Only Elecated Igg

[mlana]

My son had a celiac panel done this week (he is 7) in which only the IgG came back as positive (60). We have a great doctor who really listens. He wants my son to go on a gluten free diet for a couple of weeks and then redo the panel, to see if any of the numbers change. I understand that this gluten-free challenge could make a latter biopsy less definitive, but his recommendation seems like a good first step to take with a 7 year old. Any thoughts or suggestions before we go ahead with the gluten-free challenge?

Thank you- I have learned so much already, just by reading at this forum site.

Sorry, first post and I mistype! I meant elevated

[TCA]

My son is 3 and had an elveted IgG of 56 and a slightly elevated IgA. he had 2 negative biopsies, but the diet was the tell-tale evidence. He got sooo much better, but it took about 3 weeks. I think a diet challenge is reasonable. Is he having a lot of symptoms?

[tiredofdoctors]

Not to scare you, but I have had an "outrageously" elevated IgG (according to my neuro) -- when it got to 60, it had gone down -- and have also had an elevated IgA antigliadin antibodies. I do NOT have antitransglutaminase nor antiendomysial antibodies, and my small intestine biopsy was negative. The Celiac Disease (what my doctors are calling it) has affected the cerebellum of my brain and the retinas of my eyes. I have such an ataxic gait (walk like a drunk and fall) that I'm now in a wheelchair. I am COMPLETELY gluten-free in order to keep the disease from progressing. My IgG antigliadin is finally down to 12. My MD said that he can tell that I have HAD to be strict in order for the level to go down that much.

I'm not saying that this is going to happen to your children, but I would certainly watch the antibody levels. I would hate for this to happen to children. I'm having a hard time dealing with it at 44, I can't imagine it happening as a child.

[mlana]

Thank you for your responses. My son's symptoms are (to this point) entirely digestive in nature. I am having a Celiac panel done tomorrow, as well, as I have had lactose intolerance and IBS for years. We are hoping that it will shed more light on his problems. I have read that 7-10 % of celiacs don't have IgA antibodies, will the "regular" celiac panel tell if he has IgA antibodies at all, or does that test have to be through stool/saliva. It will be interesting to see what my results are, from a neurological perspective, as I have had (as my loving DH puts it) a "funky neurology" for years too.

[cultureslayer]

I have never understood why everyone is so excited about getting a biopsy. Functional changes are more sensitive than pathological ones. You know your son better than your doctor does, and you are just paying the MD for his professional opinion and access to tests and drugs the government has made otherwise unavailable to you. Since you don't need the scripts and you've already had a blood test, the doctor is more there for support at this point.

I had -AGA and TTG IgA tests but a + (25) IgG AGA so I started the diet about a week and a half ago. IMO it's the easiest way to know what's the problem unless you just like the idea of an endoscope.

I guess by now you can figure out that I've been around Drs enough to be highly sceptical about the usefullness of most of them. Mine won't admit that I might have celiac and thinks the +IgG is an anomaly, even though I have a strong family history of autoimmune disorders that might indicate IgA deficiency. I can figure most thins out on my own so I only see him for scripts and tests anyway, and he's the best I have found around here (the others get pissy when I tell them what script I want and offer to send them journal articles to back up my opinion even though I'm a biomedical grad student and we both know that I understand the studies as well as they do).

[VydorScope]

If the blood test is postive, skip the bisopy, IMO. The bisopy give no addtional information, and is fiarly likly to give a FALSE NEGATIVE.

[slpinsd]

mlana-

what is your son's total immunoglobulin IgA? You always have to view this in relation to other test results. If the total IgA is deficient or on the low end, it skews the test results, raising the IgG count and keeping the IgA's down.

[cultureslayer]

I forgot to mention that for my IgG, the range was <9 for normal.

[mlana]

I appreciate the feed-back. Perhaps if I share more of my "thought process", you will be able to shed even more light on this subject. For at least a year, my son has complained (on and off) of digestive problems. He also had issues with intermitent dia. and gas. All of the tummy problems were so "here again gone again" that it never seemed problematic enough to go to the doctor. Before this sounds heartless, he really wasn't having that much trouble. Additionally, I have had IBS and lactose intolerance for years - and the symptoms seemed so similiar. At his 7 year well check in Jan, I did talk to the dr about the ongoing (low level) digestive stuff. The dr. wanted to try a reflux med first. We did, didn't seem to be the issue. I asked for a celiac panel and we tried a lactose challenge. (I kept him off all dairy for 5 days, then made him a huge milkshake on an empty stomache, and then lots of cheese for the rest of the day.) During the time with no dairy, his symptoms did stay the same (indicating to me that dairy wasn't the only culprit.) Now he didn't end up in screaming pain from the reintroduction of milk - but he did complain more of a sore tummy. My DH, who has lived with my reactions to milk for years, believes that our son couldn't just be lactose in tolerant but we agree that he might be sensitive to milk.

Okay, long winded way to say this... We will be giving our son a gluten-free trial and monitoring his symptoms. But what if he is also lactose intolerant? gluten-free is very, very hard to do with children - and we can make it through 2 weeks okay, but what if the results are still hazy? Remember that his symptoms were never terrible, concerning and somewhat problematic, but always intermittent at best.

Thank you for your time in answering!

[Guest nini]

my daughter was dx'ed by positive dietary response and family history (me) alone... her blood tests were negative or inconclusive (as the Dr. did NOT run the complete celiac panel) anyway. I'm a big advocate of trying the diet and keeping a food journal and to not worry about a formal dx of Celiac. Since you do already have a positive blood test (which in my opinion is good enough) that is all you need. Initially I would keep him off dairy, but after a few months try reintroducing dairy and monitor his reactions. Many celiacs are lactose intolerant until the villi begin to heal because the tips of the villi is where the lactose is absorbed for digestion... I have talked to several celiac experts that all feel the biopsy is outdated and innaccurate. There is too much room for error in sampling and many Dr.s are unwilling to dx a celiac patient who is in the beginning stages of the diet and only has inflammation and does not show any villous atrophy. Why wait until there is full blown damage? If the antibodies are showing up in the blood, get the offending food out of the diet immedieately and don't look back! My daughters improvement was nothing short of miraculous! She is a very happy healthy six year old! And she loves the gluten free food!

[TCA]

My kids had trouble with dairy until they went gluten-free for a while. I then reintroduced dairy and they have had no issues. Since you're testing gluten, I wouldn't eliminate dairy and gluten at the same time, but keep in mind that some people need to eliminate dairy at the first and give their intestines time to heal. I have a food list of things I feed my son (he's VERY picky if you want me to send it to you. Just send me a PM with your e-mail address. Also remember that it sometimes takes longer than 2 weeks to see improvement. With my son, it was a gradual improvement with no D by week 3. If you see some improvement, you might want to continue the challenge a bit longer. I hope he feels better soon!

[mlana]

Okay, so now how do I exactly go gluten-free? I have read a lot on-line and at this forum. Should I do a search within this forum for a gluten-free diet or just do more on-line research. (It isn't the obvious stuff that I am unsure of - like wheat products, I just read some things on the forum about soaps etc.???)

Also, now that we are going to do a gluten-free diet as the next step, how long should this be before retesting his IgG?? My dr. is wonderful. He pretty much said we can do a bunch of investigating (on-line) about celiac and he will run any tests, etc. that we want. This isn't to say that he isn't also doing some research, but he knows our family likes to research and find out as much as possible - and he really listens to what we have to say and what we have learned. So whatever this panel suggests for a gluten-free trial will be what we go for.

Thank you

Oh, slpinsd asked about total immunoglobulin IgA. Would this information have been in a classic Celiac panel?? I do not have a personal copy of my son's report, but I am sure the dr. will give a copy if I ask.

[Guest nini]

How do you go gluten-free? The easiest way is to stick with foods that are NATURALLY gluten-free, like plain meats, fresh fruits and veggies and alternative grains like rice and quinoa... there are a lot of mainstream products that are naturally gluten-free, and many many substitute products. Don't go out and invest a ton in substitute products at first. There are some brands and products that are excellent and others that are terrible! This board is a great resource for finding out which ones most of us prefer!

I also have a "newbie survival kit" which is basically a collection of files, the Delphi list of mainstream gluten-free products, fast food restaurant menus, lists of naturally gluten-free menu ideas and so on. If you would like this e-mailed to you, just e-mail me at nisla@comcast.net and in the subject line put "request newbie survival kit"

[slpinsd]

If they did the FULL panel, like they are supposed to- they should have tested

antigliadin IgA

antigliadin IgG( the one you said was +)

antitransglutaminase or antiemysiol (sp) IgA antibodies AND

total immunoglobin IgA (this gives a baseline of how much IgA you produce as to measure the test results against) If you are IgA deficient, you won't produce enough IgA for it to come up positive on a blood test.

[tiredofdoctors]

If you're going to go gluten-free, this forum is the BEST place for advice, information and support. These people are amazing. You will get more good, solid information about a gluten-free lifestyle here than anywhere else, in my opinion. I have gotten more information and support -- I would stick with this. . . I'm not biased, huh? . . . Lynne