food allergy question

[valarie k]

Here's my most recent weird question. I asked on the big board, but never got a response. If a child  with CVID(def IGG, IGA,and IGM) recieves monthly IVIG, could that child ever be accurately tested to see if she has IGG mediated food allergies? I ask, bc my 10 yr old daughter has MANY symptoms that sound like they could be related to an eonsophilic problem, which is most often caused by IGG mediated food allergies. We know she has IGE mediated allergies to milk and egg, and thats avoided. I'd like to ask ID tomorrow......but I think it sounds so bizarre, even to me. My daughter has problems like......failure to gain/maintain weight, stomach aches that become severe(since toddlerhood), legs, ankles, hand, and wrist pains that are severe and last for days(again, since toddlerhood). She'd been scoped, a couple yrs ago, looking for EE and celiac, but the biopsy was fine. Now, though, she's also having problems along with the stomach aches, like, reflux suddenly worsening so that she cannot eat, being unable to finish swallowing food(says it "jumps" back out of her throat). I know some of these things might just go along with CVID, but could it also be something else? thanks, valarie

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[Linda Ladden]

Hi Valerie:

 

My son had some of these problems with items containing casein and gluten.  It was found that he had IGg mediated allergies to these, but not IGe ones, so he had stomach pain, bloat, diarrhea, failure thrive, etc and we avoid those items.

 

However, the GERD systems you speak of, Sean had and we found out that is was related to his low muscle tone, hypotonia.  High dose prevacid did not prevent it and he began to vomit several times a day, particularly if he stood up right after he ate.  Sean needed to have a fundoplication in May 2007, which has improved this significantly, although he still needs daily prevacid

 

 

 

Linda  in CT, mom to Sean 6 years old

 

 

 

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From: primary...@googlegroups.com [mailto:primary...@googlegroups.com] On Behalf Of valarie k
Sent: Tuesday, April 15, 2008 10:27 AM
To: primary...@googlegroups.com
Subject: PID food allergy question

[Terri Cerda]

Hi Valerie,

 

Your daughters sounds like Maggie......Maggie's PIDD is mostly gastro related.  I was going to tell you to have her checked for Celiac's, but it looks as though she has already had the most definitive test for Celiac's.  The reflux is something that has to be treated well in children with PIDD, especially those with Lung issues.  We recently had both of the girls tested for reflux (radiological barium study) after learning that reflux can cause bronchiectesis and lung damage to worsen.  Fortunately, neither of the girls had reflux.....but they had no symptoms of it anyway and we did not expect to see anything.  Gut stuff can be the primary problem with PIDD in many children....just like lung problems for some.  It is so hard to accept that PIDD can be so different for each child....that is why it is not diagnosed early on and many children have permanent damage before they are diagnosed......there is no typical or predictable set of symptoms or disfunction that are specific to PIDD.

 

On another note, Please cross your fingers...pray whatever else.  I am leaving the children for the first time EVER to go to Washington DC tomorrow for three days for the IDF Capitol Hill Day to meet with legislators to work on the Medicare IVIG access bills.  Does anyone know anyone else going?

 

Terri

----- Original Message -----

From: valarie k

To: primary...@googlegroups.com

Sent: Tuesday, April 15, 2008 7:27 AM

Subject: PID food allergy question

[valarie k]

So is he on IVIG? you can find out about this, even while a child is on IVIG? I was wondering, bc I thought the IG product would mess up the childs own IG, and the results wouldnt be accurate. I belong to a board regarding sensory issues,(which she does have), and many of those kids are autistic, and have the IGG issues with foods. Savannah's already off casein(well, we're trialing it right now, after being off for three yrs, trying to get her to gain some weight). uuuggghhhh.....both my boys--they are 5 and 8 now......had a nissan done three yrs ago. I would REALLY hate to think of going through that all again. Ive got lots of questions for the dr tomorrow. thanks, valarie --- On Tue, 4/15/08, Linda Ladden <LLa...@CONNEXINTL.com> wrote:

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[valarie k]

thanks for the ideas........we've doubled her prilosec, to 40 mgs a day. sigh:( I wish things could just be easy for the poor kid, just once. Good luck on your trip!!:) valarie --- On Tue, 4/15/08, Terri Cerda <tce...@cox.net> wrote:

From: Terri Cerda <tce...@cox.net> Subject: PID Re: food allergy question To: primary...@googlegroups.com

between 0000-00-00 and 9999-99-99  

[Linda Ladden]

No, we had the tests done before he started on IVIG, several times as a screening tool when everyone said that immune defects are rare, so it must be allergies. HE started IVIG when he was 3 1/2 years old.  He is 6 1/2 years now.  All tests since IVIG for any allergies come up negative, as expected

 

 

 

Linda Ladden

Connex International

Senior Account Executive

Medical Marketing, Education & Events

203.778.7189

203.730.9060 fax

lla...@connexintl.com

www.connexintl.com

 

 

 

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From: primary...@googlegroups.com [mailto:primary...@googlegroups.com] On Behalf Of valarie k

Sent: Tuesday, April 15, 2008 2:33 PM
To: primary...@googlegroups.com

[Linda Ladden]

FYI-- I was told that nissans can loosen and need to be re-done--I am dreading that possibility myself.

 

 

 

 

 

Linda  mom to Sean 6 years old

 

 

 

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From: primary...@googlegroups.com [mailto:primary...@googlegroups.com] On Behalf Of valarie k

Sent: Tuesday, April 15, 2008 2:33 PM
To: primary...@googlegroups.com

[Terri Cerda]

Sorry to post this as a reply....not meant as a reply, but a new question.

 

Molly is have terrible allergy problems to the point that I think she may have IgE syndrome (even though she does not have the common physical markers).  She tested allergic to pretty much everything environmental a year ago......no food allergies.  Some are very severe allergies and her IgE is over 10.  They cannot give her allergy shots because they cannot possibly cover all her allergies.  Since she was young, she has had dermo grapho what ya ma call it where you can lightly scratch a work on her and read it for hours after.  Now, her skin reacts to everything.....if she itches herself even a bit, she erupts into welts......it is terrible.  Does anyone know anything about this?  She has SAD, chronic neutropenia, and her nasty lung damage.

 

Terri

----- Original Message -----

From: valarie k

To: primary...@googlegroups.com

[valarie k]

I would not do allergy shots, if her IGE is high. I did them myself for a couple yrs, they didnt help, and in fact, every time I would get hives all over the arm the shot was in. After I started seeing a pulmo, he was very upset anyone had done this on me, bc my IGE is over 1200, and he said I could have had a REALLY bad reaction, like, anaphylaxis, to any of those shots. I am allergic to every single thing I was tested for, environmentally, except pine trees:).....well, avoidance isnt really an option, when your'e allergic to EVERYTHING. I did try Xolair......is she a candidate for that? it is not an allergy shot, it binds to the body's IGE and sort of shuts it down. I think it worked......but, we think it was the cause of that crazy seizure thing I had going on a yr ago(several other patients at my drs office had the same thing happen to them). Isnt there something called Jobs syndrome that has to do with this.......I think its hyper IGM? But I could be wrong. So much has been going on, Im surprised I havent locked myself out of my house this week!!:) valarie

--- On Tue, 4/15/08, Terri Cerda <tce...@cox.net> wrote:

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[Terri Cerda]

Actually, you are close....Job's is Hyper IgE Syndrome.  I just don't know though.  I went back through her blood work and and until more recently, her IgE has been ok.  She has always had very high eosinophils.  The last two blood tests she had showed VERY elevated T Cells (CD3, CD4) and very low CD56 and CD 16 with borderline low CD19 in addition to her neutropenia and other stuff.  We know we have some very wierd cytokine thing which is part of what Job;s is.....so perhaps she has many components of Job's that are cytokine related.....but not all of the issues that would lead to a diagnosis of Job's.  I know that her allergy issues are part of the bigger picture of her immune disease.  What a canundrum (SP?).......all this "crap: for lack of a better word.....now two positive skin tests for CF for both girls.....the allergy and lung issues.....and now Maggie is growing HUGE fingertips, ankles and her neck hurts all the time......JRH?  Who knows.  Just crazy stuff that we all understand.

[valarie k]

she has very high eosinophils? has she ever been scoped, and checked for something like an eosinophilic disorder? very oftne these things react to IGG allergens. It can cause so many problems. I read symptoms of this problem.....have a friend whose son has it........and it sounds SO much like Savannah. Its just hard for me to understand if she would be able to have an IGG mediated food allergy while on IVIG. Anyway.....its the same symptoms you describe. eosinophilic disorders can cause joint pain----which would be an answer, bc savannahs been worked up for all the "usual" joint pain stuff, which always comes back fine. But what kid wakes up screaming with wrist pains? ankle pains? pain in her hands? Anyway.......if you havent looked at an eos disorder, maybe look that up. I havent any idea, obviously, but it sure sounds similar. It DOES get tiring dealing with all of this, I know. Im so tired of my kids being sick. I wish for just one week, maybe, they could all be healthy at one time, and we could enjoy one thing!! Donovans' getting his MAW trip, hopefully in a month or two, and we think we are going to Kissimee, to a pirate treasure hunt at Gaylord Palms resort(google that.....it looks amazing!), and to Universal. We SO need this break. Im hoping everyone can be healthy, or decently so by then. Last yr, we went for Savannah, and it was fun, but my oldest was starting her problems then---still not dx'd---and having severe tummy pains, not feeling well---savannah had her joint pains, and spent half the time in a stroller. and then my Dh broke a tooth!! fun fun.:);) of course any break at this point is one to look forward too.

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[Mark Leventhal]

I've never heard of IgG allergies. Aren't all allergies a product of over active IgE?

----- Original Message -----

From: valarie k

To: primary...@googlegroups.com

Sent: Tuesday, April 15, 2008 10:27 AM

Subject: PID food allergy question

[Terri Cerda]

Actually, it is Molly that has the very elevated eosinophils.  She does not have the gut or joint issues (that is Maggie).  Molly has the lung problems.  Gastric Eosinophilia is a whole different ball of wax and not one that Molly is symptomatic of.  Maggie, who has the gut issues, has an EXTREMELY elevated ANA (1:1285) where it has been for more than two years.  She also has very high anti gastric parietal antibodies and very elavated anti thyroglobulin antibodies....but she has NO good antibodies.  Maggie has normal eosinophils, but has a great deal of joint pain.  Her fingertips are clubbed, but clubbed from bony overgrowth.  Now, her ankes hurt and she cannot run and she is unable to write due to finger, hand and wrist pain.  Should be very interesting as she gets older and the need to write is more important.  She is a really tough kid and doesn't complain until things get bad.....even then, she just keeps on going and I am thankful for that, even though it hurts to see her in pain and still playing.

 

We are staying SO busy that we have little time to think about our problems....which is so good for us.....even though it can be insane!

 

I am glad to hear the Donavan has an exciting trip coming! I will pray that you all are well for it.  Sounds very exciting.  MAW has been such a blessing for our family....they keep us very busy!

[Mark]

Isn't IgE the allergy protein? If a immune deficient patient doesn't
produce IgE can they have allergies?

This is from Medicinenet.com

"The immune system is the body's organized defense mechanism against
foreign invaders, particularly infections. Its job is to recognize and
react to these foreign substances, which are called antigens. Antigens
are substances that are capable of causing the production of
antibodies. Antigens may or may not lead to an allergic reaction.
Allergens are certain antigens that cause an allergic reaction and the
production of IgE.
The aim of the immune system is to mobilize its forces at the site of
invasion and destroy the enemy. One of the ways it does this is to
create protective proteins called antibodies that are specifically
targeted against particular foreign substances. These antibodies, or
immunoglobulins (IgG, IgM, IgA, IgD), are protective and help destroy
a foreign particle by attaching to its surface, thereby making it
easier for other immune cells to destroy it. The allergic person
however, develops a specific type of antibody called immunoglobulin E,
or IgE, in response to certain normally harmless foreign substances,
such as cat dander. To summarize, immunoglobulins are a group of
protein molecules that act as antibodies. There are five different
types; IgA, IgM, IgG, IgD, and IgE. IgE is the allergy antibody.

(In 1967, the husband and wife team of Kimishige and Teriko Ishizaka
detected a previously unrecognized type of immunoglobulin in allergic
people. They called it gamma E globulin or IgE.)

IgE is an antibody that all of us have in small amounts. Allergic
persons, however, produce IgE in large quantities. Normally, this
antibody is important in protecting us from parasites, but not from
cat dander or other allergens. During the sensitization period, cat
dander IgE is being overproduced and coats certain potentially
explosive cells that contain chemicals. These cells are capable of
causing an allergic reaction on subsequent exposures to the dander.
This is because the reaction of the cat dander with the dander IgE
irritates the cells and leads to the release of various chemicals,
including histamine. These chemicals, in turn, cause inflammation and
the typical allergic symptoms. This is how the immune system becomes
exaggerated and primed to cause an allergic reaction when stimulated
by an allergen."

Mark

[tce...@cox.net]

That is a fine question Mark. I wonder though since some patients who have allergies have elevated eosinophils in the absense of elevated IgE. Molly had elevated eosophils well before she had elevated IgE. It was not until recently that her IgE began to rise. But she also seems to be getting worse and worse with allergies and there is no seasonal cycle to it.....no rhyme or reason. I wonder often if chronic immunoglobin replacement can contribute to and abnormal response of the part of the immune system that reacts to allergen antigens.....we are finding that it is stimulating things we would rather not stimulate in addition to overcoming all the other problems......sort of a darned if you do and darned if you don't scenario.

Terri

[valarie k]

There is also such a thing as IGG mediated allergy. Its usually a more delayed response, like, 3 days after you eat something, you have a reaction, like congestion, or joint pain. I just talked to our ID dr about this today. IGE is the allergy you are most likely to have, and thats a more immediate respone, like hives or anaphylaxis. valarie --- On Wed, 4/16/08, Mark <l...@consultant.com> wrote:

From: Mark <l...@consultant.com> Subject: PID Re: food allergy question

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[Linda Ladden]

Yes, that is true. Some allergists sometimes call an IGg mediated problem a sensitivity, some call it an allergy.

 

Oftentimes, when a food is involved, then intestinal discomfort, bloating, pain and diarrhea are often whast occurs, as opposed to what occurs with an IGe mediated allergy.

 

Linda- in CT mom to Sean 6 years old

 

 

 

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