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Results All In - Still Confused...

brit16

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brit16 Rookie
brit16
Posted

All the results for our 19 month old son are in, and we are still left with no answers. His symptoms are no weight gain for about 6 months ( but no weight loss) and on and off diarrhea, green stools, etc.

Test results:

- ttg igG 7.5 with less than 6 being normal ("borderline positive")

- total iga 19 normal being above 24 ( low iga)

- reducing substances positive ( lactose intolerant)

- biopsy negative ( took 4 samples - said everything looked clean)

- celiac DNA test positive

- ttg iga negative ( not accurate because of low iga)

So now we are told to wait six months and repeat biopsy. In the meantime we were told we could try the diet now, for a few months, then put him back on leading up to biopsy, or just wait and do nothing. It seems like a long time to just wait.....

Dr says he is not celiac because of the clean biopsy and that the high igG could have just been an infection. Any opinions?? It is hard to go through all the testing and still not know anything.

Also, he did numerous other test which all came back normal. ( parasites, white blood cell, cystic fibrosis....)

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StephanieL Enthusiast
StephanieL
Posted

Is he nursing (grin poop- formilk hind milk issues) ? Just hitting major milestones (extra calories for extra activity)?

 

Honestly Celiac isn't the first thing that would pop in my head with that. Now with the IgA deficiency that does throw a monkey wrench into things.  Being positive for the gene isn't really that telling for anything other than that Celiac is a POSSIBILITY.

 

Give what you told and the desire to redo the scope, I (as a Mom) would not change his diet.  If they are going to re do the scope AND redo it PROPERLY ( 4 samples are not sufficient) I would much rather it be done correctly while on a gluten containing diet.  

 

If all the other tests are good and there are no vitamin deficiencies or anything going on I would really not change anything till there was a proper scope.  Take that from someone who is basically living this now after 4 years on the gluten-free diet and there still being issues BUT also follow your gut Mama!! 

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BlessedMommy Rising Star
BlessedMommy
Posted

Do they have an explanation as to what type of infection could cause the elevated TTG?

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nvsmom Community Regular
nvsmom
Posted

The reason the doctors want to repeat the biopsy is because they think it might be celiac disease but they didn't find the proof. They need more damage to happen during the next 6 months before they try again to find the damage in a biopsy. For someone who probably has celiac disease, that just seems cruel to me.  :(

 

He has a positive tTG IgG. That test is 95% specific to celiac disease; that means that out of 100 positive tests, only 5 have positive results caused by something else, and in the tTG IgA I know those causes are diabetes, crohn's, colitis, thyroiditis, liver disease, or serious infections... Does he have any of those things?  I don't know why the doctor would assume it is just an infection when chances are (95% chance) that it is celiac disease!

 

In fact, he is lucky that the tTG IgG even caught him. The sensitivity of the tTG IgG is only 40%, so it regularly misses 60% of celiacs.

 

This website is where I got my info:

Open Original Shared Link

Here's a site on pediatric cases:

Open Original Shared Link

And more info on testing (pages 8-12) including the Marsh scores of the biopsy - do you have his results?  Were they perfect or did they show Marsh 1 or 2 damage?

Open Original Shared Link

 

Can you get one more blood test?  The DGP IgG (deaminated gliadin peptides) is a new test and it is noted to be the superior test for detecting celiac disease in toddlers. The sensitivity is 70-95% so it has a pretty good chance of catching celiac disease, and it's specificity is as close top 100% as you can get. If he has a positive DGP IgG, celiac disease is a sure thing.

 

If you redo the biopsy in 6 months, the gluten challenge requirements for an adult are 1-2 slices of bread per day, or equivalent, for 2-4 weeks prior to the procedure. If blood tests are done at that time, he'll need to do the gluten challenge for 8-12 weeks instead (3 months).  

 

I would try the gluten-free for 3 months and then reintroduce gluten for blood tests, or go gluten-free for 5 months and then reintroduce gluten for the biopsy.  Keep a symptom and food journal for him. Take note of any changes. If things improve, that is an answer right there. If you retest, I would do the blood tests again (if he can hack 3 months on gluten) along with the biopsy.  When the biopsy is done, make sure at least 6 samples are taken; celiac damage can be spotty so taking more samples makes it more likely the disease will be caught.

 

I believe that right now, Dr Fasano (a leading celiac disease researcher) suggests that a celiac meet 4 out of 5 of this diagnostic criteria:

  1. Celiac symptoms.
  2. Positive blood tests.
  3. Positive genetic tests.
  4. Positive Biopsy.
  5. Improvement of symptoms on the gluten-free diet.

Right now he has met 3 criteria. If he improves on the gluten-free diet, that's 4 and that is celiac disease.  Keep in mind, this is just a doctor's way of sorting us patients. I did not have a biopsy or genetic testing but that doesn't change the fact that I have celiac disease.  LOL ;)

 

And knowing celiac disease is a gentic disease, you should probably get the rest of the family tested - not all celacs are symptomatic.

 

Good luck with whatever you decide to do.

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brit16 Rookie
brit16
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Posted

The reason the doctors want to repeat the biopsy is because they think it might be celiac disease but they didn't find the proof. They need more damage to happen during the next 6 months before they try again to find the damage in a biopsy. For someone who probably has celiac disease, that just seems cruel to me.  :(

 

He has a positive tTG IgG. That test is 95% specific to celiac disease; that means that out of 100 positive tests, only 5 have positive results caused by something else, and in the tTG IgA I know those causes are diabetes, crohn's, colitis, thyroiditis, liver disease, or serious infections... Does he have any of those things?  I don't know why the doctor would assume it is just an infection when chances are (95% chance) that it is celiac disease!

 

In fact, he is lucky that the tTG IgG even caught him. The sensitivity of the tTG IgG is only 40%, so it regularly misses 60% of celiacs.

 

This website is where I got my info:

Open Original Shared Link

Here's a site on pediatric cases:

Open Original Shared Link

And more info on testing (pages 8-12) including the Marsh scores of the biopsy - do you have his results?  Were they perfect or did they show Marsh 1 or 2 damage?

Open Original Shared Link

 

Can you get one more blood test?  The DGP IgG (deaminated gliadin peptides) is a new test and it is noted to be the superior test for detecting celiac disease in toddlers. The sensitivity is 70-95% so it has a pretty good chance of catching celiac disease, and it's specificity is as close top 100% as you can get. If he has a positive DGP IgG, celiac disease is a sure thing.

 

If you redo the biopsy in 6 months, the gluten challenge requirements for an adult are 1-2 slices of bread per day, or equivalent, for 2-4 weeks prior to the procedure. If blood tests are done at that time, he'll need to do the gluten challenge for 8-12 weeks instead (3 months).  

 

I would try the gluten-free for 3 months and then reintroduce gluten for blood tests, or go gluten-free for 5 months and then reintroduce gluten for the biopsy.  Keep a symptom and food journal for him. Take note of any changes. If things improve, that is an answer right there. If you retest, I would do the blood tests again (if he can hack 3 months on gluten) along with the biopsy.  When the biopsy is done, make sure at least 6 samples are taken; celiac damage can be spotty so taking more samples makes it more likely the disease will be caught.

 

I believe that right now, Dr Fasano (a leading celiac disease researcher) suggests that a celiac meet 4 out of 5 of this diagnostic criteria:

  • Celiac symptoms.
  • Positive blood tests.
  • Positive genetic tests.
  • Positive Biopsy.
  • Improvement of symptoms on the gluten-free diet.
Right now he has met 3 criteria. If he improves on the gluten-free diet, that's 4 and that is celiac disease.  Keep in mind, this is just a doctor's way of sorting us patients. I did not have a biopsy or genetic testing but that doesn't change the fact that I have celiac disease.  LOL ;)

 

And knowing celiac disease is a gentic disease, you should probably get the rest of the family tested - not all celacs are symptomatic.

 

Good luck with whatever you decide to do.

Thank you so much for your thorough response. It was very helpful. I'm not sure why he seems to not be taking the igG test to mean anything, I think it is because it was a low positive. He told me he was going to repeat the test, but ended up doing the iga instead. ( before we knew he had low total iga) I was hoping he would repeat the ttg igG but when I asked he said " we don't do that test because it's not as specific to celiac" which doesn't sound like it is true.

He gave me a picture of the biopsy, but no, I don't have a copy of any results. He just said they were "crystal clear". I'm not sure if he would do that get or not. Is it something I could ask my normal pediatrician to do?

We have decided to go ahead and try the diet for 2-3 months and see what happens. I went and had him weighed today and he had gained weight, but t wasn't the same scale they used the last time, so I'm not real sure if he actually gained weight, or it was just difference in scales.

Thanks again for all. The help!

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brit16 Rookie
brit16
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Posted

Do they have an explanation as to what type of infection could cause the elevated TTG?

No, no explanation. He just says that test isn't specific, and it could be just an infection.... If he had some bad infection shouldn't it be treated? I just don't get why he is blowing off that result?

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nvsmom Community Regular
nvsmom
Posted

I you get a copy of the biopsy report, you could start a new thread in the per diagnosis board and some people there can help you interpret the results. Some of them have done a lot of research and reading in that area.

Best of luck with the diet. Try to keep a journal too as some celiac symptoms change so slowly that you hardly notice it until you look back on how things used to be.

Best wishes. :)

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StephanieL Enthusiast
StephanieL
Posted

I don't understand why you would try the gluten-free diet for 3 months (which could mean healing if it is Celiac) and then reintroducing it for a biopsy in another 3.  Why not stay on gluten for 3 more months and scope then and THEN try the gluten-free diet?  If there is the start of healing during the 3 month trial then going back on may mean you have to redo 3 months of damage which is where you are now, no?

 

Also, Dr. Fasano doesn't always practice what he says about that 4 out of 5 ;)

 

(OP- I am not questioning you or whatever decision you make, I am genuinely interested in the theory here!)

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GottaSki Mentor
GottaSki
Posted

Welcome!

Has there been DGP-IgG or AGA-IgG blood tests run. Given the IgA deficiency I would highly suggest completing the IgG based tests. Together with positive tTG-IgG, positive gene and symptoms it paints a picture of celiac.

Once the blood has been drawn, then remove gluten. At that age, if gluten is causing symptoms you should see improvement quickly.

Also, as Nicole mentioned - request written or electronic copies of both the procedural AND pathology reports from the endo...these reports often include valuable information that is not significant unless considered in the context of serology and symptoms.

Hang in there...sounds like you are on the right track :)

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GottaSki Mentor
GottaSki
Posted

Ps...additionally have there been any nutrient tests, Complete Blood Count (CBC) or Comprehensive Metobolic Panel (CMP)?

These can be important pieces of the puzzle.

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BlessedMommy Rising Star
BlessedMommy
Posted

No, no explanation. He just says that test isn't specific, and it could be just an infection.... If he had some bad infection shouldn't it be treated? I just don't get why he is blowing off that result?

My thoughts exactly. If your kid has an infection, then it needs to be treated. They ought to be trouble shooting to figure out the infection, if they genuinely think that's what caused the elevated Ttg.

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brit16 Rookie
brit16
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Posted

I don't understand why you would try the gluten-free diet for 3 months (which could mean healing if it is Celiac) and then reintroducing it for a biopsy in another 3.  Why not stay on gluten for 3 more months and scope then and THEN try the gluten-free diet?  If there is the start of healing during the 3 month trial then going back on may mean you have to redo 3 months of damage which is where you are now, no?

 

Also, Dr. Fasano doesn't always practice what he says about that 4 out of 5 ;)

 

(OP- I am not questioning you or whatever decision you make, I am genuinely interested in the theory here!)

The GI will not repeat the biopsy for six more months. For us as parents, six months just seemed like a long time to do nothing. We were also thinking if there was an obvious change maybe he could be diagnosed without having to go through another biopsy.

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brit16 Rookie
brit16
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Posted

Ps...additionally have there been any nutrient tests, Complete Blood Count (CBC) or Comprehensive Metobolic Panel (CMP)?

These can be important pieces of the puzzle.

I don't think so, I know there was a white blood cell count, the total iga (which I asked for), the celiac DNA test, and numerous stool test looking for malabsorption. What do these test tell you, sorry for the ignorance?

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brit16 Rookie
brit16
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Posted

Welcome!

Has there been DGP-IgG or AGA-IgG blood tests run. Given the IgA deficiency I would highly suggest completing the IgG based tests. Together with positive tTG-IgG, positive gene and symptoms it paints a picture of celiac.

Once the blood has been drawn, then remove gluten. At that age, if gluten is causing symptoms you should see improvement quickly.

Also, as Nicole mentioned - request written or electronic copies of both the procedural AND pathology reports from the endo...these reports often include valuable information that is not significant unless considered in the context of serology and symptoms.

Hang in there...sounds like you are on the right track :)

Who would I asked for these test? The GI or ped? The GI has said he has ran everything he can run, now we just wait ad see. We already took him off gluten, but it has only been a day and a half.

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nvsmom Community Regular
nvsmom
Posted

Your regular doctor should be able to order them, but if you see the GI, the GI should know them.

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GottaSki Mentor
GottaSki
Posted

Who would I asked for these test? The GI or ped? The GI has said he has ran everything he can run, now we just wait ad see. We already took him off gluten, but it has only been a day and a half.

 

Any doctor can order...I'd go with the Ped.

 

DGP-IgG  Deamidated Gliadin Peptide IgG

 

I would have him/her run the DGP IgA as well.  Since your child tested IgA deficient..the test will likely be negative, but if positive is very telling.

 

Hang in there...the testing mechanisms coupled with our doctors lack of complete understanding of same is frustrating.

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