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Well we have some results on daughter's latest tests.
In general things have shown some improvement, though some questions remain.
Here is the results:
4/26/2013 DEXA SCAN
Bone mineral density is within normal limits for chronologic age.
16-year-old white female with celiac disease.
Tissue Transglutaminase IgA f 61.4 H unit(s) [0.0-19.9]
Prothrombin Time 14.1 second(s) [11.5-15.0]
INR f 1.1 L [2.0-3.0]
Gliadin IgA f 15.4 unit(s) [0.0-19.9]
Gliadin IgG f 5.0 unit(s) [0.0-19.9]
Calcium 9.3 mg/dL [8.9-10.7]
Phosphorus Level 3.7 mg/dL [3.0-4.8]
Vitamin D 25 Hydroxy Total f 79.2 f ng/mL [30.0-100.0]
Vitamin A, S
Free Retinol(Vit A) 38.0 mcg/dL 14.4-97.7
Vitamin E Level 7.9 f mg/L [3.8 - 18.4]
So...Her bone density has improved. We have confidence that she is complying with the gluten-free diet. And her Vitamin D is back in normal range.
The remaining issue is that though the Tissue Transglutaminase IgA f 61.4 H unit(s) [0.0-19.9]
has decreased from 70 in January, it is still quite high.
Her ped. GI wants me to take her to her GP for a thorough physical, to see if they can find the reason for her general fatique, joint aches, headahes etc.
If GP doesn't come up with anything, ped. GI wants to look at an endoscopy and possible steroids to address the idea of Refractory Sprue!! I'm not willing to go there yet.
This is what I want to do and woud love any sage advice on this.
I have asked daughter to start journalling her aches and pains. Will take her in two weeks or so to her GP and discuss what the journal shows and ask the GP to do a full Thyroid panel.
If that shows us nothing....not sure what I will do next. She has no gastro symptoms...so I don't understand why the ped. GI keeps mentioning the refractory idea.
One other result of note is that her dad had a retest of his celiac panel and all results negative / normal
Would love to hear from you all to see if this seems like a reasonable approach...or any ideas of other things we should investigate.
Deamidated Gliadin(hope I have that right). TTG-IgA PT/PTT Vitamin D 25 (?) Vitamin A Vitamin E Calcium, Phosphorus and a repeat Dexa Scan.
If I understand the Deamidated Gliadin test right, that will at least help us know if Im still letting gluten through to her and her Dad.
Her dad just had a physical...His GP did all kinds of bloodwork but no Gliadin or TTg. I was disappointed with that. The Dr. told him his antibodies will always be high because he has Celiac...That left me scratching my head.
But we did find out that husbands thyroid function is normal.
In doing more searching on the forum. I've found many posts where a person thought that mononucleosis may have been the trigger for their celiac. But not much reference to what the impact of mono is on a diagnosed celiac.
so...did find this:
"This is the first study where anti-tTG have been shown to be produced temporarily during an infectious disease, independently of coeliac disease. Acute viral infections in children and adults have long been suggested to induce an autoimmune response, including generation of autoantibodies in which their titres are low and the autoimmune course transient"
"This accounts for the transient appearance of autoantibodies during mononucleosis. In our cases the anti-tTG disappeared, together with the anti-EBV antibodies, along with the children's clinical improvement."
"These findings indicate that anti-tTG should no longer be seen as a province of celiac disease, but might represent an immunological phenomenon depending on yet-to-be identified triggers (overexpression of the autoantigen, viral infection). Thus, autoantigenic challenges caused by infectious agents and/or inflammatory reactions during the lifetime could be responsible for the age-dependent increase of anti-tTG in the general population, as we observed among eight different healthy age groups."
When daughters number's went from 18 to 81, I called the GI office to see if her case of mono 4 months earlier could have brought up her tTg. Was told no.
I know..... I'm just grasping for hope that she is not developing another AI, but could it be a possibility?
Anyone out there had the experience of their numbers going up from an infectious disease?
Anyone have a clue how long the EBV might remain active after a case of mono?
Boyfriend not a concern. Have seen her social life diminish since her diagnosis...but that's subject matter for a different thread
I guess a question that comes to mind is that besides being more and more careful with CC, if we eliminate dairy, corn,etc. how do we know what changes are moving the numbers, if they do show a decrease with the next bloodwork?
Being asymptomatic is a double edged sword. Don't wish discomfort upon her...but wish we could tell if something brings on a reaction.
Thanks everyone for replies and advise. I still have so much to learn....I even replied to the posts wrong
So if this ends up being a repeat....Sorry.
She has always said her reflux bothers her when she stressed. I will pay much more attention to that as..... AHA MOMENT.....Maybe that is
her reaction to gluten. Thanks dilettantesteph !!
We're going to recheck her cosmetics, lotions and potions this weekend.
And I guess I'll will just need to be patient until the next round of bloodwork. I think I"m prepared to help her except another AI, just praying it's thyroid vs. diabetes.
I've been checking more on the Refractory Sprue concept the GI brought up. Found an article (2003), that stated there are no documented cases of refractory sprue in celiacs under 20 years of age....So, I'm trying not to worry in that direction as much.
We have checked all that early on. I suppose there could be something there we missed.
I should mention that I am sure she and her dad have been "glutened" somewhere along the line these past almost two years, but they don't show symptoms. So its realy hard to pinpoint any one product or item causing a reaction.
I have only made one major change since her last blood work. I've eliminated a Vegan Oat bread we were buying from a nearby Gluten free Bakery. The oats are certified gluten free, but I understand some celiacs react to the oats themselves. Maybe that is causing the continued high numbers.
Well...after almost two years of just reading the forums, I'm at my wit's end and, making my first post.
I'll try to keep this part brief:
April of 2011, husband's.celiac diagnosed. Our two daughters blood tested in June of 2011. Like a greek tragedy...one daughter positive, other daughter negative. Daughter with positive blood test was 15 at the time. She was tested by her general practioner, who advised that with father's diagnosis and numbers in her blood work off the charts,(not sure of number but I seem to remember hearing 134), endoscopy was a moot point. She made diagnosis, advised that she join her father on a gluten-free diet, and said she could refer a GI if we wanted. at the same time daughter is diagnosed with scoliosis.
So...August of 2011 daugter sees pediatric GI doc. She would advise endoscopy, but agrees with GP that diagnosis is most probably correct. Orders additional bloodwork, and dexa scan (beause of scoliosis daignosis).
Test comes back with vitamin D deficiency, calcium deficciency and osteopenia.
I should probably throw in here that daughter started gluten-free diet the day she got the results of bloodwork in June. Also she and her dad had little if any symptoms before diagnosis.
She has next blood work January of 2012. TTg now 18, other numbers coming down Ped.GI says were doing good keep up the good work. Adds omeprazole for her reflux. Has her taking vitamin d and calcium.
May of 2012 both daughters end up with Mononucleosis. but amazingly recover pretty quickly.
August 2012, daughter has more bloodwork. Vitamin D normal, TTg now up to 80! Says take multi vitamin, work harder on gluten-free diet, preventing CC etc.
Even though we were not a gluten-free household, in August our other daughter left for college, and now there is only VERY LIMITED food containing gluten in the house, and I handle it really carefully. Have separate frying pans, toasters, etc. I work really hard to keep my celiacs safe.
So...in January she has another round of bloodwork. This time I'm sure we will see TTg numbers back in the 18 range. Results come back...70!!. Vitamin D at 17. Ped GI nurse calls with results and advises 50,000 i.u. of vitamin D for 8-12 weeks, then retest. Asks if I want to see dietician again. I declined. Nurse calls back two days later and says they want her bloodwork and another dexa scan redone in April, and suggests thaT she may have ssecondary Auto-Immune disease or...Refractory Celiac Sprue.
Well that scares the heck out of me,and Ive been searchng ever since for any cases of teenagers with little symptoms of celiac having refractory celiac sprue, and can find nothing.
So finally I get to my question... Can a celiac be gluten free and the TTg numbers stay abnormlly high?
My daughter has handled this diagnosis and her scoliosis with grace, and I'm really proud of how she's facing it as a teenager. I just can't imagine how she will deal with an additional diagnosis.
Her general health is really quite good and the scoliosis hasn't changed. It's hard to comprehend that she could be developing Hashi's or Diabetes or Refratory Celiac Sprue when she seems as healthy as her non-celiac sister. I'm soooo discouraged any ideas will be appreciated