Didn't Do The Correct Tests?

[bugsmom]

I just called the Children's Hospital to schedule an appointment with a GI doctor there that has a "clinical interest" in Celiac disease. We have already seen a GI there a few months ago, but her interests were elsewhere and when she did mention celiac several months ago she only told us that we would have to do a biopsy -- no mention of a blood test first -- so we declined because we didn't really understand and she did a crappy job of explaining it (something I am still mad about and also a part of the reason I would like to change GI'). Anyway, when I tried to make this appointment, they called me back and said that I could not get into the "celiac clinic" without a diagnosis. What the hell??? This is the same hospital that we were in three months ago that ran the blood tests that were sent to our pediatrician, who then told us that the results were positive. Still, the hospital insists that they only have a test for IgA (under 3) and IgG (28). They said that although the IgG score is slightly elevated, it is not in and of itself an indicator of celiac. They said there was no Ttg run -- which is the one they wanted. They said that without it they could not diagnose celiac. I don't understand enough and cannot figure it out in any of the books exactly what these numbers mean -- it seems that there are a lot of potential tests and no explanation of any scores anywhere -- does anyone understand what these numbers mean?

I called the pediatrician and she confirmed what the hospital said -- they didn't run all the tests and that they told me when I called in July to find out the results she told me they were positive based on the IgG. She said that anything over 18 is considered positive.

So now here we are and they are telling me that in order to see a doc with a greater knowledge of celiac, I have to get a blood test to confirm -- well, we have been gluten-free for two months now -- what are the chances that the test is going to give us what we want? I don't even know who to be more angry with -- the hospital who can't get the tests right, or my pediatrician for not knowing what the tests really were. I swear, when you get a good doctor it is fantastic, but when they are bad . . . ugh. . . nothing will make you lose faith in the medical community like having sick child.

We did have enterolabs tests done, which I posted a few days ago, and they certainly confirm a gluten sensitivity at the least -- but it doesn't sound like the hospital is interested in those tests.

Our enterolab tests also said that he does not have the celiac gene -- but does have two gluten sensitivity genes. I still don't understand -- his malabsorbtion scores were through the roof. Is it possible to have severe malabsorbtion issues and not have the villi damage that constitutes celiac? And if so, what the heck does it even matter then? I mean, if he is still having sub-microscopic damage being done that is causing the anemia, bloated belly, lack of appetite, etc. . . . if he runs the same associated risks, and all the same complications, why does "celiac" get the diagnosis and treatment at a clinic with a specialist, but "gluten intolerant" affords us nothing?

[azmom3]

I just called the Children's Hospital to schedule an appointment with a GI doctor there that has a "clinical interest" in Celiac disease. We have already seen a GI there a few months ago, but her interests were elsewhere and when she did mention celiac several months ago she only told us that we would have to do a biopsy -- no mention of a blood test first -- so we declined because we didn't really understand and she did a crappy job of explaining it (something I am still mad about and also a part of the reason I would like to change GI'). Anyway, when I tried to make this appointment, they called me back and said that I could not get into the "celiac clinic" without a diagnosis. What the hell??? This is the same hospital that we were in three months ago that ran the blood tests that were sent to our pediatrician, who then told us that the results were positive. Still, the hospital insists that they only have a test for IgA (under 3) and IgG (28). They said that although the IgG score is slightly elevated, it is not in and of itself an indicator of celiac. They said there was no Ttg run -- which is the one they wanted. They said that without it they could not diagnose celiac. I don't understand enough and cannot figure it out in any of the books exactly what these numbers mean -- it seems that there are a lot of potential tests and no explanation of any scores anywhere -- does anyone understand what these numbers mean?

I called the pediatrician and she confirmed what the hospital said -- they didn't run all the tests and that they told me when I called in July to find out the results she told me they were positive based on the IgG. She said that anything over 18 is considered positive.

So now here we are and they are telling me that in order to see a doc with a greater knowledge of celiac, I have to get a blood test to confirm -- well, we have been gluten-free for two months now -- what are the chances that the test is going to give us what we want? I don't even know who to be more angry with -- the hospital who can't get the tests right, or my pediatrician for not knowing what the tests really were. I swear, when you get a good doctor it is fantastic, but when they are bad . . . ugh. . . nothing will make you lose faith in the medical community like having sick child.

We did have enterolabs tests done, which I posted a few days ago, and they certainly confirm a gluten sensitivity at the least -- but it doesn't sound like the hospital is interested in those tests.

Our enterolab tests also said that he does not have the celiac gene -- but does have two gluten sensitivity genes. I still don't understand -- his malabsorbtion scores were through the roof. Is it possible to have severe malabsorbtion issues and not have the villi damage that constitutes celiac? And if so, what the heck does it even matter then? I mean, if he is still having sub-microscopic damage being done that is causing the anemia, bloated belly, lack of appetite, etc. . . . if he runs the same associated risks, and all the same complications, why does "celiac" get the diagnosis and treatment at a clinic with a specialist, but "gluten intolerant" affords us nothing?

Hi bugsmom,

My son's blood results were almost identical to yours (IgG 29), the others negative (he did have the ttg test run though). We can't even get into our GI doctor until middle of October and we booked the appt in June. I'm following this thread to see what you find out as I have been very curious as to what the numbers mean as well and why wouldn't the others be positive if he has celiac. We haven't done enterolab yet but hope to pretty soon. I'm so sorry for the problems you've encountered so far. I hope you will figure everything out soon. Good luck!

[mouse]

I don't have a young child anymore as I am a grandmother of an almost 19 year old. But, this is crap. Please excuse my language. If you get the blood test done and it says positive, you then are told to see a GI, who then tells you that if you don't have a positive biopsy, then you do not have Celiac. This is so ridiculous. I am sorry to tell you that you would have to put your son back on gluten for about 3 to 6 months to redo the blood tests. But, if he is still bloated and is having severe bathrooms issues (after being gluten-free for 2 months), then I would think a biopsy might show that the villi are not standing up like they are suppose to do. The only thing is that the GI has to take the biopsies from 8 to 10 different places. I believe that there are some children on here that had negative blood tests, but positive biopsies. I think that you have to figure out a way to get beyond the GI doctor's staff and directly to him yourself. Can your ped. doc. call and get you in to him. Because of the bloating, etc. I really don't think that this should be fooled with.

[bugsmom]

I don't have a young child anymore as I am a grandmother of an almost 19 year old. But, this is crap. Please excuse my language. If you get the blood test done and it says positive, you then are told to see a GI, who then tells you that if you don't have a positive biopsy, then you do not have Celiac. This is so ridiculous. I am sorry to tell you that you would have to put your son back on gluten for about 3 to 6 months to redo the blood tests. But, if he is still bloated and is having severe bathrooms issues (after being gluten-free for 2 months), then I would think a biopsy might show that the villi are not standing up like they are suppose to do. The only thing is that the GI has to take the biopsies from 8 to 10 different places. I believe that there are some children on here that had negative blood tests, but positive biopsies. I think that you have to figure out a way to get beyond the GI doctor's staff and directly to him yourself. Can your ped. doc. call and get you in to him. Because of the bloating, etc. I really don't think that this should be fooled with.

It is crap -- so much of this is crap.

There is no way that I am putting him back on gluten. This is a kid who, three months ago was still 90% breastfeeding. We were dealing with almost total food refusal and were fearing a feeding tube. He still isn't eating full meals like we would like, but he is a thousand times better than he was before. Diagnosis or no diagnosis, we are not going back to gluten. Neither he, nor my breasts, can handle going back there again. Even if we can't get in to the GI that I want. He actually isn't still bloated - that went away pretty quickly. He is still pretty constipated, but his diet isn;t very good yet. Most of what he eats is cheese. He loves cheese -- all kinds of cheese. No amount of fruits and veggies can offset th amount of cheese he eats. Our nutritionist was encouraging the cheese and ice cream because of the calories -- he has been the same wieight for well over a year. But the enterolab tests say that we need to get him off casein. This is probably a major factor in the continued constipation. We are working on it gradually because I don't know how to replace his foods just yet -- I don't know where to get the calcium and protein that he is currently getting from all the dairy. Even the calcium vitamins he takes have casein. Anybody know of a good children's chewable calcium that is casein free? This is part of the reason I wanted to get into the celiac

GI -- for help with the diet.

I guess if all else fails I will just keep searching for a better nutritionist -- and keep reading.

[Guest nini]

do what I did... keep your child gluten-free and tell the medical community that he is gluten intolerant and you are NOT going to put him through anymore testing to satisfy their morbid curiousity. Honestly it doesn't matter if it's Celiac or gluten intolerance as it's one and the same, and you are probably better off without a dx of Celiac on his permanent record. I will NEVER put my child back on gluten and now that she knows what happens when she accidentally is exposed to it, she will not willingly eat it either. If you want to pm me to ask any questions, feel free to do so, or e-mail me at nisla@comcast.net and also you can click on the link in my signature and go to the bottom of my web page and download the "newbie survival kit"

good luck and ignore the stupid Dr.s, the experts that I've spoken with agree that positive dietary response is the most valid indicator of gluten intolerance, and if the bloodwork was even slightly elevated you have your answer. Don't worry about it any more and get on with the business of keeping him gluten-free and healthy.

[CarlaB]

I, too, have two gluten intolerant genes. I also presented "classic celiac" symptoms. When I went to the GI for the first time (the second time for my negative biopsy was the last time ), the doc listened to my symptoms, looked at me and said "celiac, but while we're testing for it, we're also going to test for other diseases that can accompany it." There was no doubt in his mind or mine. I did a six week gluten challenge, which I wouldn't wish on my worst enemy, and it wasn't long enough and the test came out negative. Truthfully, I don't know that it ever would have been positive because I don't have the celiac genes.

Keep in mind that at this point in time there seems to be more that they do not know about this disease than that they do know! You can keep him gluten-free without a doc's supervision. Maybe in a year have the absorption test redone to see if there's improvement -- or at least talk to Enterolab about doing that. Remember, there is a doctor who runs Enterolab!