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#1 of 39 Old 02-07-2005, 01:55 PM - Thread Starter
 
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We have taken him to the doc, and he said it's just a minor problem, but I'm concerned about it.
My almost 3-yr old ate a regular cupcake are preschool and he's allergic to milk eggs wheat food coloring peanuts and sugar.

I gave him bendaryll right away because i was waiting in the hallway to pick him up when they called me. Were lucky that he didn't have trouble breathing ect, but did have bloody stool and hives and scratching for four days. Does anyonw know of a resource that could explan the correcation? I haven't found much and the docs just said don't worry. I would like to better understand what is going on with him.

the benadryll caused him to "posture" and gave him a ton of tics while he was sleeping, the pediatrician said that was a side effect of benadryll. ( a couple months ago he fainted and "postured" for no apparent reason. he was evalauated for three days at children's hospital and everything was normal.)

he had hives for four days after eating the cupcake, the ped to give him claratin syrup instead.
The MD/ homeopath said to stick with the claratin syrup if it happens again. But, the label says it's only for 2 and up, so I wonder about harmfull ingredients

I have read a ton about allergies, but was unprepared for this event, any resources /experience woudl be greatly appreciated
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#2 of 39 Old 02-07-2005, 02:21 PM
 
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The blood in the stool is probably because of the presence of the allergenic proteins in his body. We've never dealt with it, but I know it's a common symptom and, any time there's a slip-up, it reappears until the protein has completely passed through. Your dr. is aware of it and aware of the cause, so I wouldn't panic.

His recommendation of claritin concerns me, though. I don't think claritin is a fast-acting antihistimine. Benadryl is the antihistimine most commonly used by parents whose children have severe allergies b/c it works so quickly. But, there are children who can't use it. We use atarax, which is supposed to work as quickly as benadryl. When we've had to use it, it has worked just as fast minus the tell-tale corn rash that ds2 gets from benadryl.

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#3 of 39 Old 02-07-2005, 03:25 PM
 
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What Missy said. Totally agree and find a new allergist.
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#4 of 39 Old 02-07-2005, 06:29 PM
 
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Quote:
Originally Posted by alwayslearning2
My almost 3-yr old ate a regular cupcake are preschool and he's allergic to milk eggs wheat food coloring peanuts and sugar.
Sorry, when my english is probably not the best, but maybe I can help you. This is getting more frequent nowadays then 10 years ago. But still a lot of doctors are clueless, because it's so rare. It's like 1:133 cases in the United States. I suffered for 7 years and ran from doctor to doctor until anybody found out. I'm in a support group now with sick kids and adults in there who had the same symptoms than your little one. I suffer from celiac disease. This is a digestive auto-immune disorder and the patient can't have wheat, rye, oat and barley. A lot of patient have dermatitis herpetiformis (dh) in addition, which are hives and scratching, too. I don't have dh, but i have celiac. I had bloody stools sometimes, too. This disease is called the "big chameleon", because it shows in so many different ways. But a lot of patients in our support group have exactly the same symptoms than your little one, including the fainting and being also allergic to milk and eggs. This is so, because when a celiac patient eats wheat, rye, oat or barley, the tiny hair (called villy) in the small intestines will be destroyed. Lactose (milk for example) is digested on tip of these little hair. But when the hair are destroyed, you can't digest milk anymore either. Another thing when the villy are destroyed, is, that your body isn't able to get nutritions and vitamins anymore, because, that's where the body gets them from. The villy in the small intestines. That means you can feed the poor kid all you want. He will have malnutrition, the body poorly starves. But the good prognosis is, once the patient cuts out wheat, rye, oat and barley, the little hair will grow back and he gets enough nutritions and vitamins again. The only thing is just, that it's not healable. That means, if he has it, he has to make this special diet lifelong. But with the diet he can lead a total healthy life.

When I heard about your story I thought about my own story immidiately. And we also have some patients you already almost fainted, because of malnutrition. Some patients even had seizures, i had nerve damage and couldn't open my eyelid anymore. But i'm totally recovered now, since start of the diet. If it's celiac no allergy tablet can help, because celiac is not an allergy, but an auto-immune disorder. Only the special diet helps. The thing is, that you cannot get this disease threwout your life. If you have it you WILL have it for sure from birth to death. With some people it just needs something later in life to "trigger" it. When i was a kid, NO doctor ever found out. They all said 'Oh don't worry. Your kid is in perfectly health.' Just like your doc. Then the pain started when i was about 21. With 28 they finally found out what it is. I sure ran to about 40 doctors in that time. They were all clueless. And don't let the doctor talk you out of it with comments like 'Oh, ALL celiacs are skinny' or 'All celiacs have diarrhea', that's totally crap. Meanwhile it's proven, that a lot of celiacs are obese as well or have constipation. And it's well known around us, that our docs tried to talk us out of it as well, for whatever reason. The strange thing is, a lot of docs try to talk you out of it. You have to be persistent, if you want to know, what's going on. You have to go to a specialist, best thing is a gi doc. Aren't you from the MD area? I think there even is a specialty clinic for that.

And if you want to know more about other kids (or adults) with that disease and if your son could really have it, go to our support group. There is another message board, just like here. It's

www.celiac.com

People are very friendly there. They helped me a great deal, when I learnt about it last year in July. I don't know what i would have done without them. Maybe your son has it, or maybe it's something else. But it all sounds all too familiar to me and if I were you I would give it a try. It's better to be safe than sorry, if you consider, what consequences that disease can have later in life, if you don't treat it. Like juvenile diabetes or cancer or there are even kids with osteoporosis already. I don't want to scare you, i just want to help. A kind of help i didn't have, but i would have wished for. I never had a better life before my diagnosis than i have now.

I wish you good luck and a get well soon to your son, Stef
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#5 of 39 Old 02-07-2005, 07:09 PM
 
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Stef gave you some excellent information, but the intestinal tract can get badly irritated with any allergen. Some allergies manifest themselves w/in the gut and can destroy villi in the same manner as celiac disease. That's one reason why so many food-allergic babies have problems with malabsorption.

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#6 of 39 Old 02-08-2005, 01:43 AM
 
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Either way you should get tested for it to make sure you don't have it. If you just have an allergy it's not THAT bad, but if you have celiac, it's much more severe.

Hugs, Stef
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#7 of 39 Old 02-08-2005, 02:26 AM
 
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Um..."just have an allergy"? ..."not THAT bad"? Obviously, you've never met my son.
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#8 of 39 Old 02-08-2005, 03:47 PM
 
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Besides celiac I also have very severe allergies. But with an allergy you see the reaction right away. With celiac you don't. It's a silent, slow and (at the end) painful death. And an allergy can't give you cancer, diabetes, osteoporosis (when you're still a child), gall bladder disease and all the other things. That's what I meant. And against an allergy you can take an allergy pill. You CAN Not do that with celiac, you have to cut out wheat, rye, oat and barley. Since she said, that despite the allergy pill he was still itchy, it seems logical. And you have absolutely no idea, where there is hidden gluten nowadays, because they practically throw that stuff in everything. I already found it in yoghurt and look on the ingredient list of a campbell's tomato soup. Or dressings and marinades. It's even in baby-food. And the thing is, the manufacturers don't write wheat on it (well, only Kraft does), it's hidden in other terms. That means, you have to go shopping with a list from the support group. And since alwayslearning2's son's already allergic to wheat, this is absolutely an option. Besides, if you detect celiac disease and treat it most allergies disappear anyway. And if you treat it in time, the other diseases (see above) are most likely not going to appear (not because of celiac, if they still do).

But I just can lead the horse to water, it has to drink on it's own. I just wanted to help. And ignoring the problem doesn't make it go away. And fainting signs can also be a sign of diabetes, which in turn can come from celiac. It just sounds all too familiar to me. And blood in the stool can come from the destroyed hair in the small intestines, also slime (mucus) can be a sign of it. If you're on the internet anyway, just take the time and go to www.celiac.com, get registered and then try to understand the problem. They have also a search button where you can compare it with allergies, if you don't believe me. Try to do a simple test on your own. Try to find out what your kids poopy does in the toilet bowl. Does it sink down or does it swim on top of the water? Doesn't hurt to check that out. It's one of the lot of signs for celiac, that scientists found out over the years of studying celiac. And then tell me. Then I will tell you, what the solution to that little riddle is and why it does, what it does.

Hugs, Stef
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#9 of 39 Old 02-08-2005, 07:32 PM
 
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Stef,

You very obviously have a strong understanding of celiac. Unfortunately, so do I.

You do not, however, fully understand allergies. As I said before, you do not know my son.

Quote:
But with an allergy you see the reaction right away. With celiac you don't. It's a silent, slow and (at the end) painful death.
This is NOT true. My son does react to some of his allergens immediately; others, however, attack his gastro-intestinal tract. The symptoms are almost exactly like celiac. My son does not have celiac disease; he is, however, allergic to gluten and it attacks his gut, to the point that many docs were pretty sure CD was the problem. Apples do the same, as, we're learning, do a lot of other foods. We discovered it when he was a baby. So, we have to avoid gluten with the same intensity as you do, in addition to completely avoiding his other 25+ allergies (allergies, not intolerances). He almost died as an infant, not from the immediate ana. reactions, but to the delayed responses, the ones that tore up his gut and wouldn't let him absorb the nutrients he needed. He did not gain one ounce from 2 mos old until he was 7 months old--for five months, absolute nothing.

Others are not so lucky. The problem builds for years until they can no longer tolerate ANY food. Older children, ages 8, 9, 10, have to drink an elemental formula that costs up to $2000/month in order to allow their gut to heal. Then, after months of formula only, one food is added at a time--and because it is a delayed response, not an immediate reaction, parents must wait at least a month before trying anything else.


Quote:
And an allergy can't give you cancer, diabetes, osteoporosis (when you're still a child), gall bladder disease and all the other things.
Again, this is NOT true. I don't know about diabetes, but they are linking damage from allergies to cancer and I know of children who have gotten osteoporosis because, again, they couldn't absorb the nutrients necessary.


Quote:
And against an allergy you can take an allergy pill.
There is no allergy pill!!!! There is medication, strong medication, that might keep a reaction from getting more serious. It doesn't do a whole lot for the delayed reactions, but, for the more immediate anaphylaxis, it might keep a child from DYING. It's not a cure; it doesn't allow you to eat the foods to which you are allergic; it doesn't even make the reaction just *poof* disappear. The few times my son has had an ana. reaction, it saved his LIFE!

I'm trying very hard to stay calm, because you obviously have no idea how dangerous or extensive allergies can really be and apparantly you've never had to decipher a label for corn or soy. I've spent the last 2 years researching and reading and fighting for my son, and you've given out a lot of false information in addition to downplaying the struggles my son and other children with similar allergies have faced. Please don't make dangerous assumptions based on your own experience with allergies.

Missy
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#10 of 39 Old 02-08-2005, 08:27 PM
 
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Sorry Stef ~ Have to agree with Missy here again. My ds has Eosinphilic esophagitis whish is allegy based. Basically his bodytreats any of his allergens (and for a while all foods) as bacteria and sends white blood cells to attack them. The only reason we found out is because he was vomiting and getting diaharrea after eating and pretty much 24/7. He went from at 9 mo having to wear 2T clothes to at 19 months weighing less then he did at 9. He went from the 90% tile to the 5%tile. We had to take out all major allergens AND everything he tested allergic to, At 28 mo he is still 28 lbs, which tells me the foods that we added back in per Dr's orders are still bothering him. We had to feed him the formula Missy mentioned in order to even get him to gain weight or height. The child wore size 5 shoes for OVER a year.

Not to mention that he is anaphylatic to Egg and Peanuts (that we know of) and if he even comes into contact with them gets immediate hives, let alone the damage digesting them night due to his intestine. It takes at the least 6 weeks for the esophagus (if it isn't a bad case) and the rest of the digestive system to start healing. AND the only way you can diagnose it is by repeated endoscopies. There is no blood test to see if it might be a risk factor. AND you don't know if he is having a reaction to something until sometimes 3-14 days later.

Zach has a life-long disease with this, along with his FA's and asthma, so it can effect you.


Missy ~ Have you checked into EE?
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#11 of 39 Old 02-08-2005, 09:13 PM
 
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Thanks, Jessica--

Unfortunately, yes, we have looked into EE. He's had 2 negative scopes, but Dr. Wood finally told us that it probably hasn't been dxed because he has so many IgE-mediated allergies and his diet has been very limited, very controlled. He told us that he has a "mixed bag" and, as his IgE numbers go down and we start trialing foods, we'll probably end up with an EE dx. And, I've noticed that as I've started trialing him on new RAST-negative foods, he reacts (these are not foods that were ever positive--he hasn't lost any allergies yet--just foods that were never a positive but we had been hesitant to introduce). So, I think we're starting to see that now.

I've been able to just kind of let it float over us as a future concern, but I do follow most of the EE posts on POFAK so I can get some idea what to look for and how to be prepared.

Missy
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#12 of 39 Old 02-09-2005, 02:03 AM
 
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Stef--

You are not reading our posts very carefully. Please, understand that there are allergies that are as severe, if not more severe, than celiac disease. My son has been tested for celiac three times. They finally did a genetic test--one lab in the entire US does that--and it came back negative. I don't have the gene, my husband doesn't have the gene, my son doesn't have the gene. If a child is avoiding gluten, you can do 5000 scopes and they will still be negative. You have to be eating gluten for several months prior to a scope to have an accurate test.

I don't know where you live, but my experience in the states shows that drs. here have far more knowledge and experience with celiac disease than with non-IgE-mediated allergies and with EE. You are taking your experience with one kind of allergy and applying it across the board to everyone. Allergies don't work like that.

I am angry--yes, I am angry--because you have made several misinformed, dangerous statements. Your info about celiac disease is very thorough, but you have no comprehension of the long-term impact non-IgE-mediated allergies can have. Celiac disease is bad; it can be overwhelming; it can lead to life-threatening conditions--but so can non-IgE-mediated allergies.

Please, don't undermine the very severe, life-threatening challenges created by allergies. We have that battle enough in our daily lives. This board is supposed to be a retreat from that kind of ignorance.

Missy
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#13 of 39 Old 02-09-2005, 02:32 AM - Thread Starter
 
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Thanks everyone for helping, I have read so many books on allergies, but I can't remember much in detail. so frustrating.
grrrrrrrrrr

Does anyone know why Benadryll causes posturing /tics? I read the insert info online, but that didn't explain very well.

Resources to find allergist and GI doctor who will work with me?



I wanted to test for cealic, but didn't want to put him through another endo ( after the traumatic hospital testing for 3 days after he passed out / postured for no apparent reason) The GI doc said to wait to test for Cealic after a couple months of no gluten, it's hard to avoid even oats though. He likes rice bread, I haven't been successfull with cookies that taste decent, however he loves the bannana bread, that I'm gratefull for.
I did find one granola type bar that I can keep in the diaper bag, it's made from figs, agave nectar and apples and something else I can't remember. I'll post the name of it when I go to the store next, I got it at a whole foods store.
I put coconut oil on the poor kid's sandwhiches to get him to take in calories, his most a day is about 900. that's with bribery ( which I think is terrible and damaging, but I'm desperate to have him gain some weight!!!!!!
He looks a fuller in the face and tummy, and actually eats a few veggies again since eliminating gluten ect. )
Does anyone know where to buy yogurt maker cups? he does not tolerate the sugar in soy yogurt, he gets exema and refluxes a lot. I tried making it in a warm oven... that was an utter failure.
I gave him probiotics for a while, but they only helped for a couple months.

I'm sooooooo frustrated, the GI doc said he wants E to weigh 30 lbs at 3yrs, as If I'm not feeding him enough!! When I spend all day following him around with banannas and soy nut butter he still only gets about 900 calories. When he was younger the GI said he would need a feeding tube if he didn't gain weight, he was in the 90th for height and 75th for weight at birth, now it's 5th, ut used to be below 5th a bit. He didn't start solids till 8 months, he just was not interested.
even the reagualr ped said "he' s not wasting away" when I mention his low weight.
Why won't anyone take me seriously?
So begins the search for a new allergist, thanks for the kick in the butt, I thought I was just over worried. I wonder if my questioning ans searching for a cause has made them think I'm nutz. maybe that't why they aren't taking me seriously. it happens everywhere.

I found out about the wheat allergy because he has not grown out of severe reflux yet ( wakes coughing/ refluxing several times a night)

An MD/ homeopath suggested the elimination diet. He didn't get hives but refluxed like crazy and had bloating/gas when wheat was reintroduced. I also reacted, my eyes get puffy for about a week when I eat wheat, possibly even just gluten too.
I am so tired of constantly having to fight for basic care.
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#14 of 39 Old 02-09-2005, 12:47 PM
 
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Quote:
Originally Posted by stef_g
I don't understand, why you people get so mad. I'm just trying to help. And why not get tested? Then you guys no for sure. And i'm sure, it would make your life a lot easier, because there are a lot of celiacs out there that lost their allergies. Like milk for example, because the celiac actually was the culprit of the allergies.

And there's NO SIMPLE blood test, to test celiac. The standard method is a blood test (which isn't SIMPLE) and a biopsy of your small intestines.

And you obviously didn't read my post good enough, because i wrote that i have very severe allergies, too. And believe me, i already had a lot of life-threatening anaphylactic reactions where i almost ended up dead.

And most celiac puke their guts out as well and have diarrhea that everything is too late. I posted this post on our celiac message board, because i didn't know anymore how else to help. And I will post the celiac thread back here now, so you can read their answers, too.

http://www.glutenfreeforum.com/index...topic=4887&hl=

I still wish you the best and hope you find out the best for your kids, Stef
Ok since you found the need to call us ignorant on your board, thanks so much for your kind understanding of our children's life threatening diseases. Did I say simple, no I believe I said blood test. I know what is involved with Celiac's disease, I have a VERY good friend whose son has it and as we avoid wheat and many other gluten containing foods, we talk extensively about the pain her 5 yo goes through if he eats gluten of any kind. I believe the problem we had with your posts was the following

Quote:
Originally Posted by stef_g
Either way you should get tested for it to make sure you don't have it. If you just have an allergy it's not THAT bad, but if you have celiac, it's much more severe.

Hugs, Stef
Wow talk about belittling, did you read my post on EE which is just as bad if not worse then Celiac cause it can do almost the samething, except oh yes, you can't EAT if it gets bad. But I guess you missed that part. Because allergies, aren't that bad, they can't cause malnutrition, or failure to thrive like Celiac can. Oh Wait it can! It can also cause issues with growth and develpment, just like celiac's but yes that's right, It's not THAT bad. Whatever!

What Missy and I were trying to relay was that it could be either and it isn't neccessarily Celiac, infact what did Missy say of yes here it is!

Quote:
Originally Posted by Missy
Stef gave you some excellent information, but the intestinal tract can get badly irritated with any allergen. Some allergies manifest themselves w/in the gut and can destroy villi in the same manner as celiac disease. That's one reason why so many food-allergic babies have problems with malabsorption.

Missy
But I guess you didn't read that post either? Because we are so ignorant. Here let me link you to a couple sites I use to help my son's NOT serious condition.

http://apfed.org/
http://apfed.org/egid.htm
Quote:
About Eosinophilic Gastrointestinal Disorders (EGID)

What is EGID?
A growing number of children and adults suffer from a chronic and complex group of disorders described as Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID). These disorders are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places anywhere in the digestive system. EGID is further subdivided into organ-specific diagnosis. For example, Eosinophilic Gastritis means eosinophils infiltrating the stomach. "itis" means swelling. While visual swelling is not always present, cellular level swelling often is apparent under the microscope.

Eosinophilic Esophagitis (EE) is high amounts of eosinophils occurring in the esophagus.

Eosinophilic Gastroenteritis (EGE) affects the stomach and small intestine.

Eosinophilic Colitis (EC) describes the occurrence of high levels of eosinophils in the large intestine.

Above normal amounts of eosinophils within the digestive system may or may not be enough to diagnose a person with an EGID; what the eosinophils are doing while present is equally important. Currently, without a standardization of diagnostic criteria, medical institutions use different variations of the same criteria including: swelling, numbers and activity of eosinophils, and symptoms.

What is an Eosinophil?
Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cell (WBC). Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Named after “Eos” the Greek goddess of dawn, eosinophils are characterized by their bright red-pink color and double nucleus when stained and viewed under the microscope. Eosinophils are most commonly associated with allergic diseases and parasite infections.

What are the Symptoms of EGID?
Symptoms vary widely, depending on the area affected.
Symptoms of EGID include:

• Nausea or Vomiting
• Diarrhea
• Failure to thrive (poor growth or weight loss)
• Abdominal or chest pain
• Reflux that does not respond to usual therapy (which includes proton pump inhibitors,
a medicine which stops acid production)
• Difficulty swallowing (dysphagia)
• Food impactions (food gets stuck in the throat)
• Delayed emptying of the stomach (gastroparesis)
• Anorexia (poor appetite)
• Bloating
• Anemia
• Blood in the stool
• Malnutrition
• Difficulty sleeping


Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others. Because the symptoms can vary greatly and mimic other diseases, the diagnosis may take years.

How is EGID Diagnosed?

Endoscopy and biopsy is the ONLY way to confirm the diagnosis of EGID.

During an endoscopy, the gastroenterologist looks at the GI tract through an endoscope and takes multiple small samples (biopsies) which the pathologist reviews. A high number of eosinophils (counted per high power field) suggest the diagnosis of EGID. The pathologist will also look for the location of the eosinophils, changes in the tissue layers, and degranulation (spilling of the contents of the eosinophils). Eosinophils may be normally found in small numbers in all areas of the GI tract except the esophagus. GERD (reflux) is associated with low numbers of eosinophils in the esophagus (usually < 5/ hpf, but can be up to 20/ hpf). In EGID, the number of eosinophils seen is much higher, greater than 20/ hpf.

Once the diagnosis of EGID is confirmed, food allergy testing is typically recommended to guide treatment. Tests for food allergies include skin prick testing, patch testing and Radioallergosorbent test (RAST).

Can EGID be Cured?
There is no "cure" for EGID, but treatment can help alleviate symptoms and prevent further damage to the gastrointestinal (GI) tract. Treatment of eosinophilic disorders will vary based on the location of the eosinophils, severity of symptoms, and other medical problems the child/adult may have. In most cases, dietary measures and medications can significantly improve problems related to the underlying eosinophilic disease. Your doctor will help guide you through the various treatment options to find a therapy that is best for you and your family.

Treatment options include:
• Restricted or "elimination" diets
• Elemental diets
• Medications

Dietary Therapy
Food allergy testing is used as a guide for an "Elimination" diet. An elimination diet means strictly avoiding all foods to which the patient has tested positive on allergy testing. Skin and patch testing are used to guide elimination diets, but it only takes one false negative food for the diet to "fail".

Sometimes a stricter diet – an elemental diet – is needed. Skin and patch testing are used to guide elimination diets, but it only takes one false negative food for the diet to "fail". Elemental diet means No protein, either in its whole or incomplete (pre-digested or hydrolyzed) form is allowed. Special elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.

Children and adults who rely in part, or completely, on an elemental amino acid based formula may have a difficult time drinking enough of the formula. To maintain proper nutrition, some require tube feedings directly into the stomach (enteral feeds). In the most severe cases, nutrition is administered directly into the blood stream (parenteral feeds).

Medication
There are no medications to cure eosinophilic disorders. Medication may suppress eosinophils in the gastrointestinal tract and relieve symptoms of the disease. Steroids are most commonly used in conjunction with dietary management. Steroids can be given topically (spray that is swallowed), by mouth, through a feeding tube or through an intravenous line. Your healthcare provider will determine the type of steroid, amount and duration of treatment based on individual needs. Side effects from steroids often limit long-term use. Aside from diet and steroid treatment, there is no "magic bullet" available to treat eosinophilic disorders. Not all types of eosinophilic diseases respond to the same treatment and different people with the same disease type may need very different medications.

How will EGID Affect my Life?
The diagnosis of an eosinophilic disorder is life-altering. Beyond the debilitating physical symptoms, those afflicted often suffer social and emotional scars by living in a society that focuses on food. A positive attitude and a focus on non-food activities go a long way in learning to live with these disorders.

Adults with EGID face unique issues associated with employment, inter-personal relationships, insurance, medical care and family. Holidays, parties and family gatherings are often food-focused, particularly for adults. There is no need to miss out on holiday and other celebrations. Attend anyway, and engage in cheerful conversation!

Children with EGID face the additional challenge of managing chronic illness while in school. Missed school days, holidays parties, feeding pumps and the feeling of isolation complicate what should otherwise be a care-free childhood. Children often reflect parental attitude about their illness and limitations. Readjusting attitude towards food is a very important first step. Food is simply nutrition, whether formula through a tube or a severely restricted diet.
Some suggestions to help your child adjust:
• Focus on what your child CAN do.
• Encourage your child to pursue non-food related interests and hobbies.
• Stay involved in your child’s school.
• Participate in planning holiday celebrations.
• Plan creative fun birthday parties.
Other diseases associated with it.
http://apfed.org/hescss.htm

Wow yep, so those kids and adults with tubes have the Life don't they Woo-Hoo!

Prehaps before you judge what we are saying, you need to take a look at the OTHER causes out there.


Please note this message is exclusive of my thoughts and are not the thoughts or opinions of Mothering.com Feel free to flame me on other message boards, but I have no problem posting there either.
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Thanks, Jessica--

Unfortunately, yes, we have looked into EE. He's had 2 negative scopes, but Dr. Wood finally told us that it probably hasn't been dxed because he has so many IgE-mediated allergies and his diet has been very limited, very controlled. He told us that he has a "mixed bag" and, as his IgE numbers go down and we start trialing foods, we'll probably end up with an EE dx. And, I've noticed that as I've started trialing him on new RAST-negative foods, he reacts (these are not foods that were ever positive--he hasn't lost any allergies yet--just foods that were never a positive but we had been hesitant to introduce). So, I think we're starting to see that now.

I've been able to just kind of let it float over us as a future concern, but I do follow most of the EE posts on POFAK so I can get some idea what to look for and how to be prepared.

Missy
Ugh so sorry I have heard of Dr. Wood. Have you considered the simple elemental formula diet to see if it can help heal?

HUGS
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Hey Alwayslearning - I might have some recipes you can use. Can your son at cashews? I have a recipe for cashew yogurt - or you can make it with sunflower seeds instead:

Cashew Yogurt
This creamy, nondairy yogurt just takes a few seconds to mix up. The incubation period is 8 to 24 hours depending how warm you keep it.

1 cup raw cashews
1 cup water

Place cashews in blender and grind to a coarse powder. Add water and blend until smooth. It should have a consistency of heavy cream. Pour mixture into a jar and place in warm location (70ºF to 100ºF). Cover with a light towel or napkin. Start checking the yogurt after 6 hours. First you should notice bubbles forming. When it has formed thick curd with a layer of liquid (whey) on the bottom, cover and transfer to refrigerator. Chill for at least one hour. When ready to eat, stir the whey and yogurt together. Add a little honey, agave nectar, maple syrup, molasses, fruit, or jam if desired. Yogurt will keep refrigerated up to a week.

Makes 2 cups

Note: Choose a place where the temperature will remain constant to incubate your yogurt. I like to fill a small cooler with warm water and place the jar in the water (make sure the water is below the level of the jar). Another good place is on top of the pilot light in a gas stove. As long as the temperature in your house is at least 70ºF, you can place the jar anywhere. Keep in mind, the lower the temperature, the longer the incubation. At 70ºF, it will take about 20 hours.

I also have some gluten free baked stuff:

Flourless Sesame-Almond Cookies
These delicious crispy cookies are gluten- and egg-free.

1/2 cup sesame seeds
1 cup almonds
1/2 cup softened unsalted butter or coconut oil
1/2 teaspoon sea salt
1 cup arrowroot powder
1/4 cup + 2 tablespoons evaporated cane juice
1 teaspoon almond extract
1/2 teaspoon vanilla extract
1 tablespoon grated orange rind (optional)
2 to 3 tablespoons water or orange juice

Preheat oven to 300°F. Oil 1 or 2 large cookie sheets. In food processor or blender, grind sesame seeds and almonds to powder. In mixing bowl or food processor, mix ground seeds and almonds with butter or coconut oil, sea salt, arrowroot powder, evaporated cane juice, almond extract, vanilla, and grated orange rind. Add water or juice, a little at a time, until dough holds together. Place walnut-size balls on prepared baking sheet leaving about 3 inches in between. Press balls with fork twice to form a criss-cross pattern. Bake 20 to 22 minutes, or until bottom and edges are golden.

Makes about 2 1/2 dozen

Gluten-Free Bundt Cake with Apricot-Orange Glaze
This cake is so moist and delicious, no one will guess it has no wheat or eggs in it. It is good on its own or with the glaze.

1/2 cup very soft unsalted butter or coconut oil
3/4 cup maple syrup, brown rice syrup, agave nectar, or honey
2 tablespoons flaxseeds, ground
1/4 cup water
1/4 cup orange juice
Grated peel of 1 orange
1 cup plain yogurt (dairy or nondairy)
2 teaspoons vanilla extract
2 1/2 cups brown rice flour
1 teaspoon baking powder
1/2 teaspoon baking soda
1/4 teaspoon sea salt
1 teaspoon ground cinnamon
1 teaspoon ground cardamom
1/4 teaspoon ground nutmeg

Apricot-Orange Glaze:
1/2 cup 20-Minute Apricot Jam (page xxx) or prepared apricot jam or preserves
3 to 4 tablespoons orange juice

Preheat oven to 350ºF. Oil a bundt pan. Beat butter or oil and sweetener together until smooth. In small bowl, mix ground flax and water. Add to butter mixture along with orange juice and peel, yogurt, and vanilla. Beat well. In separate bowl, sift remaining ingredients together. Stir liquid ingredients into flour mixture. Pour into prepared pan and bake 45 minutes, or until tester inserted in cake comes out dry. Let cool 10 minutes, then remove cake from pan.
Place glaze ingredients in saucepan. Stir together over low heat until warm and thinned out. Spoon glaze over cake if desired. Serve warm or room temperature.

Makes 12 servings

Energy Bars

1/4 cup sesame seeds
1/4 cup sunflower seeds
1/2 cup raisins
1/2 cup dried figs
1/2 cup peanut butter, almond butter, or tahini

Place sesame seeds, sunflower seeds, raisins, and figs in food processor with metal blade. Chop until everything is ground together. Add nut or seed butter and mix until combined. Roll mixture into balls or press into 8-inch round cake pan and cut into 1-inch squares. Keep refrigerated.

Makes about 3 dozen

Note: Nuts can be substituted for seeds and other dried fruit can be substituted for raisins and figs.

Variation

Coconut Energy Bars: Add 1/2 cup unsweetened coconut to mixture. Add a little coconut milk if necessary to help balls hold together.

Carob-Nut Balls
These are great energy boosters. Keep a batch in your refrigerator and take a few along when you go out.

1/4 cup almonds
1/4 cup walnuts
1 cup raisins
4 dried figs or dates, pits removed
1/4 cup carob powder
2 teaspoons blackstrap molasses
1/2 teaspoon vanilla extract
1/8 teaspoon ground cardamom
1 teaspoon minced fresh ginger or 1/8 teaspoon powdered
Pinch sea salt
About 2 tablespoons water
Carob powder or unsweetened shredded coconut for rolling

Place almonds and walnuts in food processor with metal blade and pulse to chop. Add raisins, figs or dates, molasses, vanilla, cardamom, ginger, and sea salt. Process until everything is uniformly chopped. Add water a little at a time until mixture holds together. Roll into 1-inch balls. Roll balls in shredded coconut or carob powder if desired. Keep balls refrigerated if you are plan to keep them around more than a day or two.

Makes about 2 dozen

Note: Other nuts or seeds can be substituted for the almonds and walnuts.

Coconut-Almond Shortbread
These amazing wheat-free treats are so luscious, you won’t believe they are good for you.

1/2 cup softened coconut oil or unsalted butter
2 tablespoons almond butter
1/4 cup honey, brown rice syrup, or agave nectar
1/3 teaspoon almond or vanilla extract
1 cup brown rice flour
1 cup rolled oats
1 cup unsweetened shredded coconut

Preheat oven to 350ºF. Beat together coconut oil or butter with almond butter, sweetener, and almond or vanilla extract until smooth. Add remaining ingredients and mix until combined. You may need to use your hands to knead this dough a few times so it will hold together. Place dough on unoiled baking sheet. Press into an 8-inch disk. With sharp knife, cut dough into 12 wedges but don’t separate. Prick each wedge several times with a fork. Bake 25 minutes, or until edges are golden brown. Cool before separating wedges.

Makes 1 dozen

Note: If nut allergies are a problem, tahini can be substituted for the almond butter.

Also - there is a new allergy book out The Food Allergy Survival Guide which I recently reviewed. It had a lot of good info and recipes . . . .

Cathe Olson, author The Vegetarian Mother's Cookbook, Simply Natural Baby Food, and LIck It! Creamy Dreamy Vegan Ice Creams Your Mouth Will Love.  
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Quote:
Originally Posted by alwayslearning2
Does anyone know why Benadryll causes posturing /tics? I read the insert info online, but that didn't explain very well.
Not sure, do you use the dye-free version?

Quote:
Originally Posted by alwayslearning2
Resources to find allergist and GI doctor who will work with me?
Where are you located? Have you heard of the Yahoo group POFAK? I would go and apply for membership, we are about 10 days deep in new members but you can be rushed through if needed. With the over 2100 of us on that group we can find you someone.

Quote:
Originally Posted by alwayslearning2
I wanted to test for cealic, but didn't want to put him through another endo ( after the traumatic hospital testing for 3 days after he passed out / postured for no apparent reason) The GI doc said to wait to test for Cealic after a couple months of no gluten, it's hard to avoid even oats though.
Ok you have to be ON Gluten to have a scope to see if you have Celiac. You can have the blood test run for the markers to start with though.

Quote:
Originally Posted by alwayslearning2
He likes rice bread, I haven't been successfull with cookies that taste decent, however he loves the bannana bread, that I'm gratefull for.
I did find one granola type bar that I can keep in the diaper bag, it's made from figs, agave nectar and apples and something else I can't remember. I'll post the name of it when I go to the store next, I got it at a whole foods store.
Ok Enjoylifefoods.com has GREAT cookies ALL of there foods are free of the top 8 allergens, Plus. Zach LOVES the Ginger Spice and they have a No Oats Oatmeal cookie. There bakery is dedicated gluten-free nut-free bakery.


Quote:
Originally Posted by alwayslearning2
I put coconut oil on the poor kid's sandwhiches to get him to take in calories, his most a day is about 900. that's with bribery ( which I think is terrible and damaging, but I'm desperate to have him gain some weight!!!!!!
He looks a fuller in the face and tummy, and actually eats a few veggies again since eliminating gluten ect. )
Does anyone know where to buy yogurt maker cups? he does not tolerate the sugar in soy yogurt, he gets exema and refluxes a lot. I tried making it in a warm oven... that was an utter failure.
OK it could be the SOY caused the ezcema, many kids that are allergic to Milk have problems with Soy.

Quote:
Originally Posted by alwayslearning2
I gave him probiotics for a while, but they only helped for a couple months.
They may have been cultured on Milk. I believe Kirkman's has a dairy-free version.

Quote:
Originally Posted by alwayslearning2
I'm sooooooo frustrated, the GI doc said he wants E to weigh 30 lbs at 3yrs, as If I'm not feeding him enough!! When I spend all day following him around with banannas and soy nut butter he still only gets about 900 calories. When he was younger the GI said he would need a feeding tube if he didn't gain weight, he was in the 90th for height and 75th for weight at birth, now it's 5th, ut used to be below 5th a bit. He didn't start solids till 8 months, he just was not interested. even the reagualr ped said "he' s not wasting away" when I mention his low weight.
Why won't anyone take me seriously?
Ok I am and would be concerned also. I would see about getting the allergy testing again, once we find you a new allergist.

Quote:
Originally Posted by alwayslearning2
I found out about the wheat allergy because he has not grown out of severe reflux yet ( wakes coughing/ refluxing several times a night)

An MD/ homeopath suggested the elimination diet. He didn't get hives but refluxed like crazy and had bloating/gas when wheat was reintroduced. I also reacted, my eyes get puffy for about a week when I eat wheat, possibly even just gluten too.
I am so tired of constantly having to fight for basic care.
Ok Reflux that doesn't go away is also a sign of EE along with the big D and the Vomitting. Please PM me once you read this and we will find you a new Dr ASAP.

HUGS You are following your instincts Mama and that is what is RIGHT!
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Stef has posted this thread on the gluten free forum, beacause she cares. A lot of these experiences that have been described here in these posts are being described on the celiac site. These 2 groups could be sharing resources of food sources, experience, and so much more.

AS far as diagnosing celiac disease, the medical community is failing. I spent thousands of dollars last year for testing. My daughter was finally genetically tested and diagnosed with the DQ2 and DQ8, ( the 2 most associated with Celiac). I have not been diagnosed. I went through the doctors telling me everything was just fine, kids get diarrhea, must be some kind of virus-go home and rest, don't worry you're still on the growth chart, IBS, and the list goes on. Allergy testing was never mentioned or reccomended. The tests for Celiac came back negative, (blood, and biopsy) We have 100% improvement on the gluten free diet.

Maybe Steph didn't say it the way you need to hear it, terms weren't used correctly, but she was only trying to help. Sometimes, I reprimand my husband for the way he describes Celiac to others. When a person has suffered a long time undiagnosed, you would do anything to try and help someone else, especially a child.

Celiac Disease has many various symptoms, including multiple allergies.
My experience with testing, and others, has shown testing is not very accurate. (Mid-West U.S.A.) (I believe there is an average of ten years for a diagnoses.)
Any allergy, medical condition, should always be taken seriously.
My heart goes out to anyone seeing their loved one sick, in pain, or just not growing and thriving. I've been there, and it's torture.
Laura
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Laura ~ Thank you for your thoughtful post. While she did provide great information, she basically called us idiots for thinking FA's could be worse then Celiac, which no one said. Then to post that we are ignorant to another board I happen to frequent by reading and not posting was not cool. We are here to help and were offering other options but Stef declared that hers was the answer.
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Laura,

I'm tired of this I deal with people who don't understand allergies daily and it's exhausting.

My first post about Stef was polite, and gave her credit for mentioning CD. I simply wanted it understood that allergies can just as severe and even mimic the symptoms of celiac. Stef chose to minimize the experiences of our children and the dangers they face; she chose to spout a list of common misperceptions about allergies--the same misperceptions I struggle with daily, the same misperceptions that could kill my child.

I listened to her posts; I never said celiac wasn't a serious condition. And, unlike the claims made in the spiteful, nasty posts about me on the celiac site, I am very aware of celiac disease--I did the research. My son was repeatedly tested for celiac before they ruled it out via genetic testing and I resent people who don't know me and who obviously did not read my posts carefully making judgments about my parenting.

I resent being called ignorant when I never downplayed or belittled someone else's medical condition. I resent being called ignorant by a group of people who don't understand and obviously don't care to understand that there are allergies that have at least as great an impact as celiac disease, in daily life and in long-term health. The attitudes were mean-spirited and short-sighted and I'm not here for that. I'm saddened that this forum has been exposed to a group that has so little regard and empathy for others. And that this group, who claims to "care" so much, continues to belittle others.



Missy


ETA: The celiac board may be a great support group, filled with wonderful people--but my first exposure to it doesn't show that. Instead, I was attacked and judged. Not nice or supportive.

Also, Laura, there is one lab in the US (somewhere in CA) that does the genetic testing for celiac; it's about 99% accurate. You're right that the standard bloodwork and the biopsy is too inaccurate.
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I think Jessica said it the most diplomatic and objectively.

So yeah... what Jessica said.

And as for the post on the other forum... it's funny how one of the responses said that some people are just hellbent on BEING right because that's how Stef came across.

Some of the other responses included people saying "they don't know because they've never experienced it" (btw--awful lot of new members over there)... but then they've never experienced some of what is being discussed in the way of FAs here, either. Hmmmm....

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#22 of 39 Old 02-09-2005, 02:57 PM
 
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You're right, Heather. Jessica's response was very diplomatic and appropriate. I think I'm just tired of feeling attacked.
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Missy... I posted that before I saw your response (which was on the next page and posted about the same time as mine)!! I didn't direct it to you in any way 'cause I hadn't even seen your post!

FWIW... I can T O T A L L Y relate to what you're saying about dealing with people that don't get it (although my experience is w/my son's dev problems) and I agree that you were very polite initially. I also resent being called ignorant by someone who was clearly ignorant themselves! :

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I just want to remind members of the user agreement about cross posting:

You are expected to avoid the following when you post:

5. Posting to invite members to other boards for debate purposes or posting about discussions at other boards. This is to maintain and respect the integrity of our own and other communities.

Cathe Olson, author The Vegetarian Mother's Cookbook, Simply Natural Baby Food, and LIck It! Creamy Dreamy Vegan Ice Creams Your Mouth Will Love.  
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#25 of 39 Old 02-09-2005, 07:22 PM
 
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Thank you, Cathe.

I wouldn't have even mentioned it, except that I made the mistake of visiting the site and found myself the focus of a really nasty discussion. It was disconcerting.

Missy
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You ladies are not ignorant! It just isn't my place to offer apologies for the Celiac board members who definately owe you the most sincere apologies. Thank you for the information in your posts. I admit I haven't had a chance to read it as in depth as I hope to.
As a parent, I see the need to educate not just the adults around us, but the children too. Our children on special diets and having allergies need to be treated with respect and consideration.
Laura
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Thank you Laura! Your understanding is awesome!
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Also - there is a new allergy book out The Food Allergy Survival Guide which I recently reviewed. It had a lot of good info and recipes . . . .[/QUOTE]


Thanks so much for the recipies!!!!! I'lll have to get yor cook book, I've been planning to get the food allergy survival guide. Thanks again! He loves granola bar type things!!!!

I havent' had much luck getting him to eat cookies with honey or even brown rice syrup, I'll try agave nectar next, what do you think about stevia, I tried stevia and honey, that was not good!!!
Cookies wouldn't be a big deal if he wasn't in preschool there is a b-day every other week!!!!!!!!!
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Given his problems with benadryl and sugar, have you considered a corn allergy? My son reacts to the corn derivatives in benadryl as well as to the corn used in the bleaching process of white sugar. We use raw sugar with no problems. If you think that's a possibility, I have a decent cookie recipe. You might have to play around with it a little, but I've gotten some really decent cookies out of it.

Missy
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The only things I like with stevia are liquids like lemonade or tea or pudding type stuff - it works great for whipped cream - as long as you don't overdo it because then you get a licorice taste.

I use agave nectar often - just substitute it for honey or brown rice syrup in a recipe.

I have some granola bar type recipes but they all use oats - what do you substitute for oats - rolled barley, but that has gluten too. I've heard that there are rolled rice but I've never seen it anywhere.

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