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Saw Gi Doctor And Confused


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#1 TammyTE

 
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Posted 11 January 2013 - 02:40 PM

When I posted before someone here said based on my daughter's AGA IgG levels she is probably celiac. That's similar to what the NP allergy person that did this test said. I took dd and my ds to a pediatric GI doctor today. The GI said that they only use the top two numbers on the test now. That these are the gold standard and none of the other ones matter. She said based on that information my dd is not celiac. She didn't say much about gluten intolerance at all.

When I asked her about what I had read regarding adjust the total IgA level because of her young age (2yo) she completely dismissed that thought altogether. She said to keep our appt with the pediatric allergist and eat a "normal diet" until then. Once we get skin prick testing done with the allergist that we should avoid any foods he tells us to. If we are still seeing problems with diarrhea and such to call her back.

I don't know who to trust here. I realize she is a specialist but I also have experience with other specialists dismissing information. An example would be our dermatologist said it "wasn't possible" that eczema could be from food allergies. Only when I pushed him did he finally say, "Well, it's possible but highly unlikely." My 2yo gets eczema if she has anything with egg as an ingredient!

So who is to say that this GI doc has something against the other numbers on the test but another GI wouldn't? We can't afford to keep seeing doctor after doctor. We are still going to the allergist because I know we are also dealing with allergies but what do I do about the celiac/gluten issue?

Here are my 2yo's blood test results for reference. I don't have my son's lab numbers because I've never seen a hard copy. (Long story.) But the GI doctor called me after the appt and said she got them via fax and his numbers were in the normal range. I'm hoping they will fax them to the allergist and I can see what his numbers were.

There is a page in the paperwork that says "Celiac & Gluten Sensitivity". Here's exactly how it reads:

Biomarkers
Total IgA = 68 (Sufficient)
Anti-Tissue Transglutamanase IgA (tTG IgA) = <1.2 (Negative)
Anti-Deamidated Gliadin IgA (DGP IgA) = 2 (Negative)
Anti-Gliadin IgA (AGA IgA) = 3 (Negative)
Anti-Gliadin IgG (AGA IgG) = 34 (Strong Positive)

Interpretation: Patient results are consistent with Gluten Sensivitiy.

Then there is this chart at the bottom of the page that takes all the negatives and positives from above and you follow the flow through the chart. Since her tTG iGA and DGP IgA are both negative it says she is not celiac but because her AGA IgG/IgA is positive she has gluten sensitivity. They said because the number is such a "strong positive" I should treat her as if she was celiac. That because she is so young that it may not show up on the test but she really could be.
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#2 nvsmom

 
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Posted 12 January 2013 - 03:54 PM

I am pretty sure that I've read that the AGA tests are often more reliable for young children because they haven't had years and years to build up a high reading on the EMA or ttg tests.... I wish I could remember where I read that....

I think yout doctor is down playing the test. Why would they bother using that AGA test if it it's not a good test? There is no blood test for non-celiac gluten sensitivity so if a blood test shows gluten sensitivity, then it's celiac. I'm not in the medical proffession, I'm just someone who has read a good dozen books on the matter because it concerns my own health, so I could be off base but your doctor sounds... well, wrong.

If they are done with the blood tests, and are not doing an endoscopic biopsy, I would treat her as a celiac and go gluten free. Heck, my kids tested completely negative and I still made them gluten-free, and 2/3 of my boys have shown real health improvements on the diet. Go gluten-free. It can't hurt and it can only help.... and really, after a few months it's not that hard to eat gluten-free.

I was wondering why the doctor wants her to not change her diet until the allergy testing is done? I have never ever heard of the need to continue eating possible problem foods until allergy testing is complete. When we suspected my son's tree nut allergy, I didn't keep feeding him nuts until the test; he stopped having contact with them immediately! And thank goodness we did!

Your doctor sounds a bit distracted or dim. I don't know... I'm pretty anti-doctor lately though so take my rant with a grain of salt. ;)

Best wishes to you and your daughter
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#3 TammyTE

 
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Posted 12 January 2013 - 05:43 PM

Thanks Nicole. :) This doctor isn't the one that ordered the test. The Nurse Practitioner that ordered the test for me said my dd was "most likely" celiac. Since she said that I decided to take her to a GI doctor that I thought would know more about celiac. So I just showed the new GI doc the test we already had.

As for the allergy testing, I am not at all feeding her eggs or peanuts. I agree that is silly. Maybe she just meant don't go gluten free and wait to see what the allergist says. Maybe this doc is thinking that we might just need to eliminate the allergens and not have to go gluten free?

I have read those same things about age and not showing up! The other thing is that I think my dd would have an even higher chance of not showing much damage because of how we have eaten her entire life. She was exclusively breadfed until 9mos. I ate wheat then but not a lot, so it could have gone through the milk but only small amounts. At 9-10 mos she started on some baby foods that were free of wheat. Not necessarily gluten free but pretty close. When she was 11 mos we started a diet for my older child that was entirely grain free, dairy free, sugar free and free of tons of other stuff. LOL We were eating whole foods and lots of salads. She ate this way until she was about 21 mos old. At that time we went off the diet as I had decided I wanted to get them tested to figure all this stuff out.

So she really had eaten gluten for only about 3 months of her entire life! Wouldn't that make a difference? I told the doctor that but I don't know that she made the connection.
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#4 nvsmom

 
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Posted 13 January 2013 - 08:37 AM

I agree that your doctor must not have made the connection (or wasn't listening). She hasn't been eating gluten long, and I wouldn't be surprised if that affected her results... I'm amazed she had a positive test at all.

If the doctor isn't ordering more celiac testing, and if you don't need an official diagnosis (many parents want a diagnosis for future school accomodations), i would go gluten-free. There are many people on this board who had just one positive blood test to diagnose them as a celiac and had good results with the gluten-free diet; there are also many whose blood work was negative but were diagnosed through the biopsy. I mention this because a positive test is a positive test.... if it's not gluten causing the positive result, then your doctor should be able to tell you what is the cause.

Switch to gluten-free if you are done celiac testing (allergy testing is completely unrelated). It sounds like your family eats extremely well already so it shouldn't be too much of a switch.

Again, best wishes. :)
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#5 TammyTE

 
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Posted 13 January 2013 - 08:54 AM

We home school so that's not an issue, but I thought it was good to know if you had true celiac vs. gluten intolerance. Mainly for future insurance coverage and knowing the possibilities of things like low bone density. Is it true that those with celiac disease can have those problems but those with gluten intolerance won't?

I will also admit that it would be nice to have a diagnosis so my extended family will stop telling me I'm crazy. Of course I won't put my daughter through testing just for that, but it would be an added perk. LOL
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#6 mushroom

 
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Posted 13 January 2013 - 11:59 AM

Diagnosis is a really tough hurdle for some if the issue is not straightforward. It's an especially high hurdle if there hasn't been much gluten ingested at all (she would have been exposed through your breast milk while she was breast feeding, but after that was off for 10 months and then back on for three.) Gluten has been a pretty much up and down road. Three months is normally considered a reasonable time period for a gluten challenge but since this gluten challenge was her first full-on gluten exposure her case is a little different.

Home-schooling makes life easier during grade school years. Are you planning on home schooling for high school too?? And then if she goes to college there is the problem of meal plans in the dorms.... just thinking ahead down the road a little bit. Normally I am not a strong advocate for prolonging testing, but it is always a little different where children are involved because they are not usually in autonomous situations and there are places where a formal diagnosis is required before accommodations for gluten sensitivity will be made. If you can find a doctor who is prepared to write a gluten sensitivity diagnosis (preferably celiac) and say that she should not eat gluten, then this problem should not arise. But such a piece of paper can be important for a child.

We are still not at the point of knowing for sure what damage a gluten sensitivite (as opposed to celiac) actually does to the body. I expect a lot of research in the coming years will help clarify this now that research is actually being done :) on the issue. Previously, if you did not have celiac according to the testing you were told you could eat as much gluten as you liked :o

It is true that the DGP is considered to be a much better test than the AGA, especially in children. And if she is not IgA deficient, the IgA result is considered more reliable than the IgG. So, in a way I can see where the GI is coming from. However, if she is willing to give you the piece of paper that says she should not eat gluten, then it really does not make much difference whether she is diagnosable at the moment or not. I feel (my own gut feeling here) that if you waited long enough she would eventually test positive, but if you can get the desired result without putting her through any more suffering that is a better option. Just show your extended family that piece of paper that says "no gluten" and thumb your nose at them, figuratively speaking. It shouldn't make any difference to them, because she is your child and you are doing what is best for her. There are always people longing to tell you how to raise your child, but this is a case of MYOB and respect (hopefully) your doctor's decision. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 nvsmom

 
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Posted 13 January 2013 - 04:28 PM

We home school so that's not an issue, but I thought it was good to know if you had true celiac vs. gluten intolerance. Mainly for future insurance coverage and knowing the possibilities of things like low bone density. Is it true that those with celiac disease can have those problems but those with gluten intolerance won't?


We homeschool too. It definitely simplifies the lunch issues. LOL

I'm not sure if those with NCGI won't have absorption issues or not. I assume that NCGI causes inflammation too but I don't know if that affects vitamin levels. Being a celiac doesn't guarantee absorption problems either. I've had celiac my whole life (I think) and was only low in vitamin D.

Good luck. :)
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Hypothyroid - August, 2012

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#8 TammyTE

 
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Posted 13 January 2013 - 07:44 PM

We homeschool too. It definitely simplifies the lunch issues. LOL

I'm not sure if those with NCGI won't have absorption issues or not. I assume that NCGI causes inflammation too but I don't know if that affects vitamin levels. Being a celiac doesn't guarantee absorption problems either. I've had celiac my whole life (I think) and was only low in vitamin D.

Good luck. :)

Thanks. Good to know about the absorption problems. :)

Diagnosis is a really tough hurdle for some if the issue is not straightforward. It's an especially high hurdle if there hasn't been much gluten ingested at all (she would have been exposed through your breast milk while she was breast feeding, but after that was off for 10 months and then back on for three.) Gluten has been a pretty much up and down road. Three months is normally considered a reasonable time period for a gluten challenge but since this gluten challenge was her first full-on gluten exposure her case is a little different.

Home-schooling makes life easier during grade school years. Are you planning on home schooling for high school too?? And then if she goes to college there is the problem of meal plans in the dorms.... just thinking ahead down the road a little bit. Normally I am not a strong advocate for prolonging testing, but it is always a little different where children are involved because they are not usually in autonomous situations and there are places where a formal diagnosis is required before accommodations for gluten sensitivity will be made. If you can find a doctor who is prepared to write a gluten sensitivity diagnosis (preferably celiac) and say that she should not eat gluten, then this problem should not arise. But such a piece of paper can be important for a child.

We are still not at the point of knowing for sure what damage a gluten sensitivity (as opposed to celiac) actually does to the body. I expect a lot of research in the coming years will help clarify this now that research is actually being done :) on the issue. Previously, if you did not have celiac according to the testing you were told you could eat as much gluten as you liked :o

It is true that the DGP is considered to be a much better test than the AGA, especially in children. And if she is not IgA deficient, the IgA result is considered more reliable than the IgG. So, in a way I can see where the GI is coming from. However, if she is willing to give you the piece of paper that says she should not eat gluten, then it really does not make much difference whether she is diagnosable at the moment or not. I feel (my own gut feeling here) that if you waited long enough she would eventually test positive, but if you can get the desired result without putting her through any more suffering that is a better option. Just show your extended family that piece of paper that says "no gluten" and thumb your nose at them, figuratively speaking. It shouldn't make any difference to them, because she is your child and you are doing what is best for her. There are always people longing to tell you how to raise your child, but this is a case of MYOB and respect (hopefully) your doctor's decision. :)

We homeschool too. It definitely simplifies the lunch issues. LOL

I'm not sure if those with NCGI won't have absorption issues or not. I assume that NCGI causes inflammation too but I don't know if that affects vitamin levels. Being a celiac doesn't guarantee absorption problems either. I've had celiac my whole life (I think) and was only low in vitamin D.

Good luck. :)


Thanks. Thing is...she didn't give me any kind of paper saying anything about avoiding gluten. She ignored the part of the test that said strong positive for gluten intolerance and said those numbers don't matter. I just looked at the paper from her and it says, "Okay to stay on regular diet until sees allergist." So this GI doctor basically thinks this is all caused by allergies and not celiac or gluten intolerance. I just don't understand.
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#9 TammyTE

 
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Posted 13 January 2013 - 07:47 PM

Oh I forgot to mention. The doctor said that all the diarrhea happening when eating wheat could have been from all the fiber. The other thing was that dd has gained weight since adding gluten into the diet. She was not at all malnourished when grain free but was on the small side for her age. Still very healthy looking though. Now she is still small but a bit chubbier. The doctor said if it was gluten intolerance or celiac she would be underweight, but I have seen that symptoms of celiac can be being overweight so that doesn't make sense either.
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#10 mushroom

 
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Posted 13 January 2013 - 09:12 PM

Right. She does not necessarily have to be a failure to thrive toddler to have celiac although that is a fairly typical childhood presentation.

I guess her reasoning is to cut out all things she tests positive to on skinprick and if she still has diarrhea then she might reconsider :rolleyes: You could still end up getting a 'piece of paper' out of her farther down the line. I guess you have to figure out how important a diagnosis is to you (and her). It is always a dilemma, prolonging the pain vs. gettting a definitive answer.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#11 TammyTE

 
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Posted 13 January 2013 - 09:33 PM

We have the appt with the allergist on February 5th. I wonder if I should just go ahead and keep the diet "normal" until then and make a decision at that point. I mean, if I cut wheat and *then* cut other allergies (besides the eggs and nuts which are already gone from the diet) I won't know for certain what is truly helping.

Decisions, decisions.
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#12 mushroom

 
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Posted 13 January 2013 - 09:55 PM

We have the appt with the allergist on February 5th. I wonder if I should just go ahead and keep the diet "normal" until then and make a decision at that point. I mean, if I cut wheat and *then* cut other allergies (besides the eggs and nuts which are already gone from the diet) I won't know for certain what is truly helping.

Decisions, decisions.


No, I agree, if you are going ahead with the allergy testing don't cut out the wheat. It will not affect the allergy testing but you don't want to return to the GI with diarrhea cured :blink: Then you won't know where you are. Of course she may test sensitive to wheat and then that will have to be one of the things you cut. If I were you and that happened, I would just cut the wheat and see what difference it made, before eliminating anything else she tests sensitive to.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#13 Takala

 
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Posted 14 January 2013 - 02:52 AM

Some of the "merely" gluten intolerants are going to be people who "missed" getting the official celiac diagnosis...... and there is going to be bone loss. The stereotype of the typical celiac always being thin is not true either (think insulin resistance, polycystic ovaries, and thyroid problems and food cravings for carbs and sugars, caused by malnutrition) :ph34r:. The stereotype of the typical medical practitioner not realizing this continues :rolleyes: Oh, and ignoring the blood test ? Why bother running this stuff and doing follow up, if nobody bothers to note the test results. That's a flunk. :angry:
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#14 TammyTE

 
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Posted 14 January 2013 - 09:17 AM

No, I agree, if you are going ahead with the allergy testing don't cut out the wheat. It will not affect the allergy testing but you don't want to return to the GI with diarrhea cured :blink: Then you won't know where you are. Of course she may test sensitive to wheat and then that will have to be one of the things you cut. If I were you and that happened, I would just cut the wheat and see what difference it made, before eliminating anything else she tests sensitive to.


Her blood allergy test only showed egg as true allergy and peanuts as highly sensitive. (Along with wheat and a bunch of other things.) To me, she seems to have an allergic reaction to peanuts as well. That's why we are going for the skin prick test now. What you said makes sense. I certainly hope that wheat does NOT show up as allergy so it will be cut and dry, but it probably won't be that easy. LOL

Some of the "merely" gluten intolerants are going to be people who "missed" getting the official celiac diagnosis...... and there is going to be bone loss. The stereotype of the typical celiac always being thin is not true either (think insulin resistance, polycystic ovaries, and thyroid problems and food cravings for carbs and sugars, caused by malnutrition) :ph34r:. The stereotype of the typical medical practitioner not realizing this continues :rolleyes: Oh, and ignoring the blood test ? Why bother running this stuff and doing follow up, if nobody bothers to note the test results. That's a flunk. :angry:


Well, it the doctor's defense, she isn't the one that ordered this panel. If I had gone to her first she probably wouldn't even have ordered a test. If she had actually ordered one it wouldn't have been that entire panel. She was saying she only uses the top two numbers (which showed negative for my dd) so she didn't use the bottom numbers (which showed strong positive for my dd). I disagree with which numbers to use though as I think they are all relevant.
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#15 mushroom

 
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Posted 14 January 2013 - 11:49 AM

Absolutely they are all relevant and should be considered. Problem is, if her total IgA level is normal, the IgA tests are a little more relevant than the IgG, is my understanding. What was her total IgA, and the range the lab uses for someone her age?
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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