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.

Try Gluten Again?
0

8 posts in this topic

I need some opinions here please...

First some history....

My husbands sister was diagnosed with celiac in the late 70s. My 12 year old daughter was having stomach problems last year. We went to a pedi gastro. They were basically of no help. We had a celiac panel that had one number slightly above range and an endoscopy which showed an ulcer at the opening to her duodenum but nothing else. After several more weeks of stomach pain we put her on a gluten-free diet

and within 2 weeks her stomach pains went away. After she went gluten-free we had

a few slip ups. Each time she had severe reaction to the gluten (throwing up, diarehea, head aches and stomach pain). She was never formally diagnosed with

celiac

After being gluten-free for the better part of a year, she decided to eat chicken nuggets

at school (when I was not around). These were not heavily crusted but did have some coating on them. She didn't get sick from them. Then last week we goofed and she ate part of a flour taco shell from a taco salad and didn't get a reaction.

She now wants to eat gluten.

I know that you don't always have stomach issues with celiac....and that if she

truly has celiac she should never have gluten again whether she has stomach pain or not.

Question....

Have any of you had stomach (intestinal) pain when you (with a confirmed diagnosis of celiac) slip up and then suddenly no longer have stomach pain when you slip up. I guess what I am wondering is...could she merely have had a gluten allergy that she has out grown or could this still be celiac, however it just doesn't cause stomach pain any longer?

thanks!

0

Share this post


Link to post
Share on other sites


Ads by Google:

It could be either. It could have been somethind else going on at the time, it could be gluten intolerance, it could be celiac. On that alone, you can't tell. It's tricky when you don't have definitive diagnostics AND you don't seem to react to gluten in the diet. I probably would end up trying out gluten for a while (say, two weeks) then withdraw it again to see if there's any difference and if there wasn't, continue the gluten with yearly blood panels, but I am NOT suggesting that YOU do that. I'm leaving no suggestions because it's such a personal decision, and the ramifications for feeding her gluten if she is celiac are serious. (Of course, this exact same situation exists for all undiagnosed, asymptomatic celiacs.) Is it possible that the ulcer was the primary suspect in the symptoms?

Maybe finding a doctor well versed in celiac disease would help, but - on average - I would imagine that most celiacs would err on the side of caution, and those who aren't would err the other way. It's a tough place to be in. I hope you guys can find your answer!

0

Share this post


Link to post
Share on other sites

Thanks,

For the first 8-9 months of being gluten free she did have severe reactions when she had a slip. Stomach aches, head aches,,,,really felt crummy for at least 2 days after eating it.

Her aunt (now deceased) used to eat gluten but in small amounts because she didn't have pain from it. I don't think the dr. (or she) realized at the time the other ramifications of eating small amounts.

My biggest fear is that my daughter does have celiac but just isn't reacting the same way that she used to with it and that if she does eat gluten now it's going

to cause big problems later.

I think the best bet is to find a dr. that actually knows something about this disease. That can be hard to do. Most I've talked with seem to continue to think it's rare and know so little about it.

Thanks for your help.

Tiki

0

Share this post


Link to post
Share on other sites

Did your daughter hit puberty during the time she was gluten-free? Some people suddenly go asymptomatic when they hit puberty. I've never seen any studies as to whether there's actual damage going on during this time if they're eating gluten. Some can eat gluten for years with no obvious reaction, but many return to their previous celiac pronblems eventually.

richard

0

Share this post


Link to post
Share on other sites

Richard has a very good, important, point! I had forgotten her age when responding - but the reduction in symptoms during adolescence is not uncommon, and needs to be considered as well.

0

Share this post


Link to post
Share on other sites




Wow, I had never thought of that.

She started having strong symtoms when she was 11. I think it was because she

started intense training for soccer. This was towards the beginning of her adolecense....we're not quite thru it yet. I think she probably had mild symtoms

for years....just nothing bad enough to really worry about.

I've just found it strange that 4 months ago if she got a trace of gluten she was sick for 2 days and now it seems she can eat small amounts with no reaction.

That might be it.....also might explain some of the things with my husband.

I think he has it too. I'm still working on getting him tested. He was quite short in high school. He grew about 6 inches his senior year. Is that something that would

be common with this?? Celiac taking a rest for a few years???

0

Share this post


Link to post
Share on other sites

I've read that people with celiac disease and gluten intolerance go through a cycle. For a while we become ever more sensitive to any trace of gluten then it starts to ease up. I'm not positive about the time frame for all, but for me and my kids it seems to be up to 6 months we were ultra sensitive. I'd get a migraine with half an hour after eating a crumb or less; my daughter would be so sick to her stomach she'd be vomiting. Now, at 9 months, I still get a headache, but not for an hour or so and it doesn't seem to become a migraine anymore. I'm so happy! My daughter no longer vomits, but she still has an upset stomach for a couple days.

How long has your daughter been off gluten? She could just be past this stage. The unfortunate thing is, she may be able to eat gluten without the intense reactions anymore, but she is doing damage to herself. My children only had borderline IgG results, but had such intense positive reactions to the diet and since my father also had celiac disease (as do I) that I won't let them even consider eating gluten again. If I can prevent them from having full celiacs, developing other autoimmune diseases, having brain/nerve damage, etc., I will be quite satisfied with our decision even if it is inconvenient (nice understatement, huh? B)). Would you wait for a heart attack before controlling your cholestrol? (My father died from complications caused by untreated celiac disease.)

Were you ever tested? I think, considering the age of your daughter (and how stubborn teenagers naturally are...my eldest is 15 <_< ) you might want to get yourself and her tested through Enterolabs. You would be able to see if the both of you have the gene and if you have asymptomatic celiac disease. Maybe by having family support, she would be more agreeable to staying on the diet.

0

Share this post


Link to post
Share on other sites

She has been gluten-free since October 2003 with just a few slip ups.

If she would of had a firm diagnosis I wouldn't even consider thinking about

letting her eat gluten. I understand the damage that it can cause even

if she doesn't have symptoms. Basically I diagnosed my daughter

so I guess it had me ( and her) doubting just a little bit.

Celiac runs on my husbands side. His sister had a diagnoses in the 70s.

I think he has it too. He had a lot of the same health history that my daughter

has....threw up a lot as a baby. He had diarehea...she had constipation. He's had

elevated liver count....and has not felt good for about the last 18 years!!!!!

We have a enterolab test sitting at home for him to take. It arrived last week.

Hopefully he will take it soon and we will have some answers on him.

I should probably have her gene tested too.

thanks!

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
      103,371
    • Total Posts
      917,538
  • Topics

  • Posts

    • Newbie: mother to coeliac kids
      Are there any foods, like broth, that don't make your son feel sick?
    • Newbie Mom - How is my son feeling?
      I agree. As an adult its a little easier to withstand the rolling of eyes and exaggerated sighs from people who think you are over reacting and being too fussy.  My youngest has anaphylaxis to fish and seafood and people are incredibly understanding and careful - but it seems celiacs has become a "fad" due to gluten intolerant people removing credibility from true celiacs.  Adults can argue but kids are vulnerable. Socially its really isolating for them.    I totally relate to the waiting on endoscopy. For my very sick 12 year old the 8-9 weeks we waited for sheer hell and I felt I was feeding him rat poison. Now my 17 year old is waiting on his, booked for later this week.  Its a total nightmare waiting knowing you can start the healing if only you could stop feeding them gluten.  But I figure for future reference, having a solid diagnosis via biopsy is important. Good luck to you and your son.
    • Newbie Mom - How is my son feeling?
      Hugs to you and your daughter. My son and I are in the same boat, or at least,  paddling alongside your boat.  At their age being scrupulous about their diet is not only incredibly hard but socially isolating. Adults consider celiac people to be a pain so imagine what their young friends think.  Feeling so unwell and having no energy adds to their distress. And the thing is - I don't think at that age that they really understand that even the slightest bit of gluten will set them back badly.  I know my son is convinced one sweet won't matter. It really really sucks.  
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      No one in my wider family gets it, although my sister is certainly trying to understand. She gets that I will bring all food for my coeliac kids when we come for meals and is okay with that.    For other social events, I will suggest the meal is at my place so I can control the gluten.  But my biggest battle is my children's father (my ex husband) who refuses to get it, and thinks I am being stupid and trying to prevent him seeing V.  I have offered that V can visit but not eat nor stay the night.  Ex does not have the means or the brains to manage gluten free meals.    At this point it looks like I may need to go to court to get an order to prevent V from being forced to go and get glutened. I really really hope to avoid this, but its not looking good. 
    • celiac disease is psychosomatic
      I guess it's the "natural flavoring" which throws me off. It could or could not contain gluten and it's in so many products. I haven't been on a gluten-diet for as long as you...6 years. I may have bee undiagnosed and untreated for more than 25 years since i had signs that went back to chidhood. Yes, I have balance/anxiety/neuro issues. I know anxiety is connected to damage in intestines, but I don't know for sure if celiac causes balance/neuro issues. I was already tested for brain ataxia, but I didn't get too far on that. Well, there wasn't an exact test, but the neurologist noted that I was walking straight or something on those grounds so I must not have it. I know studies have shown Transglutaminase 6 antibodies indicate gluten ataxia, butthat test is not yet available to the public.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • 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
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,517
    • Most Online
      1,763

    Newest Member
    Musiclvr
    Joined