Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 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.

Gluten Free Kid And Still Stomach Pain
0

22 posts in this topic

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

0

Share this post


Link to post
Share on other sites


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.

0

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.

0

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!

0

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?

0

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

0

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!

0

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

0

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.

0

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.

0

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.

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.

0

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.

0

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.

0

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

0

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.

0

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.

0

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..

0

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.

0

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?

0

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!

0

Share this post


Link to post
Share on other sites

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.

0

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.

0

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
      103,344
    • Total Posts
      917,398
  • Topics

  • Posts

    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
      Oh, you might learn how to tell if you had been glutened.  I just had anemia as my main symptom.  I did not have any tummy issues at all.  I was in shock when my doctor even suggested testing me for celiac disease!   Glutenings can vary as we are all different.  For some it is just a few days, others a few weeks and others months (that would be me).  My last official glutening as supported by follow-up antibody testing lasted for three months.  Guess what?  I had vomiting, abdominal pain, the works!  Funny how celiac disease can change and evolve over time.   Welcome to the forum!  Have some patience and learn all that you can.  The good news is that you can feel better and no medications are required!  
    • Confused
      Thank you for the information. I've been not sure if I should eat gluten or not right now. Dr. said I should watch what I eat when I emailed him the question. My symptoms aren't very bad (I understand that doesn't matter for celiac disease), so I can definitley tolerate the food. But I have been starving myself the last few days due to not knowing what the heck is going on. Thanks again.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined