Oh Good Lord- Tests, Labs And Bs

[StephanieL]

Here's the quick version:  started with a 2 1/2 year old.

 

-Super low Vit. D (it was at 7 or something, normal low was 35)  Sent to Endo.

-Endo does Celiac blood work.  122 tTG. Sends us to GI

-2 GI's (I wanted a second opinion) scoped-  Scope is negative for Celiac.  Dr. Fasano said we can go gluten-free and see what happens or scope every 6 months. 

-Do genetics  DQ 2.5 positive

-gluten-free July 4th 2009.

-tTG fall but don't ever hit normal except once.  Went through and tested suspect foods and also found thyroid issues.  That was in 2011.

-tTG's STILL not normal.  Head to "The Celiac Dr."

-After dropping $3000 for the trip and all associated things, they say "Oh it's been 8 months since last tTG.  Get a new one BUT send it to The Mayo Clinic.

-Send blood work to They Mayo

 

 

 

TOTALLY NORMAL.

 

So how/why would labs be wrong for 4 YEARS?  These were drawn at different places. Not sure who processed them all but I'm at a loss and totally confused.  Were the first labs even right?  Should we have even done any of this?  Any insight is welcome or Thanks for letting me vent.  I'm sure I'll get a call next week that they want a 6-8 week minimum challenge and a scope at the end of that.   Not sure what I think.  Just beyond frustrated!

 

[bartfull]

I have no answer for you but if I post on your thread it'll go back to the top where people who know more about testing will see it. I hope you get some answers.

[nvsmom]

Yuck.  

Well, the endoscopic biopsy misses up to 1 in 5 celiacs. You have a positive tTG IgA which has a false positive rate (weak positives) of only 5%, so I would be inclined to go with your tTG IgA test and assume that you are a celiac.  The biopsy either missed the damage or you are a latent celiac, meaning that you have the positive auto-antibodies but the damage in the intestines has not progressed enough to be detectable - it is assumed that if you keep eating gluten that your intestinal damage will eventually get severe enough for you yto be considered a "true" celiac".... This info was from my interpretation of reading Dr Fasano's books so I'm surprised he didn't tell you this.  Well, I guess he sort of did by telling you to go gluten-free or get scoped in 6 months when the damage has progressed. 

 

Your thyroid issues can mess your tTG IgA, and if you were gluten-free, then I am assuming your thyroid issues affected your tTG IgA. I too have thyroiditis and as far as I know, my tTG IgA has never hit normal.  The last time it was checked was when I was gluten-free for over a year. The upper limit for normal was 20 and I was at 40, 30 something and a high 20. It finally went down to 20.9 when I was on steroids for an unrelated issue so I'm curious if it has gone back up now that I am steroid free.

 

Now, you finally had a normal test... I can't remember, are you on the gluten-free diet now?  If so, great! Your auto-antibodies FINALLY came down to normal.  If you are eating gluten, I would guess the negative was a fluke.  112 is a high result and it is REALLY doubtful that something other than celiac disease could cause that, IMHO.

 

Why are you still testing? I aks this sincerely and not to sound sarcastic, but I am curious why you doubt you have celiac disease.

[StephanieL]

This is all my sons stuff.  He's 7.  We continue to test the tTG's because they have never hit normal. They thyroid issue was dx about 2 years ago. Again I thought that would bring down his tTG's to normal but again, they didn't....or did they and the tests being done over 4 years have all be done wrong?

 

He's been gluten free since he was 3.5 so about 1/2 his life now.  

 

I don't really doubt it's Celiac. I doubt the labs though. How does our lab say he's high for 4 years then they are sent to a different lab and zero?  That doesn't seem like it makes any sense to me at all. As I said, nothing has changed. Not removing any food. Not changing any drugs. Not anything different at school.  I find it really hard to believe that they all of the sudden dropped FINALLY after 4 years coincidentally when there was a change in laboratories???  Seems very suspicious.  

 

I do know all about biopsies.  My son was 3 when he had his so I am not overly surprised that they didn't find anything.  I am just waiting on the call saying to do a challenge so they can get their precious Golden Standard scope. 

[BlessedMommy]

Does your son have bad reactions when he gets glutened? Depending on the severity of his response to gluten, that may be a piece of the puzzle as well.

 

If he gets really sick when he gets glutened, doing a gluten challenge may not be feasible.

 

I'm really sorry that you're having to go through all this on top of all of your son's severe food allergies.  I hope that you get a resolution soon. 

[StephanieL]

He got a hold of my nieces sandwich when he was about 3 months gluten-free. He had maybe 2 bites and was up screaming in pain all night.  

 

Not sure how they explain that one because Dr. Fasano doesn't see how that could have been a reaction to the gluten. 

 

And Thanks.  It's so hard and I feel like I have put him through so much already and am not sure what the heck the next steps will be.  Just so frustrated

[BlessedMommy]

So the reason why they're questioning the celiac DX is because of the thyroid issues possibly raising the Ttg?

[nvsmom]

This is all my sons stuff.  He's 7.  We continue to test the tTG's because they have never hit normal. They thyroid issue was dx about 2 years ago. Again I thought that would bring down his tTG's to normal but again, they didn't....or did they and the tests being done over 4 years have all be done wrong?

 

He's been gluten free since he was 3.5 so about 1/2 his life now.  

 

I don't really doubt it's Celiac. I doubt the labs though. How does our lab say he's high for 4 years then they are sent to a different lab and zero?  That doesn't seem like it makes any sense to me at all. As I said, nothing has changed. Not removing any food. Not changing any drugs. Not anything different at school.  I find it really hard to believe that they all of the sudden dropped FINALLY after 4 years coincidentally when there was a change in laboratories???  Seems very suspicious.  

 

I do know all about biopsies.  My son was 3 when he had his so I am not overly surprised that they didn't find anything.  I am just waiting on the call saying to do a challenge so they can get their precious Golden Standard scope. 

 

Oh sorry!  I missed that. Oops.

 

That does seem a bit weird that the tTG IgA suddenly drops to normal at a new lab. My guess is his body finally calmed down, or the autoimmune attack on his thyroid (I'm guessing he has Hashi's?) decreased. I know thyroid stuff can vary wildly for no real reason.  I've seen my TSH vary by over 50% in just 2 weeks time. Maybe that is throwing it off? I'm guessing.

 

If he is gluten-free, doing well on the diet, and you know he (most likely) has celiac disease, why do you think they'll want to scope him?  Is that something you wish to pursue for other health reasons?

 

(hugs) It's tough with kids. We want to make it all better now... I understand some of your frustration - I have three gluten-free boys myself. Hang in there.

[StephanieL]

It's totally my assumption that they will want to challenge and scope.  The Dr. is only in on Thursdays so I most likely won't know anything from them till late in the week.  We have an appt. with a new local GI here on Monday.  I am wondering if I have them run the labs again what they would read.  Perhaps that's more for my wanting an answer than anything.  

 

Sure, it could be that his labs have finally hit normal but it seems super coincidental that it would take till right now.  It just doesn't seem like that could really be it.  I can't help but wonder though if the labs are messing it up somehow and if they've been messing it up for a while, what are others people doing that have wacky numbers. 

 

I am very happy that the levels are normal.  I am thrilled! It means we are doing it right and don't need to be concerned with something else AI going on which was my real worry BUT I can't help but be completely puzzled by this. 

[Georgia-guy]

To solve the puzzle of his labs being normal now after 4 years, see if the same lab was used every time before you used mayo clinic (the doc should have that info, may take a couple days if it's from different docs ordering the blood work). But as far as seeing if the normal doc is having inaccurate lab results, go ahead and have them draw the blood Monday when you go in, it won't hurt anything.

[SMRI]

Your lab results are only as good as the people performing the tests....how experienced are they at the lab that had the high results?  Have they run a full immune panel on him to see if his total IgG and IgA levels are normal?  Can you just take him to Mayo for a complete work-up to see if maybe something else is going on?

[StephanieL]

The labs were drawn at several labs and many were preformed at the same lab.  I don't know that they were all done at the same lab thought.  It's been at least 4 different labs that we went to but where they sent them I need to look into. 

 

SMRI, full panels were run. Totals were fine and WNL.  I am not talking him on another wild goose chase out to Mayo. We did that one by going to Boston already this year (and we chose Boston to see THE Celiac guy.)

[SMRI]

The labs were drawn at several labs and many were preformed at the same lab.  I don't know that they were all done at the same lab thought.  It's been at least 4 different labs that we went to but where they sent them I need to look into. 

 

SMRI, full panels were run. Totals were fine and WNL.  I am not talking him on another wild goose chase out to Mayo. We did that one by going to Boston already this year (and we chose Boston to see THE Celiac guy.)

 

I guess the point of going to Mayo is maybe you are barking up the wrong tree so to speak and maybe something else is causing the issues.  Going to a GI specialist is fine, but what if it's something else causing GI issues that they don't look for?  What was his IgG subclass 3 level?  That can cause a whole host of GI issues but not be Celiac, for example, and it would cause the low tTG, even if his overall IgG levels are normal because that is a small subclass number.  I guess the benefit of going to Mayo is that not only will you see the GI team but you will see the endo and the cardiologist and the dermatologist and the nephrogist and whatever you need all at one time, in one place.

[StephanieL]

He's not sick  The only thing I was worried about was WHY the numbers weren't coming down while on a gluten-free diet for 4 years and why he is not gaining a single oz.   There aren't any other worries which is why I say we don't need to go to Mayo. We have a lot of immunity issues with him and I just needed confirmation that there isn't another AI issue going on or something.  If he were acting ill, I may consider something like going to Mayo but that's not the case.

 

I do want to figure out why these labs are so screwy but I have a feeling it will forever remain a mystery which is frustrating. I don't like things that don't fit and this just doesn't fit IMHO.

[SMRI]

He's not sick  The only thing I was worried about was WHY the numbers weren't coming down while on a gluten-free diet for 4 years and why he is not gaining a single oz.   There aren't any other worries which is why I say we don't need to go to Mayo. We have a lot of immunity issues with him and I just needed confirmation that there isn't another AI issue going on or something.  If he were acting ill, I may consider something like going to Mayo but that's not the case.

 

I do want to figure out why these labs are so screwy but I have a feeling it will forever remain a mystery which is frustrating. I don't like things that don't fit and this just doesn't fit IMHO.

 

But a lowered IgG subclass 3 could explain all of that.  Doesn't mean he has to be "sick", but if he's not growing, not gaining weight and his labs come back wonky, he is "sick", just not acutely.  My daughter is immune compromised and most of the time she is perfectly "healthy"....except if she gets a cold and she needs to go on antibiotics right away to prevent getting REALLY sick.

[nvsmom]

It's totally my assumption that they will want to challenge and scope.  The Dr. is only in on Thursdays so I most likely won't know anything from them till late in the week.  We have an appt. with a new local GI here on Monday.  I am wondering if I have them run the labs again what they would read.  Perhaps that's more for my wanting an answer than anything.  

 

Sure, it could be that his labs have finally hit normal but it seems super coincidental that it would take till right now.  It just doesn't seem like that could really be it.  I can't help but wonder though if the labs are messing it up somehow and if they've been messing it up for a while, what are others people doing that have wacky numbers. 

 

I am very happy that the levels are normal.  I am thrilled! It means we are doing it right and don't need to be concerned with something else AI going on which was my real worry BUT I can't help but be completely puzzled by this. 

 

Waiting for results and appointments is such a frustrating thing! Hurry up and wait - it drove me batty.

 

The false positive causes of a (slightly)elevated tTG IgA is crohn's & colitis (both could have shown up on a scope), diabetes, chronic liver disease, thyroiditis, and a serious infection (stomach viruses and possibly Lyme - from what I have observed).  Those are the only causes that I know about but I am sure that there is a bit more.  My guess is that you are doing it right and the numbers finally dropped because of that, and because his thyroid was not under attack when the testing occurred.  

 

It is a coincidence, and I don't trust them either, but I've got my fingers crossed that that is all you are dealing with.  

 

My second guess is that the past labs were reading a bit high, in which case you are still doing the right thing, and it was recovering celiac disease and thyroiditis that that put his numbers at high normal but the labs messed that up a bit... This would be a good option too.

 

Best of luck with the doctor.  

[Gemini]

Well......you know where I stand on this, Stephanie. I do not think it is abnormal for it to take his tTg this long to become normal again, considering he has Celiac and Hashi's. He has the bad celiac gene too, like I do. That would explain such a high tTg at the outset, for someone so young. I just do not believe that 4 years of blood work could be wrong. Maybe one lab could be wrong but not all of the tests you ran over 4 years. This is the type of stuff that confuses doctors, because they are used to their own model of what is normal for AI disease.

As far as your DS being thin, well....so am I. I have both diseases also, as you know. Having both will not give you the same result as someone with just Celiac only. It is not easy to get the thyroid to a place where it is functioning as well as it can be. It takes time. I am also active.....very active, so my weight is very stable, although I am still thin. I am not underweight but on the low end of the scale for my height. I am healthy but am never going to have a weight problem. Your son is young and may be just burning off all his calories. I am thinking that when he reaches puberty, and his hormones kick in, that will change his body and he will put on weight. Sometimes it takes testosterone to kick in before that happens in a boy.

It is such a tough decision on whether or not to do a challenge but if it were me, and I was healthy and not sick all the time, I might just bag it and stay gluten-free. Keep track of his thyroid and his celiac numbers and don't worry about it unless there is a change for the worse.......which is not likely at this point. I have to say I am really disappointed in Fasano this time. DS has the bad Celiac gene, had really elevated tTg at time of diagnosis and it came down after a time on the gluten-free diet so what is there not to believe about this? It is highly doubtful any doctor will find damage on one so young who is under 5 years old at time of original scoping. And people wonder I am skeptical of doctors in general........

I know this is driving you crazy and rightfully so. But I would go with your gut instinct on this because the medical profession are just not thinking as clearly as they should. I think they have kind of jerked you around a bit.......like they did with me for years. It just should not be this hard for them to figure it all out. I think you have done a stellar job of that yourself but he is your son and the motivation level is much higher.

[nvsmom]

Really well said.

[Gemini]

Really well said.

.....and I was going to say the same thing about your posts, Nicole! 

 

It's hard, because people are lead to believe that doctors always know best and sometimes they just don't. Not when it comes to chronic disease.  If I hadn't been so stubborn and headstrong, and read as much as I could about these 2 conditions, I would not be as healthy as I am today.  It is hard work stabilizing thyroid and celiac and getting them to play well together.  And it seems to happen all at once......at some point, the inflammation settles down and things get better and you never know at what point that will be.

When that happened for me, and my gut started to absorb again, I went seriously hyper and then that took a year to figure out and settle in with the lower dose of thyroid hormone.  I am pretty stable at this point but even after 9 years gluten-free, I have to keep track of my thyroid often because sometimes your needs go up and down and it has to be dealt with in pill form....your body doesn't have the ability to call for more and have it delivered automatically.

 

Hashi's is, I believe, one of the most common AI dieseases to occur along with Celiac, aside from Type 1 diabetes.  The inflammation from celiac subsided long before the inflammation in my thyroid settled down. The old domino affect.  For what it's worth, my thyroid antibodies took 8 years to go from 1200 down to normal range...which is 40 or below with the lab I use.  I thought it would never happen.  Same with my tTg....it took about 2 years for my blood work to get into the normal range and I wasn't happy until it was low normal.  My thyroid disease was interfering with my tTg levels.  It certainly taught me to be more patient.  But I can understand the frustration of dealing with this when it is your child.

[StephanieL]

So we went to a Dr. here at home yesterday (I needed to find one here on the off chance that we needed to do a scope/challenge or whatever).  He agrees that it's unusual that his levels mystically are WNL after 4 years when sent off to another lab. He ordered new labs and we had them drawn yesterday. I am really interested in what they have to day.

 

He isn't in any doubt that it's Celiac.  Said to keep doing what we are doing so that's good. Right?

 

As for his weight- The Dr. is concerned.  He talked about appetite enhancers but I am not SO worried as to add something like that. He did say we could try a nutritional supplement called Splash (like Ensure but safe with his allergies and all). They gave us 6 samples. I was warned by some other Mom's that it isn't very good but DS loved it.  Now the think is- 1 small drink box is (really for this???)  $6.25. 

 

 

Dr. said something about 3 per DAY.     How in the world on top of feeding these people are we going to come up with over $500/month for these?  Are they serious?  Now before you say add this and that, we've tried all that. Adding fats to everything and feeding him whatever he wants. They asked us to bribe him to eat more which I WON'T do.  So you can all keep those opinions to yourself I have heard it all and we've tried it all and it just doesn't work so I'm not interested! lol

 

As I said, I haven't ever really doubted the dx. It's the labs and his weight and worrying about another AI that we were missing that had/have me worried. 

 

Thanks again for letting me vent and yell about life!! lol

[bartfull]

You know, when I was a kid I was really sickly and underweight. My mom started giving me (at the suggestion of the doctor) a "medicine to make me hungry". I of course believed everything my Mom told me at that age, so I started eating a lot because the placebo effect really did make me hungry.

[StephanieL]

You know, when I was a kid I was really sickly and underweight. My mom started giving me (at the suggestion of the doctor) a "medicine to make me hungry". I of course believed everything my Mom told me at that age, so I started eating a lot because the placebo effect really did make me hungry.

lol Interesting!  I'll have to think about that!  

 

That's one slick Mama there!

[nvsmom]

You know, when I was a kid I was really sickly and underweight. My mom started giving me (at the suggestion of the doctor) a "medicine to make me hungry". I of course believed everything my Mom told me at that age, so I started eating a lot because the placebo effect really did make me hungry.

LOL With my 7 year old, I would have to tell him it will diminish his appetite and then maybe he would eat more.... My little turkey.

[Gemini]

I guess that medical marijuana is out of the question?  I'm thinking pot brownies?  

 

After seeing those photos you posted of your trip to Boston, I guess I am not in total agreement that DS's weight is a huge issue.  People think I am too thin but I am at least on the weight charts now, for my height.  Smaller/thinner people are not as much of the norm today so we stand out more. My criteria is whether or not a person is sickly or well all the time.  I never even catch colds anymore so my lower weight is not something I worry about.  Besides, I think once DS hits puberty, like I said before, he may catch up weight wise.  I totally agree that bribing a child to eat more is stupid and I wouldn't do it either.  I wouldn't spend that much on supplemental drinks.  Maybe one a day but you can't go broke on something he may not need 3 of.

 

I guess where I am in total disagreement about is the tTg testing results being questionable because they came back normal after 4 years.  Really...this is how celiac and a combo of other AI diseases work and doctors are not going to know this unless they have them also.  Really....at what point will they go normal? That is a crap shoot with healing.  Especially with Hashi's and Celiac.  Both affect tTg numbers so you have 2 things to heal to attain normalcy.  If DS seems healthy and is not having issues, I would just keep an eye on things for awhile and monitor his health, like you have been doing such a good job at since day 1, Stephanie.  At least this doc does not doubt the celiac diagnosis! That is a biggie!