Seeking information from those with elimination diet experience

[YouKnowWho]

I would like to add my perspective of a child who is allergic to wheat, rye and barley.  I have been known to just say gluten because more people understand that.  But saying you are gluten allergic comes with a price.  It is not a fad diet for us, it is life or death.  I cannot just read GF and assume it is safe.  IE Pizza Hut has a GF pizza but recommends those with allergies or Celiac to avoid.  When he was diagnosed 11yrs ago, Whole Foods was one of the few places that had safe options.  But it comes with a catch.  Because in an attempt to save money and trying their brands, we had reactions.  Their answer was simple, we don't cater to allergies or Celiac but to what the general public desires. 

In my homeschooling journey, I have met more than a few crunchy granola folks who thinks the answer is at their naturopath or chiropractor.  I have met folks that deprive their kids of "allergens" such as gluten, corn, sugar, dyes, etc because they couldn't sit still.  Umm, starvation is not the answer.  But the majority of those people think big pharma is a shill but have no problem buying insane amounts of supplements or treatment plans to "cure their child or themselves."  We have had members here in the past who adamantly believed IgG testing, swore child was sick when they had eaten offended foods and a month later could eat it but had others they couldn't eat. 

Do I think intolerances exist?  Sure - I have a child who is intolerant to dried beans, my MIL is intolerant to gluten, DH feels better overall off gluten.  Given the stomach issues all of them have in processing these foods, I kinda equate with lactose intolerance.  I do not agree with articles that it is all in the brain because I have caught whiff of the bowel emptying that occurs after eating.  You can't make them up.

As far as bar codes go - good luck with that.  Once upon a time, I had a crazy allergist who swore my kid was allergic to foods he was eating with no issue because he was failure to thrive.  His list of avoidances included wheat, rye, barley, oats, corn, rice, eggs, soy, dairy, peanuts and tree nuts.  My other child came up allergic to various spices like garlic, mustard and another one that is rarely listed.  If you ever want to fully hit a brick wall, try calling manufacturers to ask about non top 8 or 12 allergens.  Many will tell you they need a note from allergist because it is proprietary information (yeah Heinz, I want to make my life 10x harder and make my own ketchup) or they don't have a clue what the source of Calcium Citrate is and whether it is corn based. 

Yes, I did do a process of elimination with my daughter because after four years of being allergen free, our luck ran out.  She had been eating various tree nuts until macadamia nuts caused an ana rxn.  A month later, she had a reaction to her beloved Nutella.  Okay, so tree nuts are out.  But then she started with random hives, itchy ears and throat and refusal to eat foods.  So I started saving labels and narrowed it down to sunflower and soy which testing confirmed.  Have they progressed to anaphylaxsis yet?  No which is why I could continue my theory.  (Granted I have a decent allergist now having booted a few crazy ones to the curb and I could have done blind food challenges in office but the reality is that I will probably always have some doubt given previous history). 

[lakeswimr]

Great post YKW.  And this is not intended to Jim in any way but just a general comment that reading your post brought up in me which is that I don't think most people or nearly any who don't deal with multi food allergies with such a complicated history like your and may child's would fully get what your post implies as far as work on the part of the parent and complications and difficulty in getting the basic information need to avoid.  Even allergists and even very good ones don't live that life and some or many don't fully understand what it means to try to avoid non-top 8, to have reactions spring up when they shouldn't, etc.  And then to have friends who have 'allergies' on top of that and who sometimes eat their allergens.  I have many friends who have 'allergies'. 

I don't don't know if food intolerances exist, actually.  I think that they are likely either undiagnosed actual food conditions like Celiac, Eosinophilic Esophagitis, reflux, or etc or they are reacting to the thing in wheat and other things that can cause gastric issues but isn't an allergy (it is in cabbage and other foods, too--can't think of the word.)  But when people are diagnosed as being food intolerante by altera docs they can miss getting diagnosed for a real thing that can cause serious issues like Celiac or Eosinophilc Esophagitis.  Cutting foods without seeing a good GI can be a bad thing but many do it.  I have many friends on all sorts of avoidance diets.  I'm not saying I don't believe your family has bad reactions to those foods but that I think there is likely a very real medical reason for those reactions and that reason may or may not be serious. 

But it could also be that there are GI conditions that are not yet diagnosed.  I have had horrible GI issues to foods that also caused EoE symptoms.  The GI doc said that doesn't make sense as EoE doesn't cause lower GI issues, but many, many people with EoE (in large EoE groups online) report lower GI issues.  So, either it is actually an EoE symptom or what my GI doc thinks might be true which is that I have another GI condition that they just don't have enough science and understanding of yet to diagnose.  She said the science on EoE is so scarce and they know so little and she can well believe that there are other yet unknown conditions that are very real.

I think you should write an article about this topic.  It is a good one, YKW