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Toddler With Suspected Celiac


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51 replies to this topic

#16 Sesara

 
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Posted 09 May 2012 - 02:15 PM

I've read that, but unfortunately, it didn't seem to help us, since DS was breastfeeding when gluten was introduced...I can't pinpoint exactly when, maybe around 8 or 9 months, but I continued (and continue) to breastfeed him, and unfortunately it doesn't seem to have protected him in this case (and I am well aware that doesn't mean that breastfeeding still isn't the best thing for him).

MIL told me tonight that apparently ulcerative colitis runs on her mother's side of the family (she also is the one whom the gall bladder issues come through). Don't know why that didn't get mentioned before. And the pediatric GI's office unfortunately called and told me that the one vial of blood we were worried wouldn't be enough clotted, so we have to come back in for another blood draw tomorrow. My poor kiddo, he's going to be so traumatized. Ugh.
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#17 pricklypear1971

 
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Posted 09 May 2012 - 03:08 PM

I've read that, but unfortunately, it didn't seem to help us, since DS was breastfeeding when gluten was introduced...I can't pinpoint exactly when, maybe around 8 or 9 months, but I continued (and continue) to breastfeed him, and unfortunately it doesn't seem to have protected him in this case (and I am well aware that doesn't mean that breastfeeding still isn't the best thing for him).

MIL told me tonight that apparently ulcerative colitis runs on her mother's side of the family (she also is the one whom the gall bladder issues come through). Don't know why that didn't get mentioned before. And the pediatric GI's office unfortunately called and told me that the one vial of blood we were worried wouldn't be enough clotted, so we have to come back in for another blood draw tomorrow. My poor kiddo, he's going to be so traumatized. Ugh.


Oh no, poor guy.

You may contact those centers and see if there's more research available.

Yeah, it's amazing what you start learning about people who aren't "sick", right? Just wait....it will getter interesting.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#18 Sesara

 
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Posted 13 May 2012 - 05:00 PM

Just asked my mom about her thyroid issues - she had a goiter and they told her that her white blood cells were attacking her thyroid at the time. Now this being the late 70's, they never told her an official diagnosis, but from what I'm reading, it sounds an awful lot like Hashimoto's, which seems to be the primary related thyroid issue to Celiac from what I'm reading. All the more reason for me to get tested - I'd rather not end up with the issues my mother and grandmother had with their thyroids.
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#19 pricklypear1971

 
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Posted 13 May 2012 - 06:36 PM

Actually, it sounds more like Graves to me - the hyperthyroid autoimmune thyroid disease. My aunt had the same thing - goiter and most of it removed. She was hyper at the time, now she hypo.

Both Graves and Hashis are associated with Celiac. I think Hashis is just more prevalent (hypo in general is more prevalent, I believe)..
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#20 Sesara

 
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Posted 14 May 2012 - 08:09 PM

Actually, it sounds more like Graves to me - the hyperthyroid autoimmune thyroid disease. My aunt had the same thing - goiter and most of it removed. She was hyper at the time, now she hypo.

Both Graves and Hashis are associated with Celiac. I think Hashis is just more prevalent (hypo in general is more prevalent, I believe)..


Well, I know my mom's goiter developed during pregnancy, which is apparently common with Hashimoto's, and from the symptoms she's described, she always told me that it was hypothyroid, not hyper, which is why I assumed Hashi's.
http://www.mayoclini...dsection=causes

But be that as it may, it's definitely food for thought. I'm hoping to get back our bloodwork results soon - they told me it would take about a week, which would be tomorrow, but with our one vial clotting and having to get redrawn on Thursday, that would mean we might not hear anything until the end of the week. And tomorrow will be exactly two weeks until our endoscopy. I am just hoping for some results that at least make me feel like the scope is a good idea, before I go through with it, though I know that there's always the possibility of false negative.
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#21 pricklypear1971

 
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Posted 14 May 2012 - 08:22 PM

Well, I know my mom's goiter developed during pregnancy, which is apparently common with Hashimoto's, and from the symptoms she's described, she always told me that it was hypothyroid, not hyper, which is why I assumed Hashi's.
http://www.mayoclini...dsection=causes

But be that as it may, it's definitely food for thought. I'm hoping to get back our bloodwork results soon - they told me it would take about a week, which would be tomorrow, but with our one vial clotting and having to get redrawn on Thursday, that would mean we might not hear anything until the end of the week. And tomorrow will be exactly two weeks until our endoscopy. I am just hoping for some results that at least make me feel like the scope is a good idea, before I go through with it, though I know that there's always the possibility of false negative.


Yes, if it was hypo then it was hashis.

Did you ever check to ensure they ordered a full panel of Celiac tests, not just one or two? Sometimes they do that and it's very unfortunate because you're only getting a partial picture. Since he has to go back....would be worth knowing IMO.

I won't tell not to worry or stress - that's just how it is. But you will get through it.

As I type that I wonder what I'm going yo do with my kid since he was just tested for gluten antibodies in December and now he's showing symptoms. Sigh. Go milk free til next December?? Ugh. It's amazing that even when you are aware of the potential problem there's still no answer.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#22 mommida

 
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Posted 15 May 2012 - 04:54 AM

In the early stages of Hashi's the thyroid can be over active. The thyroid is just under attack from the immune system and reacting while it still can produce. At a certain point, the thyroid loses the batlle and is always hypoactive (underactive).

So a person can have symptoms of overactive and still have Hashimoto's Thyroiditis which is mostly thought of as underactive. Unfortunately for me a lot of doctors miss this diagnoses (especially if you are younger~ early 20's or under). I had to work with an endocronologist.
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#23 Sesara

 
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Posted 15 May 2012 - 10:02 AM

Sigh. I just got a call back from the pediatric GI's office and it was like pulling teeth to get details...at first, all she was going to tell me was that all his tests came back "normal", without even explaining further. So then she told me they did a CBC, normal, liver function was normal, thyroid levels were normal, Celiac panel was normal. I asked about the celiac panel and she told me that all the results were normal, again, and so I specifically asked her about the two things I see referenced a lot, ttG and IgA, and she told me his results were a 2 and a 67, respectively, so, within normal ranges. I didn't know off the top of my head what else to ask about specifically. Apparently they did not to any genetic testing, so I'll probably have to ask about that, but we aren't scheduled to see the Dr. again until the endoscopy.

But now I'm back to feeling frustrated, because if his bloodwork is all negative, what are the odds that the scope will come back negative too? His poor little belly has been so swollen the last few days, and we've changed our pattern of chronic diarrhea to intermittent diarrhea and constipation, which is a totally new thing. And the more solid poops are all the "sandy" texture that everyone complains about. I just don't know how I'm going to get people to take this seriously without an actual diagnosis. Sigh.
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#24 pricklypear1971

 
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Posted 15 May 2012 - 10:11 AM

Sigh. I just got a call back from the pediatric GI's office and it was like pulling teeth to get details...at first, all she was going to tell me was that all his tests came back "normal", without even explaining further. So then she told me they did a CBC, normal, liver function was normal, thyroid levels were normal, Celiac panel was normal. I asked about the celiac panel and she told me that all the results were normal, again, and so I specifically asked her about the two things I see referenced a lot, ttG and IgA, and she told me his results were a 2 and a 67, respectively, so, within normal ranges. I didn't know off the top of my head what else to ask about specifically. Apparently they did not to any genetic testing, so I'll probably have to ask about that, but we aren't scheduled to see the Dr. again until the endoscopy.

But now I'm back to feeling frustrated, because if his bloodwork is all negative, what are the odds that the scope will come back negative too? His poor little belly has been so swollen the last few days, and we've changed our pattern of chronic diarrhea to intermittent diarrhea and constipation, which is a totally new thing. And the more solid poops are all the "sandy" texture that everyone complains about. I just don't know how I'm going to get people to take this seriously without an actual diagnosis. Sigh.


Get a copy, then post them. You need ranges.

And this is why people scope - because kids are notoriously negative on blood work in spite of horrible symptoms. Sometimes they find it on scope when it never shows up on blood work.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#25 Sesara

 
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Posted 15 May 2012 - 10:23 AM

Get a copy, then post them. You need ranges.

And this is why people scope - because kids are notoriously negative on blood work in spite of horrible symptoms. Sometimes they find it on scope when it never shows up on blood work.


I will call back the office and ask if they can mail or e-mail me a copy. Thanks.

I guess it does make me feel better about agreeing to have the scope so that they at least get a chance to look at what's going on in there. And then we will be definitely going gluten-free to see if it makes a difference, regardless of the results. I'm using up my pantry as we speak, so that it will be relatively easy to just decontaminate the kitchen when we're ready.
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#26 1974girl

 
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Posted 15 May 2012 - 12:25 PM

Do we have an update yet on this? Just wondered how he was doing and if he was scoped yet. After my daughter was scoped and found to be celiac, then blood was enough for the other family members. I have a high out of pocket min. and can't see paying $2400 to scope my youngest when she has a sister with it, genes for it, and her blood is high for it. (We are testing her again next month to make sure then I'll just go gluten free) As far as my husband (type 1 diabetic) and me...we had blood tested and we do not have it. No scope needed. If your son has celiac, then have a blood test. If it is positive, go gluten free. Good luck!
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#27 beebs

 
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Posted 15 May 2012 - 04:27 PM

Yeah, the bloods are notorious for being negative in children, its far more likely to show up in an endo - although that can be negative too, they need to take at least 11 samples, people come on here all the time saying they are negative and then revealing that the dr only took 1 or 2 biopsies. I swear - the medical profession need to get with the program regarding coeliac.

Actually - I was in a similar position to yourself, I was booked to have my endo (I had negative bloods) but some very serious symptoms. I got pregnant so had to cancel the endo, decided to go gluten free in the meantime and do a gluten challenge after the baby was born. I have basically eaten gluten once and was rushed to emergency because I was so severely ill from it. I will never get a diag now, It annoys me sometimes, but at the end of the day - I know that its gluten - heck everyone knows its gluten (all the drs and specialist) it may not be official, but it doesn't change anything even if it was official you know?
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HLA DQ8, gluten-free since January 2011

#28 beebs

 
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Posted 15 May 2012 - 04:29 PM

Do we have an update yet on this? Just wondered how he was doing and if he was scoped yet. After my daughter was scoped and found to be celiac, then blood was enough for the other family members. I have a high out of pocket min. and can't see paying $2400 to scope my youngest when she has a sister with it, genes for it, and her blood is high for it. (We are testing her again next month to make sure then I'll just go gluten free) As far as my husband (type 1 diabetic) and me...we had blood tested and we do not have it. No scope needed. If your son has celiac, then have a blood test. If it is positive, go gluten free. Good luck!


What if its negative? There is a 40% false negative rate in kids under 5 and a 15% negative rate in adults.
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HLA DQ8, gluten-free since January 2011

#29 Sesara

 
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Posted 18 May 2012 - 12:38 PM

Well, I'm just going over the bloodwork results that came today. While the Celiac panel itself was unremarkable, a few other things stood out to me.

Apparently his celiac panel was not very detailed. He had an IgA level of 67, where normal is 21-291.

His TTG IgA level was 2 where <20 is negative, and 20-30 is weak positive.

On his metabolic panel:

His one unmistakably unusual value was his BUN/Creatinine Ratio - it was 69, and normal is 12-20. However, the BUN and creatinine are within normal ranges by themselves. And I found this on wikipedia: The ratio is useful for the diagnosis of bleeding from the gastrointestinal (GI) tract in patients who do not present with overt vomiting of blood.[3] In children, a BUN:Cr ratio of 30 or greater has a sensitivity of 68.8% and a specificity of 98% for upper gastrointestinal bleeding.

He also had slightly high chloride and low CO2 levels, both of which are not unusual when someone has issues with diarrhea. A lot of his other blood test results are within normal levels but borderline, all of which can indicate slight dehydration.

His bilirubin was slightly low, but all I can find is that this could indicate inflammation.

His AST level was borderline high - I see this is sometimes related to Celiac. ALT was normal, so his liver appears to be functioning just fine.

His alkaline phosphatase level was also borderline low, which I see can indicate malnutrition.

And finally, on his CBC, his red blood cell count was borderline low as was his hemoglobin and hematocrit, so he appears to be just barely not anemic.

His RDW count was high but MCV count was normal, which I read can either indicate the beginnings of iron deficiency anemia or a B12 or folate deficiency.

And while the normal range is 0-0.10, he had a 0.10 for his basophil count, and I see that basophils are often seen in immune reactions.




So, I have nothing conclusive, but I would say that the bloodwork indicates something gastrointestinal and inflammatory going on in his system, and Celiac is still our best culprit. 1.5 weeks left until our biopsy, so fingers crossed that we will get some answers.
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#30 pricklypear1971

 
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Posted 18 May 2012 - 01:08 PM

Great job looking up all of that.

His Celiac panel was not at all thorough. For a doctor that suspects Celiac, it should have been more thorough. And while his total iga was normal, it's low normal - in the area where some may say he's almost iga deficient - so iga Celiac tests wouldn't work for him.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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