could this be hypersensitivity or something else?

[mom2celiacgirl 0]

Hi, 

My 14 year old daughter was diagnosed almost 4 years ago.  It took about 6 months of being gluten-free before she finally felt better, and then she had one glorious year of feeling healhty.  Since then, however, she seems to have had more and more episodes of pain/sickness and we can't find the cause.  We worked with a nutritionist to go through her diet, but nothing made a difference.  She is taking Elavil now in case it's due to hypersensitivity, but even that isn't helping.

On her last endoscopy they found multiple small ulcerations in her duodenum, and her celiac blood levels are elevated, but her vili are totally healed.

Everyone, including our GI doctor, is stumped.  We just began homeschooling her because she becomes sick with terrible pains every 2-3 weeks and school was too much.

HELP!  Any ideas?

Thanks

[cyclinglady 1,431]

I am so sorry!  

The small intestine, when stretched out, is about the size of a tennis court -- easy to miss damaged patches.  That could be one reason.   Plus, she is a teen (I have a 15 year old myself.).  Dr. Fasano (Gluten Freedom), a celiac disease expert Ped GI at Harvard, did have a a patient who started eating pizza on a date.  He finally confessed to Dr. Fasano and not to his parents.   I experienced a Girl in my kid's school band that ate a rice Krispy treat at a football game.  She thought it was gluten free.  She  just really wanted to fit in too!  Not saying this is your kid, but you never know!  

Also, it could be another AI issue on top of the celiac disease.  Has Crohn's been ruled out?  My own 19 year old niece was just diagnosed with Crohn's.  It was found on a pill camera and located beyond the reach of both the endoscopy and colonoscopy.  She presented with ab pain once a month.  Her fourth GI (the one who caught it) was surprised that she did not have daily pain.  

 

[mom2celiacgirl 0]

Thank you for the thoughtful reply!  I actually am taking her across the country to see Dr. Fasano in January, because we are so stumped over here.  Hopefully he'll have an idea of how to help her.

She did confess to eating contaminated fries, but that was when we first discovered the elevated blood levels (they had been negative for awhile).  Now she eats only at home and is so scared of getting sick that she checks everything religiously.  We even got the dogs and cats on grain free foods and she checks their treats.

I have wondered about crohns but apparently there are no blood indicators and her stool samples were normal.  Did your niece have any other symptoms beside the monthly ab pain?

 

 

[cyclinglady 1,431]

16 minutes ago, mom2celiacgirl said:

Thank you for the thoughtful reply!  I actually am taking her across the country to see Dr. Fasano in January, because we are so stumped over here.  Hopefully he'll have an idea of how to help her.

She did confess to eating contaminated fries, but that was when we first discovered the elevated blood levels (they had been negative for awhile).  Now she eats only at home and is so scared of getting sick that she checks everything religiously.  We even got the dogs and cats on grain free foods and she checks their treats.

I have wondered about crohns but apparently there are no blood indicators and her stool samples were normal.  Did your niece have any other symptoms beside the monthly ab pain?

 

 

No, she did not have any of the regular Crohn's symptoms.  Weird, but true!  At the fourth GI (celiac disease was soundly ruled out), he ordered the pill camera.  She was scheduled to have in done within four days of leaving for Europe with me and the rest of our family.  I encouraged her to reschedule.  The damage was so severe at the end of her small intestine that her GI said it could have stuck (surgery to remove it).  Thankfully, she traveled well in Europe and then dealt with the pill camera and diagnosis after our trip.  She is on Remicade and doing well.  

I have urged her to continue to get celiac disease testing periodically for the rest of her life.  AI issues run strongly in our families.  

I was glutened last summer.  I have NO idea as to what glutened me as it happened just before my four week vacation.  I went to my GI and my antibodies were off the chart!  My symptoms started slowly and continued to ramp up for weeks (worsened).  While just anenic upon my diagnosis, this time i was vomiting, ab pain, all the gut issues, could not digest anything (went on soft foods), passed out, full body  hives (not DH), itching, swelling, lactose intolerance, weight loss, anxiety, tingling legs, tinnitus, etc.  I was a mess!  I did not eat out until our vacation the following summer.  I am letting you know that one gluten exposure can cause an autoimmune reaction that lasts and lasts.  This does not happen to everyone, but it has been documented by my GI with me.  Took me three months to feel okay and six months to regain lost weight.  

I can tell you that i do best when i am on whole foods diet.  Better for me to eat ice cream than any commercially processed gluten-free foods.  Super sensitive?  I think not.  My dog and kitty were on gluten-free diets too!  

[cyclinglady 1,431]

Oh, read this study.  Dr. fasano was on it.  Look at the study's recommended diet.  It found thatmmany celiac patients were getting gluten in their diet despite their best intentions.  Something to consider.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf

Edited December 27, 2016 by cyclinglady