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Hermom

Member Since 21 Feb 2013
Offline Last Active May 15 2013 09:29 AM
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Posts I've Made

In Topic: Ttg Won't Decrease

15 May 2013 - 09:29 AM

Listen to Stephanie.  Your doctor should also be doing a repeat DGP or the older AGA-IgA/IgG to see if she is reacting to gluten in her blood......repeating the tTg only is the incorrect way to monitor the diet.  Doctors make this mistake ALL THE TIME and I have posted this information so many times on this forum, it makes my head spin.  Yet, still I see poeple with clueless doctors who don't know how to re-test for compliance.

 

The tTg only checks for intestinal damage, which can be elevated from other AI diseases.  Forget Refractory Sprue......she is too young to sustain that kind of damage to cause it.

The other tests I mentioned look for gluten reaction in the blood so if this is negative, then your daughter is not consuming gluten and most likely may have another AI disease brewing.

 

That may not be so bad because when people are young, other AI diseases may not have been brewing long enough to cause much damage and many times, symptoms can be reversed.  If your daughter has been serious about the diet, then it is also unlikely she is being glutened by non-food items.  Lets face it, how many people actually eat their make-up and shampoo to the point where they cannot lower their tTg?  The only things she really needs to be vigilant about are hand and body lotion and lipstick/ anything that goes on the lips.

I think this point is seriously over blown.  Do people really want to be eating shampoo on a regular basis?    :huh:   How can you not know you are eating shampoo?  The taste alone would get you!

 

Have your daughter's thyroid checked, with a full thyroid panel, not just the TSH and a screening for diabetes.  Also, sometimes your liver enzymes can be elevated from Celiac Disease and liver disease can elevate tTg.  This does not mean that your daughter has liver disease as liver enzymes usually always return to normal after following the gluten-free diet for awhile.  I had elevated liver enzymes but not anymore.  I also have 3 other AI diseases in addition to Celiac so I know a lot about this.  All of my numbers have returned to stellar ranges

after awhile on the gluten-free diet.  I am very sensitive to trace amounts of gluten and nearly died 8 years ago from the disease so if I can do this at my age, your daughter will be fine. it sometimes takes awhile to figure it all out and get on the right track.

 

Make sure the doc does the repeat DGP!  That will give you some insight as to whether she is truly gluten-free.  Not need to go crazy looking for holes in the diet when that might not be the reason for the elevated numbers.  Good luck to you and hang in there......your daughter will be fine!   :D

**UPDATE**

 

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
IMPRESSION:
 
Bone mineral density is within normal limits for chronologic age.
 
CLINICAL INDICATION:
 
16-year-old white female with celiac disease.
 
LABS:
 
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.

 

Blessings!


In Topic: Ttg Won't Decrease

09 March 2013 - 11:57 AM

Thanks to you all for the level-headed advice.  Especially Gemini and beachbirdie.  I will be sure to follow the comments on the thyroid screening when the time comes.

 

In the meantime...I am trying to find a balance between panic and legitimate concern while we wait for the next round of bloodwork.

 

Blessings to you all!

 

Hermom


In Topic: Ttg Won't Decrease

01 March 2013 - 06:34 AM

Yes, the orders for April's Bloodwork includes:

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 Topic: Ttg Won't Decrease

28 February 2013 - 05:37 PM

I'm back to throw something else out at you all.

 

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?

 

Thanks,

Hermom


In Topic: Ttg Won't Decrease

25 February 2013 - 02:08 PM

Appreciate the contiued advise.

 

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.