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10-15-2006, 11:37 AM | #1 | ||
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Some of you may remember I was compiling information on high eosinophil levels before the obt blackout. For those who are new, the bottom line is that both dh and ds have raised e's and have had for years. No doctor has addressed this issue... or seems to be able to... and because both still have issues after going gf and multi-things free, I am looking in the e. direction for some hint of what to do next.
Also, for new people, do note that going gf and multi-things free has improved their health and quality of life by about 95%. Okay.... summary to date is pretty quick... I found that high e's seem, most commonly to be related to aspergillus. There is an enormous range of aspergillus and it is often found in packaged foods (another reason to stick to meat, fruit and veggies), dirt, dust, etc. So, perhaps the next question is how to isolate which form is the biggest offender for each individual? Hmmm Next question? How to eliminate it without making yourself crazy.... double Hmmmm... My biggest frustration is thinking that I'm spending all my spare time researching this stuff and it might not even be our problem. Hopefully sharing this stuff will help somebody... if not us. Here's a link to the pillow thread... don't freak out... it's just some stuff to ponder... Come to think of it, you should probably read this link last. http://forums.braintalk2.org/showthread.php?t=3784 http://www.blackwell-synergy.com/doi....x?cookieSet=1 Quote:
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Kind regards, KimS formerly pakisa 100 at BT 01/02/2002 Even Small Amounts of Gluten Cause Relapse in Children With Celiac Disease (Docguide.com) 12/20/2002 The symptomatic and histologic response to a gf diet with borderline enteropathy (Docguide.com) |
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10-30-2006, 08:46 AM | #2 | ||
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Kim,
I recently spoke to Dr. Fasano's nurse to see if we could skip my younger son's follow-up because he is doing well. Last spring he was quite sick and found to have increased eosinophils in his blood and colon. She asked what we were doing for him. I told her we had changed his diet by removing the foods he reacted to on the IgG delayed food allergy test and that we had worked with a nutritionist to add digestive enzymes, probiotics, and several vitamin supplements. I had been told last spring that Dr. Fasano's group did not fully support the delayed food allergy testing but went ahead with it anyway. Her response was to keep doing what we are doing and added that "most of our eosinophil kids don't do so well". So I guess this gives support to removing more than gluten from a diet. We pretty much follow a whole food diet also. Do your dh and ds take digestive enzymes? The site enzymestuff.com might be helpful. They might provide the missing link. --Judy |
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10-30-2006, 05:08 PM | #3 | ||
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Thanks for that.
It's nice to know that I'm not the only one struggling with it... And that there's not a magical answer already out there and I'm the only one missing it.
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Kind regards, KimS formerly pakisa 100 at BT 01/02/2002 Even Small Amounts of Gluten Cause Relapse in Children With Celiac Disease (Docguide.com) 12/20/2002 The symptomatic and histologic response to a gf diet with borderline enteropathy (Docguide.com) |
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10-31-2006, 04:31 PM | #4 | ||
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Junior Member
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Judy -
"most of our eosinophil kids don't do so well". I don't understand this statement. (My nephew had high eosinophils) Does she mean that kids with high eosinophils don't do well in general no matter what, or do better on a GF diet? Grace |
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10-31-2006, 06:21 PM | #5 | ||
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Grace,
I'm sure she'll pop in but I was here so thought I'd respond... From my finding a gf diet is a LARGE answer for e. kids... but not the whole answer. The trouble is, no one seems to know which direction to go to find the rest of the answer for them.
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Kind regards, KimS formerly pakisa 100 at BT 01/02/2002 Even Small Amounts of Gluten Cause Relapse in Children With Celiac Disease (Docguide.com) 12/20/2002 The symptomatic and histologic response to a gf diet with borderline enteropathy (Docguide.com) |
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10-31-2006, 07:33 PM | #6 | ||
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Hello to those I recognize from BT. I recently found this board and am glad I did! I have a 5 y.o. celiac w/ Hashimoto's(thyroid). Her last stool tests showed a higher than normal eosinophils. Her GI said not a concern but would most likely be attributed to a food allergy of sorts with no referral for further testing. I would be interested to know who does the IgG delayed food allergy testing. I suppose I should ask for a referral to an Immunologist. I had considered going back to Enterolab to do yeast and egg but I think more needs to be covered. I knew corn was a trigger of sorts for DD, she gets "puffy tummy" and sounds like she's got a cold. I recently took out all corn syrup items and have not heard any more complaints of tummy ache. I also stopped buying any items at Trader Joes's that are now labeled "processed on equipment that also process wheat", etc. We are pretty much a whole foods family save the favorite food bars. She takes a probiotic and a multi vitamin(GF/CF of course) and that's about it. The only thing I don't like is that she still has circles under her eyes sometimes. So yes, it is a puzzle for me too. I am interested to understand more about the statement of kids like this not doing so well and just what are eosinophils total effects on overall health.
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*************************** Karen |
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10-31-2006, 07:43 PM | #7 | ||
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Senior Member (jccglutenfree)
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Hi Karen... Nice to see you! ~
Check the Food Allergy page of The Gluten File... it lists the labs I know of that do IgG food allergy testing... there are quite a few these days. Here it is: http://jccglutenfree.googlepages.com/foodallergy Cara
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10-31-2006, 09:32 PM | #8 | ||
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Grace,
When I heard the response I asked in what way were they not doing well. I was told that most of the eosinophil kids still had some GI symptoms and possibly weight loss or poor growth. I think that we have found the answer for my son with removing the foods he is allergic to in addition to gluten. Growth is not an issue for him and he has not even missed one day of middle school this year (a personal best for him since 2nd grade). Karen, from what I have read it seems eosinophils can be elevated due to allergic response or from parasites. We used this lab to do the delayed IgG food allergy test http://www.optimumhealthresource.com/ I think that working with a nutritionist was also very helpful. --Judy |
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11-01-2006, 07:57 AM | #9 | ||
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That would go along with ds.
Apparently celiac kids gain all their weight back first and then go through bone growth. My ds had bone growth first after going gf (the first year growing twice what is expected for his age group), and although he is almost on the charts again for height, his weight never did pick up the way we were looking for. Can't get him to gain weight no matter what we feed him. Even on SCD, where they warn not to eat too many nut products so that you don't gain weight... he didn't gain weight (beyond the bit that he always seems to gain even when he puts himself on frequent fasts). Illness-wise: He also has not been 'sick' or sick enough to miss anything for the last 3 years (almost 4 ). Going SCD to clean him up and then relaxing into gf and other things free really got rid of the 'sickness' thing. (knock on wood).
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Kind regards, KimS formerly pakisa 100 at BT 01/02/2002 Even Small Amounts of Gluten Cause Relapse in Children With Celiac Disease (Docguide.com) 12/20/2002 The symptomatic and histologic response to a gf diet with borderline enteropathy (Docguide.com) |
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11-04-2006, 07:13 PM | #10 | |||
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Bumping up this thread. Here's a link I found from another board on Eosinophilic Disease:
http://www.curedfoundation.org/aboutee.html I guess there was a show on Montel October 30th about this too. Here's the blurb from his website: Quote:
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Two identical copies of DQ1; HLA-DQB1*0501, 0501 |
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