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Gluten Challenge - Length

alioubba

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alioubba Apprentice
alioubba
Posted

Hello, I'm new to the board and looking for advice.

I suspect celiac or gluten intolerance in my 7 year old daughter due to quite a few issues (iron deficiency, weak nails, fatigue, mouth sores, dark circles under eyes, constipation, bloating, irritable, aggression, social anxiety, possible inattentive ADHD and small for her age). 

I took her off gluten for just over 3 weeks and then tried re-introducing. It didn't go well. She had massive meltdowns and bloating for 2 days afterwards (we gave her a tortilla, some animal crackers and naan bread in the span of 12 hours). I wasn't convinced it was gluten but we stopped giving it to her for another 10 days and re-introduced again. It's been 8 days and she has symptoms - constipation, bloating, irritability, aggression, everything bothers her. I decided to keep her on gluten because I wanted to have her tested for celiac  (it would be important to know for family history, government tax credit and school). She was off gluten for almost 3 weeks and then 10 days. Now I have her on a gluten heavy diet and the doctor said two weeks should be sufficient. I know the standard is 12 weeks, but since she wasn't off gluten that long - do you think 2-3 weeks is okay?

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Charli61 Apprentice
Charli61
Posted

I think 3 weeks is ample, especially if she is feeling so awful during the challenge.  I am an adult and it darn near did me in doing a challenge, and mine was 3 weeks.  I had been essentially off of it for several months, and then did the challenge and it was sufficient.

cyclinglady Grand Master
cyclinglady
Posted

I am sorry that your child is unwell!  

From my research, in as little as two weeks, antibodies can reverse or become undetectable.  This does not happen to everyone, but it is possible.  Kids too, tend to heal fast.  Researchers recommend 8 to 12 weeks of consuming gluten daily (one slice of bread or equivalent).  Just doing a two week challenge?  I suppose you could provided your doctor will re-order the test at 8 or 12 weeks if the first result is negative.  I would also urge you to ask for the complete panel instead of the standard screening TTG.  Here is more about testing:

Open Original Shared Link

We are a gluten free household.  My kid (16 years old) only gets gluten in her school lunch.  When I have her re-tested, she will consume gluten daily for 12 weeks.  I want to make sure celiac disease is not overlooked.  

I hope this helps you.  

 

alioubba Apprentice
alioubba
Posted
  • Author
23 minutes ago, Charli61 said:

I think 3 weeks is ample, especially if she is feeling so awful during the challenge.  I am an adult and it darn near did me in doing a challenge, and mine was 3 weeks.  I had been essentially off of it for several months, and then did the challenge and it was sufficient.

Charli61 you tested positive for celiac? How high were your antibodies?

alioubba Apprentice
alioubba
Posted
  • Author
20 minutes ago, cyclinglady said:

I am sorry that your child is unwell!  

From my research, in as little as two weeks, antibodies can reverse or become undetectable.  This does not happen to everyone, but it is possible.  Kids too, tend to heal fast.  Researchers recommend 8 to 12 weeks of consuming gluten daily (one slice of bread or equivalent).  Just doing a two week challenge?  I suppose you could provided your doctor will re-order the test at 8 or 12 weeks if the first result is negative.  I would also urge you to ask for the complete panel instead of the standard screening TTG.  Here is more about testing:

Open Original Shared Link

We are a gluten free household.  My kid (16 years old) only gets gluten in her school lunch.  When I have her re-tested, she will consume gluten daily for 12 weeks.  I want to make sure celiac disease is not overlooked.  

I hope this helps you.  

 

my doctor just ordered the TTG-IGA, I called the clinic and it looks like the ones I am missing are Total IGA and IGG. The test names are super confusing, maybe I can just get her to change it to "celiac panel" and that would cover everything? I asked her about genetic testing and she had no idea how to order that test. We have to pay for the test here in Canada - It's $125.

cyclinglady Grand Master
cyclinglady
Posted

The genetic test will not diagnose celiac disease because some 30% of the population carries the genes that could trigger celiac disease.  Only a FEW actually go in to develop it though.  Start with the TTG IGA and the IgA deficiency test.  (The IgA deficiency test tells you if the TTG IgA test is valid/control test in regards to celiac testing.  You need both.). If negative you could go on and order the DGP and the EMA tests?  Why?  The TTG test does not catch all celiacs like me!  I test positive only to the DGP.  It is not a fluke. It is how I test in follow-up  testing too.  

cyclinglady Grand Master
cyclinglady
Posted

The challenge is much shorter....two weeks for the biopsies obtained by endoscopy.  

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  • 3 weeks later...
alioubba Apprentice
alioubba
Posted
  • Author

I have an update, we decided to go with the doctor and test after 2 weeks being back on a heavy gluten diet. I asked for the results when I went to see the nurse for another issue.

Doctor has said they are "inconclusive" and is sending us to a specialist. I wasn't allowed to take the results with me until she finishes reviewing but I did get to look at the screen.

Total Iga - normal

Transglutaminase IgG - normal

Deamidated Gliadin IgG - normal

Deamidated Gliadin IgA - she is still reviewing this one and wouldn't provide the result. Can anyone explain further what this one is for?

Transglutaminase IgA ab - 27.0 (anything over 25.0 is considered abnormal)

I am wondering if the specialist will re-test? Or send it for her an endoscopy?  She is only 7 years old so I am worried about putting her through that.  I thought she had iron deficiency (she did when she was younger but we tested that and it was fine). Any thoughts or advice would be greatly appreciated. I am feeling really confused right now! 

 

 

 

 

cyclinglady Grand Master
cyclinglady
Posted

With her IgA level normal, all the IgA tests for celiac testing work.  It would be interesting to see what the DGP IgA test result is.  With a slightly elevated TTG IgA, she should probably get an endoscopy.  But that could be related to another autoimmune disorder.  Going back on  gluten for two weeks is not really enough time for the blood tests.  ☹️   There is a reason why experts recommend 8 to 12 weeks of consuming gluten daily.  Symptoms do not necessarily correlate with antibodies results.  It takes a while to build up antibodies to be measured in the bloodstream.  

Consult with a celiac-savvy GI.  

Oh, when she was gluten free she could have healed enough to absorb iron.  My levels went up and down for years.   

I hope she feels better soon!  

alioubba Apprentice
alioubba
Posted
  • Author

I figured I would get the testing now (it would probably be negative) and then just test again in 3-6 months if we were still having issues.  I was mostly interested in her iron levels as she had started sucking on rocks and eating mud! I really wasn't expecting a positive result.

Anyway, I thought I would just have to take GI specialist that my doctor refers me to? How do I find a celiac savvy GI specialist?

cyclinglady Grand Master
cyclinglady
Posted

Not sure how Canadian Health works.  My insurance allows me to choose a GI within my network. I check the doctor biographies.  

  • 2 weeks later...
Victoria5289 Apprentice
Victoria5289
Posted
On 4/14/2017 at 7:11 PM, alioubba said:

Hello, I'm new to the board and looking for advice.

I suspect celiac or gluten intolerance in my 7 year old daughter due to quite a few issues (iron deficiency, weak nails, fatigue, mouth sores, dark circles under eyes, constipation, bloating, irritable, aggression, social anxiety, possible inattentive ADHD and small for her age). 

I took her off gluten for just over 3 weeks and then tried re-introducing. It didn't go well. She had massive meltdowns and bloating for 2 days afterwards (we gave her a tortilla, some animal crackers and naan bread in the span of 12 hours). I wasn't convinced it was gluten but we stopped giving it to her for another 10 days and re-introduced again. It's been 8 days and she has symptoms - constipation, bloating, irritability, aggression, everything bothers her. I decided to keep her on gluten because I wanted to have her tested for celiac  (it would be important to know for family history, government tax credit and school). She was off gluten for almost 3 weeks and then 10 days. Now I have her on a gluten heavy diet and the doctor said two weeks should be sufficient. I know the standard is 12 weeks, but since she wasn't off gluten that long - do you think 2-3 weeks is okay?

Um I really don't think it is gluten problems it sounds like an abrasion of some kind

kareng Grand Master
kareng
Posted
3 hours ago, Victoria5289 said:

Um I really don't think it is gluten problems it sounds like an abrasion of some kind

Do you know what an abrasion is?  Maybe you need a better "translate to English" program?  

Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, kareng said:

Do you know what an abrasion is?  Maybe you need a better "translate to English" program?  

I agree. She joined today and most of her 26 posts are offering medical advice that is a bit odd.

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