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azmom3

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About azmom3

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  1. My son was diagnosed with EE 2 months ago when he was 26 months old. He did not have elevated eosinophils in his blood and his esophagus looked good during the endoscopy, (other than GERD damage), but the pathologist found way too many eosinophils in his esophagus when reading the slides. If prevacid is NOT working, that is a big sign that it could be EE. My son is still on 5 different medications to help control some of his symptoms and he has been on an elemental formula only (no food) since he was diagnosed. Going through the endoscopy was actually very quick and easy. My son is a different kid now...soooo happy and full of energy, hardly ever gets hives (used to have 100's), and is finally starting to gain weight. Although it's never easy to have a procedure like this done on your child, it is the BEST decision we could have made. I hate to think of what he'd be like if we had not started to treat this.
  2. PM me and ask any questions you want. I'd be happy to help. I just don't check this site as regularly now. The best information I have found so far is at www.apfed.org. It's a website dedicated to eosinophilic disorders. Also, Cincinatti's Children's Hospital has an eosinophilic center there. They are the leading researchers on this. Our son is on a no foods diet, just an elemental formula called elecare, for a total of 12 weeks. It gives him all the nutrition he needs. We are in week 7 and he is gaining weight finally, but most importantly, he is the happiest adn healthiest I've ever seen him. Most people thought he was "normal" before because other than being small for his age, there's nothing glaringly wrong from the outside, but his insides were suffering. I KNEW something wasn't right, just didn't know exactly what. With eosinophilic disorders, each individual is treated differently. There are many different symptoms, but the main ones (and many people only have one of these) are vomiting, diahrrea, failure to thrive, abdominal, chest, throat pain (which for a baby might be irritable, fussy, clingy, not sleeping or eating well, etc. since they can't verbalize the discomfort.) Many EE kids also have multiple food allergies, but not all do. Some don't have any. It can be triggered by environmental things as well. My son's symptoms were failure to thrive, (still not on the growth chart, but getting closer), vomiting ( in spurts, not all the time), constipation (going every 4-5 days), chronic hives (anywhere from a few to hundreds almost every single day), asthma, eczema, and chronic sinus and eye infections. He's allergic to most everything we've tested him for (environmental, seasonal, and food), including apples, rice and bananas and things like that. There are many people that have discovered they had this by only having one of these symptoms though and others who are much worse off than we are. It really varies so much and that it why everyone is treated so differently. My son is on about 5 different medications right now, but I'm hoping to eventually be able to wean him off some of them. It is more common to have EE if you have a history of any type of allergy in your family...asthma, eczema, environmental or food allergies, etc. Most have also been suspected of celiac and/or cystic fibrosis first as there is still so little known about these disorders. Please let me know what specific questions you may have also. Like I said, I'd be happy to help. So many people, including people from this site have helped us so much along the way. I hope that whether it's this or something else, you are able to get answers soon. The waiting is by far the hardest part. Good luck!
  3. Please also read up on eosinophilic esophagitis or other eosinophilic disorders. My son's high IgG was what led them to take biopsies and diagnose him with this after over a year of problems.
  4. You're describing my oldest son when he was a baby. He projectile vomited after just about every feeding. We used bath towels instead of burp cloths and it would shoot out across the room. I breastfed exclusively for only 10 days, then started supplementing because he would scream non-stop, vomit what he ate, fussy all day, etc. We supplemented until about 2 months, then went formula only. We thickened his bottles with rice cereal. He would literally guzzle them down and start screaming again, projectile vomit, etc. We went through several different formulas ending up with Nutramigen. Went to numerous dr.'s. Every one treated me like I was a first time mom (which I was) being overprotective of him. He had chronic ear infections and asthma, too. Tonsils, adnoids, and tubes out at 4 1/2, then nothing until recently. He's now 10 1/2 and we are awaiting our first visit with the GI dr. after having abnormal bloodwork for celiac. I had never even heard of celiac until about 7 months ago. When they do the endoscopy, they will also be checking for EOS disorders as well, since our youngest was just diagnosed with eosinophilic esophagitis. You might want to read up on symptoms of this as well. It might sound like your child when you read symptoms and stories. BTW, my once chubby, healthy-looking (but not acting) baby is now a very pale, thin, sick 10 1/2 year old. I wish I knew to look for all this then. Good luck!
  5. A few things I forgot to mention. First of all, celiac is much more likely as it occurs in 1/133 people. EE is fairly rare (1/10,000); however some have called it a mini-epidemic as it's being diagnosed a lot more often over the past 10 years. Secondly, most doctors have never even heard of eosinophilic esophagitis and wouldn't even know to look for it, so it's very possibly that when your son had his biopsies that they never even looked for this. My son's pictures after the endoscopy looked perfectly normal, but when the slides were viewed, specifically looking for eosinophils, they found the problem. It's important to find a dr. who is familiar with it. Our allergist is the first one who ever mentioned that word to us. Speaking of allergies, not all EE kids have food allergies, but most of them have many. That was one indication that pointed us in this direction. He reacted to almost every single thing we gave him...even rice. This is not however considered a main symptom. The main symptoms are vomiting, diahrrea, failure to thrive (my son just hit 22 pounds at 27 months), and abdominal pain (which can be disguised as irritability/clinginess in younger children). Not all of these are present in all EE kids. As far as the constipation, have you tried miralax? I know a lot of people that have had success with that and it has worked wonders for us. I think the gluten-free diet is the best thing you can do if you think it's celiac, regardless of what any test or dr. says. I guess I'm just trying to point out another possibility if your gut is telling you it might be something more or if you don't see the results you're looking for. Again, good luck! You're doing the right thing by asking questions on this board. I learned so much (and am still learning) from everyone here. I have found that you take all the information, go with your mommy instinct and do what seems right for you and your child.
  6. The diet should give you better answers than any test, but it may take a little time for some of the symptoms to improve. Also, you mentioned GERD...is he taking medication for this? If so, has it helped? If he is taking medication and it's not improving the symptoms and/or you don't get the results you're looking for with the gluten-free diet, please also look into eosinophilic esophagitis as a possibility. Your child's symptoms match it to a tee, unless GERD medication IS working. It is estimated that up to 10% of kids who have true GERD, actually have EE. Most kids with eosinophilic esophagitis are first evaluated for celiac. During the endoscopy, the GI doctor can check for both at the same time if they suspect it. I'm just curious if your dr. mentioned this as a possibility. If not, with those symptoms and the fact that your other children also have GERD, I would highly recommend getting a second opinion from a dr. who is familiar with this kind of disorder. My 2 year old was just recently diagnosed and I'd be happy to answer any questions you may have. In the meantime, you might want to read up on it yourself and see if it sounds like your son. Good luck!
  7. The diet should give you better answers than any test, but it may take a little time for some of the symptoms to improve. Also, you mentioned GERD...is he taking medication for this? If so, has it helped? If he is taking medication and it's not improving the symptoms and/or you don't get the results you're looking for with the gluten-free diet, please also look into eosinophilic esophagitis as a possibility. Your child's symptoms match it to a tee, unless GERD medication IS working. It is estimated that up to 10% of kids who have true GERD, actually have EE. Most kids with eosinophilic esophagitis are first evaluated for celiac. During the endoscopy, the GI doctor can check for both at the same time if they suspect it. I'm just curious if your dr. mentioned this as a possibility. If not, with those symptoms and the fact that your other children also have GERD, I would highly recommend getting a second opinion from a dr. who is familiar with this kind of disorder. My 2 year old was just recently diagnosed and I'd be happy to answer any questions you may have. In the meantime, you might want to read up on it yourself and see if it sounds like your son. Good luck!
  8. How did you find out you're IgG delayed allergic? And what exactly does that mean? That you react a couple days later instead of within hours? We had SPT and RAST for our older son and both came back positive but on the lower side. Our daughter just had RAST and was class 3 to wheat. Thanks for your help!
  9. You'd think I'd know this by now, but is it possible to have celiac disease and not be allergic to wheat? I understand celiac disease is an autoimmune disease, not an allergy and I realize you can be allergic to wheat and not have celiacs, but I'm curious if all celiacs are also allergic to wheat if tested by SPT or RAST or if their chances of being allergic are the same as everyone elses. I know they can't eat it regardless, but was wondering. Two of my kids have tested positive for wheat and also have elevated IgG, but the other numbers are normal. We will be going the biopsy route, but the waiting is killing me and I'm trying to think of every possible scenario here.
  10. This is how I understand it, too. But from what I understand, a person may see that wheat is a trigger, but not all gluten, if that makes sense? They could find out eventually that all gluten triggers EOS as well, but I don't think it automatically means that....again, this is just the way that I understand it so far.
  11. Sorry I'm just getting back to you on this. I talked to my friend again about the double-jointed / miscarriage correlation. She said that double jointed people have thicker blood adn as the pregnancies moved along, the blood would get too thick which would result in losing the baby. They put her on a blood thinner and next pregancy (after I think 7 losses in a row) was a happy, healthy little girl. She said that any high risk pregnancy dr. should know about this and how to treat it. Like I said, much more likely it's the celiac link, but if it means a baby, in my opinion, just about anything is worth looking into. Good luck!
  12. Please look up the symptoms for eosinophilic esophagitis. It mimics GERD, but does not respond to medication. Other symptoms include failure to thrive, diahrrea, vomiting, etc. Most people diagnosed were originally seen for possible celiac and/or GERD.
  13. Thanks Ursula! What I don't understand though is that it's not just food allergy. It can be from environmental allergies as well. Plus, from what I understand, you can have non-allergy foods trigger your EE and allergic foods not trigger it. What we've been told is to start on the elemental formula only for a minimum of 6 weeks to give the esophagus time to heal, then rescope. If there are still eosinophils present, we have to either go formula only for a longer period of time or look at environmental things that may be triggering it. If no eosinophils are present, we begin re-introducing foods at a very slow pace...I believe it's 4 at a time, starting from least likely to trigger and going up the line that way (and at no time including any foods that have already showed to be allergic...extensive food allergy testing is done to immediately eliminate these foods). The four foods are the only foods you are allowed until your next scope so you can see if they were triggers or not. I have read story after story of people having their EOS triggered by foods that they never showed or felt an allergic reaction to prior to that. Also, other people, several years down the line, who tried re-introducing mild allergy foods back in, and finding out they do not trigger the EOS. I don't doubt that they're are probably people who have both, but I'm just not sold (yet?) that EE is BECAUSE of celiac. I realize celiacs often times have other allergies/intolerances/autoimmune disorders. I also know that people with EOS disorders often have lots of allergies. I think too little is known about EOS disorders right now though to say one way or another. The leading research is being done in Cincinatti. There's also another eosinophilic center at CHOP (Children's Hospital of Philadelphia). I've been trying to read up as much as possible, but I'm still far from an expert on the subject.
  14. He's 10 1/2. What you said about low IgA is exactly how our dr's described it...said it would be closer to o.
  15. CAn you explain this to me or give me some links that explain the connection as I have been unable to find anything showing this. I'm not saying it's NOT connected either...I would just like something to have the confidence that it is and/or be able to bring to my doctors. Our allergist is phenomenal. We like him and trust him and I would feel very comfortable bringing any info into him. We will be doing the gluten-free thing regardless, so that I'm sure will be proof in itself, but I also realize it can take time to see results, so if there's info you have now, I'd appreciate it. Thanks!