Night Elf Posted September 20, 2011 Share Posted September 20, 2011 (edited) Dd19's celiac test results came back just now. We haven't talked with the doctor yet, but I have a question. All of the things, such as Tissue Transglutaminase IGA and just IGA, are within range, but one was very high. There were 6 things listed. The one listed as high is Gliadin IGA, EIA. The normal range is < 11-, and it says that >17 is high. Her score was 55. So what does that mean? Should she go ahead and try the GF diet? I thought she should because it can't hurt to try. Advice? Oh, and how long should she go GF before she sees a result? Edited September 20, 2011 by Night Elf Quote Link to comment Share on other sites More sharing options...
HiddenJewel Posted September 20, 2011 Share Posted September 20, 2011 My understanding is that gluten can take several months to get out of your system. Quote Link to comment Share on other sites More sharing options...
jplain Posted September 20, 2011 Share Posted September 20, 2011 Normal IgA means that the results of the tests should be reliable. The positive anti-gliadin means that her body is reacting to gluten. The normal anti-TTG means that a gluten-related autoimmune attack isn't occurring...yet. Unless her doctor is quite progressive, he'll probably say the anti-gliadin is not relevant since the anti-TTG was negative. Did you get the genetic testing done? Don't start gluten free until hearing what her doctor has to say. But even if the doctor says celiac is unlikely, I'd proceed very cautiously. If it was me I'd probably cut out gluten now and assume that if I'm not now a celiac, I'm very high risk for future celiac or non-celiac gluten intolerance. If you haven't seen it already, this article might be helpful: Will a gluten-free diet improve your health? Quote Link to comment Share on other sites More sharing options...
Night Elf Posted September 20, 2011 Author Share Posted September 20, 2011 My understanding is that gluten can take several months to get out of your system. Aww... she was hoping it would just be a couple of weeks or so. Unless her doctor is quite progressive, he'll probably say the anti-gliadin is not relevant since the anti-TTG was negative. At the office visit, he said if the test came back normal, he wanted to try a round of acid reflux meds before we did any other testing. What he was zeroing in on was the fact that dd19 had episodes of waking in the middle of the night, feeling nauseus, and vomiting for 30 to 45 minutes and then going back to sleep. She felt fine going to sleep and waking up in the morning. It was just middle of the night yuck. But that hasn't happened in months, so I'm not sure why he is focused on that right now. Did you get the genetic testing done? I guess not. He did 2 tests. One was called Celiac Disease Antibody Panel and the other was Helicobacter Pylori Antigen (stool). On the celiac panel, the things listed were: Tissue Transglutaminase IGA IGA Gliadin IGA, EIA Gliadin IGG, EIA Reticulin IGA Reticulin IGG, Serum, Qual I can list numbers but as I said, the only one not within the normal range was Gliadin IGG. Don't start gluten free until hearing what her doctor has to say. But even if the doctor says celiac is unlikely, I'd proceed very cautiously. It's just difficult to know. Her symptoms have lasted for well over a year and her pediatrician (she sees until age 21) recommended a GI for the stomach issues and a neurogist for her dizziness and headaches. He also ran a series of blood tests and determined she had iron deficient anemia. The numbers on those tests are kind of confusing as well. I just don't know if we should follow through with the acid reflux meds and get the suggested MRI, or go GF and see if her symptoms improve with just a diet change. Her headaches started getting better once she started on the iron supplements. A neurology appt. seems a bit over the top at this point. Money is not the point here. I'd pay for the tests, but only if I felt they were necessary. I don't want to make the wrong decisions but I don't always trust the doctors. I'm tired of getting conflicting information. Her pediatrician thinks she has abdominal migraines, the GI said it could be celiac or acid reflux, and goodness knows what the neurologist will say, if anything. Honestly, I've seen tremendous improvement just from the iron supps. She has been trying to go GF for the past few days but hasn't done it completely because she realizes she ate gluten after the fact. Like yesterday, she decided to have some ice cream which she decided was okay but didn't think about the waffle cone she chose! :lol: Quote Link to comment Share on other sites More sharing options...
keptwoman Posted September 20, 2011 Share Posted September 20, 2011 If the numbers suggest celiac, the doctor will most likely want to do a biopsy to give an absolute confirmation and she still needs to be eating gluten for that. As for how long it will take to feel better, she will most likely feel better within weeks, but will still notice things improving for months, possibly things that she didn't even realise were related to gluten intake. Quote Link to comment Share on other sites More sharing options...
texasmama Posted September 20, 2011 Share Posted September 20, 2011 Some people are gluten sensitive without having celiac disease. Perhaps your dd falls into this category. The gold standard for diagnosing celiac disease is an upper endoscopy with a small intestine biopsy which shows flattened/damaged villi. I am not someone who needs this level of medical evidence in order to consider a gluten free diet, but some people really want a definitive answer. If you are in this category and think that a small intestine biopsy is in your dd's future, don't have her stop eating gluten until after the testing. Quote Link to comment Share on other sites More sharing options...
Night Elf Posted September 21, 2011 Author Share Posted September 21, 2011 I got the doctor's advice through email. He said, "... and the antibody test for Celiac disease shows one of 4 tests as positive. This is essentially a negative test in patients who are not on a gluten-free diet. I have taken the liberty to order an acid suppressor (omeprazole)..." He isn't going to order any further tests. It sounds like the decision is in our hands. I'm not sure what the omeprazole is going to do. The symptoms she has are all possible side effects of omeprazole. That seems quite a bizarre suggestion. Quote Link to comment Share on other sites More sharing options...
HiddenJewel Posted September 21, 2011 Share Posted September 21, 2011 Do your research on the acid suppressors. Quote Link to comment Share on other sites More sharing options...
texasmama Posted September 21, 2011 Share Posted September 21, 2011 My youngest dd's primary (obvious) symptom of gluten issues is severe reflux. She was on Prevacid twice a day prior to going gluten free. After removing gluten, her reflux went away. Quote Link to comment Share on other sites More sharing options...
juelle Posted September 21, 2011 Share Posted September 21, 2011 I went GF 8 years ago without any definitive test results from the GI, knowing that she ha nothing to offer as far as helping with my digestive distress symptoms. It helped almost immediately, but I believe that it takes weeks/months for the GI system to readjust and start processing food normally, is it ever does. (Mine hasn't completely.) But other symptoms did improve: depression and anxiety are the most noticeable. I hope your dd feels better soon. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted September 21, 2011 Share Posted September 21, 2011 I did not have any testing done, but I went GF to see if it made me feel better. Within days I felt better and had more energy. Things get better all the time. Quote Link to comment Share on other sites More sharing options...
jplain Posted September 21, 2011 Share Posted September 21, 2011 (edited) The anemia may be just another symptom. People with celiac disease and other GI tract disorders often have trouble absorbing iron, B12, and other nutrients. So while correcting any deficiency may make her feel better, it will not correct the underlying problem that caused the deficiency in the first place. Edited September 21, 2011 by jplain Quote Link to comment Share on other sites More sharing options...
HiddenJewel Posted September 21, 2011 Share Posted September 21, 2011 The anemia may be just another symptom. People with celiac disease and other GI tract disorders often have trouble absorbing iron, B12, and other nutrients. So while correcting any deficiency may make her feel better, it will not correct the underlying problem that caused the deficiency in the first place. Exactly. The gut still needs to heal which is another process. Stopping the offending foods is just the beginning of healing. Quote Link to comment Share on other sites More sharing options...
mchel210 Posted September 21, 2011 Share Posted September 21, 2011 (edited) Dd19's celiac test results came back just now. We haven't talked with the doctor yet, but I have a question. All of the things, such as Tissue Transglutaminase IGA and just IGA, are within range, but one was very high. There were 6 things listed. The one listed as high is Gliadin IGA, EIA. The normal range is < 11-, and it says that >17 is high. Her score was 55. So what does that mean? Should she go ahead and try the GF diet? I thought she should because it can't hurt to try. Advice? Oh, and how long should she go GF before she sees a result? http://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.html It is confusing. My dd has Gliadin Antibody IGG 20 but is negative for celiac. They said she may have sensitivity. BUT her biopsy came negative. She did have an ulcer though. Edited September 21, 2011 by mchel210 Quote Link to comment Share on other sites More sharing options...
Tammy (TX) Posted September 21, 2011 Share Posted September 21, 2011 (edited) Everyone is different, but I'd go gluten free before I tried an acid suppressor. One has side effects and one doesn't. (Edited:I meant to add that if gluten free doesn't help, then you can always try something else.) Medical doctors are behind the curve on gluten sensitivity. A positive test for gluten antibodies means your daughter's body thinks gluten is bad, whether she's celiac or not. http://www.naturalnews.com/033502_celiac_disease_gulten_intolerance.html I have positive gluten antibodies, but have never tested for celiac. I feel so much better on a GF diet and it has helped some of my chronic health problems (no more nausea, yay!) Edited September 21, 2011 by Tammy (TX) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.