So Now What?

[Sesara]

I know that I posted on my other thread about this, but I was hoping maybe some people had more in depth suggestions about what they would be doing next in my situation.

So - initial incomplete Celiac panel was negative.

Bloodwork showed some evidence of upper GI bleeding, malnutrition, inflammatory response, and borderline anemia, but was mostly just barely within normal levels.

Biopsy showed elevated levels of intraepethelial lymphocytes, but no blunting or furrowing. Biopsy also showed evidence of chronic acid reflux inflammation.

At our last appointment, the Celiac plus panel was ordered from Prometheus; however, we had been gluten free for a week which may give us totally normal results on the full Celiac bloodwork that was ordered.

Pediatric GI also wants us to meet with a dietician, but the appointment is scheduled for the 21st, after his panel comes back - I assume he's waiting to see what the bloodwork tells him (again, likely to be negative).

At that appointment, it was suggested to me that perhaps our problem is that I am not feeding him enough calories, so I am assuming that if the bloodwork comes back negative, they will be blaming his failure to thrive diagnosis on me and my supposed inability to feed him properly, which is why the appointment is after the bloodwork. The doctor told me at the appointment that I should be giving him pediasure instead of water.

So I guess my questions are - if the doctor refuses to diagnose, should I seek a second opinion? I am more than happy to try - University of Chicago is only three hours away from us and would be my first choice; I'm just not sure how willing anyone will be to diagnose him based on his biopsy, symptoms, and possibly a positive genetic test.

The other question I have is about his diet. I KNOW that he is not underfed, and I'm keeping a food diary from now until our appointment to basically prove it. However, between his 18 month appointment, when he was in the 8th percentile and his pediatrician brushed it off, and his last appointment, when he weighed in the 2nd percentile, I am VERY concerned about his weight. I just don't think giving him Pediasure is the way to go - it contains dairy and soy, and I am trying to keep him lactose free for a couple weeks while his intestines heal, since it seems to bother him. Additionally, I don't think it's a great choice when you have a kid that will eat plenty; going gluten free has had minimal effect on his food choices at home since I give him Udi's bread and Glutino pretzels where he used to eat regular versions. And I'd rather have him eating real foods that I just add healthy fats to, rather than processed and sweetened junk. I'm sure Pediasure is great for filling in the gaps for kids who are having a hard time adjusting, I just don't really think his diet has a lot of gaps and he eats all the time, so I'd be concerned that all Pediasure would do is fill him up at the expense of foods that have more nutritional value and could irritate his gut.

So would you give a good eater Pediasure just to try to get more calories into them, rather than real food?

[MitziG]

No, I would not. Since you are keeping a food diary, that should be sufficient evidence of calories. Heck, give him gluten-free cake for breakfast if he wants it! a lot of gluten-free foods are heavy on salt, sugar and calories anyway, which in his case may be beneficial. If the doc questions it, you can say the Pediasure upset his stomach- it probably does!

I would definitely try to get him in to the UofC though.

[Cara in Boston]

I would not give it to my child. It is not a healthy solution. Kids should not require things like pediasure daily to be healthy. I also don't believe kids should just be treated with meds for reflux, eczema, constipation, etc. Doctors should be looking for the CAUSE and not just treating the SYMPTOMS.

It sounds like you are totally on top of his diet. Something is getting in the way of his absorption. Even though the tests came back negative, there is no reason to not try the gluten free diet. If you are wrong, it won't cause any harm or further damage . . . if you are right, and you see improvement, then GREAT.

I would just add things like full fat yogurt, avocados, coconut oil, peanut butter, etc. to his diet (make lots of smoothies) and keep him gluten free.

Keep doing the logs . . . maybe you will even see improvement by the time you see the nutritionist.

Cara

[deb445]

I second what MitziG & Cara have suggested. Great

ideas.

...and I am so glad to hear of other mom's who are following their instincts, looking for ROOT cause,

and encouraging their children to eat REAL food.

If your little one is ill - something is out of

balance in their body. Pediasure is not natural - so I wonder how can it assist the body in finding balance, and healing?

Also, a quick note about the growth chart doctors are

using - what data is the basis for this chart?

[Sesara]

I second what MitziG & Cara have suggested. Great

ideas.

...and I am so glad to hear of other mom's who are following their instincts, looking for ROOT cause,

and encouraging their children to eat REAL food.

If your little one is ill - something is out of

balance in their body. Pediasure is not natural - so I wonder how can it assist the body in finding balance, and healing?

Also, a quick note about the growth chart doctors are

using - what data is the basis for this chart?

I was just informed by other moms who have dealt with this doctor on a local Celiac group that my pediatric GI is often reluctant to diagnose because of "how difficult it is to adhere to the diet". He said basically the same thing to me. Ugh. Yes, let's just keep poisoning my child because it might be harder for me to NOT poison him.

I don't honestly know what the growth chart is, and yes, I know there's a difference between formula and breastfed kids, and WHO vs. AAP, but at the same time, the reason I had in the very beginning for worrying was the way his height and weight had stalled out - that was before the chronic diarrhea started. He has only gained about 2.5 lbs in the past year. Whatever chart he was on at the pediatricians, he was 80th percentile at 6 months and 8th percentile on the same chart at 18 months. So him being in the 2nd percentile 4 months later is unsurprising to me. It's what I've been afraid of all this time - that he was going to end up failure to thrive.

[VydorScope]

Not long ago I was on some medication that made me loose a ton (talking over 10-20 a week) of weight in a very short period of time. At that time I drank the adult equiv of pediasure (Ultra Boost) and it was a quick bandaid until we could adjust things in my life to balance with that medication. I was only doing that for a couple weeks. So I can see that use case here... BUT as others have said, if your child will eat high calorie foods then you can basically make the equiv of pediasure with food and it can be all natural.

I would also say, even if it is not Celiac, with something serious like this it is always good to get a second opinion. Even the best doctors are wrong at times. Something is interfering with his growth and development, and that something needs to be discovered.

[T.H.]

Have you been able to get a full copy of the test results, by any chance? It might be worth it to make sure that you are getting all the information on there.

It might also be useful to double check that the doc did enough biopsies. There should be multiple biopsies of the intestines specifically, 4 at the very least. Damage can be patchy, especially in children, so it can be missed if there were not enough biopsies taken, especially as it can be not visible to the naked eye.

[frieze]

I know that I posted on my other thread about this, but I was hoping maybe some people had more in depth suggestions about what they would be doing next in my situation.

So - initial incomplete Celiac panel was negative.

Bloodwork showed some evidence of upper GI bleeding, malnutrition, inflammatory response, and borderline anemia, but was mostly just barely within normal levels.

Biopsy showed elevated levels of intraepethelial lymphocytes, but no blunting or furrowing. Biopsy also showed evidence of chronic acid reflux inflammation.

At our last appointment, the Celiac plus panel was ordered from Prometheus; however, we had been gluten free for a week which may give us totally normal results on the full Celiac bloodwork that was ordered.

Pediatric GI also wants us to meet with a dietician, but the appointment is scheduled for the 21st, after his panel comes back - I assume he's waiting to see what the bloodwork tells him (again, likely to be negative).

At that appointment, it was suggested to me that perhaps our problem is that I am not feeding him enough calories, so I am assuming that if the bloodwork comes back negative, they will be blaming his failure to thrive diagnosis on me and my supposed inability to feed him properly, which is why the appointment is after the bloodwork. The doctor told me at the appointment that I should be giving him pediasure instead of water.

So I guess my questions are - if the doctor refuses to diagnose, should I seek a second opinion? I am more than happy to try - University of Chicago is only three hours away from us and would be my first choice; I'm just not sure how willing anyone will be to diagnose him based on his biopsy, symptoms, and possibly a positive genetic test.

The other question I have is about his diet. I KNOW that he is not underfed, and I'm keeping a food diary from now until our appointment to basically prove it. However, between his 18 month appointment, when he was in the 8th percentile and his pediatrician brushed it off, and his last appointment, when he weighed in the 2nd percentile, I am VERY concerned about his weight. I just don't think giving him Pediasure is the way to go - it contains dairy and soy, and I am trying to keep him lactose free for a couple weeks while his intestines heal, since it seems to bother him. Additionally, I don't think it's a great choice when you have a kid that will eat plenty; going gluten free has had minimal effect on his food choices at home since I give him Udi's bread and Glutino pretzels where he used to eat regular versions. And I'd rather have him eating real foods that I just add healthy fats to, rather than processed and sweetened junk. I'm sure Pediasure is great for filling in the gaps for kids who are having a hard time adjusting, I just don't really think his diet has a lot of gaps and he eats all the time, so I'd be concerned that all Pediasure would do is fill him up at the expense of foods that have more nutritional value and could irritate his gut.

So would you give a good eater Pediasure just to try to get more calories into them, rather than real food?

Open Original Shared Link

according to this, over 40 would equal a marsh scale of 1, soooo, get the results and see what it says.

edit to add: also, you might want to check with other mothers (descretely) if this doc has refered "failure to thrive" to CPS, you DON'T want to tangle with them!

[Sesara]

Open Original Shared Link

according to this, over 40 would equal a marsh scale of 1, soooo, get the results and see what it says.

edit to add: also, you might want to check with other mothers (descretely) if this doc has refered "failure to thrive" to CPS, you DON'T want to tangle with them!

I've also read that while >40 has been the standard for Marsh scale of 1, it's been repeatedly suggested by some researchers that it be lowered to >20-25 for Celiac diagnosis unless other factors are present. And I've looked into the other potential reasons for elevated lymphocytes and almost none could apply to him - H. pylori is the number 1 other cause for it, and his biopsies confirmed that he doesn't have H. pylori. The doctor did take enough biopsies - he took 6 from the duodenum in various locations, including the duodenal bulb. I am not as sure that I trust the skill of the pathologist who read them, but that's the beauty of seeking a second opinion.

I've been keeping a food diary for the last 4 days now and while a child his weight should be needing slightly less than 1000 calories a day to gain, he's been eating between 1200-1500 calories a day. And his thyroid levels were normal when tested, so that's not the issue. So at least I have that evidence on my side to take to the dietician's with me. And yes, CPS is a worry, though since the other parents with an issue with this GI switched to the pediatric GI at the other hospital, I don't really know. But regardless, yes, I do not want a house call from CPS when I'm just trying to do what's best for my son.

[frieze]

I've also read that while >40 has been the standard for Marsh scale of 1, it's been repeatedly suggested by some researchers that it be lowered to >20-25 for Celiac diagnosis unless other factors are present. And I've looked into the other potential reasons for elevated lymphocytes and almost none could apply to him - H. pylori is the number 1 other cause for it, and his biopsies confirmed that he doesn't have H. pylori. The doctor did take enough biopsies - he took 6 from the duodenum in various locations, including the duodenal bulb. I am not as sure that I trust the skill of the pathologist who read them, but that's the beauty of seeking a second opinion.

I've been keeping a food diary for the last 4 days now and while a child his weight should be needing slightly less than 1000 calories a day to gain, he's been eating between 1200-1500 calories a day. And his thyroid levels were normal when tested, so that's not the issue. So at least I have that evidence on my side to take to the dietician's with me. And yes, CPS is a worry, though since the other parents with an issue with this GI switched to the pediatric GI at the other hospital, I don't really know. But regardless, yes, I do not want a house call from CPS when I'm just trying to do what's best for my son.

perhaps following those other parents lead??? would be a good idea...

[Sesara]

perhaps following those other parents lead??? would be a good idea...

I am planning on making the switch, but in the meantime, I am waiting for our test results from Prometheus to come back and I am happy to meet with the dietician. I am in the process of switching pediatricians and am unsure until I meet with his new pedi as to whether or not I will need a referral from her to switch GI's.

[frieze]

I am planning on making the switch, but in the meantime, I am waiting for our test results from Prometheus to come back and I am happy to meet with the dietician. I am in the process of switching pediatricians and am unsure until I meet with his new pedi as to whether or not I will need a referral from her to switch GI's.

you might want to "yes" the dietician to death, lol.

[mamaupupup]

Hang in there and keep documenting! You might also want to take pics of the dinner table to document (I have been doing this so I can write down in my food log later after dishes are done, etc.).

The CPS issue has been nagging at me. I realize now that when our pediatrican GRILLED me about what I was feeding our twins and why they were so small at 2 yrs old, that he has failure to thrive in the back of his mind. (Note that our girls were each 4.5 lbs at birth and preemies). This is the same pediatrician who refused to do Celiac bloodwork upon my request and told me that my daughter's muscle and joint pain was just growing pains, oh, and that the "gluten thing is a fad." At their 5 year old checkup I told him my biggest concern with one of the girls was "temperament" he asked me if I needed to get some (psychological) help for myself. Yep. I actually laughed out loud at his comment.

Fast forward 8 months...I have two girls confirmed Celiac...no joint/muscle pain and temperament is improving...thanks to being gluten free...and no thanks to that pediatrician.

I feel like we should lobby the American Academy of Pediatrics for improved Celiac screening. The doctors are verging on horrible, irresponsible care!

Sorry for the vent...thank you for listening!

Hang in there! I'm on your side! Yes, go to Chicago!

[frieze]

Hang in there and keep documenting! You might also want to take pics of the dinner table to document (I have been doing this so I can write down in my food log later after dishes are done, etc.).

The CPS issue has been nagging at me. I realize now that when our pediatrican GRILLED me about what I was feeding our twins and why they were so small at 2 yrs old, that he has failure to thrive in the back of his mind. (Note that our girls were each 4.5 lbs at birth and preemies). This is the same pediatrician who refused to do Celiac bloodwork upon my request and told me that my daughter's muscle and joint pain was just growing pains, oh, and that the "gluten thing is a fad." At their 5 year old checkup I told him my biggest concern with one of the girls was "temperament" he asked me if I needed to get some (psychological) help for myself. Yep. I actually laughed out loud at his comment.

Fast forward 8 months...I have two girls confirmed Celiac...no joint/muscle pain and temperament is improving...thanks to being gluten free...and no thanks to that pediatrician.

I feel like we should lobby the American Academy of Pediatrics for improved Celiac screening. The doctors are verging on horrible, irresponsible care!

Sorry for the vent...thank you for listening!

Hang in there! I'm on your side! Yes, go to Chicago!

maybe it would be a good idea to write your state Medical society? you know, the state level AMA.....