up for me. I had an adverse reaction to BRM gluten free oats 7 months post gluten free but did not give the cc from them any thought until I was facing steroids. I got better and was able to quit the creon last Nov. I bought some baked goods from a dedicated gluten free bakery in Jan. of this year in Downtown Disney. I knew ahead of time they used flour/meals from BRM. I paid for it dearly. The good thing that came out of it is that I confirmed my suspicion.

As for products I do use and haven't had any problems: King Arthur gluten free mixes, Betty Crocker gluten free mixes and Ener G products(I have not called any of these to confirm, but I haven't reacted yet), Udi's bread(we eat all the time) I did contact and here is what they said:

I checked with our bakery and was informed:

At this time the oats are only used on our granola side. We use a separate mixer, we use different ovens, and different sheet pans. Of course anything is possible, but it is very unlikely since it is a separate plant within the plant. We do however store them in the same warehouse (unopened) and there is a common wash area.

So there is very little chance for cross contact but not impossible.

Feel free to contact me if you have any further questions and have an Udiful day,

Declan Galvin

Marketing Coordinator

dgalvin@udisfood.com

Sent: Tuesday, December 21, 2010 3:42 AM

To: Customer Service

Subject: Udi's Contact Form

Message:

Is there any chance your bread could have cross contact with your certified gluten free oats?

I have used Gluten Free Pantry and Namaste in the past but not since last August. You could call and find out though. I will try and contact the three companies that I listed first just in case. For me there is always room for improvement.

I had quite of bit of BRM products to get rid of. I had a few people at work I knew would use some of the stuff so I gave most of it away. The other unopened stuff I donated to the local food bank.

Share this post


Link to post
Share on other sites

Just surprised as I thought they were a better brand. Did you contact them to find out about their methods? (BRM that is) Just curious.

Share this post


Link to post
Share on other sites


Ads by Google:


Just surprised as I thought they were a better brand. Did you contact them to find out about their methods? (BRM that is) Just curious.

Yes I did contact them and they do run the gluten free oats on shared lines. I hope I remember this correctly: they said they have a clean down process between each product run with high powered air. Then they discard the first 20# of the product before packaging. Unfortunately this is still not enough for me. BRM is a great company and offer a lot for people with celiac/gluten intolerence. Unfortunately I'm in the minority with the oat reactions.

Share this post


Link to post
Share on other sites

Sam'sMom, I just e-mailed Ener G, King Arthur, and Betty Crocker. I will post back when I hear something.

Share this post


Link to post
Share on other sites

Hi,

Ive found that along with a gluten sensitivity, I also have a cross reactive type issue with most all other grains, including those most commonly use in all gluten-free products such as millet, quinoa, potato flour/starch and sorghum.

It may be that your son is having issues with some of the other ingredients. My ND had me tested (it's a cross reactive test but I can't recall the lab off-hand so I'll dig it up for you and repost).

You may try eliminating the gluten-free items for a bit and see if that helps. Good luck!!!

Unfortunately I am inclined to say yes to not use any of the Bob's products. After 8 months of miserey last year my GI wanted to put me on steroids. I refused. I did accept a script for creon and took it along with further eliminating stuff from my diet. I had been using BRM products since diagnosis and was fine for a year. I think it slowly built up for me. I had an adverse reaction to BRM gluten free oats 7 months post gluten free but did not give the cc from them any thought until I was facing steroids. I got better and was able to quit the creon last Nov. I bought some baked goods from a dedicated gluten free bakery in Jan. of this year in Downtown Disney. I knew ahead of time they used flour/meals from BRM. I paid for it dearly. The good thing that came out of it is that I confirmed my suspicion.

As for products I do use and haven't had any problems: King Arthur gluten free mixes, Betty Crocker gluten free mixes and Ener G products(I have not called any of these to confirm, but I haven't reacted yet), Udi's bread(we eat all the time) I did contact and here is what they said:

I have used Gluten Free Pantry and Namaste in the past but not since last August. You could call and find out though. I will try and contact the three companies that I listed first just in case. For me there is always room for improvement.

I had quite of bit of BRM products to get rid of. I had a few people at work I knew would use some of the stuff so I gave most of it away. The other unopened stuff I donated to the local food bank.

Share this post


Link to post
Share on other sites

Unfortunately I am inclined to say yes to not use any of the Bob's products. After 8 months of miserey last year my GI wanted to put me on steroids. I refused. I did accept a script for creon and took it along with further eliminating stuff from my diet. I had been using BRM products since diagnosis and was fine for a year. I think it slowly built up for me. I had an adverse reaction to BRM gluten free oats 7 months post gluten free but did not give the cc from them any thought until I was facing steroids. I got better and was able to quit the creon last Nov. I bought some baked goods from a dedicated gluten free bakery in Jan. of this year in Downtown Disney. I knew ahead of time they used flour/meals from BRM. I paid for it dearly. The good thing that came out of it is that I confirmed my suspicion.

As for products I do use and haven't had any problems: King Arthur gluten free mixes, Betty Crocker gluten free mixes and Ener G products(I have not called any of these to confirm, but I haven't reacted yet), Udi's bread(we eat all the time) I did contact and here is what they said:

I have used Gluten Free Pantry and Namaste in the past but not since last August. You could call and find out though. I will try and contact the three companies that I listed first just in case. For me there is always room for improvement.

I had quite of bit of BRM products to get rid of. I had a few people at work I knew would use some of the stuff so I gave most of it away. The other unopened stuff I donated to the local food bank.

I use the Bob's flour all the time I wonder if that is my daughter's problem. I have gone back thru all our products and right now I am only letting my daughter eat food that is made in a dedicated faculity. I am going to switch flours and see if that helps. We are also taking her to a allergist to see if they find anything. Thanks

Share this post


Link to post
Share on other sites

I don't know about the medication.

But yes for sure gluten traces can cause behaviour problems.

You might have to check out the school situation very carefully.

and if you are a gluten eating home...maybe have everyone go gluten free for her sake if you can possibly swing it.

She may also be dairy intolerant...but then that wouldn't make the blood tests show elevated gluten. It would however cause tummy distress.

It's frustrating. You might have to keep a food diary for her and go through all products in the the house.

She is getting it from somewhere.

Thanks, I am going thru everything and only letting her eat things from a dedicated facility. Her behavior has been better this week so maybe it was gluten again. I am also taking her to the allergist to see if she has a food allergy to something. Thanks for the help.

Share this post


Link to post
Share on other sites

Could it be something else? My eldest has been gluten-free since December his stool and malabsorption seemed to have resolved but his severe gut pain never did - a biopsy found it was gastritis, the Dr said overproduction of stomach acid leaky gut etc. The medication he was originally on cause psychiatric problems in him and I found out that it was not uncommon. So maybe check the medication she is on?

Or maybe she has become intolerant of something else and is malapsorbing again? Jeez I hate when the kids are the ones affected - its so hard to work it all out.Good luck!

Thanks She is taking Levsin. Her bahavior has gotten better. So is there any other way to tell if she has gastritis? I am wondering if maybe that is why she is not feeling better.

Share this post


Link to post
Share on other sites

I just wanted to give a quick update. I contacted King Arthur and I was told that there could be a chance of gluten free oat CC. Here is the thread I started on this topic..

Share this post


Link to post
Share on other sites

I am also sensitive to oats, and I also have problems with companies that process glluten free oats on their dedicated gluten free equipment. It eliminates a lot of gluten free companies.

At this point I have become so sensitive that just about any processed food is out, but I noticed problems with oat sharing facilities early on before I got crazy sensitive.

Share this post


Link to post
Share on other sites

I am also sensitive to oats, and I also have problems with companies that process glluten free oats on their dedicated gluten free equipment. It eliminates a lot of gluten free companies.

At this point I have become so sensitive that just about any processed food is out, but I noticed problems with oat sharing facilities early on before I got crazy sensitive.

Thanks - do you mind sharing some of the companies you have found that work for you?

Share this post


Link to post
Share on other sites

Thanks She is taking Levsin. Her bahavior has gotten better. So is there any other way to tell if she has gastritis? I am wondering if maybe that is why she is not feeling better.

It seems to be a very specific pain - like they point right at their belly button - it can get quite severe as well to the point where they can't walk -sometimes its just an ache. There is no real way to tell unless they have a biopsy - but if she has a tummy pain and you give her gaviscon or mylanta or something like that and it resolves - then yes it could be that!

As to the oats. The coeliac society over here says avoid them all - even gluten free. Its not about how they are manufactured in OZ its about how they are grown - most are co grown and stored in the silos with wheat products.

We use brow rice flakes for porridge - I add cut up apple or pear some raisins and some coconut - they get used to it fast - I promise!

Share this post


Link to post
Share on other sites


Ads by Google:


Thanks - do you mind sharing some of the companies you have found that work for you?

I'm sorry, at this point I am off all grains. None worked for me. There is one, Wolff's buckwheat groats, but that isn't a real grain. I am very sensitive.

Share this post


Link to post
Share on other sites

My daughter was diagnosed "probable" celiac when she was 16-17 months old. She definately had improvement until she was about 6 years old. It seemed like the bottom dropped out. It was if she was getting gluten from some where and constant pain. She was dignosed with eosinophilic esophagitus from another endoscopy with biopsy. There is a list of probable suspects for belly pain some of which can be associated with celiac. Keep a food journal and get back to a ped. gastro. for a diagnoses.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,916
    • Total Posts
      943,495
  • Member Statistics

    • Total Members
      67,100
    • Most Online
      3,093

    Newest Member
    Deena
    Joined
  • Popular Now

  • Topics

  • Posts

    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  • Upcoming Events