Ttg Won't Decrease

[Hermom]

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 

 

 

 

[shadowicewolf]

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.

[Hermom]

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.

[dilettantesteph]

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: Open Original Shared Link

 

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. 

[pricklypear1971]

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.

[StephanieL]

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! 

[Hermom]

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. 

[dilettantesteph]

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 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. 

[cavernio]

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.

[shadowicewolf]

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).

[Hermom]

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.

[Hermom]

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

[dilettantesteph]

Could you get an anti gliadin test instead?

[Hermom]

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.

[Gemini]

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. 

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?       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!  

[beachbirdie]

As Gemini said, make sure your daughter gets tested thoroughly for thyroid.  This should include the anti-Thyroid Peroxidase (anti-TPO antibodies) and the anti-Thyroglobulin antibodies (TgAb), in addition to the TSH, FREE T3 and FREE T4.  Total T4 and Total T3 are useless without the "Frees".

 

Autoimmune liver disease and inflammatory bowel diseases (Crohn's for example) are conditions that can also raise the TtG IgG.

[Hermom]

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

[majab]

Hello everyone,

 

my first post here just to say I sympathise and share same concern with Hermom and your daughter. I am 32 yrs old and was diagnosed celiac seven months ago. Had no real digestion problems exept anemia which wouldn't go away. At that time, first results on tTG-IgA were >200 (normal is below 20). Now seven months after the results on tTG - IgA are still >200.

 

The DGP-IgG is 24 (normal is below 25) - so DGP is ok. They didn't do DGP for first time seven months ago. As Gemini mentioned the test doesn't give exact numbers above 200 so I can't really tell if antibodies have dropped. Even a small drop would tell that there is some reaction to gluten-free diet. So I am very concearned. I'm getting  different info on how much time does it take for TTG to lower down when on gluten-free diet. My doctor said that this takes a while and that I shouldn't be concered, that 7 months is not enough time, other say it takes 6-8 months. And now I have to wait another six months for new bloodwork on tTg-Iga.

 

I am from Croatia and celiac people have much more difficulties being gluten-free.  I am vegetarian, I cook my own meals, almost never eat out, of course there is this problems getting traces of gluten in my food with which I really try to be careful. But I am very worried if I have this refractory celiac disease.

 

Can somebody answer me what DGP results acctually tell? I read somwhere that elevated numbers show that gluten is still entering organism..? And tTg-Iga damage, inflamattion of gut? I really don't know about these antibodies.

 

 

I guess we have to be patient and hope that the next bloodwork will show improvements.

 

Maja

[Gemini]

Hello everyone,

 

my first post here just to say I sympathise and share same concern with Hermom and your daughter. I am 32 yrs old and was diagnosed celiac seven months ago. Had no real digestion problems exept anemia which wouldn't go away. At that time, first results on tTG-IgA were >200 (normal is below 20). Now seven months after the results on tTG - IgA are still >200.

 

The DGP-IgG is 24 (normal is below 25) - so DGP is ok. They didn't do DGP for first time seven months ago. As Gemini mentioned the test doesn't give exact numbers above 200 so I can't really tell if antibodies have dropped. Even a small drop would tell that there is some reaction to gluten-free diet. So I am very concearned. I'm getting  different info on how much time does it take for TTG to lower down when on gluten-free diet. My doctor said that this takes a while and that I shouldn't be concered, that 7 months is not enough time, other say it takes 6-8 months. And now I have to wait another six months for new bloodwork on tTg-Iga.

 

I am from Croatia and celiac people have much more difficulties being gluten-free.  I am vegetarian, I cook my own meals, almost never eat out, of course there is this problems getting traces of gluten in my food with which I really try to be careful. But I am very worried if I have this refractory celiac disease.

 

Can somebody answer me what DGP results acctually tell? I read somwhere that elevated numbers show that gluten is still entering organism..? And tTg-Iga damage, inflamattion of gut? I really don't know about these antibodies.

 

 

I guess we have to be patient and hope that the next bloodwork will show improvements.

 

Maja

 

 

Hi maja,

      We have another member on this forum who owns a second home in Croatia.  She is an exceptional cook so maybe she will chime in with some advice BUT a few things......

 

The DGP tests for reaction to gluten in the blood stream and you want that number to be as low as possible, within the normal range.  Yours is 24 and that is excellent but over time and strict adherance to the gluten-free diet, it should come down even further.  But it will take time.  You should not worry about Refractory Sprue at all because that usually strikes people who do not know they have Celiac and continue to eat gluten or those who have been diagnosed and do not follow the diet well.  It does not happen all that much either and you are young so don't waste your energy worrying about that.  Seven months is just the beginning for being gluten free and you're still learning.

 

The tTg-IgA tests for damage to the intestinal tract and that can take quite awhile to normalize.  You are right....they use these annoying ranges and when they don't give you a specific number to begin with, you have no idea how much ttg has dropped. But your DGP is in the high end of normal so it doens't look like you are ingesting gluten to the point where you wouldn't heal.  The other reason tTg can be elevated is from other autoimmune disease....thyroid disease, liver disease, Chron's disease and diabetes.  The test looks for tissue damage.

I am not saying you have another disease popping but it might be good to do a full thyroid panel to see if that is off.  I have no idea how easy that is to do in Croatia but it might be a good thing to discuss with the doctor...and hope they listen to your concerns.Thyroid disease is extremely common with Celiac....I have 3 other autoimmune diseases besides celiac but am doing fine. 

 

Personally, as it can take up to 2 years to get that pesky tTg in the normal range, I think you need to give it more time. A thyroid panel would be good to do but you haven't been gluten-free long enough to get too worried just yet.  Make sure they always do the DGP with the tTg because the tests means 2 different things and you need the one with the other to get a clearer picture.  Hopefully, I haven't confused you too much and if you have any questions, please feel free to ask.

[majab]

Dear Gemini thank you soooo much for your reassuring and comforting words. I needed just that. You made a lot of things more clearer to me now.

Yes I guess I have to be more patient.  I will certainly ask doctor about this thyroid tests. For now I will wait six months till the next test and then see what will be the next step.

So glad to hear you are doing just fine, despite having to cope with 4 AI diseases.

 

Maja

[dilettantesteph]

You might want to be aware of this study of refractory celiac patients.

https://www.celiac.com/forums/topic/100327-trace-gluten-responsible-for-ongoing-symptoms-study/

[Gemini]

Dear Gemini thank you soooo much for your reassuring and comforting words. I needed just that. You made a lot of things more clearer to me now.

Yes I guess I have to be more patient.  I will certainly ask doctor about this thyroid tests. For now I will wait six months till the next test and then see what will be the next step.

So glad to hear you are doing just fine, despite having to cope with 4 AI diseases.

 

Maja

 

I'm glad I could help.  Yes, the most important thing to do is develop good patience.  It took me 3 years to completely get rid of all my symptoms of Celiac so expect a longer recovery with this disease.  I had really high numbers like you on testing so improvement does not happen overnight.  Good luck with everything!

[Hermom]

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?       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!  

**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!

[shadowicewolf]

I've heard that arthritis might cause the ttg to go up, but i'm not sure if that is factual or not.

[Gemini]

The reason I do not go to any GI doctors is because of reasons like this.  Oy, Vay! 

 

If your daughter's bone density and vitamin numbers are getting better, then she doesn't have refractory.  Putting her on steroids she doesn't need will only make her bone density worse, if she takes them longer than 3 months.  What are these people thinking???????

 

A couple of things.....her gliadin IgA number is 15.4, with a normal range being 0-20.  It is in normal range but you want that number to be as close to zero as possible.  That means your diet is very tight.  I am not saying she is eating gluten and it does take quite awhile to fine tune that number down closer to zero but keep that in mind.  Do not think it has to be zero, either. My lowest was a 1 but it took me about 5 years to get it that low and yes, I go out to eat occasionally.  It doesn't have to be zero and I have never met anyone who has gotten it to zero but this is the measurement of reaction to gluten in the blood stream and you want that number a little lower.  Having said that.....

 

Her symptoms could very well be thyroid or rheumatoid arthritis or it could be that she had so much inflammation, body wide, it will take longer to completely heal. It took me awhile to bring my tTg down because I had thyroid disease and a couple of others, to boot.  This is how it works.  Do not let them label her as Refractory.  If she were, then her bone density and vitamin levels would not be improving.  Did they not check her thyroid? I had joint pain myself, in my hands, before I healed and got everything in good working order.  I have absolutely no joint pain of any kind anymore and I'm almost 54 years old.  Your daughter either has another AI problem OR she is in need of more healing time.

 

Go see her PCP and have them screen her for all the other problems associated with Celiac.  Her tTg is slowly coming down but this isn't a race, ya know!    Doctors really have no clue about the recovery phase of Celiac......

 

Best of luck and keep us updated.  Bring a listing of all associated conditions and make them look into those first!