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10-01-2006, 01:35 PM | #1 | ||
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Junior Member
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Hello,
Haven't been here for a while. Kayla is 8 yrs old and has Autism, Tourette's, and OCD Traits. She was recently diagnosised by her Ped. to having acid reflux. However, we now believe she has had it from the age 2, but it was misdiagnosised as suspected seizures(choking and vomitting in sleep). So far, she hasn't been responding to the medications very well. Kayla was on Prevacid for 1 1/2 month the first time, than was switched to Zantac for about 2 weeks which didn't work due to the her aversion to the taste of the liquid medication. She is now back on Prevacid. Last night she got sick shortly after taking it, and woke up this morning feeling sick again. We gave it to her again this morning but it did not help. She hasn't been eating well except in the afternoon. Which can also be variable. Today, she hasn't been eating well at all. I just got the allergy testing back. Which is confusing... They did IGE and IGG Rast testing. IGE Total...Conc IU/ml...25.00 Absorbance..0.166 Egg white....0.12 (I Mild reaction) Absorb.....0.030 Wheat...0.02 (Negative) Milk was negative in both IGE and IGG Testing Wheat...11.55 (III-Moderate) in IGG Testing only. Absor..1.016 So now I am wondering if she is allergic to Wheat instead of milk which we were eliminating. She also has been tested for Celiac Disease through the blood test several times which have been normal. I have Celiac Disease. She has been on the GF diet in the past but we did not see much difference. Is there a test for Gluten Intolerence vs Celiac Disease? So far, she has had IGA and IGG testing once, and the anti-tTG/anti-endomysial, which were both negative. The IGA was negative and the IGG was equiv., so they did the other testing. She is also allergic to grasses. Also, what does it mean when the allergy testing shows a wheat allergy for IGG but not for IGE? Also, are her IGE Total Levels considered to be low at "25.00"? Are is this still within the normal range? She will be going back to Wisconsin this Friday. Any ideas of testing anyone might suggest we might want to do? I know that he is going to do an Asthma test since she is having chest pain with the reflux. She also has a cough that I think is related to the reflux. Although, at times it is hard to tell from Tics or a cold. We went recently to Wisconsin to see a DAN Doctor at the Allergy Associates. Rast IGE tested Dermatophagoides farine?, Egg White, Cow milk, wheat, corn (flour), peanut, Candida Albicans, and Altemaria tenius. IGG tested for Cow milk, wheat, candida albicans. Kayla also has a history of having dental problems we thought was related to the medications, but now we wonder. She also has trace/low amounts of Ketones in her urine (unexplained) She will see a GI Doctor that visits in November. We are going to ask if they going to do stomach testing to test for Celiac while they are at it. We are now wondering if she has EE, which we heard is related to allergies. Her brothers also had testing. One of her brothers had very high IGE Totals at 223.48 and he is 12 yrs old. His Grasses for IGE came back at 26.71 (V) which is very high. Can this cause a severe reaction like food does? If the grass counts get too high? He also has Asthma. On the IGE testing it showed he was allergic to Egg Whites .10 (I), Cow Milk .15 (I), Wheat .59 (III), Corn .31(II), Peanut .51 (III), Ragweed .75 (III). The doctor though he wasn't allergic to Wheat or Corn instead thought it was cross-reactivity. Now, I have read that during pollen season that one can have reactions to the food is the same group. So might he also be allergic to wheat and corn during pollen season? He also appears to get itchy while eating Watermellon and Cantelope. His IGG on milk came back 14.47 (III), and Wheat 2.37 (I). Skin testing showed allergies to tree pollens, grass, cats, dogs, and mold. My oldest also showed more reaction to the IGG than the IGE his total was 69.73 and he is 15 yrs. Thanks Diana Thanks Diana |
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10-01-2006, 01:43 PM | #2 | |||
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New Member
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Hi Diana. IGG means that your child is intolerant, as opposed to anaphlyxis-type allergy. If your children are allergic to grasses, you also need to keep in mind that most grains, including wheat and rice, are members of the grass family. An allergy or intolerance to grass could very easily translate into an allergy or intolerance to wheat or rice. Did your daughter have an endoscopy with biopsy for a diagnostic tool, or just the bloodwork? It is possible that she could be celiac, just not have enough damage to show up on tests. Did she have the genetic test run? I hope you are able to figure out what is going on with your kids soon!
~Dessa~ |
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10-01-2006, 02:12 PM | #3 | ||
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Senior Member (jccglutenfree)
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Hi Diana,
Have you read this site yet, about the relationship between gluten and GERD? http://www.cryingoverspiltmilk.co.nz...uxdisease!.htm Anne just posted some info the other day about Dr. Rodney Ford here~ http://forums.braintalk2.org/showthread.php?t=2065 The positive IgG testing suggests some degree of wheat sensitivity. There is a food allergy page in The Gluten File linked below, that has some info on IgG/IgE testing and what it means. Classic allergy is based on IgE reactions. IgG reactions are considered 'delayed' food allergy. Some of the allergy sites listed there give good explanations. Generally, mainstream allergy testing only looks for IgE allergy, but it appears that the idea of IgG allergy is catching on. There is also a page about gluten sensitivity vs. celiac disease with links to websites of doctors who are more open to the idea that gluten sensitivity can cause problems in people who don't have celiac disease. The IgG antibodies seem to be the only indicator some of us have. Here are a few things about Gerd and asthma. They can also be related. Quote:
I may have more later, and I will have to reread your post more carefully. I am in a hurry, but this is what I could find quickly. Sorry to just dump and run. Oh..you might also check out TGF page called Not Celiac? It reviews some other information on food allergy, protein intolerance, etc. Cara
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10-01-2006, 02:40 PM | #4 | ||
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Member
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The most sensitive test for gluten sensitivity is Dr. Fine's stool test through www.enterolab.com This test cannot diagnose celiac disease as celiac disease is currently defined by a positive intestinal biopsy or a positive skin biopsy. Dr. Fine contends that the antibodies to gluten will first show up in the gut before they show up in the blood and before damage is done to the villi. Here is the link to the section about gluten sensitivity vs celiac disease on The Gluten File that Cara mentioned http://jccglutenfree.googlepages.com...sceliacdisease I know that if one has a low total Iga then all Iga may give false negative results. I don't know how a low IgE affects tests. This may help http://www.dlslab.com/dls/page_serve...96EEE16E2B313C It says <80 for an 8 year old. Anne |
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10-04-2006, 07:06 PM | #5 | ||
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Junior Member
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Hi,
Thank You, for all the great information. We went to the Ped. today, and discussed Kayla's reflux. She is still having problems and is on the maximum dose allowed. Unfortunately, she isn't able to do anything until we see the GI Doctor coming from Iowa City. Has anyone ever seen Dr. Biship? So far, Kayla has never had any testing done, except allergy testing and blood test for Celiac Disease. I discussed the IGG testing with her and she said to try her on a wheat free diet, which we have already started. We were told that the IGG is a protein, and that it does not show allergies? Can anyone explain this to me? Joshua on the other hand came back with IGE reactions to corn (II), Wheat (III), milk (I), Peanuts (III), and eggs (I). We asked the doctor what this means in regards to food. Can he have any of these items in limited quantity, especially the mild foods? Also, what about shots and medications? We have asked to see and Diet. to talk about how to plan meals. Also, is there other conditions that can mimic Acid Reflux that do not adhere to Previcid medications? Also, can someone sufficate if they reflux in their sleep? There is a strong family history of Acid Reflux with both my husband and his mother having it. She also had Stomach and Throat Cancer and was not a smoker. Also, does anyone know of any good Ped. GI doctors at Mayo, Rochester? Thanks Diana |
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10-04-2006, 07:14 PM | #6 | ||
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Junior Member
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Hi Diana. IGG means that your child is intolerant, as opposed to anaphlyxis-type allergy. If your children are allergic to grasses, you also need to keep in mind that most grains, including wheat and rice, are members of the grass family. An allergy or intolerance to grass could very easily translate into an allergy or intolerance to wheat or rice. Did your daughter have an endoscopy with biopsy for a diagnostic tool, or just the bloodwork? It is possible that she could be celiac, just not have enough damage to show up on tests. Did she have the genetic test run? I hope you are able to figure out what is going on with your kids soon!
I will do some research on the grass families. I do know that Joshua also says he gets itchy when he eats watermelon and cantelope. Do your know how one would react to an intolerance vs allergic reaction? I am wondering about acid reflux, could one get acid reflux as an intolerance reaction? She has not had any endoscopy or other testing done yet, except the blood testing. She however did have some genetic testing done that showed she had an elevated Carbohydrate Transferrin level, but the next level was normal. The Genetics said that she did not have the condition related to that. She also has a copy of 2q13 missing on one of here chromosomes. Thanks Diana |
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10-04-2006, 08:04 PM | #7 | ||
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Senior Member (jccglutenfree)
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Check out some of these sites. They have good explanations of the various types of reactions. Our mainstream allergists usually only focus on IgE "immediate" allergies, not IgG "delayed allergy" . I have no connection to these sites, but they offer some quick reviews of the subject matter.
http://yorkallergyusa.com/dfa.html http://www.foodallergytest.com/ (you need to poke around this one) The bottom of this one has some articles on GERD: http://www.foodallergysolutions.com/...ergy-news.html Quote:
http://www.cryingoverspiltmilk.co.nz...uxdisease!.htm You might be able to find something helpful in these tips, too! See Appendix B http://cantbreathesuspectvcd.com/page10.html Now that I have exhausted the resources I have given you, I wish I had some personal experience. Well, for myself, my GERD greatly improved on a gluten free diet, but I don't have any experience with my children. But...others have~ and I hope they will post. Cara
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10-04-2006, 08:18 PM | #8 | ||
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Member
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I don't have any reflux experience, but have also heard cow's milk is a big culprit. I wanted to suggest you cross-post over on the Child Neurology forum (http://forums.braintalk2.org/forumdisplay.php?f=9). However, I get the feeling that most of the Child Neurology folks are migrating back to Original BrainTalk. So, I'd also suggest posting there, on the original Child Neurology forum (http://brain.hastypastry.net/forums/...play.php?f=115 - if you haven't already been here, you'll have to register. You can use your same name as here.). Lots of those folks have reflux experience, and they might be able to tell you about doctors, too.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free. |
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10-04-2006, 09:59 PM | #9 | ||
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Junior Member
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Hello,
I have been going to the websites I have found on this site. I really liked the "Crying Over Spilt Milk". Anyone here have kids with multiple food allergies like milk, wheat/gluten, corn, peanuts, and eggs? I am finding it challenging to find food without all five of these ingredients. I did find rice chex for cereal. But wonder since Joshua has such a strong reaction to grasses if this will affect him too. So far, we don't know what IGE reactions he is having to the foods, since we don't usually see any outward allergic signs. Can IGG reactions impact as IGE reactions but not show up as an immediate reaction? I do now notice that his ears do change red when he ate a food at school with one of these ingredients. I just got the doctor's script for eliminating the foods. How does one get the school to make lunches free of these foods. My son is on an IEP and is in the Level 3 placement. It will be really interesting when they go to McDonalds and other places and get lunches there. Is there any fast food places that anyone can recommend to be free of these foods on some of their menu items? I will also look into some of the recommendations on the can't breath...website. I hope some of these will help Kayla, since she has many of the symptoms listed there. We have been using Soy milk in place of dairy. But, I know the school isn't following this diet. Our doctor wouldn't write a script but referred us to the allergist to do it instead. So, I will call them tomorrow to see if they will do it. I Hope. Any ideas of lunches for school which do not have to be refigerated or cooked. This is our schools regulations... Which I think will be difficult to do. Also, does anyone know of any financial programs that will assist in paying for the speciality foods since they can be expensive when you are putting your whole family on them. My oldest son also came back milk, egg, and wheat allergy. Are there foods you can make that do not need special ingredients, like snack foods minus (wheat, corn, peanuts, milk, eggs). Thanks Diana |
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10-04-2006, 10:33 PM | #10 | ||
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Member
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Barley is a sneaky ingredient - I have been fooled more than once by barley. It is not in the top 8 allergens so it does not have to be in the allergen statement. It is often hidden as "malt". The only place I know of that helps people with the cost of the GF diet is the UK. From what I understand, if you are diagnosed by biopsy, then the food is a prescription. I don't know of a program in the US. Most insurances will not even pay for a consult with a dietitian The medical community does not see the heal qualities of food. Too tired right now to post links to fast food places. Many of them will have info on GF selections. This may help you for McD's http://www.mcdonalds.com/app_control...nts.index.html Anne |
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