Help - Why are Levels high after over 3 yrs gluten-free

[confused-again]

Hello, 
My daughter was diagnosed Coeliac (full endoscopy) in April 2013 when she was 10.
 My mother is a highly sensitve coeliac so we were aware of a gluten-free diet before the diagnosis & hence that was part of reason we asked for the coeliac testing.  My daughter is very close to my mum emotionally and so she has coped very well with the gluten-free diet and being a coeliac.

My daughter is now almost 13.

Originally her level was <111 for the first bloods.  We went to a paediatric gastroentrologist.  They then did an endoscopy and confirmed coeliac disease.  Since then she has been diagnosed with mild autism spectrum disorder. 

After the first year of gluten-free diet her levels came down to 31.  After the second year of a gluten-free diet her levels came down to 25 which was April 2015.

The paed Gastro indicated she must be getting low ongoing exposure to gluten.  We were very shocked and concerned as we are VERY strict. (even another coeliac in her class at school says how strict our daughter is with her diet).  Also due to the autism, she is quite rules based and follows rules well and strictly adheres to things.

We went back to our GP and asked if anything else could be causing the high TTG levels. The GP ran some bloods (May 2015 - lots tested all sorts of levels of things including TSH & TFT) and indicated there were thyroid concerns.  So off we went to an Paed endochronologist.   They then rang bloods in July 2015 - which showed fluctuating Thyroid levels again (did TSH, T3, T4 etc).  Then we re ran bloods (I must point out my daughter has a MAJOR needle phobia (possibly due to her autism) and has a full meltdown / tantrum every time we do blood tests - it is quite a trama and needs 2 - 3 full adults to hold her to take the bloods).  So we ran bloods again in Sept 2015 showing thyoid was still fluctuating and her TTG were at 30 still.

Then we ran bloods last week (30 Dec 2015) and went to Endochronologist again on 5/1/16.  Endochronologist said Thyroid has been fluctuating but is all ok & normal for 12-13 year old girl in puberty.  However her TTG have skyrocketed up to 165.

Funnily on our way home from Endochronologist, The receptionist at the Paed Gastroentrologist rang and said that DR has asked to see our daugther and wants an appointment soon.  And later the same day our GP rang and also asked us to go in for an appointment.

So we are going back to gastroentrologist in early Feb.

I must also point out that in Aug 2015 my father in law passed away from cancer and my daughter was quite upset by this.  All was ok and then in late Oct - my husband walked out and left me and the children and hardly saw the children until Christmas time.  My daughter was extremely upset by this and still is.

My daughter has is also starting high school next year in February 2016 and is quite anxious about that.

Questions : -

  1- Could stress cause the TTG level to increase so rapidly from Sept 2015 - Dec 2015?

2 - Would she still need to be having some gluten exposure to cause the levels to be high (even if stress caused it to be more elevated - does there need to be some underlying gluten still there in the first instance?)

 I am going to go over everything tomorrow - including her shampoo, toothpaste, body creams etc, but I can't see how she would be having gluten. We don't eat out much and as I said we had a good knowledge of a gluten-free diet before her diagnosis as my mother is coeliac too.

3 - What else could cause these high levels - besides on-going low level exposure to gluten or thyroid?

We were using a sensitive shampoo that has oatmeal - so I will have to get her to stop using that.  We don't eat oats.   We don't do porrige, but we do buy packet gluten-free things from the super market and use Betty Crocker gluten-free cake mixes.   We tend to stick to products that say gluten-free on the label, rather that products that don't mention it.

We live in Australia & the food labeling laws now make it mandatory to list Wheat / Barley / Gluten on the label as an allergen, or in bold type so it stands out, which has made it easier in last few years to buy gluten-free products.

Any suggestions of what to ask doctors or what extra tests to request when doing next bloods.

Any help would be gratefully appreciated as I am quite worried about her.

 

[cyclinglady]

Read this study from PubMed (reliable source) about trace gluten contamination:

Open Original Shared Link

Think about it.  For a celiac, a small amount of gluten can trigger the autoimmune response causing a patient's  body to attack their small intestine.  Doctors do not exactly know how gluten affects an individual.  Symptoms are different for each patient.  Some are symptom free.  Once triggered by gluten, doctors can not say how low the autoimmune reaction will last as it seems to be based on the individual.  

The study includes a table showing the whole foods diet that the researchers gave to patients who were not getting well or were suspected to have refractory celiac disease.  Turns out trace gluten contamination appeared to be the culprit.  After the whole foods gluten-free diet, many patients were able to go back to a standard gluten free diet containing processed foods.  

I am not a doctor nor a researcher, but I can tell you that gluten has impacted me in strange ways.  Anemia was my primary symptom when I was diagnosed.  Now, a gluten exposure causes gastrointestinal symptoms for me.  I was accidentally glutened in July just prior to my vacation.  What did it?  I still do not know.  I suspect a product that was processed but contained no gluten and was labeled gluten free (not certified)  or a new medication that I had verified with the manufacturer.  Just guesses, but it was a product that my gluten-free husband did not consume.  He is my canary!   I have yet to take the med again or use the suspected food.  I went on vacation and I am sure I might have been glutened unintentionally again in a restaurant.  A month later, I was at the GI office because I was not getting well.  Did I have SIBO or was it something else? Turns out that my  DPG Iga antibodies were sky high (I test negative to the TTG tests).   Higher than when I was first diagnosed.  A month later.....and during that month after my glutening and before my blood draw, I was eating only stewed meats and mushy veggies.  The only things I could tolerate.  All my old intolerances came back....lactose....etc.  So, that gluten exposure for me set off a chain reaction of events.  I did not get my thyroid evaluated at the time all this occurred, but I do have Hashimoto's Thyroiditis.  I just stayed the course on my thyroid replacement and weathered it out.  It took me three months to recover from my July glutening.  Two months to feel good and another to get back foods like dairy.  I have have not eaten at a restaurant since and I try to stick to whole foods as much as possible.  I suppose, like childbirth, I will forget how bad a glutening can be and I will not be so diligent.  

Every celiac reacts to gluten differently.  I hope this help your daughter.   

[Gemini]

I have to ask whether or not your docs have been also re-testing the DGP or AGA/IgA or IgG to see if your daughter is actually consuming gluten?  The tTg is not the correct test to use for dietary compliance.  That tests for tissue damage and, while it will elevate back up in someone who is consuming gluten, it can be elevated from other autoimmune conditions so it is REALLY important to run the correct tests for dietary compliance.  They make this mistake all the time.

Secondly, have they treated her for her thyroid problem or tested her for Hashimoto's, which is autoimmune thyroid disease?  Since that is very common with Celiac, it is important to see if her thyroid issues are autoimmune in nature. They need to include that blood work the next time it is checked. It sounds like they are not treating her thyroid with hormone replacement, which is another common mistake and if her thyroid is all over the place and she is not being treated for it, that could raise tTg....but I am not sure how high it would go. Thyroid antibodies can skyrocket when the condition is left untreated but I am not sure just how high the tTg would get in untreated thyroid disease.  I have Hashimoto's myself, and Celiac, so I know the dumb things docs can do that leave the patient frustrated. Really.....they tend to wait until your thyroid is half dead before they will consider hormone replacement and that is a very bad idea.

I am so very sorry about all the stress you have all been under. Can stress make things worse?  Absolutely, but I really have no clue if it will elevate tTg to that extent. It might because that kind of stress is tremendous but you would have to rule out everything else before you could blame it on stress.  What you need to do is demand that they run the correct test for dietary compliance because that will give you the answer as to whether it's from gluten exposure or not.  If not, then the thyroid problem could be the reason.  If they are not treating her and it's spiraling out of control, plus the added stress issue, could be the answer.

Was your daughter symptomatic before diagnosis and if so, have symptoms returned?

[confused-again]

Thanks for your information.

I have checked back and in April 2015 they did full blood picture including cell counts, Haemoglobin, b12, folate, sodium, potassium, glucose, Iron, Ferritin, Transferritn, Vit D etc etc.  This is when the elevated TSH level was identified.

In July 2015  they tested, T3, T4, TSH, and Thyroid Antibodies TPO.  The results there said - A TPO result of l<50IU/ml virtually excludes the possibility of active Hashimoto's.  My daughter's was <5 IU/ml. So there wasn't much chance of Hashi's.

In Aug / Sept 2015 they tested IgA - came back Positive - 30 u/ml and (<11 is normal). Deamidated Cliadin IgA Antibody came back Negative 2u/ml and (<11 is normal). I haven't got a copy of the July Thyroid results but it fluctuated slightly but wasn't overly different. Her Thyroid Antibodies came back normal.

In Dec 2015 - her thyroid - Thyroglobin (TG) antibodies  17 u/ml (<60 normal)    Thyroid Peroxidase (TPO) antibodies 33u/ml (<60 normal). 

Her free T4 had increased slightly & is still in low normal range.  Her TSH was around the same as it has been the entire time - just slightly above normal range at 6.22 mIU/L  (0.50 - 5.00 normal).

I understand that because they have tested for thyroid 4 times now, and although her TSH was elevated slightly, it has not increased, and her T4 has been in low normal range the whole time and her T3 was actually raised. But more importantly she has never tested positive to Thyroid AutoAntibodies.  So there are no Thyroid Antibodies in her system. (Mind you both me & my husband have thyroid issues on BOTH sides of BOTH of our families) - so this is definitely something that she will need to continue to monitor into the future. However the endochronologist has said it is not the issue now and it was more to do with her starting to menstrate etc.

But from what Gemini wrote above - have they done the right tests?

So you are saying indicating that TTG also shows other autoimmune conditions, whereas the Deamidated Gliadin IgG is the accurate test for Gluten exposure.  Is that correct?

Therefore my daughter has tested in the normal range for Deamidated Gliadin IgG. So that means there is no on-going gluten reaction / exposure.  However the IgA being high is indicating some other auto immune disorder may be present.

Is that correct????

What other auto immune disorders should I ask to get her tested for?  She is EXTREMELY tired all the time and lies in her room a lot. With everything else going on, I wasn't sure if this was behavioural, normal teenager stuff, depression & anger re grandfather dying and father leaving us - or is it something else.  I was guessing if she did have underactive thyroid that would make sense, but now that that has been ruled out, I just don't know.

Diabetes - surely there would be more signs.

RA - is she too young? - surely more symptoms would be present - aching bones, or limbs etc?

What else is there?

 

[StephanieL]

Were all the labs (EVERY single one of them) run at the same laboratory?  Were they sent out to the same center or to different places?  That can change the game we have found.  There are different machines with different calibrations and what is high on one may not be on another. 

You mentioned that they aren't treating the thyroid. This would cause me concern and I would look heavily into that as well.

Honestly, with that huge of a jump I would assume the test was done incorrectly. If she got enough gluten to make her levels go that high that fast, I would assume you would see real issues with that! 

[GF-Cheetah Cub]

Confused,

I am actually on the same boat as you....confused (and frustrated) that my daughter's ttg is not normal after two years of eating a strict gluten free diet!

My daughter was diagnosed in Feb of 2014 at the age of 10.   She also has Hashimoto thyroid.

At diagnosis, she was over 100.   With our lab, our normal is under 20.  

Our whole family has decided to eat gluten-free in order to avoid contamination .   All home cooked meals are gluten-free, and my kitchen is 95% gluten-free.   We are very careful.   But after two years of doing this, my daugher's ttg has never came into normal range.   In August of 2015, our ttg was 54, (The previous ttg was 74 a few months before).   We took another blood test in November of 2015, we thought for sure it was going to be in normal range.   But no, it was 52!   Dropped by 2 points.   Upsetting.

It seems to me that celiac is a vague disease.   Even the GI doctors can't give us concrete answers, why our ttg just won't come down.

The only thing we can do is to continue eating strict gluten-free foods, and hope for the best.  

 

[StephanieL]

45 minutes ago, gluten-free-Cheetah Cub said:

 

It seems to me that celiac is a vague disease.   Even the GI doctors can't give us concrete answers, why our ttg just won't come down.

The only thing we can do is to continue eating strict gluten-free foods, and hope for the best.  

 

My kid was dx at 3.  Just turned 9 and still doesn't have a "normal" tTG.  

 

We have done EVERYTHING to try and figure it out. Tested every food I didn't know was 100%. Spoke to tons of manufacturers.  All this in a house that was 100% gluten free.  Went onto thyroid testing which was off.  Started thyroid meds.  I thought that was the trick.  Nope.  Spent thousands to take kid to the top Celiac Dr. in the country and guess what- Still no help.  

That was a year and a half ago.  His testing is still high. His Dr's say stay the course because honestly, with all we've done there isn't anything else we could do.  

Frustrating as hell for sure but I know we've done all we can to try and figure it out.  Hang in there!

[ahargan]

Please read the following articles.

Open Original Shared Link

Open Original Shared Link

These opened my eyes a LOT and has helped me so much! As one who was doing everything right and still feeling like I was getting "glutened" this was my answer.  Also, if you are looking for a practitioner that can help answer all the questions on elevated numbers, thyroid, adrenals, reversing autoimmune disease I would recommend Brie Wiesleman (briewieselman.com)  I had adrenal fatigue, low thyroid and a myriad of other health issues in addition to gluten intolerance.

I searched high and low and saw SO many doctors before I found her. She has helped me immensly and I feel like I am finely seeing light at the end of the tunnel and I am going to be able to thrive instead of just survive!

Best wishes! This is a rough road and I feel for you!

[cyclinglady]

6 minutes ago, StephanieL said:

Were all the labs (EVERY single one of them) run at the same laboratory?  Were they sent out to the same center or to different places?  That can change the game we have found.  There are different machines with different calibrations and what is high on one may not be on another. 

You mentioned that they aren't treating the thyroid. This would cause me concern and I would look heavily into that as well.

Honestly, with that huge of a jump I would assume the test was done incorrectly. If she got enough gluten to make her levels go that high that fast, I would assume you would see real issues with that! 

Good call, Stephanie regarding different labs.    I agree that her TSH is out of range.  She should be getting thyroid replacement.  The range my doctor likes to see TSH is between 1 and 3 roughly, but how I feel is just as important.  

[cyclinglady]

6 hours ago, Gemini said:

I have to ask whether or not your docs have been also re-testing the DGP or AGA/IgA or IgG to see if your daughter is actually consuming gluten?  The tTg is not the correct test to use for dietary compliance.  That tests for tissue damage and, while it will elevate back up in someone who is consuming gluten, it can be elevated from other autoimmune conditions so it is REALLY important to run the correct tests for dietary compliance.  They make this mistake all the time.

Secondly, have they treated her for her thyroid problem or tested her for Hashimoto's, which is autoimmune thyroid disease?  Since that is very common with Celiac, it is important to see if her thyroid issues are autoimmune in nature. They need to include that blood work the next time it is checked. It sounds like they are not treating her thyroid with hormone replacement, which is another common mistake and if her thyroid is all over the place and she is not being treated for it, that could raise tTg....but I am not sure how high it would go. Thyroid antibodies can skyrocket when the condition is left untreated but I am not sure just how high the tTg would get in untreated thyroid disease.  I have Hashimoto's myself, and Celiac, so I know the dumb things docs can do that leave the patient frustrated. Really.....they tend to wait until your thyroid is half dead before they will consider hormone replacement and that is a very bad idea.

I am so very sorry about all the stress you have all been under. Can stress make things worse?  Absolutely, but I really have no clue if it will elevate tTg to that extent. It might because that kind of stress is tremendous but you would have to rule out everything else before you could blame it on stress.  What you need to do is demand that they run the correct test for dietary compliance because that will give you the answer as to whether it's from gluten exposure or not.  If not, then the thyroid problem could be the reason.  If they are not treating her and it's spiraling out of control, plus the added stress issue, could be the answer.

Was your daughter symptomatic before diagnosis and if so, have symptoms returned?

This supports what Gemini said about follow-up testing and using the DGP instead of the TTG (University of Chicago).

Open Original Shared Link

[Gemini]

Hi confused again......sorry my reply took so long but I have had some irons in the fire myself so was delayed in responding.  

Oh, my!!!!!!  A TSH of 6.22 and they think she doesn't needs supplementing?  This is the usual crap people get from mainstream medicine.  They wait until you are half dead before deciding you need some thyroid hormone.  She may only need a tiny amount to bump that down and make her feel good again but she needs supplementation.  Extremely tired is the main symptom of low thyroid.  Mine was only 7 when diagnosed and I could barely get out of bed in the morning to go to work.  Is there another doctor or a functional medicine doctor she can go to who will actually help her?  I had the same problem at diagnosis...they under-supplemented me and I still had major symptoms at the dose they decided was "fine".  I ended up going to a private physician and got the help I needed.  It made all the difference in the world but I also realize that's easier said than done.

Therefore my daughter has tested in the normal range for Deamidated Gliadin IgG. So that means there is no on-going gluten reaction / exposure.  However the IgA being high is indicating some other auto immune disorder may be present.

You stated earlier in this post that your daughter was tested for DGP/IgA and it came back as a 2?  And then her DGP/IgG was also normal?  Guess what?  A 2 is phenomenal and means she is not getting gluten in her diet. Both versions were normal?  The lower the number on this test is crucial because the lower the number, the better you are doing on the diet.  I am not a doctor but have had Hashi's for 25 years and Celiac for 11 years and I would bet a month's pay her tTg will not come down because her TSH is 6.22. That needs to be addressed.  She may not have full blown thyroid disease yet because she is young but if they do not treat it, it may continue to get worse and she will be tired all the time. Sometimes the thyroid goes a bit wonky because of the inflammation caused by Celiac and can straighten itself out with time on the gluten-free diet but she has been gluten free for almost 3 years. The doctors are not doing their job well.  They could start her out on the tiniest dose available and work up from there.  It does not take much to feel better when supplementation begins.  Sometimes it takes a while before the T3 and T4 nosedive after the TSH rises.....but you will not hear that from a doctor.

Sorry you are having this much trouble but most of us have been there with the same issue.