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Old 11-04-2010, 04:10 PM
 
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I guess the concrete things that it could tell me are if she had a specific enzyme deficiency (then we could focus on supping that one specific enzyme), or if she had an eos disorder, or if there is a structural problem... I'm not sure what else.
There's also the variable of being able to check it off the list. You've been wondering about a structural thing for a while, and it sounds like some of these other things can be actual, real, helpful information. It also sounds like you have SO MANY unknowns, no real solid evidence to go on, that it may bring some peace of mind to be able to say a definite yes or no to something.
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I guess the point is that I'm not willing (or brave enough maybe?) to just try stuff. Try supplements, stuff for adrenals, thyroid, whatever just to see what it does. In my mind, that's no different that giving her meds. I just don't like the idea of putting ANYTHING synthetic/processed/etc into her body unless I have a very specific reason to think she needs it. And I know that so many things have worked so great for other people on this board.... but I think we're a special case, because we're dealing strictly with IgEs and not intolerances, ya know? So while I think some of the supplements and things *may* work, I think they also may not. And that's a huge amount of money and time wasted.

Just to give you an idea of what we've already tried: CST, homeopathy, flower essences, cell salts, clipped her tongue tie, acupuncture, NAET, supped me (while bf-ing) with folate, B complex, P5P, iodine, nettles, quercetin, vitamin C, multi, magnesium, D, K, CLO, FCLO, kombucha, water kefir, probiotics, digestive enzymes (that ended horribly)... I'm sure I'm forgetting some. And for her directly: probiotics, CLO, D, mag, K, water kefir, Bubbie's sauerkraut... sure I'm missing some stuff on this list too. So after all that trying, 3 years later.... here we are.
I feel ya. It sounds like trying more stuff isn't where you're at right now. Not that more stuff won't be the answer, just that's not where your energy is currently?

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Yeah, definitely. I'm still considering the enzymes first... they are really the ONLY thing we haven't tried. And I'm not sure how I would even tell if they're helping- I guess if I don't see carrots anymore in her poop, huh? I called the GI back this morning, and they don't have a specific type/brand of enzyme that they recommend- she just said papaya enzymes.
Papaya enzymes=proteases, which likely wouldn't change the carrots How to tell if they're helping... Changes in appetite, changes in stool, changes in growth patterns, changes in mood... Some might be quick results, others might take a while longer to notice (like growth). I know you had an awful reaction to enzymes. Have you tried anything else aspergillus for yourself to be able to distinguish enzymes vs that? (that was your common denominator, yeah?)
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eta: I just went and found Moneca's last post in the Allergy forum (way before I was around here), and she's advocating for the SCD, but mentions that it's NOT necessarily the answer for kids with IgE allergies. Another post mentions that the problem with her kiddo was digestive issues, NOT allergies. Just sayin'.
What is attractive about a GI scope if you're thinking it's 100% IgE? And that's an honest question. If all the inflammation and what not is directly due to the allergies, then is there info that the scope can tell you that will help you address the allergies?


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Old 11-04-2010, 04:10 PM
 
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OH yeah- we did the lamb glandulars too.

Which enzyme am I looking for to break down carbs? That seems to be the thing she has the most trouble with.

eta: oops- xposted with Shannon. I honestly have no idea how the scope would give us IgE-related answers. The allergist was the one who was really suggesting it initially; he referred us to this GI. I think I'll make an appointment with him to talk it over again. And yes... no energy for trying more stuff right now.

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Old 11-04-2010, 04:12 PM
 
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I completely understand CS

I'd rather understand the why than seeming to just shoot in the dark.

How would a scope tell you about a certain enzyme deficiency? And it's the only way to test for EOS? I guess I'd be changing my vote then.
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Old 11-04-2010, 04:12 PM
 
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the allergy chat force posting up a storm!
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Old 11-04-2010, 04:16 PM - Thread Starter
 
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JR, I usually check here for new posts a few times a day. I skipped the whole day yesterday, which is a rare thing.
Goes to show how much I'm here that I think you're not here much.
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I completely understand CS

I'd rather understand the why than seeming to just shoot in the dark.

How would a scope tell you about a certain enzyme deficiency? And it's the only way to test for EOS? I guess I'd be changing my vote then.
Yes, scoping is the only way to test for eos disorders.
No idea about enzymes. eta: and yes, I realize that wasn't nearly directed at me, but. ..

Wife of Michael , SAHM to Aristotle 09/99 Raphael 06/07 and Marius 05/09 Known only in dreams but never forgotten: Euphrates Decluttering 290/2010
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Old 11-04-2010, 04:16 PM
 
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OH yeah- we did the lamb glandulars too.

Which enzyme am I looking for to break down carbs? That seems to be the thing she has the most trouble with.
amylases, alpha-galactosidase, glucoamylase and the fiber digesting ones like cellulases, xylanase.
http://www.enzymedica.com/products/CarbGest

eta: and the reason for incomplete carb digestion is usually inflammation which knocks the villi down.
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Old 11-04-2010, 04:17 PM
 
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OH yeah- we did the lamb glandulars too.

Which enzyme am I looking for to break down carbs? That seems to be the thing she has the most trouble with.

eta: oops- xposted with Shannon. I honestly have no idea how the scope would give us IgE-related answers. The allergist was the one who was really suggesting it initially; he referred us to this GI. I think I'll make an appointment with him to talk it over again. And yes... no energy for trying more stuff right now.
Amylase for carbs - there's some in saliva and if you have iodine and a saliva sample from her, you could check that at home. The rest is pancreatic. eta: and the disaccharidases on the villi.

So what are your options for getting real answers? Scope, trial enzymes, what else?

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Old 11-04-2010, 04:18 PM
 
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Holy geez... I'm xposting with everyone. JR- it was me that reacted to the enzymes- 3 different brands/blends. By the 3rd trial, I was on the floor curled up in a ball, writhing in (stomach)pain, within about 10 minutes.

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I completely understand CS

I'd rather understand the why than seeming to just shoot in the dark.

How would a scope tell you about a certain enzyme deficiency? And it's the only way to test for EOS? I guess I'd be changing my vote then.
Yes, I believe a scope is the only way to diagnose eos, but I'm not 100% positive. I'm not sure how they check the enzyme deficiency, but that's one thing the GI mentioned in the specific things he would be looking for.

Mom to DD1 (10/07) and DD2 (3/11)
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Old 11-04-2010, 04:19 PM
 
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We have been watching you struggle and suffer for the last couple of years and I hope you understand that we suggest things only because we sincerely care and wish we could just make it "all better", for you the most of any of us, I think.
On one hand, I do agree that trying different vites is no different than trying drugs with one caveat. If I take vitamins to address a suspected deficiency, whether that deficiency is borderline, overt or because of an increased need due to genetics or environmental factors, I am providing the necessary building blocks for my body to do what it needs to do. If I use drugs, I am simply covering the symptoms and making my body work in ways that it wasn't intended to do WHILE increasing the nutritional requirements of my body and/or depleting my body of nutrients. I'm not sure if that makes any sense but I hope it does. And I'm not saying "you should go and give her a bunch of vitamins", I'm just telling you how *I* see it.
You are the best JR at saying things in a such a lovely way.
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Old 11-04-2010, 04:20 PM
 
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Amylase for carbs - there's some in saliva and if you have iodine and a saliva sample from her, you could check that at home. The rest is pancreatic. eta: and the disaccharidases on the villi.

So what are your options for getting real answers? Scope, trial enzymes, what else?
uhhh....

Tell me home about the home testing!

eta: And sorry for hijacking the entire chat thread today. And thanks for all your suggestions- I really do value them.

Mom to DD1 (10/07) and DD2 (3/11)
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Old 11-04-2010, 04:24 PM
 
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CS - Don't be sorry you goof! We are all right along side you, you know that!
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Old 11-04-2010, 04:36 PM - Thread Starter
 
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CS - Don't be sorry you goof! We are all right along side you, you know that!

We're here to help! Sometimes it's easier to just talk things through. I thought that's why we made the chat thread?

Wife of Michael , SAHM to Aristotle 09/99 Raphael 06/07 and Marius 05/09 Known only in dreams but never forgotten: Euphrates Decluttering 290/2010
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Old 11-04-2010, 04:53 PM
 
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uhhh....

Tell me home about the home testing!

eta: And sorry for hijacking the entire chat thread today. And thanks for all your suggestions- I really do value them.
Iodine turns blue in the presence of starch, and salivary amylase breaks starch down into sugars. I'd have to look up the specifics, but the classic experiment involves mixing saliva, iodine, and starch for a long time, and you can watch the color disappear. I don't know how much saliva you'd need, or what the best form of starch would be (liquid starch? for ironing? flour?) but no special equipment required

Just know we all care about you!

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Old 11-04-2010, 04:54 PM
 
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JR, I am less inclined to post, maybe. But I'm here almost all the time.

Leigh, mama to Rostislav homeborn Aug 9 2007, and Oksana homeborn Feb 24 2011.
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Old 11-04-2010, 05:11 PM
 
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Iodine turns blue in the presence of starch, and salivary amylase breaks starch down into sugars. I'd have to look up the specifics, but the classic experiment involves mixing saliva, iodine, and starch for a long time, and you can watch the color disappear. I don't know how much saliva you'd need, or what the best form of starch would be (liquid starch? for ironing? flour?) but no special equipment required

Just know we all care about you!
Huh. That's pretty cool. I'm just googling a bit... looks like it will pretty much tell you if you have amylase or not, right? Or maybe I need to find an average time for the color to disappear to determine how severe the deficiency is?? Can we make this a forum science project?

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Old 11-04-2010, 05:20 PM
 
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Huh. That's pretty cool. I'm just googling a bit... looks like it will pretty much tell you if you have amylase or not, right? Or maybe I need to find an average time for the color to disappear to determine how severe the deficiency is?? Can we make this a forum science project?
Yeah, it tells you about the presence of salivary amylase. Pancreatic amylase is the more major player in digestion, and given how extreme her body seems to be, I'd not worry about partial deficiencies here. I'd look for more of an all or nothing thing. Pancreatic amylase, I'd be much more interested in a partial deficiency.

So what's the starch of choice? I've got tapioca in the house. I'll see what I can get to work for a starting point.

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Old 11-04-2010, 05:24 PM
 
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Yeah, definitely. I'm still considering the enzymes first... they are really the ONLY thing we haven't tried. And I'm not sure how I would even tell if they're helping- I guess if I don't see carrots anymore in her poop, huh? I called the GI back this morning, and they don't have a specific type/brand of enzyme that they recommend- she just said papaya enzymes.
Well this might be a blessing in disguise. The GI we saw insisted that I use his enzymes and all they were were some enzyme from a pharmaceutical company. They had lots of crappy fillers so probably wouldn't be safe from an IgE allergy perspective.

Mom to DMI & Silly Apple
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Old 11-04-2010, 05:47 PM
 
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eta: And sorry for hijacking the entire chat thread today. And thanks for all your suggestions- I really do value them.
I'd add some suggestions if I had some (hard for me not to be the most knowledgeable smarty pants, I'll tell ya!)

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CS - Don't be sorry you goof! We are all right along side you, you know that!
I'm in awe of what you go through for your DD!

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JR, I am less inclined to post, maybe. But I'm here almost all the time.
- I need support and want to be supportive to others - just need to come out of my shell.... (But my DH may not agree - I KNOW he glazes over when I get on a roll/rant and I'm supposedly the extroverted one......)

Thanks to all for the support you give - even if I don't reply/join in frequently - I am reading, learning and appreciating it all!

Becky, mom to two - DD ('00) and DS ('08)
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Old 11-04-2010, 05:57 PM - Thread Starter
 
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I can't remember if it was tsfairy or oaksie who was expressing confusion and feeling overwhelmed with the vast amounts of biochem info etc that's posted on this board but...
I just wanted to reassure you that it's perfectly normal. We all felt the same way when we first jumped in as well. All too soon, you'll be pointing out things we never added together and contributing more than you ever thought possible. Also, many of us still just peek over the shoulders of the giants in the forum rather than standing on them.
And this starch test sounds incredibly interesting...

Wife of Michael , SAHM to Aristotle 09/99 Raphael 06/07 and Marius 05/09 Known only in dreams but never forgotten: Euphrates Decluttering 290/2010
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Old 11-04-2010, 05:59 PM
 
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I can't remember if it was tsfairy or oaksie who was expressing confusion and feeling overwhelmed with the vast amounts of biochem info etc that's posted on this board but...
I just wanted to reassure you that it's perfectly normal. We all felt the same way when we first jumped in as well.
Some of us still feel like that 2 years later...

I'm excited to try the saliva thing. Need to get some iodine. I have tapioca. What else? One site had sugar and some other stuff listed, one just had starch and iodine I think.

Have to get back to this floor. I've decided (this morning) that I'm just going to suck it up and finish it how it is. I really don't love how it looks, but I just can't deal with it anymore, and we really need to move on to the bedroom projects. So I'm off to do more staining....

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Old 11-04-2010, 06:12 PM
 
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So far, I can say that atomidine doesn't turn tapioca blue, and that saliva doesn't seem to penetrate rice flour all that well. And that ds is unusually tough to get down for a nap today.

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Old 11-04-2010, 06:14 PM
 
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Her last stool test (through the GI, earlier this year) showed no gut bacteria overgrowth whatsoever. We haven't done the permeability test, but I can be pretty sure that's an issue, right? I mean is there anyone on this board that would actually pass that test?

Which stool test will show pancreatic enzyme deficiency? The only thing enzyme-related I can see on the Great Plains stool test we did is elastase.
This is the test we're about to do for stool - http://www.genovadiagnostics.com/ind...task=view&id=1. You can look at the sample report. It tells you levels of one of the main pancreatic enzymes, and then secondary markers for poor protein digestion, fat absorption, and inflammation (lactoferrin). I'm using it to make sure we have DS on the right track still after pulling digestive enzymes, and to get another read on his gut flora.

If they scope, will they tell you what pancreatic enzymes are deficient? (Also it would tell you presence of enzymes in the cells, but not if they are getting released).

Gut bacteria test, no issues whatsoever, that would make me suspicious.

My kid is challenging in a totally different way than yours, but for us, testing has been critical. I'd never have figured things out for DS without it. There are other tests you could do to check a bunch of stuff for her around digestion, methylation, etc. But it seems like the overactive immunity piece might be worth looking at as well. Have any of your HCP gone down that pathway (not sure what the options are)? Dr. K talks about a panel you can run to look at Th1/Th2 stuff (which immune pathway is over-reacting) - perhaps that's worth looking into?

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Yeah, definitely. I'm still considering the enzymes first... they are really the ONLY thing we haven't tried. And I'm not sure how I would even tell if they're helping- I guess if I don't see carrots anymore in her poop, huh? I called the GI back this morning, and they don't have a specific type/brand of enzyme that they recommend- she just said papaya enzymes.
Because you can't do the pancreatic enzymes, I'd try a very small amount of digest gold, and see if that causes a reaction. When you tried them, how much did you take?

Pick battles big enough to matter, small enough to win. ~Jonathan Kozel
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Old 11-04-2010, 06:28 PM
 
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I've got a winner with lugol's solution and tapioca dissolved in water. Totally textbook. My saliva has amylase Not sure what's up with the atomidine

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Old 11-04-2010, 06:51 PM
 
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My kid is challenging in a totally different way than yours, but for us, testing has been critical. I'd never have figured things out for DS without it. There are other tests you could do to check a bunch of stuff for her around digestion, methylation, etc. But it seems like the overactive immunity piece might be worth looking at as well. Have any of your HCP gone down that pathway (not sure what the options are)? Dr. K talks about a panel you can run to look at Th1/Th2 stuff (which immune pathway is over-reacting) - perhaps that's worth looking into?

CS, I was actually thinking mainly about you when I posted my success with the Dr K supps last month. Really their application in thyroid issues is just the tip of the iceberg. None of the ingredients target the thyroid directly. They are meant to balance an overactive immune system, and all those IGE positives are pretty definite confirmation that your dd has that issue. The test that mamafish mentioned runs about $1000 (!) out of pocket. My hcp said he could order it for around $600, so I am sure others can. The cheaper way is to test out each supp for 3 days each. I am happy to send you a bit of each if you are interested.

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Old 11-04-2010, 06:51 PM - Thread Starter
 
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Some of us still feel like that 2 years later...
Post pics of the floor.
"some of us" have had higher than normal nutritional requirements and lower than normal resources with which to manage them.

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Old 11-04-2010, 07:24 PM
 
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CS, I came on because I saw some talk of you considering scoping J on FB and wanted to give you whatever perspective I can. I'm so sorry if this has all been covered already.
In terms of EOS: yes, scoping is the only way to diagnose the disorder. In order to attain proper scope results, J would need to be fed foods that she def reacts to, inc wheat, so that the test is not for nothing. There are complicated arguments for and against officially diagnosing this disease because now you are making it known to your insurance provider who can, on one hand, cover your needs in mainstream medical settings better, but on the other hand, increase her difficulties getting insured in the future. Once diagnosed, the only effective treatment is avoiding the triggers. I know you know how hard that is.
Ella has had 3 foods only for more than a year and a half now and we are still failing EVERY.SINGLE.FOOD.TRIAL. I have elected not to scope ella because I believe she would react to the sedatives used during the scope and we would cause so much injury to her intestines in order to prep for the procedure. I agree with you that ANY synthetic substance intro'd to their little bodies holds great risk with questionable benefit. I know that this is the disease that she has, because of the obvious pattern of symptoms in my family and because of my own extreme eosinophilia. I concede to getting her CBC with Diff checked to make sure she doesn't follow me down that road, but that is about as close as I bring her to doctors these days.
Hey mamas. I'm so sorry to pop back on here after leaving you for so long. I feel like I can't spend a lot of time here again, namely because I would want to be a more positive contribution here than I really can be. I do, however, miss you all and care so much about your struggles and achievements!
hugs to you beautiful, brilliant, strong, tenacious mamas!
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Old 11-04-2010, 07:27 PM
 
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Oh Ellasmama, I think of you quite frequently and had been hoping that you'd moved on from food problems to a better place. I am so sorry that you and Ella are stuck with only 3 foods and don't seem to be moving forward. Please know my thoughts are with you and that you are a very strong woman.

- ASusan

DS, 10/07. Allergies: peanut, egg, wheat. We've added dairy back in. And taken it back out again. It causes sandpaper skin with itchy patches and thrashing during sleep. Due w/ #2 late April, 2012.

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Old 11-04-2010, 07:35 PM
 
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Originally Posted by mamafish9 View Post
This is the test we're about to do for stool - http://www.genovadiagnostics.com/ind...task=view&id=1. You can look at the sample report. It tells you levels of one of the main pancreatic enzymes, and then secondary markers for poor protein digestion, fat absorption, and inflammation (lactoferrin). I'm using it to make sure we have DS on the right track still after pulling digestive enzymes, and to get another read on his gut flora.
That looks pretty much like the comprehensive stool test that we did. Her lactoferrin was sky high, but they couldn't tell me if breastfeeding would affect that number (since lactoferrin is a component of breastmilk.) But regardless, it was high enough that there is definitely inflammation (or was at that time, since remember she was having major symptoms then that she's not having now.) She didn't have any muscle fibers or carbohydrates in the stool, so no markers for malabsorption there. Her fat stain was good, meaning she has normal fat absorption. Her elastase was plenty over the good range. She had a slight overgrowth of 1 bacteria (which didn't show up on the next stool test through the GI), and no lacto growth. That was the only issue I saw with gut bacteria.

If they scope, will they tell you what pancreatic enzymes are deficient? Yes, that's what he made it sound like. (Also it would tell you presence of enzymes in the cells, but not if they are getting released).

Gut bacteria test, no issues whatsoever, that would make me suspicious.

My kid is challenging in a totally different way than yours, but for us, testing has been critical. I'd never have figured things out for DS without it. There are other tests you could do to check a bunch of stuff for her around digestion, methylation, etc. But it seems like the overactive immunity piece might be worth looking at as well. Have any of your HCP gone down that pathway (not sure what the options are)? Dr. K talks about a panel you can run to look at Th1/Th2 stuff (which immune pathway is over-reacting) - perhaps that's worth looking into?
I'm sure it would be.... but there is absolutely NO extra cash right now for tests that insurance won't cover.


Because you can't do the pancreatic enzymes, I'd try a very small amount of digest gold, and see if that causes a reaction. When you tried them, how much did you take? I started with one capsule and worked up to 3 at a time. The first brand took a week or so before I started reacting, the 2nd brand took a couple days, and the 3rd brand was 10 minutes.
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Originally Posted by whoMe View Post
I've got a winner with lugol's solution and tapioca dissolved in water. Totally textbook. My saliva has amylase Not sure what's up with the atomidine
Bummer. I actually have some atomidine I think. Guess I'll have to get some lugols. I just ask for that at a compounding pharmacy, right?

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Originally Posted by farmerjess View Post
CS, I was actually thinking mainly about you when I posted my success with the Dr K supps last month. Really their application in thyroid issues is just the tip of the iceberg. None of the ingredients target the thyroid directly. They are meant to balance an overactive immune system, and all those IGE positives are pretty definite confirmation that your dd has that issue. The test that mamafish mentioned runs about $1000 (!) out of pocket. My hcp said he could order it for around $600, so I am sure others can. The cheaper way is to test out each supp for 3 days each. I am happy to send you a bit of each if you are interested.
Thanks for thinking of me. I'm not sure I'm up for trying new supps right now, and there's no way we can afford that testing.

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Post pics of the floor.
HA. If it ever actually gets done, I will put a pic on FB, and definitely a bunch on my (personal) blog. I finished the 2nd coat, but I have to go over some areas in the kitchen that are really uneven and sand/stain/sand/stain some more. Then 1 coat of finish.

Mom to DD1 (10/07) and DD2 (3/11)
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Old 11-04-2010, 07:36 PM
 
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ellasmama!

So (anyone), what exactly is EOS/eosinophilia?

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Old 11-04-2010, 07:40 PM
 
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Originally Posted by ellasmama2007 View Post
CS, I came on because I saw some talk of you considering scoping J on FB and wanted to give you whatever perspective I can. I'm so sorry if this has all been covered already.
In terms of EOS: yes, scoping is the only way to diagnose the disorder. In order to attain proper scope results, J would need to be fed foods that she def reacts to, inc wheat, so that the test is not for nothing. There are complicated arguments for and against officially diagnosing this disease because now you are making it known to your insurance provider who can, on one hand, cover your needs in mainstream medical settings better, but on the other hand, increase her difficulties getting insured in the future. Once diagnosed, the only effective treatment is avoiding the triggers. I know you know how hard that is.
Ella has had 3 foods only for more than a year and a half now and we are still failing EVERY.SINGLE.FOOD.TRIAL. I have elected not to scope ella because I believe she would react to the sedatives used during the scope and we would cause so much injury to her intestines in order to prep for the procedure. I agree with you that ANY synthetic substance intro'd to their little bodies holds great risk with questionable benefit. I know that this is the disease that she has, because of the obvious pattern of symptoms in my family and because of my own extreme eosinophilia. I concede to getting her CBC with Diff checked to make sure she doesn't follow me down that road, but that is about as close as I bring her to doctors these days.
So nice to see you.

And yikes- the GI didn't say anything about that. I'm going to call right now and see what he says. Because it's definitely not worth it for me to feed her IgE allergens before the test. Arg.

Shannon- there are a few different diagnosis that fall under eos disorders. Here are a couple explained: http://www.apfed.org/egid.htm

Mom to DD1 (10/07) and DD2 (3/11)
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