• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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.

Testing In 5 Year Old Who Is Gluten-Lite?
0

6 posts in this topic

So, I got my celiac diagnosis a year ago, my 8.5 year old has been gluten-free 6 months and just had her follow up- her ttg in normal range (was 80) and she is now EMA negative (was positive 6 months ago). Her vitamin D also doubled and she appears to be absorbing perfectly now- I took my 5 year old along to the appt because he is having tummy aches, he complains his waist hurts-- He just had his well checkup with pediatrician, urine was normal, nothing out of the ordinary when examining his belly, she felt it was just a constipation issue- since we are gluten free home, he does struggle with pooping regularly. We are working on fiber.

He had a ttg test only, a year ago when my daughter was tested-- he was normal, but this GI says let's go ahead and test him now---- he says the amount of gluten he is eating is plenty for testing-- he eats snack at school twice a week, at home has macaroni a few times a week, maybe 1-2 times a week, breaded chicken when we are on the go. Cheerios at home, but they don't really have gluten in them- just contamination risk. He eats normal food at events, whatever but I hesitate to say he is eating it super regularly. He said the lab order is good for 30 days (3 weeks now left to get labs done). Is it worth it to load him up over the next 3 weeks and how would I do that with no bread in the house, just do cereal, regular pretzels, etc daily maybe???

What do you all think?

I really want to rule this out, the genetics are not on his side!

0

Share this post


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


My son eats some gluten every day, but not much at all. We took him off of gluten altogether for 2 weeks over Christmas just to see how he would respond. His total demeanor changed, no more belly aches, much happier.... We decided to take him to the dr after seeing the results. We had bloodwork done and his ttg iga came back 25 (20-30 weak positive). We had repeat bloodwork done 2 1/2 weeks later after boosting his gluten intake (it was supposed to be 3 weeks later,  but he lost 4 pounds in the 2 1/2 weeks and I freaked out :unsure: ). The results of the second test was 37 (>30 moderate to strong positive). I know it isn't much of a jump, but still enough to see a difference in a short period of time.... The rest of the panel came back negative, but we are booked for the scope and biopsy for next Wednesday....

0

Share this post


Link to post
Share on other sites

I think that's what I'll try- it varies and some days he has a lot- today they had pretzels for snack at school and it was a birthday so also had cookies- and then breaded chicken when out this afternoon. Maybe I will wait and do it in 3 weeks

The reason I wonder if it is enough time in a child that is already eating gluten, is that the reverse happened in my 8 year old- we had tested her because of me, she came back with ttg of 80, but went on to have a normal biopsy-- when I decided to make the house gluten free for my own benefit, I decided after 2 weeks I should get her tested further- with EMA and vitwmins, etc, got a 2nd opinion from a ped GI-- from going normal diet to gluten free at home, in only 2 weeks, her ttg dropped in half.

0

Share this post


Link to post
Share on other sites

If he's eating some gluten, and by the sounds of it it isn't that light, I would add a bit more gluten for a few weeks (as long as it's not affecting his health too much) and then do the blood test.

 

If his blood tests are at all questionable, or he continues to have symptoms, I would make his diet gluten-free. since you and your daughter are already eating gluten-free, it should be a fairly easy transition for you all. 

 

My kids all tested negative but had symptoms so I made them all gluten-free rather than wait and risk gluten turning into a health issue for them.  Two of the kids are shown health improvements and my third is just along for the ride.  ;) I mention this just to point out that he could have a false negative test or be non-celiac gluten intolerant, in which case the treatment is still to eat gluten-free.

 

Best wishes

0

Share this post


Link to post
Share on other sites

Yes, I am prepared for that- the testing process is a pain :) my 8 year old tested + on her labs (including EMA) but not a speck of damage found on biopsy (with proper 7-8 samples done), not even increased cells. Because she had some vitamin losses and her symptoms resolved (joint pain), her GI doc says he is 100% certaun the damage was THERE, just a patch that was not biopsied. I should add, she was only tested due to my diagnosis- her joint pain wasn't a thought until I knew she was + but lo and behold, NO joint pain in 6 months now.

I will push the gluten next couple weeks and test- and hope for a conclusive answer one way or another. He has daily tummy pain (he calls it his waist), but the ped and GI both assure me it's related to not pooping daily- lab results aside, we are working with more fiber, etc to try to remedy that issue.

0

Share this post


Link to post
Share on other sites
Ads by Google:


I never had "D" before I was diagnosed, it was always "C" with me too. I would go a few days without a bathroom visit, and it did get uncomfortable, but the pain from being gluten was very different for me... It was the pain I associated with getting after every meal.

 

Best wishes.

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
      106,808
    • Total Posts
      932,595
  • Member Statistics

    • Total Members
      64,302
    • Most Online
      3,093

    Newest Member
    AnLi
    Joined
  • Popular Now

  • Topics

  • Posts

    • Update: for most accurate results, I am eating one piece of white wheat bread a day and am hating the symptoms. Less than two weeks until the endoscopy so I'm hanging in there.
    • Gaerty, I am glad to hear that you've ruled out the worst stuff. That at least helps clear any anxiety or worry you might have. I know that would clear up mine. I have good news! About three days ago my splinter hemorrhages cleared up 100%! The one that was on my right thumb was long and was there for about 2 to 3 months. I started taking this Vitamin C supplement 1000 mg once a day about 3 weeks ago. Whats crazy is that on the day I started the Vitamin C I noticed a small hemorrhage cropping up on my left thumb. It was very small. By day 7 of taking the vitamin C the one on the left thumb started growing out. By the second week I noticed the one on the right thumb shrunk drastically and by the end of week 3 they were all gone. By day 10 I also started taking 25mg of iron because all my muscles keep twitching. My B's and Magnesium came back good 5 months ago. I heard low iron can cause that symptom as well. So thought I'd give it a try.  I am not sure if it was a combo of the C and Iron or just the C that helped clear the splinter hemorrhages but for sure it was one of those things because they are the only things I have changed recently with supplements in the past 30 days.  
    • The nasal spray is safe, per the 2017 gluten-free drug list, but check the list as there are a few different manufacturers.   http://www.glutenfreedrugs.com/newlist.htm Claritin is fine.   Get a Nedi pot.  Helps tremendously.  It is safe.....100% gluten free.  Just use pre-boiled and the cooled water.  
    • Thanks Ravenswood. I need the strength and encouragement to keep going. The last sessions fall out was 4 days of my body revolting on a nervous system level.  I'll look into your acupressure book suggestion. I have done sinus acupressure for myself and my daughter for years but did not explore more.  In the past when gluten-free my fibromyalgia symptoms improved but since they come back the concern is it might be actual fibromyalgia.  After 2016 I found out I have Barrett s esophagus, fibromyalgia, additional food intolerance plus the gluten. I had in my head I was ncgs and it was all related to  that and leaky gut that occurred after my challenge., So I wasn't prepared to digest all the above. Pun intended. Thanks for the encouragement Awol
    • So I'll try to keep this short and sweet.  I'm a 25yo male and have had GI issues for about 7 years. Through many years and many doctors visits, I've gotten potential diagnoses of IBS, post-infectious IBS (d/t a Giardia infection in 2014), small intestine bacterial overgrowth, GERD, and even a strong suspicion of inflammatory bowel disease (Crohn's/Ulcerative Colitis). I've had two colonoscopies (no biopsies taken) and one EGD (biopsies only taken of STOMACH which showed chronic gastritis, not small intestine). Pretty much all of my tests have come back "normal."  I'll start by saying that back in 2014ish my blood results for Celiac were negative. My GI symptoms vary and fluctuate greatly... When I'm really struggling, I'll have chronic diarrhea, debilitating reflux, hours of burping after eating anything, epigastric and lower right quadrant abdominal pain, severe fatigue (nearly passing out), migraines, awful brain fog / depression, unilateral eye pain and photophobia, mouth ulcers, glossitis (tongue inflammation), and occasional bloody mucus in my stool if I'm extremely flared.   So my GP recommended I try a gluten-free diet after my IBD panel came back as negative. I reluctantly gave it a shot. I was gluten-free for about 2 months - slowly but surely, my chronic diarrhea relented, fatigue lifted, and my reflux nearly disappeared (to the point of considering stopping my omeprazole). Since eating gluten-free is so difficult, I decided to try a 3-day gluten challenge to see if gluten truly was the culprit. I ate gluten products 2-3 times/day for 3 days. It made my reflux a bit worse and gave me some pain, but nothing severe. My tongue however started progressively burning/stinging that week.  The BAD symptoms came about 2 weeks after my first gluten exposure... My acid reflux became MUCH MUCH worse, despite medication. I lost about 7 pounds over 3 weeks from not wanting to eat. I had much more abdominal pain. My tongue became very inflamed and sensitive to eating/drinking. I got mouth ulcers. I became very depressed, irritable, and brain-fogged out of NOWHERE. I was nauseous and having headaches. It was NOT fun. That's when I thought, "Ok, I am definitely more sensitive to gluten than I thought." That was about 6 weeks ago and my stomach is still feeling the effects of those 3 days. So, my questions: Has anyone experienced a similar story? Has anyone had lower GI bleeding with celiac? For those who have Celiac, are your symptoms typically delayed like that (2-3 weeks)? I know NCGS is supposed to have much more immediate symptom-onset. Has anyone tested negative to blood work, but positive on small intestine biopsies?   
  • Upcoming Events