NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Gluten Sensitivity / Celiac Disease (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/)

- - Eosinophils (https://www.neurotalk.org/gluten-sensitivity-celiac-disease/3797-eosinophils.html)

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. :eek:

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:

For example, such eosinophil-deficient mice were protected from airway remodelling but not allergen-induced airway dysfunction in an animal model of asthma (13). The eosinophil is involved in many inflammatory processes occurring in a variety of organs, especially the airways and the lung, where its role may be either beneficial or detrimental. For example, an eosinophil-mediated inflammatory response is usually considered beneficial during parasitic infestation, whereas eosinophilic infiltration of the bronchial wall participates to the pathophysiology of asthma. Although major advances have been made in the understanding of eosinophil biology, it remains to be determined how the different stimuli potentially induce the differential release of the variety of granule proteins and/or cytokines contained and/or synthetized by this cell type. Of note, research on eosinophil is hampered by the inability of murine eosinophils to degranulate either in vivo or in vitro, in contrast with human eosinophils, and observations issued from animal studies may not always be applicable to human disease.

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

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. :D

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

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.

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:confused: 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.

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

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

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 :eek:). 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).

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:

We’ll talk to Jori, who was diagnosed with Eosinophiliic Disease. Eosinophilic disorders occur when eosinophils, a type of white blood cell, are found in above-normal amounts in various parts of the body. When the body produces too many eosinophils, they can cause chronic inflammation resulting in tissue damage. Jori is allergic to 44 types of food and can only eat meat, potatoes and a few fruits and vegetables. Because Jori is malnourished, her doctors are considering putting her on a feeding tube to provide all of her necessary nourishment. We’ll also talk to Jori’s parents, Ellyn and Fred who are here to discuss their daughter’s disease and a foundation called Cured, which urges research for Eosinophiliic Disease.

Claire