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Food Challanges

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Dutchbabiesx2
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Posted on Sunday, April 14, 2013 - 12:57 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Was not sure where to post this.

My son is 10 and last year we changed his diet to avoid what we (and all of us here) believe is FGA.
His results were absolutely amazing, bringing a sickly child from anger, depression and possibly a very difficult life- to one of living his potentials and even being able to exceed them!!!

But he still gets some food exposures, and since we can watch the cascade happen we have been able to communicate with his medical professionals.

For him, it looks like an inflammatory response.

a few weeks ago we went down to Denver and met with the doctors at National Jewish Medical Center (they work with CU-Denver Medical School and Denver Children's hospital). We ended up with a visit from the head of pediatrics there.

We will start in June, doing 4 sessions of testing including placebos. They will do baseline evaluations, blood testing then give him the test food (I'm still thinking this through). We will follow up 24 hours later with blood work and evaluations, then again on day 5.

For our goals as his parents, we want to see what is physiologically happening with his body when he eats these foods, and if there is anything to minimize his reactions, or turn them off.
I also want this to be on the radar of medical professionals, but I don't hold much hope for changing the world.

From what I understand the team that will evaluate the results come from; Allergy, Asthma, Immunology, Rheumatology and mental health. These MD's are also professors and researchers.

My son is not looking forward to feeling crappy, nor the blood work, but at the young age of 10 he hopes they learn something to help him and to help someone else. As he says, "lets start a revolution".

And, he also had a fever syndrome a few years back, wanted to see if anyone else has had a fever syndrome ever.

I will be sure to post how it goes and results and everything else!! Please add any advice too!
~hopeful
AdaLovelace
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Posted on Sunday, April 14, 2013 - 4:02 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I hope it all goes well. Is he on a gluten free or anti-inflammatory diet currently?
Roy Piwovar
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Posted on Sunday, April 14, 2013 - 8:14 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

It's already known that excess glutamate can cause fever. Knowing what I went through as a kid with ingestion of forms of MSG I'd be afraid to subject a kid to this. I would hate to see him have a relapse. If you go through with it anyway I'd bring along some ibuprofen as at least a partial remedy, but I wouldn't allow them to damage my kid in the first place and if he is too far gone from what they have given him he may be in no condition to swallow it or they may not let him because it would interfere with their test.

https://www.jstage.jst.go.jp/article/jphs/104/2/104_2_130/_pdf
Dutchbabiesx2
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Posted on Monday, April 15, 2013 - 8:55 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

He does not get the fevers now, he may get a low grade one from the inflammatory response.
He is not on a GF diet not Anti-inflammatory.

Our biggest concern is how is his body developing with each of these exposures (as much as we try, he still gets them- just friday he had one!). And as he gets older and will venture out, the mental health changes are so severe it is very possible he ends up in a facility at some time if we can't find a way to prevent that part of the exposure cascade.
It is part of trying to keep him safe.

I am willing to test him to help him. Even the Dr.'s there know that they are to 1st do no harm, it was part of our mutual decision to do the testings. We also have more time to fine tune how it looks, and also to call it off at any point. It is very possible that he stays a week at the hospital. The mental health team will evaluate the case too, and also the day of the baseline testing.

We feel that it is completely necessary for our son to try to find answers to his situation. I just read the appointment note and it says, "complicated medical case" - we knew that already, so they have not seen this before at this hospital, with these Doctors.

Our options were to go to Denver, Stanford or Mayo. I'm happy to have gotten the response we have gotten from our somewhat local facility (it is still over an hours drive for us).
Roy Piwovar
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Posted on Monday, April 15, 2013 - 2:44 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I wish you good luck, Dutchbabiesx2. I would still have them keep ibuprofen at the ready, plus I would keep a food diary to help uncover any triggers that may have a delayed reaction.
Dutchbabiesx2
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Posted on Monday, April 15, 2013 - 3:50 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

thanks Roy,

I will start a food diary the month prior. We have not yet agreed on any medications for during. It is possible that they keep him for a few days and can decide on medications that could help.

Eventually we hope to find something with few side effects to help minimize his reactions.

this latest one I have loaded him with ibuprofen, Guafenesin and antihistamine, which seems to have warded off the typical mental health changes we see (we have Lorazepam on hand if we needed it).

But the point is to see how his body reacts to the food, so altering the reaction will not validate the testing. I know it sounds harsh to you who knows how bad the suffering is, but in the long run we aim to do much more good.

It is great to know there is so much support for people who you don't even know in person, we hope you all can benefit too from any information we glean from this journey, just as this forum has done for us!
Deb A.
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Posted on Friday, April 19, 2013 - 2:22 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Please keep us informed!
Roy Piwovar
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Posted on Friday, April 19, 2013 - 4:24 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Please make sure them keep injectable forms of any antidotes handy in case his reaction interferes with him being able to swallow medicines.
Dutchbabiesx2
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Posted on Thursday, May 02, 2013 - 5:57 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Update;
we are scheduled to start the process in 2 weeks! first we start with the mental health evaluation, and also some coping skills since this will be an emotional strain on the little guy.

He is up for it, when his diet is clean- he understands it will mean putting poison in his system and showing the Dr.'s how he reacts.

then the following week we start with the food challenge (as they call it).
I will give updates and tell you want we know!

Roy- he does not have an IgE or IgG type reaction and never does he have that type of reaction. BUT they are an allergy and respiratory hospital, so they have everything we would need if he had a worse than expected reaction.
Roy Piwovar
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Posted on Friday, May 03, 2013 - 6:44 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Dutchbabiesx2,

It was not an IgE or IgG type reaction that I was worried about. I have never had that type of reaction to MSG, either. I have had that type of reaction to artificial color, which was remedied in the hospital by injecting me with anti-allergy medication that I couldn't take orally because I was unable to control movement (but still able to hear). If an allergy or respiratory hospital wastes time by first trying to treat the type of reaction I get to MSG with medications they are used to using for the allergic type reactions they normally treat, he could get very bad and they might be reluctant to agree to use glutamate blockers. If he became totally unconscious like I have gotten from MSG (not even able to hear), I hope they would have an injectable form of glutamate blocker ready.
Dutchbabiesx2
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Posted on Sunday, May 05, 2013 - 8:36 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Roy, it is very controlled, I am actually making the food myself and expect his typical reaction, nothing life threatening in the short term. I hear ya about feeling sympathetic though. I've had severe reactions to contrast dye that I ended up in ICE- so I know how that feels to want to protect others, and I think you.
I won't be fun to watch him knowingly be subjected to the foods and the cascade that follows, but it is the bet way to try to help him.
We will be seen several times in the clinic and I have a very good relationship with our family doctor and our urgent care.
But I think I need some medical write up from the Dr's so if I have to take him to the ER for any reason, I have this information (even with my medical background, it sounds more likely the truth coming from medical peers, not just the mom!!).
I think I will also have our family Dr. put a note in his chart for some reason she is not available to see him if need be.
Roy Piwovar
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Posted on Sunday, May 05, 2013 - 10:38 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Dutchbabiesx2,
Glad you are in control of the food and the portions. I hope it turns out to have been worth it.
Dutchbabiesx2
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Posted on Wednesday, May 15, 2013 - 5:58 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Testing is going to be put off, we are going down to meet with the doctors today to discuss it.

Several years ago my son had episodes of Periodic Fever Syndrome. PFAPAhttp://www.nomidalliance.org/pfapa.php

The symptoms he has after eating FGA is similar to the symptoms he has of PFAPA, leading me to believe there is a connection (at least for him). The difference is the fever. IF he has a fever after FGA it is low grade, meaning I never check it- he always tends to run warmer than normal.

will update after our appointment.
Roy Piwovar
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Posted on Wednesday, May 15, 2013 - 6:23 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

The anakinra treatment for PFAPA attacks:

http://www.nih.gov/news/health/apr2011/nhgri-11.htm
Dutchbabiesx2
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Posted on Wednesday, May 15, 2013 - 7:46 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

update for today;

Seems food testing is now a new urgency and priority. Great they are even more serious than before. I think the FGA connection would not be the highlight though. (for now)

Still don't know how this will play out. The new plan is for him to be followed daily for 10 days (2 weeks) at the Medical Center. Lots of testing. We will test Carrageenan first- I know for sure he will have an obvious reaction. They will be focusing on the physiology and not the root cause at first.

Big changes in their interest and the seriousness they express just from this fever that came up!

Thanks Roy, I do know about the Anakinra, but my son had not had any symptoms for 3 years! seems an emphasis on his swollen lymph nodes. Not sure they will even consider something like that for some time anywho.

To be continued . . .
LisaS
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Posted on Monday, May 20, 2013 - 8:28 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

We'll be thinking about you!
Dutchbabiesx2
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Posted on Tuesday, May 21, 2013 - 6:21 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Day 1;

Lots of unknowns. We had time to give a very through history of my son's health. From his asthma to his PFAPA to his reactions to foods. In the end the Dr. we are now teamed with said it is all very interesting.
She went on to discuss it with her dept head (our Dr. is a 2nd year fellow).
Came back with the day's game plan. Lots of concentration on his asthma, then skin allergy testing for typical environmental triggers, he does have some season IgE allergies too.
Then more pulmonary testing and then baseline blood work.
The last things we did included him eating whipped creme. I brought both one containing carrageenan (we know he has reacted to that) and one without. The department head choose which one.

I suspected they would do the placebo first to get his asthma better controlled since it is severely affected by FGA.

Hard time sleeping because I wanted to know if we would wake up to 'game on' or just go about the week with driving to Denver.
He does have some of his symptoms- slight sore throat, some tiredness, his peak flow was down this morning- but we have never checked it first thing in the morning.

we are to check, temp, cervical lymph node size, peak flow and over all how he feels every hour for 2 weeks . .good clinical evidence, plus we are at the hospital every day for 2 weeks (sans weekends unless he is very ill).

I always ask in the back of my mind, why does he react? what is physiologically different between him and the neighbor kids, or other kids.
Dutchbabiesx2
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Posted on Tuesday, May 21, 2013 - 6:22 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

oh, and they did baseline blood testing as well
Debbey
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Posted on Thursday, May 23, 2013 - 9:47 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Dutchbabies I react to trace amounts of msg immediately....if the cream is ultrapasteurized
the heat process causes small amounts msg
I get sick
if it helps I will eat/TRY ANYTHING to tell you if I get a reaction if it helps your child

i have to read material data sheets on medicines-prescription and over the counter
also see if there is a different brand name or manufacturer for any medication-I have a really bad time with any medicine made in india
Debbey
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Posted on Thursday, May 23, 2013 - 10:10 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

hospitals-lysol spray gives me the same reation
have had no trouble with the wipes
Dutchbabiesx2
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Posted on Thursday, May 23, 2013 - 7:55 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

day 4 update;
today my son's pulmonary function started at 65% and then he did a treadmill test which dropped his function by 60%, took 2 nebs to bring him back up.

all this is from what I believe is the placebo.
Monday he will eat the other whipped creme, and we hope to have a reaction they can observe.
I am exhausted and there are a lot more details that I will post later.
Mariann
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Posted on Friday, May 24, 2013 - 8:30 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

So many of us are following you, and hoping for the best for your child. It must be very stressful for you. You have friends out here pulling for you. Like Debbey I have very sensitive reactions to free glutamic acid. I will help in any way that I can. Mariann
ali
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Posted on Friday, May 24, 2013 - 10:36 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Wow. This is a very interesting feed. Hand on heart i don't think i could go through with what you are doing Dutchbabiesx2, but i so get why you are doing it. I have three children, two of which react very adversely to even trace amounts of msg. They both suffer mentally as much as physically. I will be checking in to see how this goes and what you discover. Thank you to your son for being so brave as to put himself through this. He must be an amazing little fella. You must be so proud of him. Big hugs to you both x
Dutchbabiesx2
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Posted on Sunday, May 26, 2013 - 2:50 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

End of week 1 update;

We met Friday to just discuss the week and next week's plan.

They know he has an underlying inflammation problem and since he did not have a reaction this week it was a good opportunity to concentrate on getting his asthma under control.
My husband is concerned that they are just throwing meds at him without knowing the underline cause.
I am ok with how this is progressing for his asthma is so severely affected by an exposure. I hope he can stay a little more open in his lungs when he finally does have an exposure.

They use the term, "offending food" to describe a food that causes a reaction- we could adopt it here since we can be so offended by the food industry altering our food so much!

They have several new tests lined up for next week. Before we get to those we will do the 2nd half of the double blind study.

I just finished making whipped creme without and with Carrageenan. I feel like a lab. So odd to intentionally buy and make something that can cause harm to your child. I'm anxious about it all, just as I was last Monday night- not getting much sleep.

I'm very anxious . . . Since he did not react it is easy to assume he had the placebo. And then he will react tomorrow. But there is a part of me that worried that I was wrong about carrageenan . . .but he has reacted 3 times before. I don't want to be 'the crazy mom', luckily my husband is totally on board and has been to 2 meetings and a witness to our madness.

So, if he gets the 'offending' food tomorrow, he will show up Tuesday very ill and sickly.

Monday is a holiday here in the US. The head Dr. suggested he gets the food on Tuesday. I said then they would only observe him 3 days. On the 3rd day is when the mental health changes occur (typically) which would be a Friday night. She decided to come in on her day off so he gets the food Monday (tomorrow) so that more f the staff is available the rest of the week. She also put a tentative extra Saturday (end of next week) on the schedule if he were to need observation or treatments.

Which of course makes it easy to read into that as they will give him the offending food tomorrow, and she knows it.
She flipped a coin to decide what he got first, and only she knows what he is feed, none of the nursing staff or the 2nd year fellow we work closely with.

trying to breath when I feel myself thinking about it too much!

Ali, please let me know how your kids react. When they see his reaction, I want to be able to say there are many other people, including kids, who react. One kid does not make a study! You are in Ireland right?

We are doing this to try to minimize his reactions when he eats the offending foods- but I think of this situation as open source, I'm happy to share any and all information we glean.

Do those who react have a genetic mutation that others do not? Is there a protective component? If you react now and avoid have you now decreased your susceptibility to disease later? Or is there damage occurring with each exposure?

Lots of questions still to be answered. Lisa S suggested another book, and I have read and suggest Dr. Blaylock. I'm trying to approach this as clinical evidence first, theory 2nd. (as you know, if they don't have the published papers in front of them, it is theory).

There is the underlying Fever syndrome he has as well. Those all have a mutation in the inflammatory cascade- it is possible you all have a similar one, but no promises!

I will update Tuesday before we head out the door-

to be continued

and thank you all for the support, I'm glad you are supportive, I really feel I have an important medical audience and I'm using what I can to solve some mysteries and to help my son!
Dutchbabiesx2
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Posted on Tuesday, May 28, 2013 - 11:19 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Baffled !!
no reaction.

it is possible he had the mildest of reactions last week. He did have a sore throat and leg pain last week, his color was more pale than this week.

Today he is perky and happy and bouncing around, happy to do all the tests and play with the other kids.

yes, a routine head banging against the wall is in order.
Have not met with the Dr.s today, but will soon then head back home, back tomorrow for some more over night testing, but no reaction.

He had a fever over a week ago and one dose of prednisone then, not sure if that diminished the test.

Also, the brand we used with Carrageenan had just creme and carrageenan- so one would think that would cause a reaction like the 3 other times.

thanks for following my updates . .advice? condolences?
Yes I'm very happy to have a healthy child this week too though, going to go to the drive-in to break up the week.
Dutchbabiesx2
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Posted on Thursday, May 30, 2013 - 10:58 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Results......he was given carrageenan this last Monday. He did have a nap followed by paleness. But nothing definitive.

Today I had an emotional chat with the Dr.s. I knew this would be a marathon. Seems we just hit the starting line.

The Dr. Thinks he has reflux. We stayed over night with a probe in his esophagus last night. We get those results tomorrow. She is convinced all his symptoms are reflux related and I still...ok my son's symptoms need to prove otherwise.

But we have some positive plans moving forward. They want to see him immediately when he first has symptoms. They will repeat his baseline labs then and also a viral panel. This Dr. Also thinks he keeps getting viruses. He should show no viral loads .

They are also sending him to a cardiologist. Lots of cardiology findings during his testing.

Pieces of the puzzle.

My first thoughts are to feed him the last thing we believe he reacted to. Bring him to these Dr.s. then do a double blind with that food.

Suggestions?????
Dutchbabiesx2
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Posted on Tuesday, June 04, 2013 - 8:17 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Hey all,
We gave him the cheese we believe he reacted to last, gave it to him Sunday and some on Monday.
Last night- a bit crazy and his anxiety showed through,
Tonight- sore throat, right gland a little more solid than normal (he has had palpable cervical nodes for a couple of years, since his PFAPA).
He is home on a heart monitor and has an appointment at children's cardiology friday.

. . .
Dutchbabiesx2
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Posted on Thursday, June 13, 2013 - 7:58 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

latest update;
cardiology cleared him of a potentially scary problem, but no- thankfully!!

We have since started allowing bits of FGA into his diet and watching him.
So far he has eaten;
Parmesan Cheese
enriched wheat
Malted Barley (in bread)
and yesterday . . a Luna bar (added protein).

He had a sore throat last night, he has been more moody, but I seriously believe the inhaled steroids he is on prevent a full blown reaction.

This is good because we now can relax a little and not be so vigilant

Not good because the Dr.'s won't see him in full blown reaction and do further testing. I believe the asthma is a result of an underlying inflammation problem, but I am sure the Dr.'s will say as long as his asthma is controlled that is all they care about!

His glands are more swollen, harder and more tender, some moodiness and sore throat last night- still sleeping as I type this.

this is not one of the results I had considered.
Deb A.
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Posted on Saturday, June 15, 2013 - 8:14 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

A sore throat was something I struggled with for years until I learned MSG was the cause. Even now I will get one if I ingest too much free glutamate by mistake. Appreciate your updates.
Dutchbabiesx2
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Posted on Tuesday, June 18, 2013 - 9:03 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Ok, so I went to our local 'spice shop' and picked up;
Citric Acid (unknown if it is corn or of natural)
Maltodextrin
MSG

I gave my son some Citric Acid in apple sauce last night. I took a little taste and it was pungent!

Today- he is totally fine.
Tomorrow we will do the Maltodextrin.

I am baffled that he went from extreme reactions to nothing!! I believe the steroids have some positive systemic consequence.

One interesting thing that keeps playing in my head that someone had mentioned during the testing phase. He said it could be the downstream product of the FGA that actually causing the issue (ok,duh, but still part of the FGA), but big questions about what is that and how is it that he is suddenly 'fine'.

We are only doing these products for testing, and if he has no reactions from any of these tests, we will still eat more clean than we would have in the past.

guess if you are on this list you have not found a 'cure' so I wonder if anyone has ever seen this type of turn around, or if there was some dysregulation in his system that suddenly has been regulated.
Di
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Posted on Wednesday, June 19, 2013 - 4:11 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I read sometimes children with severe food allergies (a little different that sensitivities) are given:

•Antihistamines
•Steroids
•Epinephrine for anaphylaxis

It would make sense to me that steroids have an effect on his reactions. Happy for you and son.
Dutchbabiesx2
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Posted on Friday, June 21, 2013 - 7:48 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

more info, seems he also has high Eosiniophils, or Eosinophilia. This is part of inflammatory disorders . . um yeap.

Treatment for inflammatory disorders is . . .can you guess?
Steroids!

so it totally makes sense that the steroids he is on decreases either the # of Eosinophils that play into the inflammation or the process of inflammation that then keep the Eosinophils down- or just reduce his reactions.

So- anyone on this list might want to see if they can get a CBC during a reaction. Of course I'd not really promote steroids, but well . . .

We go back to the hospital next week for a follow up and this will be the topic of discussion, and how we get him off steroids or if this is how he has a more normal childhood.

puzzles . . .just puzzles.
evelyn
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Posted on Saturday, June 22, 2013 - 9:18 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Wow, sounds a lot like my issues Duthc. I took a "swallowed steroid" - was made for inhaler, but I mixed with honey and drank it, for the inflammation in my esophagus. Long term steroid use is not supposed to be good for anyone. He's probably on the same stuff I was taking. Can't say how it impacts food allergies, as I was on elecare while I was using it. I can say that I am pretty sure my escalating food allergies and the need to go on the elecare were caused by panotprozole - an acid reflux drug. Apparently side effect (thanks for letting me know gi doc! and thanks to allergy doc for sending me to gi doc!) All the -prozole drugs indicate escalating food allergies as a side effect. Has he had the blood test? Avoiding the foods that showed up on mine is what has kept me from having to take the -prozole drugs. I have been cheating lately and relapsing, so I went back on the elecare to help me avoid the reflux (and the foods I am allergic too). Good Luck!
Dutchbabiesx2
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Posted on Sunday, June 23, 2013 - 10:37 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

latest update, in case anyone is still following along!

My son is still on the inhaled steroids,
He has had actual MSG- gasp I know, I gave it to him. Mostly just some mucus increase and well- the mental health changes.

We go back Tuesday to talk to the Drs' and see what we can chat about.

Any questions you've come up with that maybe I should consider asking?
AdaLovelace
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Posted on Monday, June 24, 2013 - 1:28 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Dr. Russell Blaylock (the author of Excitotoxins, The Taste That Kills) explains how the use steroids can exasperate food allergies. They damage the membrane barrier in the gut causing leaky gut syndrome. This allows whole food particles to enter the bloodstream thus causing allergies to benign foods.

I also read in the book Eosinophils In Health and Disease that "eosinophils are capable of... releasing glutamate." Interesting. Does he have any specific ailment that could be causing the elevated level of eosinophils (e.g. eczema or some kind of infection)? If not, could some drug he is taking be triggering it? Could it be a result of all of the testing they are doing to him? It could just be that they are feeding him MSG and then finding high levels of eosinophils which are indicative of a food allergy. So their very testing could be the cause.
evelyn
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Posted on Monday, June 24, 2013 - 5:41 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Dutch - I'd talk about how testing him while on steriods may have impacted the results. But maybe you already have? Does he had mild/developing eosinophilic esophagitis (as opposed or in addition to reflux)? Is the doc aware that reflux drugs have the side effiet of increasing sensitivities and allergies? Is there a nurtritionist on his case? A GI? Might the three specialties (count the allegergist in) work together to consider his case/condition? Quick Brain Dump - hope there is something useful in it for you. Best of Luck!
Dutchbabiesx2
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Posted on Monday, June 24, 2013 - 7:53 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Thanks Ada and Evelyn,

his blood tests were after a very strange inflammation where his cervical glands swelled so large they bulged from his neck and a fever, he was given one dose of prednisone (but in other times he has had high Eosinophils while swollen glands). He was only on Albuterol and advil at the time.

They ruled him out for Reflux and has never been on reflux meds.

The steroids are inhaled, so not sure if the gut is as effected as when on oral (which he has been from time to time on many rounds of it, but not for a couple years).

My thought about testing while on steroids- exactly- it altered the results. I have a lot of questions for the Dr. tomorrow - Immunology is in that department as well.

Hope others can help me think of questions.
sara
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Posted on Monday, June 24, 2013 - 3:33 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

eye doc I had before we moved - was a med school prof prior - she said steroids get to the eyes no matter how administered as she diagnosed me with steroid induced cataracts
evelyn
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Posted on Monday, June 24, 2013 - 4:05 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Let us know how it goes! Like many of us, you may just have to figure out on your own what he can and cannot eat. If it's not a typical histimine reaction, docs have trouble accepting that food is the issue. I will look up the research on EE that I found - using swallowed steriods while on a food replacement diet had a 98% success rate for "curing" food allergies. Quite sure it didn't cure me, but gave my body the needed break to heal and now I just avoid all foods I reacted to on a blood test. Since it was not comprehensive, I'm not sure it's perfect - but it is decidely better!
Dutchbabiesx2
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Posted on Friday, June 28, 2013 - 10:25 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Well, after doing lot of my own research on-line,

I believe for my own son, his eosinoplia causes him to easily react to FGA (based on Eosinophilia being a highly inflammatory situation and Eosinophils producing Glutamate).

We've noticed he is doing very well with foods and it has been a nice break from keeping his foods very strict. We have already formed the habit of buying safe foods and will continue, but eating at friends houses or on trips- we can relax a little (don't worry no Chik-Fil-A or McDonalds in our future- or anything like it!).

I'm going to discuss with his Dr. to test his Eosinophil levels regularly and if we see them creeping up we can decide what to do- either a single dose of oral steroids (this helped his PFAPA years ago) or a round of inhaled steroids to knock the eosinophils down and retest.

his IgE's were also high, but not sure why and also his CRP (an inflammatory marker).

so- for our son, I believe we have found a good compromise, I want to keep him off the steroids as much as possible but the food reactions (and asthma exacerbation) is detrimental to good health as well.

So maybe some of you would consider exploring this as well- but I'm sure it is not a true cause of FGA issues for many of you.

I'm sure I will be back from time to time to update and see what else is new, this list has been a great resource and a wonderful place to share our story!!
I wish everyone success and will continue to promote a FGA-Free diet !!!! in the long run it is healthy for my whole family.
Roy Piwovar
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Posted on Friday, June 28, 2013 - 7:08 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

No Chick-Fil-A for me, either!

http://mmredeemer.org/wp-content/uploads/2011/08/Chick-fil-A-Ingredients.pdf
Pat
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Posted on Friday, June 28, 2013 - 8:00 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I had a Chick Fil A Chicken Sandwich once, many moons ago.....before I knew anything about msg. After all, I never got headaches, so never suspected msg was my issue. My entire face blew up asymmetrically. Every feature became distorted incl very swollen lips & eyes, with welts on my chest & extremities. Looked like I had lost a boxing fight.

Internist prescribed a 7 day MethylPREDNISolone (steroids) Dose Pack. By the 9th day, however, all the symptoms were blossoming again.
I had to take a second 7 day Med Pack. Quite a horrifying experience! No Chick-Fil-A for me, either, Roy!
Tom Fernstrom
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Posted on Sunday, June 30, 2013 - 5:41 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Roy,

Even the foods which don't state they have MSG list disodium inosinate, Disodium guanylate as ingredients.

Didn't I read somewhere that these are expensive additives and that food companies would not add them unless they wanted to have them ramp up the MSG created by the hydrolization of other protiens added and not have to list MSG as an ingredient?

Tom :-(
LisaS
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Posted on Sunday, June 30, 2013 - 7:37 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Yes, Tom, you did: http://www.truthinlabeling.org/hiddensources.html
Roy Piwovar
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Posted on Monday, July 01, 2013 - 2:29 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Tom, one of the very first things I noticed when trying to avoid MSG reactions as a kid was that I also had to avoid anything with disodium inosinate and disodium guanylate in them, and I also noticed that they always seemed to appear together.
Roy Piwovar
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Posted on Monday, July 01, 2013 - 2:35 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

http://en.wikipedia.org/wiki/Disodium_guanylate
Di
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Posted on Monday, July 01, 2013 - 7:53 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Thanks Roy, interesting.
evelyn
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Posted on Wednesday, July 03, 2013 - 4:52 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Thanks Tom & Roy - always something new to learn, even after all this time!
evelyn
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Posted on Wednesday, July 03, 2013 - 4:57 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Dutch - I could not find that research by searching again, but I know I sent it to my doc and I will try to find it to send to you. I did post about my experience here, it was Nov '11. I did a food replacement (elecare) and swallowed steroid regime for two months to stop the EE reaction. I think I mentioned, studies showed the treatment to be 98% effective, but rarely used on anyone but children, because adults would not stick to the diet! A child on the other hand, has a parent to control their diet, making it much more successful in kids! Only issue I had with elecare is that I have to take probiotics when using it (it's not perfect believe me, but I did it out of necessity), I found that I got yeast infections on my skin.
AdaLovelace
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Posted on Wednesday, July 03, 2013 - 1:41 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Here are the ingredients for EleCare:
Corn Syrup Solids (55%), High Oleic Safflower Oil (9%), Medium-Chain Triglycerides (8%), Soy Oil (7%), L-Glutamine (2%). Less than 2% of the Following: C. Cohnii Oil, M. Alpina Oil, L-Asparagine, L-Leucine, L-Lysine Acetate, DATEM, Calcium Phosphate, L-Valine, Potassium Phosphate, L-Isoleucine, L-Arginine, L-Phenylalanine, L-Tyrosine, L-Threonine, Potassium Citrate, Sodium Citrate, L-Proline, L-Serine, L-Alanine, Glycine, L-Histidine, L-Methionine, Ascorbic Acid, Magnesium Chloride, Calcium Carbonate, L-Cystine Dihydrochloride, L-Tryptophan, Salt, Choline Chloride, m-Inositol, Ferrous Sulfate, Taurine, Ascorbyl Palmitate, Zinc Sulfate, dl-Alpha-Tocopheryl Acetate, L-Carnitine, Niacinamide, Calcium Pantothenate, Thiamine Chloride Hydrochloride, Cupric Sulfate, Manganese Sulfate, Vitamin A Palmitate, Riboflavin, Pyridoxine Hydrochloride, Folic Acid, Beta-Carotene, Biotin, Phylloquinone, Chromium Chloride, Potassium Iodide, Sodium Selenate, Sodium Molybdate, Vitamin D3, and Cyanocobalamin.

The first ingredient is genetically modified corn syrup. The fifth ingredient is l-glutamine, which according to this forum, is converted into glutamate in the body.
evelyn
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Posted on Thursday, July 04, 2013 - 6:59 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Like I said - Not perfect! But for short-term food replacement, to allow the body to heal, it worked for me. As it turned out, the medication (pantoprozole) given to me for "acid reflux" (other unidentified food intolerances), which was supposedly contributing to my esophagitis, caused me to be allergic to food. The fewer foods I ate that bothered me, the more frequently I ate other foods until those food bothered me, until I was reacting to everything and had to do something to heal. Obviously, in hind sight, stopping the acid med would have been the thing to do, but I only stumbled across the fact that it was the likely cause of my problem at a later time. In my research (of esophagitis) I found that an amino acid diet with a regime of swallowed steroids had a 98% cure rate for food allergies and resulting esosinophilic esophagitis. It stopped my esophagus from swelling every time I tried to eat, which allowed my body to heal, etc. There may be better food replacement options (what's in that new product a young man developed because he was too lazy to cook or take the time to eat? Soylent?) - I didn't find any at the time. The other options were worse, as I recall. And choking everytime I tried to eat got a bit tedious, though the weight loss was a bonus... [Food replacement doesn't have to be elecare, it was just the lesser of many evils, at the time]
Roy Piwovar
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Posted on Friday, July 05, 2013 - 2:23 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Living on maltodextrin and whey protein isolate is not a good idea.

http://en.wikipedia.org/wiki/Soylent_%28food_substitute%29
evelyn
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Posted on Friday, July 05, 2013 - 4:55 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I would agree with that Roy! I wish there were better options for short term (and unfortunately for children with EE - sometimes long term)food replacement.
LisaS
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Posted on Friday, July 05, 2013 - 7:20 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Ooh, I didn't realize that corn syrup solids can be the same as maltodextrin, which we have awful reactions to sometimes (I suspect it's a result of processing).

http://www.grainprocessing.com/food/maltodextrins-corn-syrup-solids.html
evelyn
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Posted on Friday, July 05, 2013 - 4:43 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Interesting. Wonder that the Hydrolysis is the problem then? We know it is with proteins, because it creates FGA - does the same thing happen with starches, then as in the Maltodextrin/corn syrup solids? Wish wish wish there were a better option for food replacement!
AdaLovelace
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Posted on Friday, July 05, 2013 - 7:31 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Yes that would be a great Evelyn if people (and babies) had a safe option for food replacement. People can survive and even thrive on fresh vegetable and fruit juice. (Not the boxed and bottled juice you find at the store, but rather fresh pressed juice that you make yourself. See the movie Fat, Sick, and Nearly Dead--the creators are so cool they even put the whole thing on YouTube for free: https://www.youtube.com/watch?v=zD8e4Mg3NFU) It's so powerful it can cure many ailments and diseases (such as diabetes, cancer, and many more).
Dutchbabiesx2
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Posted on Saturday, July 06, 2013 - 2:25 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

well . . .it was too good to be true.

tonight (well this morning) after being a bit cross with our sons for being up way past their bedtime, my 10 yr old walked out the door.

at midnight

with only his PJ's on, no shoes

not in anger or a ball of fire, just 'going to get some space' he told us
after;
the 911 call that promted a full out search for him. They had sniffing dogs and night vision goggles about to be deployed when they found him.

So- we will go back on the diet. and if he eats things we know are on the 'naughty' list he will be VERY closely watched.
evelyn
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Posted on Saturday, July 06, 2013 - 5:08 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Oh :-( Sorry Dutch. Thank god he stayed safe.

Juicing is great for health and weight loss, but doesn't replace essential nutrients and amino acids such that you could use it to replace food indefinitely (not that you would want to! but some folks need to). When I juice (I get on a kick, then I get lazy - with the buying and the prep and all) the big thing I notice is energy! I never feel sleepy late in the workday if I had fresh juice in the morning.
Anonymous
 
Posted From: 58.96.64.198
Posted on Wednesday, July 31, 2013 - 9:39 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

With high IgE levels, esoinophilia and swollen cervical node/s your immunologist needs to be aware of Kimura's disease. It may save you 10 years of blood tests, imaging and general time wasting and stress. Not saying he has that because I don't know the levels his blood is running, but you need to keep it in mind. Or if you just want to ask your immunologist "What is Kimura's disease"" that'll keep him busy thinking about it for the next 50 years
Roy Piwovar
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Posted on Thursday, August 01, 2013 - 9:57 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

http://en.wikipedia.org/wiki/Kimura_disease
Anonymous
 
Posted From: 58.96.64.198
Posted on Friday, August 02, 2013 - 7:29 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

That's the one, although the wiki only concentrates on one atypical case. It really needs updating to more fully reflect the condition. Most of the time it baffles the doctors to the point that it is never diagnosed, as in these cases below. If you start looking, there are many undiagnosed cases all over the internet

http://www.ncbi.nlm.nih.gov/pubmed/3211808
AdaLovelace
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Posted on Saturday, April 11, 2015 - 1:19 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

It's funny. I remember when Dutchbabiesx2 wrote this original post about two years ago today. (I've actually been with this forum for four years now! Yay!)

Her post has stuck with me. I think about it from time to time. I think about how I have, in the past, gone to doctors with the intention of starting a "revolution" as she says. I've thought about all the times that I've wanted to show them new information or even just show them that I'm different - that I'm not going to follow the "standard of care." But in my life, this has almost never happened. The sheer terror of the hospital itself (I believe hospitals to be large concrete slabs of fear) is enough to make one immediately loose her sense of self.

I recently read two books by Robert S. Mendelsohn - Male Practice (How Doctors Manipulate Women) and Confessions of a Medical Heretic. He was an MD and a teacher himself for many decades. But the core of his writings is that 95% of doctors, hospitals, surgeries and procedures could vanish tomorrow and not only would everyone be okay, we'd actually thrive because of it. His books have given me the courage to follow my intuition - which is to stay away from doctors.
Di
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Posted on Sunday, May 17, 2015 - 3:39 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Ada, That's interesting. I started coming to this board regularly (although not so much for the past year) since 2007 and it helped give me my life back. I've learned so much and like you, there have been posts that have stuck with me. I always enjoyed reading yours and know you are a very intelligent, independent thinker with great contributions. There is a time and place for modern medicine but I try to avoid needing it, for sure. I'll have to look for those books.
AdaLovelace
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Posted on Sunday, May 17, 2015 - 12:51 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Di, thanks so much! That means a lot! And I agree about the time and the place. Antibiotics can be life saving. I just don't think that my husband needs them every time he gets a filling (no joke, they give him an rx every time he walks into that office, ugh, and of course we don't fill them).

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