Jump to content
  • Sign Up
0
SJD

Son With 23 Food Allergies/daughter With Possible Celiac - Help!

Rate this topic

Recommended Posts

I know this is quite lengthy, but I would really appreciate some input. I'm curious as to your opinion on my two children. About a year and a half ago my oldest son (now 10 years old)was diagnosed with ADHD and was put into special education at school. I chose not to medicate him and instead did a lot of research. I finally came across a website that said "do not accept a diagnosis of ADHD/ADD without first ruling out these things". It had a long list of things and allergies was one of them. I found an ENT who also specialized with allergies and I brought the list to her. I asked if she'd be willing to go through the list with me and rule out each one, she did. After doing several blood tests, checking for diabetes, thyroid, lymes, lead, etc., she then did allergy testing on him. After a couple different visits my son was diagnosed with having numerous allergies, both environmental and food. Several of his allergies were in the moderate to severe range, which confused me because I'd never seen a "reaction" from him. Well, I took this very seriously and I immediately eliminate ALL of his food allergens and then he started on sublingual antigen drops (a drug-free all natural alternative to allergy shots) for his environmental allergies. After a month of complete elimination I then introduced one of the foods once a day to his diet, while documenting everything he ate and his behaviors. Then I would take the food away, sometimes right away if I saw immediate results, then I'd give him a few days to get it all out of his system before introducing the next food. I kept very good records and with the exception of one or two, I was able to see exactly what each food does to him. Most of the foods caused behavioral changes, ranging from emotional outbursts, crying, anger, inability to stay on task or focus, nervousness, biting nails/picking nose/chewing on things, etc. A few actually caused hives and the carrots caused an anyphylactic episode. Eliminating all of the foods he is allergic to has been very difficult and although it seemed impossible, it is indeed possible and I've been doing it for almost 12 full months. To give you an idea of how hard this is, here is my son's list of allergies:

Foods that he's allergic to:

Milk, wheat, corn, soy, peanut, almond, cane sugar, beet sugar, malt, apples, oranges, peaches, pears, strawberries, lemon, kiwi, lettuce, cauliflower, green peas, carrots, navy/white beans, red food color, and orange food color.

Environmental allergies include:

Trees (especially birch and oak), ragweed, grass, weeds, house dust, dust mites, 14 different types of molds, cats, and dogs.

The doctor that we've been working with was only treating environmental allergies with the drops, but since having my son for a patient she actually started doing the food drops as well. My son has been on the drops for his foods since last August and since then he has been able to have milk back into his diet, as well as oranges, and sugar but only occasionally. He is still not able to have an abundance of those things yet, but I am hopeful that someday he will. Since eliminating these foods my son has been doing excellent in school and at home. He does NOT have ADHD and is currently only in one special ed class, and at the end of this month he will be transferred out of that class and brought completely into the regular education classroom!! :)

This is a struggle for us, however, because I am not able to send him to church summer camp, boy scout camp, sleepovers, etc, because no one would be able to feed him. I hate to think that he'll never be able to lead a "normal" life and have all those things. I don't know how else to help him. I wish I understood why he has so many allergies, there must be a reason isn't there??

Well, then there's my 8 year old daughter. She has struggled with chronic constipation since birth, she has had numerous bacterial infections and several hospitalizations. She suffered from ezcema since birth as well. When she was little I got her to an allergist who identified her as being allergic to several molds, dust, dust mites, asian beetles, cats, walleye, eggs, wheat, milk and peanut. She was treated for 3 years and her skin cleared up almost completely and now her current allergies are only mold, dust mites, asian beetles, and cats. Her normal reaction is hives and ezcema, but her skin is MUCH better than it used to be. All that was great, but her constipation, fatigue, and depressed moods continued. I finally did a lot of research on my own. I highly suspected Celiac and so I decided to experiment with eliminating gluten. I could not believe how much of a difference only a couple days made. Then, however, I realized that I should not have eliminated the gluten without first having her tested. So, I started giving her gluten again and set her up to see a GI specialist. The doctor did blood tests, an upper GI, flexible sigmoidoscopy and something else, but said NO she does not have celiac. I was frustrated and since I knew the gluten was the problem I decided that after the last test I just eliminated gluten all together and never brought her back to the GI doctor. Within two days I had a brand new girl!! She was having normal, soft bowel movements every day with NO problems. She was excelling in school, I actually had teachers calling me saying how much they are noticing a change. She had energy, she didn't need to sleep ALL the time. She was not "slow" at doing everything and she was a joy to be around. Best of all she stopped getting sick all the time. She has been gluten free since last April and I feel it's the best thing I ever did for her. I've also realized that I feel much better without gluten as well. I'm not as good at sticking to gluten free diet, but I do my best.

My concern and the concern of one of her doctors is that I have not returned to the GI doctor and told her what I've done. I hate to think that she'll have to be gluten free for life if she really doesn't have to be. I wish she would just get the "label" of celiac so we would know for sure. Does that make sense, or sound horrible of me?? I've been told that there is no way for anyone to ever diagnose her properly now because she has been gluten free, is that right? Is there any way to still find out for sure if she has celiac or is that not important?

I'm a single mom of three and this is all very challenging, but I've proven to a lot of people that it IS doable. I wish my kids could lead "normal" lives where they could go to birthday parties and have birthday parties and school parties and not have to worry about everything. This has been very difficult for my friends and family to understand, as well as my kids' father, but as time goes on they have all seen the changes and don't seem to question me anymore.

I guess I'm curious if any of you have any advice for me as to getting either of my children more medical testing or help elsewhere? Also, do you think there is any hope of my son leading a more "normal" life and ever being free of all of his allergies?

I've done a lot of reading on intestinal health and the "leaky gut syndrome", I can obviously see that affect on my daughter, but do you think my son has GI problems if he has so many allergies? Is there something that I should be doing or a doctor I should be taking him to to figure all this out, or are my children just unlucky? I'm tired, confused, and frustrated and I am doing this all on my own, I guess I'm just looking for any help or advice that anyone can give me.

I am so very appreciative of you taking the time to read my story and I appreciate anything you can offer me. May the Lord bless you always!

Share this post


Link to post
Share on other sites

My goodness, it's no wonder you're tired and confused. You are a superwoman coping with this on your own. I am so proud of you for finding the cause of your son's so-called ADHD and wish that more doctors would explore this angle instead of providing pills to pop to mask the symptoms. Interestingly, gluten is being associated more and more strongly with ADHD also.

I can only offer hunches, informed by anecdotal evidence and some reading and personal experience. I kept developing more and more intolerances to foods after I stopped eating gluten, . I am convinced that it was my leaky gut letting these foods through in a partially digested form into my blood stream that was causing the problem. So I set about healing my gut (and avoiding all the offending foods - which happened to be foods high in lectins (coincidentally?? - probably not, since there are lectins in gluten also). So yes, I do think it is possible that you son has/has had leaky gut syndrome, and it could be a possible cause of his intolerances/allergies to some foods. A lot of the foods on his list are on mine too - corn, soy, wheat, oranges, lemons, green peas, navy beans (in fact all peas and beans); I have recovered the ability to digest milk. I also avoid all nightshades (potatoes and tomatoes, etc.)

It is possible that a lot of your son's behavioral improvement is due to the absence of gluten (which often masks the reactions to other foods too), although I note that the other foods produce behavioral changes too. Are you able to quantify his behavior pre- and post-treatment when the other allergens are introduced? Environmental allergies often go along with gluten intolerance too. My sister undiagnosed but gluten intolerant) is extremely sensitive to food production chemicals and has mainly neuro-type symptoms, and my husband (also celiac - dermatitis herpetiformis) used to experience extreme allergies to trees and grasses before being desensitized. He no longer spends the spring and summer sneezing and with sinus infections..

Your daughter sounds like she is most definitely gluten intolerant. Now a lot of people who do not tolerate gluten do not get that "celiac" label. In fact there are probably more gluten intolerants who are not celiacs than those who are. Doctors have been slow to recognize this, and you will find a couple of threads running on this subject on the forum at the moment. So when it comes to testing for celiac (and yes, you need to be eating gluten for at least a couple of months for the testing to be valid) she could be eating a full gluten diet for six months and still test negative for celiac disease on both the blood tests and biopsy, because she is not the celiac type of gluten intolerant. The celiac tests are looking for a specific gliadin antibody in the blood and for specific damage to the small intestine on biopsy. This is what has been defined as celiac disease and in the past if you didn't have those findings you were told to go away and eat gluten to your heart's content. Many people, however, although they have GI symptoms, do not have that specific damage in their small intestine, or the biopsy fails to find it OR, their body is reacting to gluten in some other fashion. Many people with gluten intolerance have neurological symptoms, many are preliminarily diagnosed with MS or lupus, many of us have RA, eczema, psoriasis, many develop diabetes, hyper/hypothyroidism. There are so many many manifestations of gluten intolerance and lethargy and depression are certainly two of them.

So is it important to find out if either of your children have celiac disease? It is only important insofar as getting the school's cooperation in keeping them safe from gluten - play doh has gluten, for example, cooking things with regular flour, using macaroni in numbers classes, etc. and later on (thinking ahead) opting out of a meal plan in college. Schools need something in writing from a doctor that a child should not be exposed to gluten. So perhaps it would be a good idea to go back to your GI and tell him that you have taken both your children gluten free. He may be prepared to give you a letter based on your daughter's positive response to the diet. I don't know how your allergist would feel about such a letter for your son - that he should avoid gluten, because this is one sensitivity that one does not outgrow. A possibility to help convince your doctor that she should be gluten free would be to have the genetic testing done. Doctors love testing and if your children happen to have the DQ2 or DQ8 gene this increases their probability of having celiac disease rather than gluten sensitivity.

I am not sure how many of your questions I have addressed but I hope this helps a little.

Share this post


Link to post
Share on other sites

I am in awe of you for all you have done for your children.

I cannot add anything to what Mushroom has given you and she is very much one of our experts.

I do hope things get better for you soon.

But you sure do persevere!

Your children are lucky to have such a strong woman for their mother.

Share this post


Link to post
Share on other sites

I commend you for everything that you are doing for your children. It sounds like they both would benefit from being 100% guten free.

Share this post


Link to post
Share on other sites

You are a great mom, keep up the good work.

Try to find a Celiac support group in your area. Soo many celiacs have multiple allergens, you are not alone. Good luck.

Share this post


Link to post
Share on other sites

Eatmeat4good is surely much too flattering. I am no expert, just send along what I have learned which may be true.... :)

Share this post


Link to post
Share on other sites

Wow, thank you to everyone! The compliments mean so much, as I feel so alone in all of this. There are days when I'm almost convinced that I am insane and that all of this is not real and I must be imagining all of these issues! The rest of my friends and family seem to be "normal" compared to us. I hate having to explain why I do the things I do and why I am so "picky" about everything my children eat, drink, touch, and are around. No one I know GETS IT! So THANK YOU for your support and advice! :)Yay I'm not crazy after all! ;)

Mushroom - As for your question about my son's environmental allergies. Yes, actually his allergies last summer weren't as severe as usual. He had started on the allergy drops, but all his life I would have to start him on Zyrtec by March and he would take it daily until the first freeze in the fall. Even on the Zyrtec his eyes would swell shut, he'd be constantly blowing his nose, itching his nose and eyes, and be absolutely miserable. Sometimes, if I had just mowed the lawn, his whole face would swell up and become deformed. He never had any anyphylactic reactions, just the swelling and itching and then once he was out of that environment I'd wash his face really good and within the hour the swelling and itching would go away.

Now that you mention it, there was only maybe 2 or 3 episodes that I needed to give him a Zyrtec last year. Other than that, the only thing he took was his drops. I wash the kid's bedding every week and vacuum a lot, and all of the beds and pillows have allergy covers. I also have an allergy spray that I treat the carpets and furniture with every 4-6 months, but he has been MUCH better. That's interesting, I guess I just thought the drops worked really good, but it probably has a lot to do with his diet.

I have to ask, I see that you are citric acid free. How did you determine that? Is there a test for it? I know that citric acid may or may not be from corn, so because of my son's corn allergy he doesn't have it. However, there have been times when I've introduced a juice or canned fruit to him with the only possible interaction being the citric acid and he DOES react. I've often wondered if it's the corn or if he could also be allergic to the acid itself.

I've also tried some cheeses with him, now that he can tolerate milk, and I'm almost certain that he reacts to the annato coloring in certain cheeses. For the most part we just eat goat's cheese (although very expensive), but he does alright with mozzarella or farmer's cheese.

As for my daughter, I'm not aware of any genetic testing that was done. How do I go about having my kids tested to see if they have those genes you were talking about? What type of doctor does those tests? Can that testing be done if they are already gluten free (probably a silly question)?

As for needing to know for sure if my daughter is celiac or not, that's pretty much just my own selfish desire. Noone seems to understand that gluten "intolerant" is a BIG deal, but if I say "celiac disease", then people start to listen. I finally just told the school that she does have Celiac Disease and yes, it made a difference. It's unbelievable how SO many people do not take allergies or intolerances seriously, and it is a constant battle. We live in a small town of about 1000, and in our school district there are 2 preschoolers that are severely allergic to peanuts and it wasn't until then (just last school year) that the school actually became aware of allergies. However, they are ONLY aware of peanut allergies and so many people seem to think that unless you are actually going to stop breathing and possibly die from a reaction, then it's not serious!

About a month and a half ago the guidance counselor gave my son (and the rest of the class) TWO beef sticks!!! Do you have any idea how many things are in a beef stick?! When my son came home and starting having crying tantrums and anger outbursts, I knew something was wrong. When I asked him what he ate, he said "beef sticks, but I asked Mr. S what was in them and he said "BEEF", so I thought it was alright mom". Can you believe that?! I was outraged and I marched right over the school and yes, he really had no idea that there was anything else in the beef stick. He really is that stupid! Well, he knows now and so does the rest of the school. I've made it about as clear as I can that NO ONE is allowed to give my kids anything to eat or drink unless it is personally OK'd by me. ;)

Well, thank you so much again for your support and your advice. I'd really be interested in hearing more about the genetic testing. I could ramble on and on for hours, but I really need to go to bed. :)

Many Blessings to all of you!

Emily

Share this post


Link to post
Share on other sites

There isn't currently a way to test your daughter to see if she is a Celiac for now without introducing gluten, but I wouldn't be surprised to find something in the future that will work.

For example, I've seen a study where they took Celiacs and non-celiacs and injected a little bit of gluten into their mouth - the cheek, I believe. Also did a mouth swab. And then they took measurements of some things that are indicative of an auto-immune response, and the Celiacs all developed this within minutes, while the non-celiacs did not.

If that was something they could do in a research study now, I don't see why it couldn't eventually develop into a test. Or possibly even turn out to be something your doc could work with you on doing when your little one is old enough that the injection or swab wouldn't be traumatic, you know? Something for the future, anyway.

EDIT: and actually, celiac.com just put up an article on a recent study showing non-celiac gluten intolerance:

celiac.com

Re: your son. How knowledgeable about the food industry is your allergist? There are a few of the foods your son has issues with that I know can have some contamination from other allergies of his. I'm sure there are more that I'm unaware of.

We've run into this where we have an issue with one allergen, and it turns out to be in a pesticide, or a spray, or a coating on produce. And when we finally tracked down a source for this produce that DIDN'T use this spray, pesticide, etc.... we found out that the fruit/vegetable wasn't the issue, the contaminant was.

It took a LOT of questions of farmers about their practices and all sorts of fun stuff before we tracked this sort of thing down, though. We have to buy some produce only from certain farmers now if we don't want to react.

As an example that could apply in your case: citrus, apples, and pears almost always have a shellac wax coating that has casein or soy added to it for the texture. It's almost impossible to tell visually, because these fruits make their own natural wax coating, too. And the wax can be on organic produce as well. If your son is very sensitive to soy/dairy, just cutting through the skin of these fruits will contaminate the knife, and that contamination carries through into the flesh of the fruit and could make him react.

I reacted to citrus, but when we hunted down a farm that had uncoated, unwashed citrus, I had no trouble.

As an example of other foods we've run into that might apply to your son:

1) Corn

- can contaminate any organic produce that lies on the ground can get contaminated, as corn meal is now sometimes used as an organic weed preventative and covers the ground that produce can lie on top of.

- corn is in all iodized salt to stabilize the iodine (although if you eliminate iodized salt, you'll want to get an iodine source)

- corn is also commonly used on sprays to help ripen tomatoes

2) wheat

- a common ingredient in soaps, including those that farms may use to wash produce or the machines that process food

- gluten/wheat contaminated oat straw is often used to cover and protect strawberries and contaminates them.

- wheat straw is not uncommon in straw or used as straw in mulches/composting, which may get on any veggies on the ground, like lettuce and cauliflower.

It might be worth looking into different brands of the foods, different processing, different farms - just to see what makes a difference, you know?

Also, has your allergist looked at OAS? I noticed that a number of the produce items your son reacts to are often on the OAS cross-reaction list for allergies to grass, birch, and ragweed, which he's also allergic to, if I read right.

If it's OAS, if the food is cooked, then the reaction should not occur, or would be greatly lessened.

Actually, I just checked wikipedia to double check (not a definitive source, I know, but thought it might do in a pinch), and these are the foods that they mention as cross reacting. Someone can react to just one or two of the foods, not necessarily all.

* Birch pollen: almonds, apples, apricots, avocados, bananas, carrots, celery, cherries, chicory, coriander, fennel, fig, hazelnuts, kiwifruit, nectarines, parsley, parsnips, peaches, pears, peppers, plums, potatoes, prunes, soy, strawberries, wheat; Potential: walnuts

* Grass pollen: fig, melons, tomatoes, oranges

* Possible cross-reactions (to any of the above[including ragweed]): berries (strawberries, blueberries, raspberries, etc), citrus (oranges, lemons, etc), grapes, mango, figs, peanut, pineapple, pomegranates, watermelon

I'm sure there may be others - lists on-line don't always agree as to which foods cross react.

I hope your little one can eat more foods soon. Maybe the above might help add a food or two back into his diet. :-)

Shauna

Share this post


Link to post
Share on other sites

For those of us who are "merely" gluten intolerant, and there are ever so many out there who belittle us for our non-celiac status, it is a difficult task to get people to take us seriously. Until science catches up with what the general gluten intolerant population knows, this will probably continue. By now, at least 50% of the population I would guess have heard the term celiac; how many of these people know it is related to gluten is anyone's guess. So when we talk about gluten intolerance, we get dumb questions such as "Is that, like, sugar?{ So often, like you, when we are in situations where it is important that people understand that we cannot eat gluten we will say we are celiac, just to be taken seriously, not to lie and make out that we have something more important that we actually do,. because gluten intolerance is just as important as celiac.and needs to be treated as such. You are definitely not crazy, and in my book it makes no difference if your children are celiac or gluten intolerant - gluten is just as deadly for them.

All my food intolerances have been identified by trial and error. The citrus problem came about because of my eating too much of it on a leaky gut. We tend to crave those foods that are bad for us and I crave(d) foods with strong flavors (as I used to crave bread). So I did a lot of cooking with lemons, and I was eating several mandarin oranges a day, drinking citrus juices and in general over-doing it, and it just rose up and bit me. I was sure it was the citrus and cut back to almost zero, and then after a long plane flight I relaxed and had a margarita!!! What a mistake! I then experimented with using and not using things with citric acid, not always knowing the source, and found I was better off without it.

You might try your son with some white cheddar cheese or some parmesan and see how he reacts to that because the goat's cheese is very expensive, but good :D I love it.

The genetic testing is a blood test and can be ordered by any doctor, and it has nothing to do with the consumption of gluten :) . In fact, you do not even need a doctor to order it. If you can afford to pay for it yourself rather than through insurance you can order it from Enterolab online. It is done from a stool sample and they can also test for the gliadin antibodies although it is probably too long for those to show up even in a stool sample, and other intolerances (casein, soy, and I'm not sure what else). They can also test for malabsorption through the fecal fat score. If your son or daughter has oily stools which float they would probably have a high fecal fat score which would indicate poor digestion of fats which goes along with the whole gluten syndrome. They also test for genes besides the DQ2 and DQ8 - genes which indicate gluten intolerance rather than celiac disease. The blood test the doctor orders just tests for DQ2 and DQ8. Also bear in mind, since this is a genetically predisposed disease, that if your children have it they received the gene from either you or their father so either one of you could potentially develop the disease.

Shauna has given you some specialized knowledge based on her personal experiences. You can learn a lot from her post.

Just hang in there and know that you are doing what is right for your children. :)

Share this post


Link to post
Share on other sites

I just want to send out some support for what you're doing. My son(12) has an ADHD DX and we've seen improvement since his varoius allergy dx and starting more agressive management. I chose not to medicate him because he was born with one kidney. He has always been in the mainstream classroom. He still has some trouble with concentration and memory and has an IEP. I haven't been able to take it to the level you have quite yet, so I understand what you've done.

I'm still trying to heal myself after 10 years going undx with both diabetes and celiac disease. And just recently re-dx with type 1.5(late onset autoimmune)diabetes. Add in a latex allergy dx(also type 1) not long ago for me. My son and I are a combo of all you posted about your family! I'm the one with 26 food allergies-some permanent, some a revolving door. I tend to become allergic to frequently eaten foods. Still trying to stop that and ditch some. I'm on a very limited diet and working on rotating foods that I'm not yet allergic to so that I don't become allergic to them and hoping that by avoiding some foods long enough, I can stop reacting and get them back. I hear ya about the goat's milk products. I have a casein allergy but have been able to tolerate goat's milk cheese recently. With dairy, I don't only use symptoms to note if I am reacting but it shows up in elevated blood sugar if I react. Maybe you can try sheeps milk things? I recently learned that one of the common dry cheese, like parmesan(pecorino romano maybe?) is made from sheep's milk. That might be more affordable, or at least give more variety. I won't ever go back to cow.

Ds has fewer. He has a HEAVY environmental load that his is taking shots for. He is also latex allergic. I am still trying to mange them all better and suspect that they or other unknown things may be affecting him in ways we don't yet realize. It's quite a process! Our project this month has been latex-free socks and underwear. I found, with myself, and other moms have shared, that latex reactions can cause a feeling of being very uncomfortable in one's own body, that can translate to ADHD like behavior in their kids.

It's hard for my son to understand the restrictions because he doesn't feel all that unwell or notice the difference that much like we do. I hope in time he will have more awareness. I keep trying to educate him as the opportunity arises and teaching him kitchen skills!

Share this post


Link to post
Share on other sites

Thank you again to everyone!

Shauna, I had never heard of OAS before, but I just did a quick online search and I am amazed! I have absolutely no doubt that I myself have it, and chances are my kids do too. For example, I can't eat cantaloupe and bananas. I love them and I will often take a tiny bite just because I crave it, but I instantly get a mouth full of sores. I've never understood it and quite honestly I've never gone to the doctor because I am always more concerned with my kid's health and it seems I'm taking them to the doctor all the time. :)

I am definitely going to get myself an appointment and see what I can find out about myself, so then maybe I can better help my kids!

Thank you for the info!

Mushroom, Thank you for the info on the Enterolab! Again, something I've never heard of, so thank you. I think I'll see if my doctor will perform the tests with my insurance, but if not I'll definitely check this out. Thank you so much for sharing your story with me and all the helpful support and advice! :)

Missy's Mom, Wow, you definitely have your hands full too! I hate to hear all that you are dealing with, but it is very refreshing to know that there are others out there dealing with similar struggles. Thank you!

You are all wonderful Mom's and I thank you so much for your support and advice!! :)

Emily

Share this post


Link to post
Share on other sites

I read the info about your son and ADHD and had to reply! One of the requirements for a diagnosis of ADHD is to rule out everything else (like allergies). It sounds like he was totally misdiagnosed to begin with. As a parent of a child with ADHD - that's upsetting. I'm sorry you had to deal with that.

As for your son and camps/sleepovers - you'd be surprised what you can trust from a camp. I thought the same thing about Chris for overnight camp because of the celiac disease - but they are really good with it all. For sleepovers - just send his own food. Parents would rather that then having to figure out what is okay. Figure out what is going to be served and send something similar.

Your daughter may very well not have celiac disease, but have an bad gluten sensitivity. If going gluten free works - then keep it up. Honestly, all the celiac disease diagnosis does is get you an official diagnosis of something. In school, she can legally have a 504 because it's a recognized disability that doesn't allow her to safetly eat in the school cafeteria (which is a federally funded program and is a requirement). Most schools are very good about giving you all the accomodations of a 504 without the actual 504.

I know this is quite lengthy, but I would really appreciate some input. I'm curious as to your opinion on my two children. About a year and a half ago my oldest son (now 10 years old)was diagnosed with ADHD and was put into special education at school. I chose not to medicate him and instead did a lot of research. I finally came across a website that said "do not accept a diagnosis of ADHD/ADD without first ruling out these things". It had a long list of things and allergies was one of them. I found an ENT who also specialized with allergies and I brought the list to her. I asked if she'd be willing to go through the list with me and rule out each one, she did. After doing several blood tests, checking for diabetes, thyroid, lymes, lead, etc., she then did allergy testing on him. After a couple different visits my son was diagnosed with having numerous allergies, both environmental and food. Several of his allergies were in the moderate to severe range, which confused me because I'd never seen a "reaction" from him. Well, I took this very seriously and I immediately eliminate ALL of his food allergens and then he started on sublingual antigen drops (a drug-free all natural alternative to allergy shots) for his environmental allergies. After a month of complete elimination I then introduced one of the foods once a day to his diet, while documenting everything he ate and his behaviors. Then I would take the food away, sometimes right away if I saw immediate results, then I'd give him a few days to get it all out of his system before introducing the next food. I kept very good records and with the exception of one or two, I was able to see exactly what each food does to him. Most of the foods caused behavioral changes, ranging from emotional outbursts, crying, anger, inability to stay on task or focus, nervousness, biting nails/picking nose/chewing on things, etc. A few actually caused hives and the carrots caused an anyphylactic episode. Eliminating all of the foods he is allergic to has been very difficult and although it seemed impossible, it is indeed possible and I've been doing it for almost 12 full months. To give you an idea of how hard this is, here is my son's list of allergies:

Foods that he's allergic to:

Milk, wheat, corn, soy, peanut, almond, cane sugar, beet sugar, malt, apples, oranges, peaches, pears, strawberries, lemon, kiwi, lettuce, cauliflower, green peas, carrots, navy/white beans, red food color, and orange food color.

Environmental allergies include:

Trees (especially birch and oak), ragweed, grass, weeds, house dust, dust mites, 14 different types of molds, cats, and dogs.

The doctor that we've been working with was only treating environmental allergies with the drops, but since having my son for a patient she actually started doing the food drops as well. My son has been on the drops for his foods since last August and since then he has been able to have milk back into his diet, as well as oranges, and sugar but only occasionally. He is still not able to have an abundance of those things yet, but I am hopeful that someday he will. Since eliminating these foods my son has been doing excellent in school and at home. He does NOT have ADHD and is currently only in one special ed class, and at the end of this month he will be transferred out of that class and brought completely into the regular education classroom!! :)

This is a struggle for us, however, because I am not able to send him to church summer camp, boy scout camp, sleepovers, etc, because no one would be able to feed him. I hate to think that he'll never be able to lead a "normal" life and have all those things. I don't know how else to help him. I wish I understood why he has so many allergies, there must be a reason isn't there??

Well, then there's my 8 year old daughter. She has struggled with chronic constipation since birth, she has had numerous bacterial infections and several hospitalizations. She suffered from ezcema since birth as well. When she was little I got her to an allergist who identified her as being allergic to several molds, dust, dust mites, asian beetles, cats, walleye, eggs, wheat, milk and peanut. She was treated for 3 years and her skin cleared up almost completely and now her current allergies are only mold, dust mites, asian beetles, and cats. Her normal reaction is hives and ezcema, but her skin is MUCH better than it used to be. All that was great, but her constipation, fatigue, and depressed moods continued. I finally did a lot of research on my own. I highly suspected Celiac and so I decided to experiment with eliminating gluten. I could not believe how much of a difference only a couple days made. Then, however, I realized that I should not have eliminated the gluten without first having her tested. So, I started giving her gluten again and set her up to see a GI specialist. The doctor did blood tests, an upper GI, flexible sigmoidoscopy and something else, but said NO she does not have celiac. I was frustrated and since I knew the gluten was the problem I decided that after the last test I just eliminated gluten all together and never brought her back to the GI doctor. Within two days I had a brand new girl!! She was having normal, soft bowel movements every day with NO problems. She was excelling in school, I actually had teachers calling me saying how much they are noticing a change. She had energy, she didn't need to sleep ALL the time. She was not "slow" at doing everything and she was a joy to be around. Best of all she stopped getting sick all the time. She has been gluten free since last April and I feel it's the best thing I ever did for her. I've also realized that I feel much better without gluten as well. I'm not as good at sticking to gluten free diet, but I do my best.

My concern and the concern of one of her doctors is that I have not returned to the GI doctor and told her what I've done. I hate to think that she'll have to be gluten free for life if she really doesn't have to be. I wish she would just get the "label" of celiac so we would know for sure. Does that make sense, or sound horrible of me?? I've been told that there is no way for anyone to ever diagnose her properly now because she has been gluten free, is that right? Is there any way to still find out for sure if she has celiac or is that not important?

I'm a single mom of three and this is all very challenging, but I've proven to a lot of people that it IS doable. I wish my kids could lead "normal" lives where they could go to birthday parties and have birthday parties and school parties and not have to worry about everything. This has been very difficult for my friends and family to understand, as well as my kids' father, but as time goes on they have all seen the changes and don't seem to question me anymore.

I guess I'm curious if any of you have any advice for me as to getting either of my children more medical testing or help elsewhere? Also, do you think there is any hope of my son leading a more "normal" life and ever being free of all of his allergies?

I've done a lot of reading on intestinal health and the "leaky gut syndrome", I can obviously see that affect on my daughter, but do you think my son has GI problems if he has so many allergies? Is there something that I should be doing or a doctor I should be taking him to to figure all this out, or are my children just unlucky? I'm tired, confused, and frustrated and I am doing this all on my own, I guess I'm just looking for any help or advice that anyone can give me.

I am so very appreciative of you taking the time to read my story and I appreciate anything you can offer me. May the Lord bless you always!

Share this post


Link to post
Share on other sites

Well I have to say you are an amazing mom!

Having to deal with the food allergen free diet turns into a full time job.

Don't give up on having your kids do the "normal" kid's stuff they want to do. My son has a boy scout troup that has dealt with food allergies before. One of the parents works as a chef, and was diagnosed with food allergies too.

My daughter's experience with Girl Scouts wasn't as great, but it does boil down to the people you are with and how you handle yourself. Always pack your safe food and keep it basically under lock and key for your kids.

Share this post


Link to post
Share on other sites

Thank you! :)

As far as camps and doing "normal things", I really want him to do them, but we've had a few mishaps that have caused me not to trust others, especially at Cub Scouts. I'm working on it, it's all about educating the adults. It's also really hard for my son to resist temptation when something is offered to him, so I try not to put him in those types of situations. I'm just praying that I can figure out the root cause of his allergies and possibly get him some better treatment to hurry the process along, but I realize that might not happen. My kids are awesome and very strong, they've been through a lot.

Thank you again to all the compliments! Your support and advice is always welcome and very much appreciated.

Share this post


Link to post
Share on other sites

I know this is quite lengthy, but I would really appreciate some input. I'm curious as to your opinion on my two children. About a year and a half ago my oldest son (now 10 years old)was diagnosed with ADHD and was put into special education at school. I chose not to medicate him and instead did a lot of research. I finally came across a website that said "do not accept a diagnosis of ADHD/ADD without first ruling out these things". It had a long list of things and allergies was one of them. I found an ENT who also specialized with allergies and I brought the list to her. I asked if she'd be willing to go through the list with me and rule out each one, she did. After doing several blood tests, checking for diabetes, thyroid, lymes, lead, etc., she then did allergy testing on him. After a couple different visits my son was diagnosed with having numerous allergies, both environmental and food. Several of his allergies were in the moderate to severe range, which confused me because I'd never seen a "reaction" from him. Well, I took this very seriously and I immediately eliminate ALL of his food allergens and then he started on sublingual antigen drops (a drug-free all natural alternative to allergy shots) for his environmental allergies. After a month of complete elimination I then introduced one of the foods once a day to his diet, while documenting everything he ate and his behaviors. Then I would take the food away, sometimes right away if I saw immediate results, then I'd give him a few days to get it all out of his system before introducing the next food. I kept very good records and with the exception of one or two, I was able to see exactly what each food does to him. Most of the foods caused behavioral changes, ranging from emotional outbursts, crying, anger, inability to stay on task or focus, nervousness, biting nails/picking nose/chewing on things, etc. A few actually caused hives and the carrots caused an anyphylactic episode. Eliminating all of the foods he is allergic to has been very difficult and although it seemed impossible, it is indeed possible and I've been doing it for almost 12 full months. To give you an idea of how hard this is, here is my son's list of allergies:

Foods that he's allergic to:

Milk, wheat, corn, soy, peanut, almond, cane sugar, beet sugar, malt, apples, oranges, peaches, pears, strawberries, lemon, kiwi, lettuce, cauliflower, green peas, carrots, navy/white beans, red food color, and orange food color.

Environmental allergies include:

Trees (especially birch and oak), ragweed, grass, weeds, house dust, dust mites, 14 different types of molds, cats, and dogs.

The doctor that we've been working with was only treating environmental allergies with the drops, but since having my son for a patient she actually started doing the food drops as well. My son has been on the drops for his foods since last August and since then he has been able to have milk back into his diet, as well as oranges, and sugar but only occasionally. He is still not able to have an abundance of those things yet, but I am hopeful that someday he will. Since eliminating these foods my son has been doing excellent in school and at home. He does NOT have ADHD and is currently only in one special ed class, and at the end of this month he will be transferred out of that class and brought completely into the regular education classroom!! :)

This is a struggle for us, however, because I am not able to send him to church summer camp, boy scout camp, sleepovers, etc, because no one would be able to feed him. I hate to think that he'll never be able to lead a "normal" life and have all those things. I don't know how else to help him. I wish I understood why he has so many allergies, there must be a reason isn't there??

Well, then there's my 8 year old daughter. She has struggled with chronic constipation since birth, she has had numerous bacterial infections and several hospitalizations. She suffered from ezcema since birth as well. When she was little I got her to an allergist who identified her as being allergic to several molds, dust, dust mites, asian beetles, cats, walleye, eggs, wheat, milk and peanut. She was treated for 3 years and her skin cleared up almost completely and now her current allergies are only mold, dust mites, asian beetles, and cats. Her normal reaction is hives and ezcema, but her skin is MUCH better than it used to be. All that was great, but her constipation, fatigue, and depressed moods continued. I finally did a lot of research on my own. I highly suspected Celiac and so I decided to experiment with eliminating gluten. I could not believe how much of a difference only a couple days made. Then, however, I realized that I should not have eliminated the gluten without first having her tested. So, I started giving her gluten again and set her up to see a GI specialist. The doctor did blood tests, an upper GI, flexible sigmoidoscopy and something else, but said NO she does not have celiac. I was frustrated and since I knew the gluten was the problem I decided that after the last test I just eliminated gluten all together and never brought her back to the GI doctor. Within two days I had a brand new girl!! She was having normal, soft bowel movements every day with NO problems. She was excelling in school, I actually had teachers calling me saying how much they are noticing a change. She had energy, she didn't need to sleep ALL the time. She was not "slow" at doing everything and she was a joy to be around. Best of all she stopped getting sick all the time. She has been gluten free since last April and I feel it's the best thing I ever did for her. I've also realized that I feel much better without gluten as well. I'm not as good at sticking to gluten free diet, but I do my best.

My concern and the concern of one of her doctors is that I have not returned to the GI doctor and told her what I've done. I hate to think that she'll have to be gluten free for life if she really doesn't have to be. I wish she would just get the "label" of celiac so we would know for sure. Does that make sense, or sound horrible of me?? I've been told that there is no way for anyone to ever diagnose her properly now because she has been gluten free, is that right? Is there any way to still find out for sure if she has celiac or is that not important?

I'm a single mom of three and this is all very challenging, but I've proven to a lot of people that it IS doable. I wish my kids could lead "normal" lives where they could go to birthday parties and have birthday parties and school parties and not have to worry about everything. This has been very difficult for my friends and family to understand, as well as my kids' father, but as time goes on they have all seen the changes and don't seem to question me anymore.

I guess I'm curious if any of you have any advice for me as to getting either of my children more medical testing or help elsewhere? Also, do you think there is any hope of my son leading a more "normal" life and ever being free of all of his allergies?

I've done a lot of reading on intestinal health and the "leaky gut syndrome", I can obviously see that affect on my daughter, but do you think my son has GI problems if he has so many allergies? Is there something that I should be doing or a doctor I should be taking him to to figure all this out, or are my children just unlucky? I'm tired, confused, and frustrated and I am doing this all on my own, I guess I'm just looking for any help or advice that anyone can give me.

I am so very appreciative of you taking the time to read my story and I appreciate anything you can offer me. May the Lord bless you always!

Have you ever had your son tested for eosinophilia? My daughter has multiple food allergies, only 10 but she is also g tube fed and takes in an elemental formula to supplement her diet. It might be worh the test.

Share this post


Link to post
Share on other sites

Kaiasmom,

No, I haven't and I've never heard of eosinophilia before. My son has an appointment with his allergist soon, so I will be sure to ask about it then. Thank you!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×