I Am Getting Very Tired Of Waiting

[rosiemackymom]

I've written about this a little bit here before, but its gotten even more complex, adding me into the equation too. so two years ago my son had a health crisis during which he had a celiac panel which was inconclusive due to low IgA, so they did a genetic panel and he has a celiac gene (I can't remember which, need to get a copy of that lab) and they told us oh, he doesn't have it, but he cold get it later.

Fast forward to this winter, when my little guy (he's 3.5 now) was having increased diarrhea and lethargy so I insisted on a repeat test (pediatrician resisted, but I won) and he had a positive test for celiac, as follows:

tTG Ab,IgA 31 H Unit: U/mL

Reference Range:

NEGATIVE: <5

EQUIVOCAL: 5-8

POSITIVE: >8

IgA 40 Reference range: 24 to 121

Unit: mg/dL

Gliadin Ab IgA 3

Unit: U/mL

Note

Reference Range:

NEGATIVE: <11

EQUIVOCAL: 11-17

POSITIVE: >17

So we went back to the pediatric GI doctor, and she said well, he almost definitely has celiac, but we have to do the biopsy. We scheduled it for 2 weeks out. Then he got sick. We rescheduled. He got sick AGAIN, we rescheduled, tuesday is the rescheduled biopsy and guess what, he has another cold. We'll see if they let us do it (they are very cautious with him as he as asthma).

Meanwhile. his sister and I got celiac tests. Hers was resoundingly negative. Mine, not so much. Its... "equivocal". what does this mean? I got a GI referral but I dont see him till April 1. Meanwhile I feel rotten. Here are my labs:

tTG Ab,IgA 7 H

Unit: U/mL

Reference Range:

NEGATIVE: <5

EQUIVOCAL: 5-8

POSITIVE: >8

IgA 180

Reference range: 81 to 463

Unit: mg/dL

Gliadin Ab IgA 13 H

Unit: U/mL

Reference Range:

NEGATIVE: <11

EQUIVOCAL: 11-17

POSITIVE: >17

If you're still reading, you're a saint. So here's my big dillemna. I am still nursing Max, 2x or so a day, and I'm not prepared to force him to wean when he's still feeling sick (he nurses over wanting food, I presume because food makes him feel sick) so I think going gluten-free will resolve this, but in the meantime... anyway, I have to stay on a little gluten so that whatever tests I do next will be correct, but I want to take him totally gluten free after Tuesday's biopsy (assuming we get to do it.) thoughts? I am overwhelmed with all the questions and information and don't really understand our labs and and and. My current plan is to take our household gluten-free (husband and daughter want to do that, they're supportive for sure) on Tuesday (biopsy day) and then I will eat one serving of gluten-food after Max's morning nurse so that hopefully its mostly left my system again in the evening. Until April 1 at least, though probably longer.

Does this make sense?

[Mother of Jibril]

Welcome to the group!

This is just my opinion... but I think the "gold standard" of endoscopy is overrated. Your son had a positive blood test and you're on the verge of a positive test. What will the endoscopy tell you that you don't already know? I guess it could tell you exactly how much damage you have and look for other problems (ulcers, lymphoma), but chances are that it will just tell you what you already know... gluten is bad for your health

I think it's great that you're still breastfeeding... the damage probably would have been even worse if your son was formula-fed. The problem is that gluten can easily travel through your digestive system into your breastmilk, so if you want to keep nursing (even just once or twice a day) you need to go on a gluten-free diet too. Why wait any longer?

I'm sure other people will give you different perspectives... if it were my son I wouldn't put him through the endoscopy. I would just get him on a strict, gluten-free diet.

[curiousgeorge]

You know he has the genes, and you know he has positive blood work. You know he got the gene somewhere and your bloodwork is very close to postiive. I'd say he got the genes from you and you have it too. I would call the GI you have a referal to and BEG to get in earlier.

[rosiemackymom]

You know he has the genes, and you know he has positive blood work. You know he got the gene somewhere and your bloodwork is very close to postiive. I'd say he got the genes from you and you have it too. I would call the GI you have a referal to and BEG to get in earlier.

alas I've already begged and I am on their wait list to see any available GI doc in their clinic (have to go to them, stupid HMO insurance)

[rosiemackymom]

Welcome to the group!

This is just my opinion... but I think the "gold standard" of endoscopy is overrated. Your son had a positive blood test and you're on the verge of a positive test. What will the endoscopy tell you that you don't already know? I guess it could tell you exactly how much damage you have and look for other problems (ulcers, lymphoma), but chances are that it will just tell you what you already know... gluten is bad for your health

I think it's great that you're still breastfeeding... the damage probably would have been even worse if your son was formula-fed. The problem is that gluten can easily travel through your digestive system into your breastmilk, so if you want to keep nursing (even just once or twice a day) you need to go on a gluten-free diet too. Why wait any longer?

I'm sure other people will give you different perspectives... if it were my son I wouldn't put him through the endoscopy. I would just get him on a strict, gluten-free diet.

the thing is, I agree with you, but I want him to have as "legitmate" a dx as possible for school and so I can tell him if/when he is a rebellious teen later that we have "proof". For me, though... I would consider just going off it if they can't see me sooner. So you think the gluten would still be in my breastmilk say, 12 hours after I ate it? I have tried to find conclusive information on this and failed.

[Mother of Jibril]

the thing is, I agree with you, but I want him to have as "legitmate" a dx as possible for school and so I can tell him if/when he is a rebellious teen later that we have "proof". For me, though... I would consider just going off it if they can't see me sooner. So you think the gluten would still be in my breastmilk say, 12 hours after I ate it? I have tried to find conclusive information on this and failed.

My personal experience on this is with casein (the protein in cow's milk)...

My son is very sensitive to casein. By the time he was six weeks old he had colic, projectile vomiting, and green diarrhea with streaks of blood... this was during exclusive breastfeeding (we held off on solids until he was six months old). Thank goodness for the Internet! (One really good site I found is www.kellymom.com). I figured out that the problem was dairy, took it out of my diet, and within a few weeks he was completely back to normal. BUT... I did slip up a few times My local health-food store makes really excellent jalapeno cheese grits and I was almost done with the bowl when I realized, Doh!!! This stuff has cheese! And sure enough... within a couple of days my son had diarrhea and eczema on his cheeks. Personally, I don't think you can predict how long it will take for gluten to go through your system... or how much gluten it will take to cause noticeable symptoms in your son. You could be causing damage without any obvious symptoms.

I do know what you mean about proof though. I recently had my daughter tested for celiac. Her test came back "negative," but she is making antibodies (Ttg, which is pretty specific for celiac). So... we've taken her off gluten. My husband and I agree that this is best for her health. I wish somebody had told me thirty years ago to stop eating gluten! I assume that she WILL be rebellious as a teenager ... I figure we can always insist on more testing at that time. When she's an adult the choice will ultimately be hers. IMO, the good thing is that celiac is not like a severe allergy (which I have personal experience with)... a little bit might make you sick (and you definitely want to avoid it as best you can)... but it won't kill you. You have a little time for a rebellious teenager to learn the consequences.

I can't speak to the school issue... honestly, I'm not sure why schools need a letter from a doctor. For religious reasons our family doesn't eat pork, lard, or gelatin, but I've never been asked for a note! Shouldn't the school just respect your wishes? I could understand the fuss if you wanted your son to get lunch from the cafeteria... personally, I wouldn't trust the cafeteria. Lunches from home are MUCH more safe.

[rosiemackymom]

I guess the thing is, its all very short term, no matter what he and I are both going gluten-free as soon as all the testing is over. I just feel bad prolonging his issues during the whatever it will be, 3+ weeks after his biopsy before I can get the rest of my testing done. I don't really care about school hot-lunch, because as you say, its uh... not very good quality food (we're somehwat organic-obsessed) but there are other issues at school, if my daughter's class is any guide. (parties, art projects, food sharing, cross contamination, etc etc).

anyway. I really do appreciate your input. Oh and yeah, kellymom is an awesome website (does not seem to have gluten transit time though). How was your daughter's test negative if she is making tTG antibodies? Or do you mean the biopsy was?

l' date='Mar 15 2009, 10:13 AM' post='517797']

My personal experience on this is with casein (the protein in cow's milk)...

My son is very sensitive to casein. By the time he was six weeks old he had colic, projectile vomiting, and green diarrhea with streaks of blood... this was during exclusive breastfeeding (we held off on solids until he was six months old). Thank goodness for the Internet! (One really good site I found is www.kellymom.com). I figured out that the problem was dairy, took it out of my diet, and within a few weeks he was completely back to normal. BUT... I did slip up a few times My local health-food store makes really excellent jalapeno cheese grits and I was almost done with the bowl when I realized, Doh!!! This stuff has cheese! And sure enough... within a couple of days my son had diarrhea and eczema on his cheeks. Personally, I don't think you can predict how long it will take for gluten to go through your system... or how much gluten it will take to cause noticeable symptoms in your son. You could be causing damage without any obvious symptoms.

I do know what you mean about proof though. I recently had my daughter tested for celiac. Her test came back "negative," but she is making antibodies (Ttg, which is pretty specific for celiac). So... we've taken her off gluten. My husband and I agree that this is best for her health. I wish somebody had told me thirty years ago to stop eating gluten! I assume that she WILL be rebellious as a teenager ... I figure we can always insist on more testing at that time. When she's an adult the choice will ultimately be hers. IMO, the good thing is that celiac is not like a severe allergy (which I have personal experience with)... a little bit might make you sick (and you definitely want to avoid it as best you can)... but it won't kill you. You have a little time for a rebellious teenager to learn the consequences.

I can't speak to the school issue... honestly, I'm not sure why schools need a letter from a doctor. For religious reasons our family doesn't eat pork, lard, or gelatin, but I've never been asked for a note! Shouldn't the school just respect your wishes? I could understand the fuss if you wanted your son to get lunch from the cafeteria... personally, I wouldn't trust the cafeteria. Lunches from home are MUCH more safe.

[Mother of Jibril]

I just feel bad prolonging his issues during the whatever it will be.

I know what you mean My daughter was totally potty-trained, but she started having accidents at school from all the gluten (diarrhea). If you think the endoscopy will be helpful don't feel bad about it! My son had to have a spinal tap last summer and it came back positive for meningitis... sometimes a little short-term suffering is necessary for the greater good.

How was your daughter's test negative if she is making tTG antibodies?

Her test was like yours... not high enough to be "positive," but showing some tTg antibodies. To me, this says that she might not have celiac disease right now (endoscopy is the only way to know for sure), but she definitely has the capacity to develop celiac disease. Why wait until she has major health problems? Gluten is not necessary for a healthy diet. The ranges on the celiac panel are set pretty high to correlate with obvious damage to the villi.

[rosiemackymom]

I know what you mean My daughter was totally potty-trained, but she started having accidents at school from all the gluten (diarrhea). If you think the endoscopy will be helpful don't feel bad about it! My son had to have a spinal tap last summer and it came back positive for meningitis... sometimes a little short-term suffering is necessary for the greater good.

Her test was like yours... not high enough to be "positive," but showing some tTg antibodies. To me, this says that she might not have celiac disease right now (endoscopy is the only way to know for sure), but she definitely has the capacity to develop celiac disease. Why wait until she has major health problems? Gluten is not necessary for a healthy diet. The ranges on the celiac panel are set pretty high to correlate with obvious damage to the villi.

Yeah, I plan to go gluten-free even if my biopsy says I don't have celiac (yet). I figure this is the last time in my life I'm on gluten, thats why I want to do the biopsy now.

[cruelshoes]

Its... "equivocal". what does this mean? I got a GI referral but I dont see him till April 1. Meanwhile I feel rotten. Here are my labs:

tTG Ab,IgA 7 H

Unit: U/mL

Reference Range:

NEGATIVE: <5

EQUIVOCAL: 5-8

POSITIVE: >8

Gliadin Ab IgA 13 H

Unit: U/mL

Reference Range:

NEGATIVE: <11

EQUIVOCAL: 11-17

POSITIVE: >17

Equivocal results are not in what is considered the positive range. It is possible to get elevated results on either the TtG and Antigliadin tests and have nothing to do with celiac (The antigliadin tests are the least sensitive test for celiac.) For you, it may be a matter of semantics because you are right on the line of being positive. If it were me, I would follow through with the biopsy anyway.

anyway, I have to stay on a little gluten so that whatever tests I do next will be correct, but I want to take him totally gluten free after Tuesday's biopsy (assuming we get to do it.) thoughts?

After he has had the biopsy, there will be no reason for him to continue eating gluten. So going gluten-free immediately after the test would definitiely be reasonable.

This is just my opinion... but I think the "gold standard" of endoscopy is overrated.

As a person who has gotten a 504 plan for her child, I can tell you that having a gold standard diagnosis is definitely not overrated. No muss, no fuss, and I got everything I asked for. They wouldn't even have talked to me without the diagnosis.

[Mother of Jibril]

It is possible to get elevated results on either the TtG and Antigliadin tests and have nothing to do with celiac.

I agree with you on the antigliaden, but Ttg? Do you have a source to back that up?

They wouldn't even have talked to me without the diagnosis.

How do you know that? Also... what kind of accommodations were you asking for?

[cruelshoes]

I agree with you on the antigliaden, but Ttg? Do you have a source to back that up?

Open Original Shared Link

It is important to note that some people with Type 1 Diabetes, Hashimoto

[rosiemackymom]

Equivocal results are not in what is considered the positive range. It is possible to get elevated results on either the TtG and Antigliadin tests and have nothing to do with celiac (The antigliadin tests are the least sensitive test for celiac.) For you, it may be a matter of semantics because you are right on the line of being positive. If it were me, I would follow through with the biopsy anyway.

yes, I am having a biopsy I presume. I'm meeting with the GI April 1st (and am on the cancellation list for sooner) I plan to go gluten-free even if they say I don't have celiac, both because I have sympotms and to support my son.

After he has had the biopsy, there will be no reason for him to continue eating gluten. So going gluten-free immediately after the test would definitiely be reasonable.

As a person who has gotten a 504 plan for her child, I can tell you that having a gold standard diagnosis is definitely not overrated. No muss, no fuss, and I got everything I asked for. They wouldn't even have talked to me without the diagnosis.

Thats why i want it. But its been so frustrating, to be delayed and delayed. Hopefully he is well enough tomorrow. Cross your fingers or say a little prayer or whatever you do, please

[Mother of Jibril]

"It is important to note that some people with Type 1 Diabetes, Hashimoto

[rosiemackymom]

I had heard that about tTG and other auto-immune conditions before, but since my son also has celiac (or well, unless he has a negative biopsy) it seems likely to be celiac. I have type 2 diabetes, but it is not auto-immune and does not generate tTg. Honestly out of all of those options, I hope its celiac causing my elevated tTg!

I think 504s are useful at school. We have IEP for othe conditions for my daughter and it has been very very useful at times to have concrete documented reasons for things. Very, very useful. I will be pursuing that for Macky when the time comes as appropriate.

[gfb1]

[snip] ... The problem is that gluten can easily travel through your digestive system into your breastmilk ... [snip]

is there any evidence for this?? certainly, the gliadin peptide (NOT gluten) is in the bloodstream; and without going into a treatise about mammary gland biology; i would be very surprised if gliadin found its way into the secretory process of milk production...

[cruelshoes]

is there any evidence for this?? certainly, the gliadin peptide (NOT gluten) is in the bloodstream; and without going into a treatise about mammary gland biology; i would be very surprised if gliadin found its way into the secretory process of milk production...

This was not directed towards me, but here is a link for you.

Open Original Shared Link

Presence of high levels of non-degraded gliadin in breast milk from healthy mothers.Chirdo FG, Rumbo M, A

[gfb1]

This was not directed towards me, but here is a link for you.

Open Original Shared Link

thanks much; i have a good friend who is a nationally recognized mammary gland biologist... i'll sneak it by him for his opinion; mine follows...

Gliadin was detected in all 49 milk samples. Its concentration varied between 5 and 1200 ng/ml (mean, 178 ng/ml). In colostrum (n = 14) gliadin levels were higher (range, 28-9000 ng/ml; mean, 883 ng/ml), not being detectable in one case. Gliadin was detectable in 14 of 31 serum samples, in which levels were lower than in milk and colostrum samples (mean, 41 ng/ml).

gliadin was found in ALL milk samples; but less than 1/2 serum samples. also, the striking increase in concentration of gliadin in milk might suggest that the mammary gland is concentrating gliadin... not sure i buy that.

also, the lack of correlation between serum levels and milk levels of gliadin is suspect.

i am also concerned about the accuracy of the assay (there were several technical errors in the authors companion paper Open Original Shared Link) -- which could explain the age of the article and the lack of replication.

btw; lots of folks like to peruse pubmed and usually use the national library of medicine Open Original Shared Link... imho; Open Original Shared Link is much more informative and a more pleasant interface... just another of my $.02...

[gfb1]

thanks much; i have a good friend who is a nationally recognized mammary gland biologist... i'll sneak it by him for his opinion; mine follows...

[snip]

this probably doesn't belong in this thread ... but, if anyone is still reading, here was my buddies response:

I believe the authors are OK - because if you search on the first author, he continues to publish quite well in the scientific area. As for gliadin, almost anything that is in the circulation can be detected in milk at some level. Most are insignificant, but for one allergic to gliadin - this could be a problem. As for gliadin antibodies, while the IgG1 transfer from serum to colostrum is very high, the process during copious milk secretion is very low - yet still detectable. Furthermore, IgG2 and other antibodies are detectable in milk. Thus, maternal antibodies continue to be detectable in milk (see below). Mammary tissue transglutaminases would make the gliadin more soluble so that it would likely appear in milk skim phase.

1: J Pediatr Gastroenterol Nutr. 1992 Aug;15(2):159-62.Links

Gliadin-specific and cow's milk protein-specific IgA in human milk.Juto P, Holm S.

Department of Clinical Virology, University Hospital, Ume