Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

azmom3

Dr. Thinks It Might Be Eosinophillic Esophagitis, Not Celiac

Rate this topic

Recommended Posts

Our son just turned 2 a few weeks ago. We had our first visit with our pediatric GI dr. 2 days ago. By the way, we waited a long time to see her as she came highly recommeded and is very knowledgeable of celiac disease. We have not tried the gluten-free diet as we are still waiting on the endoscopy, which won't be until the end of November now.

She mentioned something called eosinophillic esophagitis and said he may have celiac or this (both of which will be checked during the endoscopy). Anyone else know anything about this? My son's blood tests were negative for teh two more specific celiac panels, but positive on the less specific (IgG, I think?) She said this number could mean celiac, but also points to allergy problems (both food and environmental). He has been tested for milk, egg, peanuts, tree nuts, cats and dogs so far and came back with a moderate high positive on almost every single one, with moderate positive on 1 or 2 of them and negative to 0. Our allergy/asthma dr. will be doing skin testing on Monday to determine if he's allergic to any other foods and to determine if we need to run more through his blood test. We are testing his blood for the Cystic Fibrosis gene, redoing the celiac panel, and probably more foods, but are trying to minimize the number of blood draws obviously.

Our allergy/asthma dr had us continue with a regular diet, including allergens, until our appt. with the GI dr. The GI dr., however, had us immediately take these out of his diet and put him on a few medications (for GERD, which we never even suspected and his severe constipation.) We are watching to see if he is able to gain any weight and reduce his other symptoms. We are trying to find out what other foods he may be allergic to so we can also take these out of his diet at the same time. For right now though, he is still eating gluten, but cannot have peanuts, tree nuts, milk (she said "or anything dairy"), or eggs. She said I don't have to read labels yet and that these things are probably fine in small doses, such as in baked goods, etc., but to not eat scrambed eggs, drink a glass of milk, etc. She also gave us 2 different formulas to try, with and without hershey's syrup. He refuses them both and spits it out immediately. I need some ideas for foods for him. he's picky with meat, fruits, and veggies, but I sneak them in wherever I can as I know he needs them. He's always loved carbs from bread to cereal, to baked goods, granola bars, etc. I need some menu ideas though based on his allergies. Also, what exactly is included in the term "dairy?" I have so many questions for our dr. as I felt a little overwhelmed with our appt. She said our son is "complex" and has a lot going on, that it's probably multiple issues were dealing with and we have to try to sort it all out. I am currently keeping a journal where we track his food, calories, and poop. I'm also tracking his sleep, mood, and any other notes I may want to jot down about him as it comes up. the dr. said he's supposed to be eating between 1000 and 1200 calories per day. I guessed he was probably close to that a few times per week, but now that I'm tracking it, I don't think he's ever hit that. Yesterday, I thought was a great eating day for him, but when I added it up, it was only 725 calories. And keep in mind, he has 2-3 days per week where he refuses food, maybe takes a bite or two here or there, but probably only getting a couple hundred calories on those days. How can I fatten him up? Sorry I'm probably rambling, but I wanted to throw this out there and see if anyone else has EE (eosiniphillic esophagitis) or what foods you eat when you're allergic to stuff. HELP, PLEASE!

Share this post


Link to post
Share on other sites

i have known someone who's child had an esosinophilic disorder and last i knew he was neocat-only at 2 years of age. i have a friend who suspected this in her child, but it turned out to be FPIES instead. this is really weird----i just posted about this very thing on another thread to someone else. if you are interested, i can get you in touch with my friend who knows quite a bit about both of these conditions. there is a really good doctor back east that specializes in this type of disorder.

http://www.cincinnatichildrens.org/svc/alp...osinophilic/fs/

my friend took her son to this hospital and saw dr. putnam.

Share this post


Link to post
Share on other sites
i have known someone who's child had an esosinophilic disorder and last i knew he was neocat-only at 2 years of age. i have a friend who suspected this in her child, but it turned out to be FPIES instead. this is really weird----i just posted about this very thing on another thread to someone else. if you are interested, i can get you in touch with my friend who knows quite a bit about both of these conditions. there is a really good doctor back east that specializes in this type of disorder.

http://www.cincinnatichildrens.org/svc/alp...osinophilic/fs/

my friend took her son to this hospital and saw dr. putnam.

I would love to talk to your friend. I've gotten some information off the internet, but it sounds like it's still so new that a lot isn't known about it. Some of the stuff I read sounds like it's not that big of a deal and then other things make it sound extremely serious and scary. I just want to be as knowledgeable as possible so I know what questions to ask the dr's and/or what things to insist upon, etc. I'd rather learn from someone who's gone through the testing processes and maybe save us some time and get him better quicker. The one thing that the dr. keyed in on was the fact that our son has a shaky voice (almost like a lamb baaa'ing). We just always thought it was just the way he was and probably are getting pretty used to it. It's the first time I mentioned it to any doctor and I just casually brought it up asking if it might be related to his asthma. She went over his other symptoms and said it sounds like GERD, but that he can't communicate what he feels. He burps a lot, but rarely spits up or vomits anymore, so I never thought much of it. We're treating him right now as if it's GERD, but due to his failure to thrive and other symptoms, are looking into the more serious things, too. We're in Arizona, so probably wouldn't go back East unless we were pretty sure this is what's going on and/or needed treatment for it (then of course, we'd go wherever we had to.) Thanks so much for your response!

Share this post


Link to post
Share on other sites

I also just posted to the other thread. My daughter, Megan, was thought to have EE or EG at one time. These are the best resources I found:

http://www.apfed.org/

and

http://www.kidswithfoodallergies.org/index.php

Cheri recommended the last one for me and got me signed up. they really helped a lot on their forum.

Thankfully her biopsy was negative for EE and EG.

As for the blood work, my son had bloodwork done and the only thing that was positive was the IGG, so I was told it couldn't be celiac. He also had 3 scopes and 2 negative biopsies. It is very possible that your son could have multiple issues, but it's also very possible that it's celiac alone since celiac can cause all of those symptoms. My son had most of the ones you mentioned, except he had D instead of C. My daughter had the C. It varies so much. The thing you need to keep in mind is that testing is soooo inaccurate for kids under 5. We went through 3 years of tests (all the ones you mentioned) until we finally just decided to try the diet and see if he improved. The difference was AMAZING.

The GI did not formally diagnose him with celiac disease because he knows I will keep him on the diet. It's harder to get insurance with a diagnosis, so he saw no need to do so since the biopsies were negative. He does believe that Cole has it, though. His dietary response has been that dramatic.

I'm not telling you to not go through with the tests, each parent has to make their own decisions. But I have been there before and going gluten-free made everything get better, even the asthma. Consider doing a diet trial since that may be the only option you're left with anyway. I really have been right where you are now with both of my kids and I know how torn you are between taking action and waiting on tests. I will pray for what you need to do to be revealed to you. I will also pray for your strength. You will need both.

Share this post


Link to post
Share on other sites
I also just posted to the other thread. My daughter, Megan, was thought to have EE or EG at one time. These are the best resources I found:

http://www.apfed.org/

and

http://www.kidswithfoodallergies.org/index.php

Cheri recommended the last one for me and got me signed up. they really helped a lot on their forum.

Thankfully her biopsy was negative for EE and EG.

As for the blood work, my son had bloodwork done and the only thing that was positive was the IGG, so I was told it couldn't be celiac. He also had 3 scopes and 2 negative biopsies. It is very possible that your son could have multiple issues, but it's also very possible that it's celiac alone since celiac can cause all of those symptoms. My son had most of the ones you mentioned, except he had D instead of C. My daughter had the C. It varies so much. The thing you need to keep in mind is that testing is soooo inaccurate for kids under 5. We went through 3 years of tests (all the ones you mentioned) until we finally just decided to try the diet and see if he improved. The difference was AMAZING.

The GI did not formally diagnose him with celiac disease because he knows I will keep him on the diet. It's harder to get insurance with a diagnosis, so he saw no need to do so since the biopsies were negative. He does believe that Cole has it, though. His dietary response has been that dramatic.

I'm not telling you to not go through with the tests, each parent has to make their own decisions. But I have been there before and going gluten-free made everything get better, even the asthma. Consider doing a diet trial since that may be the only option you're left with anyway. I really have been right where you are now with both of my kids and I know how torn you are between taking action and waiting on tests. I will pray for what you need to do to be revealed to you. I will also pray for your strength. You will need both.

Thank you! Yes, I'm so torn on everything just like you said. It's so hard. I've researched everything for countless hours and weighed everything. I do feel better waiting for the biopsies at this point, but I absolutely will be trying the gluten-free diet after that regardless of what they say. Thanks for all the info. I appreciate it!

Share this post


Link to post
Share on other sites

i highly recommend the kidswithfoodallergies website. there are a lot of families on there with children who have the disorder that your child might have. they really seem to know their stuff.

good luck---i'll keep your family in my prayers

Share this post


Link to post
Share on other sites

My son is severly allergic to milk and soy, beans and legumes and corn, and his pediatric GI at Children's hospital has been telling me to keep him on a "hypoallergenic" diet. He can eat wheat without a problem, and oats. He eats no milk, soy, corn, peanuts, tree nuts, fish, shellfish, beans, legumes, and he has reflux and gastritis. He eats a lot of rice and rice pasta, rice cakes, potatos, meats, and rice milk. Once you get used to it there is a ton of stuff to eat.

Share this post


Link to post
Share on other sites
i highly recommend the kidswithfoodallergies website. there are a lot of families on there with children who have the disorder that your child might have. they really seem to know their stuff.

good luck---i'll keep your family in my prayers

I will check out that website, thank you! And thanks for the prayers, too!

My son is severly allergic to milk and soy, beans and legumes and corn, and his pediatric GI at Children's hospital has been telling me to keep him on a "hypoallergenic" diet. He can eat wheat without a problem, and oats. He eats no milk, soy, corn, peanuts, tree nuts, fish, shellfish, beans, legumes, and he has reflux and gastritis. He eats a lot of rice and rice pasta, rice cakes, potatos, meats, and rice milk. Once you get used to it there is a ton of stuff to eat.

I think my son is too picky to begin with, and with fewer choices, I just feel like I'm running out of options. :o

Thanks for the ideas though. Sorry about your son being allergic to so many things, but glad that it sounds like you guys are adapting well. I figured by talking to people here, we will get used to it, but it's so overwhelming at first. He'll cry for food or ask for things he can't have (peanut butter was one of his favorites), and gets mad when I offer him something else. I guess it'll just take a lot of trial and error ( and wasting food) to figure out what he'll eat.

On another note, how long should a toddler take to eat (without distractions)? My son takes about 45 minutes per meal and probably 20-30 minutes for a small snack and he's not even eating that much. Is this normal? I know I can't rush him, but it's really hard when you're busy. Our other 2 kids never ate this slow. I guess I need to learn patience. :)

Share this post


Link to post
Share on other sites
I will check out that website, thank you! And thanks for the prayers, too!

I think my son is too picky to begin with, and with fewer choices, I just feel like I'm running out of options. :o

Thanks for the ideas though. Sorry about your son being allergic to so many things, but glad that it sounds like you guys are adapting well. I figured by talking to people here, we will get used to it, but it's so overwhelming at first. He'll cry for food or ask for things he can't have (peanut butter was one of his favorites), and gets mad when I offer him something else. I guess it'll just take a lot of trial and error ( and wasting food) to figure out what he'll eat.

On another note, how long should a toddler take to eat (without distractions)? My son takes about 45 minutes per meal and probably 20-30 minutes for a small snack and he's not even eating that much. Is this normal? I know I can't rush him, but it's really hard when you're busy. Our other 2 kids never ate this slow. I guess I need to learn patience. :)

My son's been a slow eater since the day he was born. Even before leaving the hospital he was labeled as a "lazy, insufficient sucker." I was like, "great, they're already labeling him...."

Maybe he's just enjoying his food, or easily distracted. With my son I set him at a little tikes table in the living room and just keep reminding him to eat his food. If he starts playing with it I put it up. He eats well at the next meal. I don't force the issue with him. But I have time to let him graze. You sound like a very busy person! I don't know what you could do.

BTW, a child shouldn't have peanut butter until they are 3 years old anyway. Not just how allergenic it is, but risk of aspirating it is dangerous. If he just turned 2 how young was he when he was first eating it?

Share this post


Link to post
Share on other sites
My son's been a slow eater since the day he was born. Even before leaving the hospital he was labeled as a "lazy, insufficient sucker." I was like, "great, they're already labeling him...."

Maybe he's just enjoying his food, or easily distracted. With my son I set him at a little tikes table in the living room and just keep reminding him to eat his food. If he starts playing with it I put it up. He eats well at the next meal. I don't force the issue with him. But I have time to let him graze. You sound like a very busy person! I don't know what you could do.

BTW, a child shouldn't have peanut butter until they are 3 years old anyway. Not just how allergenic it is, but risk of aspirating it is dangerous. If he just turned 2 how young was he when he was first eating it?

I never heard that you should wait until they're 3 to have peanut butter. I knew about milk, honey, shellfish, choking things like popcorn, hotdogs, raisins, etc., but never heard this one until now. He's been having it for at least 6 months, maybe longer. :unsure: I always spread it extremely thin on bread or crackers, not like I would make it for myself or the older kids. Honestly though, I never knew much about allergies either until his first breakout of hives and I've been gradually learning ever since.

I have often wondered though if his food allergies or any of his problems have anything to do with my diet and meds during pregnancy. I had hyperemesis and was extremely sick from 3 weeks until the day I delivered. I lost over 18 pounds in just a few weeks in the beginning, had countless IV's, a 5 day hospital stay, and then twice a week nurse visits at my home and a PICC line for almost all my fluids for the last 5 months. I was able to hold down food slightly better the last trimester, but only if I couldn't smell it. I literally had to plug my nose while I forced myself to eat, and food was never cooked in our house as smells always set me off. I had a very basic diet and wasn't able to hold down vitamins. I had zofran and I can't remember what else. I hated doing it at the time, but literally thought I was going to die, so it was the lesser of two evils. If I had to do it over again, I would have no choice but to do the same thing, so I don't blame myself at all, but just curious I guess. Any insight on this, anyone??

Share this post


Link to post
Share on other sites

WOW, weird to seet this post. My niece was dx with EE. this past week. She had the scope done do to 4 diff pos Celiac tests. Right after the scope the DR asked my sister if My niece ever complained of her throat hurting or of trouble swallowing. Aparantley during the scope her whole esophogus was white. It didnt show any blunting or signs of Celiac. She was told to just read info and come back in a week. Well a week was up yesterday and when she went back The Dr didnt say wheather it was celiac or not but did put her on the gluten-free diet. Then went on to say dont worry about taking milk out of her diet yet, because gluten is hard enough. She has to go for allergy tests. My sis is taking out as much milk as possiable right now though.

My thought though was that he ( your son) is having trouble swallowing or pain when swallowing and that is why it is taking him so long to eat...? Anyway I hope you get some answers. I just want to back up what the others said about the tests being innacurate in young children. My son had a pos. biopsy first then had some blood work done and the blood work showed no celiac. :huh: I do not trust blood work at all anymore... GL!!

Share this post


Link to post
Share on other sites

If he is really missing peanut butter, there are alternatives out there for his old favorites. You can buy soynut butter, if soy is one he can tolerate. Also, our school serves sunbutter sandwiches, but I don't know where you can find the butter made from sunflower seeds instead of peanuts.

ETA: You can buy it on Amazon, so I'm sure it is available at a lot of places that sell allergy alternatives. Sunbutter is the consistency of peanut butter, with no peanuts or tree nuts. HTH!

Share this post


Link to post
Share on other sites

Hi I'm sorry I'm late on this topic but I'm only a part time poster (too busy with work stuff). I have eosinophilic gastroenteritis. Its more common in children (or at least more diagnosed) so initially I was very frustrated with trying to get info for adults, so you should have a somewhat easier time finding info for kids.

I was diagnosed with Celiac a few years ago and I did improve but never fully and then started to get a bit worse... and I knew I was totally gluten-free. So last Feb. I went in for an endo and they took biopsies and found I also have EG.

I went thru allergy testing and was found to be allergic to a ton of foods and also have allergies to enviromental stuff (mold, pollen etc.) I'd be happy to answer any questions you might have, I'm no expert and its an issue that is just getting more diagnosis therefore more info is out there about it. But I'd be happy to help in any way I can.

Susan

Share this post


Link to post
Share on other sites
I never heard that you should wait until they're 3 to have peanut butter. I knew about milk, honey, shellfish, choking things like popcorn, hotdogs, raisins, etc., but never heard this one until now. He's been having it for at least 6 months, maybe longer. :unsure: I always spread it extremely thin on bread or crackers, not like I would make it for myself or the older kids. Honestly though, I never knew much about allergies either until his first breakout of hives and I've been gradually learning ever since.

I have often wondered though if his food allergies or any of his problems have anything to do with my diet and meds during pregnancy. I had hyperemesis and was extremely sick from 3 weeks until the day I delivered. I lost over 18 pounds in just a few weeks in the beginning, had countless IV's, a 5 day hospital stay, and then twice a week nurse visits at my home and a PICC line for almost all my fluids for the last 5 months. I was able to hold down food slightly better the last trimester, but only if I couldn't smell it. I literally had to plug my nose while I forced myself to eat, and food was never cooked in our house as smells always set me off. I had a very basic diet and wasn't able to hold down vitamins. I had zofran and I can't remember what else. I hated doing it at the time, but literally thought I was going to die, so it was the lesser of two evils. If I had to do it over again, I would have no choice but to do the same thing, so I don't blame myself at all, but just curious I guess. Any insight on this, anyone??

I was very sick my whole pregnancy too. I barfed every day and ended up with preeclempsia too.

My sons gastroenterologist at children's told me to hold off on introducing the more allergenic food into my sons diet, and she added that peanuts should not be introduced to any child's diet until at least 3. Not only because it's so allergenic, but because they can inhale the peanuts or peanut butter and it will stick to their lungs and they can not cough it out. Kind of scary to think about! Maybe I just had an extra warning because my son had dysphagia problems.

Share this post


Link to post
Share on other sites
WOW, weird to seet this post. My niece was dx with EE. this past week. She had the scope done do to 4 diff pos Celiac tests. Right after the scope the DR asked my sister if My niece ever complained of her throat hurting or of trouble swallowing. Aparantley during the scope her whole esophogus was white. It didnt show any blunting or signs of Celiac. She was told to just read info and come back in a week. Well a week was up yesterday and when she went back The Dr didnt say wheather it was celiac or not but did put her on the gluten-free diet. Then went on to say dont worry about taking milk out of her diet yet, because gluten is hard enough. She has to go for allergy tests. My sis is taking out as much milk as possiable right now though.

My thought though was that he ( your son) is having trouble swallowing or pain when swallowing and that is why it is taking him so long to eat...? Anyway I hope you get some answers. I just want to back up what the others said about the tests being innacurate in young children. My son had a pos. biopsy first then had some blood work done and the blood work showed no celiac. :huh: I do not trust blood work at all anymore... GL!!

Isn't it strange how once you hear about something new, it starts popping up everywhere? Maybe we just never noticed it before.

My son often times puts his hand in his mouth and looks like he's trying to scratch his tongue or something and says "spicy." I mentioned this to the allergy dr. way back when, thinking it was allergy related and maybe his tongue was itching or swelling, but I wonder now if it was his throat hurting and he didn't know how to communicate it. Anyways, thanks for sharing your story. It's nice sometimes just to hear that others have been there before.

Share this post


Link to post
Share on other sites

My 3 year old went thru a endoscopy for Celiac and I was told his stomach looked great no signs of celiac however his throat was extremly inflamed and the biopsy confirmed no signs of celiac but he has allergy cells in his esophogus and they said he has something esophagitis, they ran a RAST test which came back negative and said to keep him on prevacid twice daily and to call them in 2 weeks, i took this as them thinking I was crazy about his heartburn/indigestion issues so I didn't call back. But about 2 months ago my little man got a rash around his mouth that will not go away and we think is allergy related so my pediatrician sent us to an allergist which we go see on monday. Now however I am thinking the GI doc said my son has this Eosinophillic esophogitis and since I didn't write it down Im not sure. Now I feel bad for not following thru and calling them back in the 2 weeks I was supposed to, the prevacid is definatly not working and his indigestion is getting worse but I thought they were just saying to call them back just because thats what they tell everyone and was a way to get rid of these crazy parents. I now feel terrible so hopefully I can get to the bottom of it on Monday and find out what to do. See when the GI called and explained the biopsy result she explained about elimination diet and and how difficult it will be to find the trigger or triggers and then sent us for RAST testing when it came back negative and she said just to try the prevacid i felt like they were dropping us. Now I think this was to see if the easy fix would work and then we would get into the hard stuff of eliminations and such but I dropped the ball. I feel terrible! I will call the GI doc first thing Monday AM as well as his ped and see what to do, and hopefully the allergist appt on monday will go well.

Anyway, Thanks for this thread without it I would never have realized!

Share this post


Link to post
Share on other sites
Guest nini

my daughter has always been a VERY SLOW eater... to this day she is so slow and it drives us absolutely nuts... but when I asked the ped. about it, she said that it's actually better on digestion if we eat more slowly, chew our food more thoroughly and allow plenty of time in between bites for our food to move down the esophagus.

as far as being a picky eater goes, she was VERY picky before going gluten-free, but now that she's been gluten-free for 3 years, she is much more adventurous about what she will eat. I think that she was so picky about eating because eating always made her tummy hurt. (or she broke out in hives)

Share this post


Link to post
Share on other sites
My 3 year old went thru a endoscopy for Celiac and I was told his stomach looked great no signs of celiac however his throat was extremly inflamed and the biopsy confirmed no signs of celiac but he has allergy cells in his esophogus and they said he has something esophagitis, they ran a RAST test which came back negative and said to keep him on prevacid twice daily and to call them in 2 weeks, i took this as them thinking I was crazy about his heartburn/indigestion issues so I didn't call back. But about 2 months ago my little man got a rash around his mouth that will not go away and we think is allergy related so my pediatrician sent us to an allergist which we go see on monday. Now however I am thinking the GI doc said my son has this Eosinophillic esophogitis and since I didn't write it down Im not sure. Now I feel bad for not following thru and calling them back in the 2 weeks I was supposed to, the prevacid is definatly not working and his indigestion is getting worse but I thought they were just saying to call them back just because thats what they tell everyone and was a way to get rid of these crazy parents. I now feel terrible so hopefully I can get to the bottom of it on Monday and find out what to do. See when the GI called and explained the biopsy result she explained about elimination diet and and how difficult it will be to find the trigger or triggers and then sent us for RAST testing when it came back negative and she said just to try the prevacid i felt like they were dropping us. Now I think this was to see if the easy fix would work and then we would get into the hard stuff of eliminations and such but I dropped the ball. I feel terrible! I will call the GI doc first thing Monday AM as well as his ped and see what to do, and hopefully the allergist appt on monday will go well.

Anyway, Thanks for this thread without it I would never have realized!

It sure sounds like the same thing and the dr. put my son on prevacid also. In my on-going reading about EE, I think I sw somewhere that it's allergy related and can be helped by taking these items out of the diet; however, environmental allergies can do it, too. What things was your child tested for? Don't feel terrible....it sounds like you did exactly what you thought you were supposed to do and I'm glad this thread is bringing it up again for you guys. Keep us posted on how things go on Monday. Good luck!

Share this post


Link to post
Share on other sites
my daughter has always been a VERY SLOW eater... to this day she is so slow and it drives us absolutely nuts... but when I asked the ped. about it, she said that it's actually better on digestion if we eat more slowly, chew our food more thoroughly and allow plenty of time in between bites for our food to move down the esophagus.

as far as being a picky eater goes, she was VERY picky before going gluten-free, but now that she's been gluten-free for 3 years, she is much more adventurous about what she will eat. I think that she was so picky about eating because eating always made her tummy hurt. (or she broke out in hives)

I am very anxious to see the difference once going gluten free...it's nice to hear what a difference it made for your daughter!

I kinda wondered about the pickiness being related to him knowing what's best for him. IT's just so hard to tell when they're too young to tell you.

As far as being a slow eater, I timed him this morning. It took 50 minutes, but he ate 1/2 bagel and 1/2 cup of peaches, which is a huge meal for him, so I was happy. What's frustrating is when he takes this long to eat 1 ritz cracker. I'm not kidding...he takes the tiniest little mouse-size bites. He's really not distracted that easily during mealtime/snacktime so I don't think this is the issue. He takes tiny bites and chews for a really long time.

I stay at home with the kids, but we have one car so I drive my husband round trip twice each day to work (1 1/2 hours each way) so I can have the car for dr. appt's and emergencies as our little one's had numerous asthma related ER visits. Plus, the other 2 kids are 8 and 10 and involved in extra-curricular activities, so our time is very important and it's hard to get anything else done. I've learned to bring food everywhere we're going to so he can get extra calories. (Maybe this will make it easier once he goes gluten-free since I'm already used to packing everything for him. :) )

I always remind myself though that some people have it a lot worse and we're thankful for what we have.

Share this post


Link to post
Share on other sites
It sure sounds like the same thing and the dr. put my son on prevacid also. In my on-going reading about EE, I think I sw somewhere that it's allergy related and can be helped by taking these items out of the diet; however, environmental allergies can do it, too. What things was your child tested for? Don't feel terrible....it sounds like you did exactly what you thought you were supposed to do and I'm glad this thread is bringing it up again for you guys. Keep us posted on how things go on Monday. Good luck!

The Rast Test is a blood test that only test for the 7 major allergens however the GI told us that they are very inacurate and thats why the elimination diet will have to come into effect but then when the RAST test came back negative the elimination diet was not mentioned nor was the fact that she had already told us that you can't rely on the RAST test alone, she only said just do the prevacide and call in 2 weeks to see if it is working, which I took as a blow off. Hopefully the Allergist on monday will set something up for a skin test which I am going to hate putting him thru but if we can get rid of his indegestion/heartburn it will be worth it in the long run! What symtoms does your child have? Mine the main issue is the chronic(even on prevacid)heartburn/indegestion, rash around the mouth, when he cries he vomits, his throat is always "itchey" and when he eats he hits himself on the side of his head, or rubs his ear or sticks his fingers in his ear due to the "itcheys". And rarley do we have a week with no cough!

Share this post


Link to post
Share on other sites
The Rast Test is a blood test that only test for the 7 major allergens however the GI told us that they are very inacurate and thats why the elimination diet will have to come into effect but then when the RAST test came back negative the elimination diet was not mentioned nor was the fact that she had already told us that you can't rely on the RAST test alone, she only said just do the prevacide and call in 2 weeks to see if it is working, which I took as a blow off. Hopefully the Allergist on monday will set something up for a skin test which I am going to hate putting him thru but if we can get rid of his indegestion/heartburn it will be worth it in the long run! What symtoms does your child have? Mine the main issue is the chronic(even on prevacid)heartburn/indegestion, rash around the mouth, when he cries he vomits, his throat is always "itchey" and when he eats he hits himself on the side of his head, or rubs his ear or sticks his fingers in his ear due to the "itcheys". And rarley do we have a week with no cough!

My son's symptoms (celiac, EE, neither, both????) ...failure to thrive, really bad constipation for 1 1/2 years (only going every 3-5 days), with 2 bouts of diahrrea that lasted about 3 weeks each, hives every day since we introduced solids (these have subsided quite a bit since starting on zyrtec though), irritable, walked at 17 1/2 months (not sure if this has anything to do with any of this or if it was just normal for him), asthma/RAD (several ER visits, daily maintenance steroids, and an overnight hospitalization so far), many vomiting episodes, chronic sinus problems, bloody noses several times per week, pulling on his tongue saying "spicy" ???, lots of coughing, gagging, wheezing, and choking (he's 2 and I still cut everything up into really tiny pieces), too many eye infections to count (always happens during bad sinus problems), he's allergic to cats, dogs, milk, eggs, peanuts and tree nuts so far. WE are doing more testing on Monday, so will probably be addding more to this list. He seems to sleep a lot, too (11 hours at night and I wake him up at least half the time for naps at the 3-4 hour point. He does rub his ears and poke at them a lot, but doesn't get ear infections that often...maybe it's the itchey's like you mentioned???? Never really thought of it before. I did take him to the dr.'s plenty of times saying I thought he had an ear infection because he was playing with his ear so much. I'm probably forgetting something here, but when reading this, makes it looka lot worse than it seems. He does seem happy and healthy for the most part and does all normal 2 year old stuff.

Share this post


Link to post
Share on other sites

Because peanuts are one of the 8 main allergens, many doctors do not recommend that young children eat them. I have heard both ages 2 and 3 to start introducing.

this one says 3: http://allergies.about.com/cs/children/a/aa041999.htm

this presents a different side:http://www.usatoday.com/news/health/2006-03-19-allergies-cover_x.htm

Share this post


Link to post
Share on other sites
If he is really missing peanut butter, there are alternatives out there for his old favorites. You can buy soynut butter, if soy is one he can tolerate. Also, our school serves sunbutter sandwiches, but I don't know where you can find the butter made from sunflower seeds instead of peanuts.

ETA: You can buy it on Amazon, so I'm sure it is available at a lot of places that sell allergy alternatives. Sunbutter is the consistency of peanut butter, with no peanuts or tree nuts. HTH!

I buy sunbutter at Cub Foods, so it's pretty common. If I eat a scoop of it on its own I can tell a

*slight* taste difference, but you'd never know it wasn't peanut butter if you put it in a sandwich. Soynut butter is ok, but I think it does taste different. It tastes just like soynuts, which makes sense, but I much prefer my sunbutter.

I hope you figure out your son's allergies soon. Good luck.

Share this post


Link to post
Share on other sites
My son's symptoms (celiac, EE, neither, both????) ...failure to thrive, really bad constipation for 1 1/2 years (only going every 3-5 days), with 2 bouts of diahrrea that lasted about 3 weeks each, hives every day since we introduced solids (these have subsided quite a bit since starting on zyrtec though), irritable, walked at 17 1/2 months (not sure if this has anything to do with any of this or if it was just normal for him), asthma/RAD (several ER visits, daily maintenance steroids, and an overnight hospitalization so far), many vomiting episodes, chronic sinus problems, bloody noses several times per week, pulling on his tongue saying "spicy" ???, lots of coughing, gagging, wheezing, and choking (he's 2 and I still cut everything up into really tiny pieces), too many eye infections to count (always happens during bad sinus problems), he's allergic to cats, dogs, milk, eggs, peanuts and tree nuts so far. WE are doing more testing on Monday, so will probably be addding more to this list. He seems to sleep a lot, too (11 hours at night and I wake him up at least half the time for naps at the 3-4 hour point. He does rub his ears and poke at them a lot, but doesn't get ear infections that often...maybe it's the itchey's like you mentioned???? Never really thought of it before. I did take him to the dr.'s plenty of times saying I thought he had an ear infection because he was playing with his ear so much. I'm probably forgetting something here, but when reading this, makes it looka lot worse than it seems. He does seem happy and healthy for the most part and does all normal 2 year old stuff.

Wow, you really have your hands full, it breaks your heart to see them uncomfortabe and the worst part is not having a quick fix like Motrin or something! Luckily we don't have that many issues but things are not getting better only worse, however to an outside person who meets my son he is perfectly normal noone notices anything, like yours he his a happy kid. Mine is just living with it doesn't really seem to faze him that much anymore, he will be talking to you and stop to take a hard swallow followed by a few more but then he moves on. My son also enjoys his sleep at 3 1/2 he even asks when its nap time or to go to bed early, he also complains that his legs hurt him alot usually once a day, not sure what that is about.

Share this post


Link to post
Share on other sites

We had no family history of food allergies (that we knew of) whatsoever prior to this. I knew very little about allergies. I was recently diagnosed with asthma and had excema as a child, but never even thought about holding off on allergenic foods. Problems with him started as soon as we introduced solids, but the pediatrician never suggested seeing an allergist and I certainly didn't think of it. I just gave him benadryl for the hives and kept going in to get checked for sinus infections. It wasn't until he was 13 months, that I started realizing that we probably had a bigger problem. This is when he had his first serious asthma attack. It took our pediatrician and 3 other doctors before we were told we needed to see a specialist. I just always saw my regular doctor for everything and never went to a specialist myself, so It just never even dawned on me. Boy have I learned a lot in the last year and a half with all his issues!

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...