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Ttg Won't Decrease

ttg refractory celiac vitamin d

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#1 Hermom

 
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Posted 21 February 2013 - 08:53 PM

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

 

So much for being brief  :rolleyes:

 

 

 


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#2 shadowicewolf

 
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Posted 21 February 2013 - 09:08 PM

Random idea, have you checked all of the makeup, lotions, shampoos, etc? Introduce anything new? Thats quite a period of time from the first 18 to that high number.


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#3 Hermom

 
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Posted 22 February 2013 - 06:06 AM

Random idea, have you checked all of the makeup, lotions, shampoos, etc? Introduce anything new? Thats quite a period of time from the first 18 to that high number.

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.


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#4 dilettantesteph

 
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Posted 22 February 2013 - 07:12 AM

I sympathise with your problem.  My son and I were diagnosed at the same time.  He is 15 now, and I have an understanding of how hard this can be on a teenager.  At first we got better so quickly.  Then symptoms kept returning.  I found out from the store nutritionist that some of the products were made in facilities that also process wheat and some celiacs react to those.  She told me which ones those were and when we excluded them things improved.  As time went on, I realized that some celiacs react to lower levels of gluten than others.  It is discussed more here: http://celiacdisease...ake-Me-Sick.htm

 

My son and I seemed to get sensitive to increasingly lower levels of gluten.  I started keeping track of what were eating and our symptoms.  We started doing elimination/challenge diets to track which things were bothering us.  We tried only changing one thing per week because we found that it could take that long to notice a reaction.  Eventually we were able to come up with a safe diet.  It also helped us tremendously to have a gluten free household.  My son's most noticeable symptom is reflux, so that might the case with your daughter as well.  You might be able to use that as an indication that she is reacting to something.

 

In hindsight I think that it would have been much easier to change to a diet of produce and meat, wait to heal, and then try adding foods.  At that time, I didn't think of it, but now I see it suggested pretty often including by moderators on this forum. 


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#5 pricklypear1971

 
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Posted 22 February 2013 - 09:00 AM

Ttg can also be elevated from other AI diseases. She could be developing something like Hashimoto's thyroiditis, etc. I know she appears healthy (and she probably is); however, the test could be picking up the development.

However, the most likely culprit is gluten. She could be getting cc'd at school, or as above posters say, it could be that she is more sensitive than average and culling certain foods or other products are necessary.

And while gluten is the most obvious reason for the reflux, she could also have stomach issues from other AI diseases if one is emerging.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 StephanieL

 
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Posted 22 February 2013 - 07:34 PM

My 5 yo son had high numbers until his Hashi's was dx (thanks to people here suggesting thyroid work ups).  After 3 months on synthroid his tTG's went from 36 to undetectable. He had been on a gluten-free diet for 3 years before we go this all under control. 

 

Good luck! 


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#7 Hermom

 
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Posted 23 February 2013 - 05:52 AM

Thanks everyone for replies and advise. I still have so much to learn....I even replied to the posts wrong   :P

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. 


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#8 dilettantesteph

 
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Posted 23 February 2013 - 06:34 AM

Thanks everyone for replies and advise. I still have so much to learn....I even replied to the posts wrong   :P

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 also find that stress makes the reflux worse.  Still, in the absence of gluten contamination, my son and I don't get the reflux.  Everyone is different though.

 

My GI told me that he thinks that most if not all cases of refractory sprue come from people who are sensitive to lower levels of gluten than normal. 


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#9 cavernio

 
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Posted 25 February 2013 - 11:32 AM

Very glad to hear you stopped the oat bread. I'd check for oat cc too (not just in your house but all your gluten-free products) since she isn't getting better.

-Make sure you have a talk to her about who she might be kissing or otherwise making out with too, don't want her kissing her bf after he eats his sandwich or ingesting flavored lube.

 

Along the same as oats, I myself am off dairy not just becuse I notice a reaction to it, but I've also read from more than 1 journal that some  proteins in dairy have been found to at least have the starting of the same auto-immune process in perhaps as many as 50% of celiacs. There's also a fairly recent article that was linked in the research section of the site (not forums) that suggests some celiacs have may have a reaction to quinoa (not just quinoa cc). And then there's also potential issues with corn and the same sort of articles I've found. (Of course these articles aren't exactly flooding googlescholar, I seem to have lost my bookmarks and I can't even find most of them anymore...so take their outcomes with a grain of salt)

 

I don't say this to scare you or make you think you need to cut out all these foods, but as possibilities.

 

I might also suggest keeping your entire house gluten free, and keep your own and your other daughter's gluten eating habits strictly outside the home. You probably make all your dinners gluten free anyways, and for lunches you can use leftovers. Shove all your gluteny pans etc in a cupboard and leave them there. At the very least you can feel guilt free, even if that has no effect.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#10 shadowicewolf

 
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Posted 25 February 2013 - 12:14 PM

Stress is evil. There is no doubt about that. My GERD loves to act up in the presence of it. More often than not, stress can be the main leading factor in certain condition (GERD for one).


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#11 Hermom

 
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Posted 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.


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#12 Hermom

 
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Posted 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


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#13 dilettantesteph

 
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Posted 01 March 2013 - 05:32 AM

Could you get an anti gliadin test instead?


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#14 Hermom

 
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Posted 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.
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#15 Gemini

 
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Posted 01 March 2013 - 12:06 PM

Thanks everyone for replies and advise. I still have so much to learn....I even replied to the posts wrong   :P

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. 

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


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