Allergey vs Sensitivity vs Intollerance ???

[LaLa]

I have so many questions!
What is the difference between these things?!

My daughter gets very sick quite quickly from certain foods, yet she does not have the breathing problems often associated with allergies.

We have done skin scratch testing that has told us she was allergic to foods that she has NO reaction to and fine with foods that make her very ill?

We have exhausted our options of medical professionals to only conclude that non of them can agree on any form of allergey or sensitivity testing as being credible.

It has been a bitter challange to figure out how to help bean to become a healthy child and in this uphill battle I have found no one in any professional realm who could truly help us.

I am just wondering why it is so hard and if there is a profession out there that deals with unravelling the mysteries of how foods effect our health?

My conclusion to this point has been that we, the parents, are likely to find our most valuable help through elimination diet at home.

I just have to say I am very pleased to see this forum and I hope we can help each other and new moms as well, to discover good health...where ever it may be hiding!

[MamaMonica]

I think it is only called an allergy if there is swelling or breathing difficulties or hives. These terms are confusing to me as well- and the medical profession often seems to write off intolerances and sensitivities as being without concern.

So far, we've had the best luck with elimination diet at home.

[Cheshire]

My dh has awful food allergies and I'm intolerant of wheat. From what I understand, allergy means your body has an immune reaction to the allergen that can set off an anaphylactic (sp?) reaction and cause death. Intolerant just means you feel awful (and sometimes like you wish you would die ) but it won't kill you.

My husband's allergies seem to change every ten years or so. He went to an allergist about a two years ago and did the skin tests. This doc told him he was allergic to all sorts of foods that he could eat without trouble. We thought it was strange but, okay, decided he would avoid them.

Around six months ago he went to another allergist, on a recommendation of a friend, and had the testing done again. This time, this doc tested all the same things but also did a control scratch with plain old saline water. DH reacted to that, I thought, great, he's allergic to salt water. : The doc explained that dh just has reactive skin. Usually you can tell the true allergy on skin testing if it creates a histamine reaction (evidenced by a "tail" on the whelp, instead of just a round whelp of skin the histamine creates a raised "tail" that spreads out from the round whelpy part. So, the reactions a couple of years ago to the foods that dh has been avoiding weren't true allergies.

The doc sent dh's blood to be tested and the results came back and showed all of the food we knew dh couldn't eat but it also showed wheat. DH doesn't have any problems eating wheat. The doc said that it is probably an allergy his body had when he was younger and that if he doesn't have any problem with it then to go ahead and eat it unless he develops a reaction to it.

This doc is on the cutting edge of allergy research and though I'm not thrilled with his bedside manner he has given us the most logical answers to our questions. He told us not to worry about foods and our son. Yeah, right. Like I'm not going to worry.

So, we read as much as we can and talk to a lot of different people. Our best friend owns a huge health food store so he is a great source of info for us. Also, remember most docs are trained in illness and not health.

Take the time to find one that you like and that answers your questions but in addition keep doing what you're doing. Take charge and do the elimination diet. I can't praise it enough, it really is a great way to figure it out because as we know the medical tests are not perfect.

Once you find out what the allergies/intolerances are then you can find alternatives (health food stores, great resources for this). Living with food allergies/intolerances can be a huge pain but knowing what to avoid and feeling great when you do makes it worth it.

Best wishes with your baby. I hope you get your answers very soon.

[Hey Mama!]

My oldest dd was tested for food allergies when she was 16 months old. Her levels came back slightly elevated, so the doctor said she had a sensitivity to those foods, but the levels weren't high enough to be a true allergy. Her biggest thing is milk, and a ped I only saw once listened to her symptoms and said, she's lactose intolerant (after being told over and over it was virtually impossible for her to be born like that) and that was that. I knew that bit of info in my heart all along, it was just gratifying to have a "professional" agree with me. Her lactose intolerant syptoms are diarreah, upset tummy. She says it makes her feel sick, but she doesn't have any respiratory reaction to it. When she was really young she would get a rash around her mouth where it touched her and I think her excema problem as a baby was from milk based formula.

[LaLa]

wow, great posts! Thanks for sharing your stories and ideas ladies!


Here is another thought to muddle into this group...
So if an allergey (true allergey) is only the type that causes the life threatening immediate response,then what about a reaction that also leads to death, but more slowly over the course of many years: moreso through autoimmune disorder reactions?

I ask becuase isn't that what gluten sensitivity/Celiacs is for many people?

AND Is all gluten sensitivity an autoimmune response (body rejecting the gluten and fiighiting off good things in attempt to get gluten out, causing villi damage for some among a slew of other damages to the body over time).

AND if it is an autoimmune response...what does that MEAN?!

I am just trying to wrap my brain around all of this.

I have dairy intollerance, and my regular doctors would say I could eat dairy because I am not "allergic" in the sense that I don't stop breathing, but it did cause me an ulcer at age 14 from the chronic acid reflux?
So I am just confused as all get out.

Does bean have auto immune disorder? Food intollerance? Is she just "sensitive"?
Does it need a label?

[MamaMonica]

You bring up really good points, LaLa. Intolerances are not minor things to be shrugged off and can lead to serious health problems (even death)over time.

I think any gluten intolerance where your body makes antibodies is an autoimmune disease. Celiac disease is so hard to pin down with the tests being interpreted differently at different labs and by different doctors that is hard to get a clear diagnosis.

Everyone with celiac, even on a GF diet is at a higher risk for cancer because of the celiac. Therefore, it is a dangerous intolerance! Untreated celiac is even riskier and also puts a person at high risk for osteoperosis.

And autoimmune diseases tend to cluster- you are at a higher risk to get another if you have one.

This is why I am frustrated when doctors write off intolerances and sensitivities because there is not an immediate life or death reaction- there is a long term one!

I wonder if they won't discover in years to come that many food intolerances cause autoimmune reactions that are ust not yet documented.

[LaLa]

monnie, I am sure that will be the case.

My dd has a variety of bizarre responses such as petichiae rashing that occured for aprox 1.5-2 months randomly around her whole body.
Her doctor said her body was confused in fighting a virus and began fighting her cappilaries. He said not to worry?!
(HUH?!)

And bizarre rashes that would start from her birth mark as it swells up and sends histamines from a collection of mast cells, throughout her body...leading to redness and rashing over her face, head, torso etc.
Yet she feels fine.
Bizarre stuff like that?!

It seems to me that those may be autoimmune responses, yet I still don't know what that implies overall...

[Jessica36]

Ok quick rundown as I need to go get my boys.

Allergies are an immune response. They are in the same field as Asthma hence why they go hand in hand many times. NOW for Zachary he has the classic anaphylatic symptoms and also GI symptoms. His body produces white blood cells in his esophagus that attack the foods that he eats like it is a virus. This is called eosinphilic esophagitis and is an allergy also.

Rashes ~ IF you think it is an allergic response, give some benadryl (Zach is 28lbs and gets a tsp) (oh and clear with your dr) if it goes away in 10 mins then it is an allergy, period. If it doesn't may be more of an intolerance.

SPT ~ Reactions trump results, Ask for RAST testing it is a bit more accurate. The gold standard for allergy testing is actually patch testing which are where patches are applied to the skin with the allergens on them and stay there for 3 days and then are read.

OK Is that enough for now? Ask me more if you want and I will answer when I can.

[mama2j&t]

i am so frustrated by the whole gluten intolerance/celiac thing. i had some alternative testing done (meridian stress analysis) which confirmed what i thought - i am sensitive to gluten amongst other things. also my small intestine showed up very weakened. when i cut out gluten i feel much better. if i read about celiac disease i am almost certain i have it. so i got the blood antibody test and the very conventional dr office sent me a letter saying "normal". i am smart enough to keep away from gluten, but i'd really like to know what is going on in my body. mostly because i have had 3 m/c's and my son has cleft lip and palate which all can be caused by nutritional deficiencies mainly folic acid which is a big celiac symptom. and i want to have more kids so i want to get "healthy". i guess i can just assume "gluten intolerance", but also celiac is hereditary and i don't want to just cut it out of my kids diet, but what if they are intolerant as well. i have never really had "digestive issues" with gluten until recently but looking back on my whole life i've had tons of 'silent' symptoms. so what if my kids are the same way.

its so frustrating. if only there were clear cut directions - eat this - don't eat this - feed your kids this - dont feed them this!!!! and gluten is such a hassle to cut out completely. i really don't want to do it for the kids unless i knew for sure.

sorry for the ramble/rant

[georgia]

I was thinking that Dr. Rapp writes that allergies can manifest in at least one of four ways: lungs/breathing, intestines, skin, and brain/behavior.

I just realized this new forum was here, hooray!!!! My oldest ds has a dairy allergy.

[LaLa]

I hear ya! It is very difficult indeed. Many people do not show any symptoms until permenant damage has been done to the body. Not a fun choice to make at all.

Are there others in your family with Celiacs?

I also have a slew of the common symptoms from childhood (always have had aching joints, as a child the bloated gut, many digestive issues through adolesence etc...dry skin and rashing ) BUT I don't get sick from eating gluten. My daughter, however, gets sick immediately after ingesting gluten. I mistakenly gave her something that had barley in it yesterday and sure enough, she was sick that night. (and I felt terrible for not catching that on the label!)

It is a difficult one. there are testing options out there that you could try. None are conclusive, but maybe do a couple different ones (maybe enterolab and a blood test?)
and see what you see?

[MamaMonica]

Originally Posted by mama2j&t

i am so frustrated by the whole gluten intolerance/celiac thing. i had some alternative testing done (meridian stress analysis) which confirmed what i thought - i am sensitive to gluten amongst other things. also my small intestine showed up very weakened. when i cut out gluten i feel much better. if i read about celiac disease i am almost certain i have it. so i got the blood antibody test and the very conventional dr office sent me a letter saying "normal". i am smart enough to keep away from gluten, but i'd really like to know what is going on in my body. mostly because i have had 3 m/c's and my son has cleft lip and palate which all can be caused by nutritional deficiencies mainly folic acid which is a big celiac symptom. and i want to have more kids so i want to get "healthy". i guess i can just assume "gluten intolerance", but also celiac is hereditary and i don't want to just cut it out of my kids diet, but what if they are intolerant as well. i have never really had "digestive issues" with gluten until recently but looking back on my whole life i've had tons of 'silent' symptoms. so what if my kids are the same way.

its so frustrating. if only there were clear cut directions - eat this - don't eat this - feed your kids this - dont feed them this!!!! and gluten is such a hassle to cut out completely. i really don't want to do it for the kids unless i knew for sure.

sorry for the ramble/rant

The testing for celiac is notoriously inaccurate- sometimes just because of the lab the doctor sends it to, or else the doctor runs the wrong test, etc. Also if you've been off gluten, the test is not accurate. (I have CD).

I took my youngest off gluten because he reacts to it although I haven't put him throught the blood test and won't put him through a biopsy. I know he gets sick from gluten, so I don't give it to him- but it is harder for my oldest who gets stomach aches from wheat and not any other symptoms. It is really hard to make the step to get rid of gluten when you aren't sure how serious the problem is.

[Jessica36]

Another thing to remember is that Reactions trump results. I have a good friend whose ds is anaphylatic to peanuts, shows up negative on the RAST test. THis is such fun, no?

[mama2j&t]

lala~
my uncle died of colon cancer at age 30 due to complications of ulcerative colitis. very well could have been celiac but who knows. he always had severe diarrhea problems i guess. my sisters 3 yo ds has a million food allergies.... almost everything. he hasn't been tested for celiac though he rast tests positive for all glutens. i remember getting severe tummy aches as a kid after eating spaghetti and mac and cheese. i had mouth sores constantly in college. i have terrible sebhorrhea that is defintely triggered by gluten. it started in college. mostly i think i have malabsorption problems, weight loss, nutritional deficiencies. sounds like celiac stuff. not that i want to be a celiac, but it would make things make sense at least.

today i talked to the woman who did the meridian testing for me and told her about the gluten antibody test results. she said she can do a saliva test for celiac/gluten antibodies or something like that. i think through her i can get this sorted out. she also said she can test my kids for gluten intolerance. i'll probably do that even though it costs a small fortune. i've read about enterolab too, maybe i'll look more into that.

i am glad this forum was added sometimes you feel crazy in real life. it seems like many people think food allergies are just things that hypochondriacs make up i just want my kids to grow up healthy! and i wouldn't mind feeling good myself.

[snuffles]

Hi there, I'm another one trying to sort out gluten intolerance/celiac disease. Zoe tested positive to two antibodies to gluten, and she is better on a gluten free diet but still has loose stools and lots of food sensitivities (mainly dairy, chocolate, citrus). I put my other kids on a GF diet too. I feel a lot of guilt about it though. Right now the whole family is GF and I feel like the gluten natzi. I can't decide what to do. I am too scared to do a gluten "challenge" for my dd Zoe but that is all the GI dr wants me to do. She also had yeast problems as a baby so that could be to blame for all of her intolerances. This is hard stuff, and it really is getting to me. I have never had symptoms of Celiac but my husband has.. stunted growth as a kid, sensitive tummy (I am convinced my MIL has it too but she will never get tested.) My 4 yr old dd has never had symptoms. My son has, I think, had nutritional deficiences (pale skin, thin breaking nails, bad teeth) and is short for his age.. he has been GF since last May but still seems the same (yes, I am extremely careful!). Eating GF for the whole family is so expensive, and makes travelling, visiting friends, EVERYTHING so complicated! Sigh~

[Cheshire]

To answer your question about needing a label, I think that trying to get one from a doctor can be even more frustrating than just treating the symptoms and going with your instincts.

My dh, who has all of the food allergies I listed in an earlier post, gets razzed all the time by co-workers or even distant friends whenever he eats out with them and has to turn down the salad or get tea without lemon, etc. He always hears "are you really allergic or do you just not want to eat healthy/the salad/your veggies/etc." Even his own mom forgets what he's allergic to.

It is a pain. I didn't mention in my earlier post (the first post I wrote got lost when I tried to send it and I forgot to put this in my second attempt as I was in a hurry and was retyping that big old long novel I wrote the first time ) I am intolerant of wheat. I've had stomach issues my whole life, part I think was from migraines (can manifest as stomach aches in kids before puberty) but part from wheat. For years I had docs tell me it was all in my head or I had IBS or whatever. I didn't have classic IBS symptoms but they couldn't find anything else wrong. When I did ask about wheat I got the funniest looks and "no, take this medication."

It finally came to a head about five years ago when I was sick for two months straight and was completely worn out. The docs had no answers. One night I ate a whole wheat bagel sandwich and felt like throwing up within minutes of eating it. I knew that was it. So, the next day I cut all wheat out of my diet and I felt better within 24 hours. I've been wheat and gluten free ever since and feel great. I can tell (and so can dh because my "attitude" changes) whenever I eat something that has wheat in it by accident.

Even though I've never been officially diagnosed I could care less. I know what works for me.

We are scared for our son that he will develop something similar to what we've got but since we've been living with it for so many years we figure we are best equiped to help him if he does.

[LaLa]

mat4mel,

I found that bean was reactive to a ton of foods at first and my opinion of why that was is because when she was on gluten and dairy (her main triggers) her body was protesting and attacking the foods...it wasn't distinguishing gluten from any other food she ate, it was just in a reactive state.

SO when we did her blood antibody testing we found that she was reactive to all the foods she normally eats and none of the foods she doesn't eat. Following me?

So after about 10 months of a strict allergen free diet, she is able to reintroduce ALL of the foods we took out with NO response at all.

But throughout all of this she has still had frequency in stools etc, as she has had since birth.

I think the answer for us lies in the carbohydrates. I read about the Specific Carbohydrate diet and I was NOT wanting to get onto that bandwagon in addtion to gluten and dairy free.
BUT I did take some of the ideas to our diet.
Bean's gluten free diet was relying heavily on rice. I took a lot of the rice and rice flours/cereals out of her regular diet and made them much more balanced with teh proteins.
I stopped letting her drink rice milk all day long and only gave her a cup of that 1 or two times a day. In the daytime she drinks gluten free herbal tea with honey.

For treats I switched her school snacks to fruits or fruit leathers and nuts.
I also make monster cookies (which are made entirely with nut flours, nuts, honey, raisens.) for snacks too and other things that are higher protein lower carbs like dips and such.

This has REALLY helped her with that lingering battle she has had with her BMs. And having that finally under control (and stays under control so long as she doesn't get gluten so far...knock on wood)
has helped her to be able to finally use the toilet and potty learn!
She is 4 years old and has just been able to use the toilet during the days for this past month. It has been the only diarrhea free month of her life, almost. I am certain that is why she hasn't potty learned.

So, if this was confusing, what has helped bean was to first get her off gluten and dairy and any other obvious high allergens (we took out soy, egg, and corn based on her blood tests).
She ate meats, veggies, rice, fruits, nuts etc.
I bake a lot too.

She did MUCH better and was able to add corn, egg, and soy back without issue.

BUT she always still had some diarrhea (not as bad as pre gluten, but not "normal"). This is where we looked at the principles of the SCD diet. We did not go full force and she still gets plenty of carbs, but this really is helping her so much.

We also try to never load up on too much and keep a balance of all foods.
I hope that may be helpful. I know how hard it is when you think you have it, but you just can't figure it out all the way!

[LaLa]

cheshire, good for you for figuring it out!


it is so hard when there is not only no one to steer you right, but that the people you seek help from are actually steering you wrong!

I went through a similar situation as a teen and it is very maddening.

You're right, you will be well equipped!

[MamaMonica]

LaLa, I found I also had problems with carbohydrates in general in addition to celiac disease. I can't eat brown rice, GF pasta, millet, buckwheat, quinoa or any grain except limited white rice (rinsed well before cooking) and one type of GF bread.

It was such a bummer! I read all the books and tried to substitute safe grains, but they weren't safe for me.

I went on the SCD for about a month and felt great when I ate no grains- it was like a miracle cure. I couldn't stick to the restrictions, though and my ds would have nothing to do with the almond bread or monster cookies (which I thought tasted good). I think he has a nut sensitivity.

The kids seem to tolerate GF substitutes and "safe" grains OK, which I'm glad of.

[LaLa]

monnie, that is good!
The idea behind the SCD is that it should only be a temporary diet until your intestines have healed, at which point you can start again.

Still, going full fledged on SCD seems like it would be VERY challanging! And i would worry about doing that diet for very long for fear that it would be too much protein?!