Seeking information from those with elimination diet experience

[Jim]

Hello,
I need a few volunteers who would be willing to share their experience and difficulties with conducting their own elimination diet (for the purpose of diagnosing food allergy, intolerance or sensitivity)  If you are interested please keep reading.  I intend to use this information to help people dealing with undiagnosed allergies.

I want to conduct the user interviews right so I would prefer a Skype or quick video conference interview, but I will accept whatever you are comfortable with (Skype, phone, chat, email or even forum message)  I need 3 subjects for interviews.  I am hoping to get this finished before Monday.


This is the problem as I see it:

For someone having problems with food allergies, sensitivities or intolerances, an elimination diet is required to get an definitive diagnosis.  Elimination diets are difficult, time consuming and require a high level of commitment to be effective. 

I would like to help solve this problem through the implementation of various assistive technologies ( barcode scanning, integration with ingredient and symptom database(s), statistical algorithms ) and tie them together with an intuitive customizable User Interface.


About me:  In my late 20's I started to develop a whole range of serious autoimmune type symptoms.  Ulcers in mouth and entire digestive tract, arthritis and abdominal pain and systemic itching.  This went on for over a decade.  I saw many doctors and was prescribed everything from antibiotics to acid reflux drugs and then finally antidepressants(?!)  None of these helped and I only received relief after conducting my own elimination diet and then seeing an allergist specializing in food allergies.  A skin test confirmed I was allergic to Barley, Rice and Rye and eliminating those from my diet was the cure I had been searching for.

I have been in the software field for over 20 years and this project is for a UX design class I am taking.  However, I have been thinking about an app like this for years and intend to follow through until the application is finished and working.


Thanks for your time.
Jim

[Jim]

Guys this is for a good cause.  This app will be completely free and it is only being developed to help people conduct elimination diets.  If it would make it easier I can just post the elimination diet questions here.

1.  Have you personally attempted an elimination diet in order to diagnose an unknown food allergy, intolerance or sensitivity?

2.  Did you experience any difficulties with the diet?

3.  Can you describe that experience and be as specific as possible about these difficulties?

4.  Please add any info or thoughts about ANY help that would have made the diet easier.

Thank you!
Jim
Thanks so much for your time if you complete this. 

[Macabre]

I can't speak for others here, but I associate "elimination diet" with alt med practitioners. Board certified allergists tend not to use elimination diets for diagnostic purposes. The membership here is typically big on science.

Also, this board tends to value privacy, so if you don't see folks coming out of the woodwork to Skype with you, understand that may be why.

[Jim]

I really appreciate the reply. 

Your opinion of elimination diets is interesting.  I don't intend to come across as argumentative, I am truly interested in your opinion. 

What specifically do you find unscientific about an elimination diet?  Possibly I am confused, but if you honestly believe that specific foods can cause specific people symptoms, wouldn't isolating the specific conditions or foods and gathering empirical evidence to support or disprove a hypothesis, be considered textbook scientific method?  What am I missing?  I am open to differing opinions.

I completely understand a reluctance for any audio or video user interviews.  You make a very good point.  Forum PM or reply would be totally fine.

This info is solely to create a 100% free tool to assist people in gathering information about specific foods and determining if correlations or patterns exist with specific symptoms.

[lakeswimr]

It is because this board is for people who have IgE mediated food allergies or have children with IgE food allergies, the type of allergies that are potentially fatal.  IgE reactions are almost always very obvious.  Since they can cause fatal reactions, the recommendation would be to see a good board certified allergist asap and get epinepherine and carry it always and to avoid the food totally.  If one was unsure which of several foods caused the reaction, a good allergist would help figure out the cause.  It would not be safe to eliminate and home challenge foods as the person could have anaphylaxis and be unprepared to treat it.  (And treatment unfortunately doesn't always work.)

IgE allergies often get lumped in with people who think they have food allergies but may have anything ranging from lactose intolerance to nothing, frankly. Many people are diagnosed with food allergies who do not have them.

I will say that Dr. Sears is famous for recommending elimination diets to help nursing mothers figure out the cause of their babies' symptoms and this can have a place in things.  Nursing babies do not always react as strongly to proteins passed through breastmilk as when babies are directly fed foods.  Also, there are various other types of food allergies and food reactions that are in the GI doctor realm such as EoE, FPIES, Celiac, etc that can all be very serious and are very real, despite not being IgE mediated.  Elimination diets are sometimes recommended for these conditions.  However, I would always recommend seeing a good GI doc and maybe allergist as well before staring any elimination diet unless the food was causing very serious symptoms because eliminating gluten or EoE suspects before getting tested could lead to false negatives on testing or make testing impossible. 

Nursing mothers do often keep a food journal and do elimination diets while nursing to help figure out possible triggers, though.  That is a thing that can be recommended by allergists, GI docs, etc.  But many pull foods based on thinking gluten is an issue, don't get an actual Celiac diagnosis and also are not feeling they have the actual diagnosis since they never got tested.  This can lead to the person not taking the elimination as seriously as someone who gets the actual diagnosis and they might cheat once in a while.  But cheating with EoE or Celiac isn't a good idea and can cause a lot of internal damage that takes a long time to heal.  Also, it is recommended that people with Celiac and EoE have certain testing done through time and insurance may be a lot less likely to pay for the testing without the diagnosis. 

I will answer your questions.

1.  Have you personally attempted an elimination diet in order to diagnose an unknown food allergy, intolerance or sensitivity?

Yes, I did for me and for my son.  My son has IgE food allergies.  i tried an elimination diet while nursing and it helped a bit but did not let me figure out the cause of his reactions.  Even when he was eating food it was very, very hard to figure out because I didn't have the right information about IgE reactions from doctors and also because he was allergic to so many things (which is unusual) and also because I didn't fully understand that cross contamination, both at home and by manufacturers, could leave enough food protein to cause a reaction.  So for a long time I was sure a certain food was causing my son to have reactions but it was really that the foods he ate where processed in a facility with nuts/peanuts and didn't list it on the label since that isn't required to be listed.  So, we avoided a very difficult to avoid food for a year needlessly, while not understanding the need to avoid nuts/peanuts fully down to cross contamination levels.

In my case I tried to figure out what caused my issues.  I have EoE which is not well known.  The only real way to tell an EoE trigger is to avoid the top causes of EoE for a few months, have an endoscopy with biopsy, get scoped and biopsied again, and if all clear, add some things back in and keep doing this until by process of elimination, you know your trigger foods.  If not clear, pull more foods and repeat.  It is very difficult.  Symptoms often don't match with how clear a person is internally but sometimes do. 

2.  Did you experience any difficulties with the diet?

It is socially isolating and people often don't understand.  It is also emotionally difficult to be around people eating foods that you can't eat, maybe particularly if you are a child and particularly if you used to eat those foods and miss them and are feeling really hungry at the time. 

Food manufacturers don't have to list anything but the top 8 allergens (dairy, eggs, peanuts, tree nuts, wheat, soy, fish, and shellfish) on food labels and don't have to label for cross contamination but many do this voluntarily.  This leads to the false idea that it is required and that lack of a warning label means the food is safe when this is not necessarily the case.  It also means people who are allergic to anything outside the top 8 have to contact companies to ask if the food contains their allergens.  Many food manufacturers will refuse to provide this information.  You might think the solution to this is to make all foods from scratch but even basic cooking ingredients can be cross contaminated with allergens. 


3.  Can you describe that experience and be as specific as possible about these difficulties?

I want to participate in various social events and it is awkward to have to explain why I'm not eating.  People ask, "how about the salad?" or "No even the fruit" or say, "I made you this specially."  I can't eat that stuff and it is hard to get others to understand.  I'm not taking a chance to eat the specially made thing and end up living in the bathroom for the next week and in pain for days and have my sleep disturbed.  People often seem to feel offended by this or think I'm nuts or exaggerating.  They don't know what EoE is.  They aren't sure it is real.  Sounds weird to them. 

My family isn't used to my having this and has a hard time to remember to not cross contaminate things in our kitchen.  they cook with my EoE allergens and touch things.  If I touch those things and eat things contaminated I can be sick from it.  I might think I can get up and got to work quickly but I might get stuck in the bathroom for 45 min or an hour and I can't be late to work!! 

My son was left out of many things due to his allergies.  A small group of mothers at his school were very difficult about his allergies and did a lot of things that upset me greatly.  I felt they were extremely selfish but I'm sure their perspective was quite different than mine. 

At one point I was spending about 20 hours a week researching what the heck my child could eat since he had top 8 and non top 8 allergens.  And i was getting refused by many companies as far as giving me the most basic of information.

There is a lot more.

4.  Please add any info or thoughts about ANY help that would have made the diet easier.

People being understanding.
Having more food options.
Having more good cookbooks.
Having more restaurant options.
Having companies have to reveal all ingredients and cross contamination risk on labels (not having to call about non-top 8 and cross contamination.)
Living in a society that is less food-centered.

[lakeswimr]

A few more thoughts - manufacturing can change any time and so that might make the accuracy of what you are trying to develop less accurate.

Non-top 8 like barley, rye, and rice as well as many more foods don't have to be listed on labels.

As for what you wrote about yourself--testing isn't very accurate for positive results.  It is more wrong than right--high false positive rate. there is a low false negative rate so it is helpful to tell what a person is likely *not* allergic to. 

If you are not 100% certain you were reacting to all three of those foods, testing could have been a false positive to some and you might only have been reacting to one or two.  Also, testing that allergists do is for IgE food allergies.  Your symptoms, other than the itching and stomach pain, do not sound IgE in nature.  If you do have IgE allergies, though, you should have epinepherine with you at all times.  Did the allergist give you epinepherine?  When people avoid a food that has previously only caused minor IgE symptoms (hives, swelling, itchiness, difficulty breathing-not a minor symptom, vomiting, diarrhea, stomach pain), future reactions to accidental ingestion are often more severe.  So, you should have it with you.  If the doctor doesn't think it is IgE then the testing makes no sense as those are IgE tests.

I would see a GI doctor as well.  You should not have ulcers in your digestive track and should find a good GI doc who will work with you to find the cause!! 

Good luck!

As for your idea--top 8 foods already must be labeled by law so I'm wondering how your bar code idea will improve on this. There might be a good idea here but I think you would have to explain a bit more for me to see it more clearly.  Truly--good luck to you!

[lakeswimr]

After taking the time to thoughtfully respond in detail, I think it would be only polite to receive some thanks, even very brief.  Lack of this is part of why some people do not respond to posts of this nature.

[JimMc]

Thanks for taking the time to answer.  I have a lot more to say about the attitudes of people on this and other allergy based forums but I don't think anyone would be receptive so I'll leave it at that.

[lakeswimr]

Jim,

It isn't that we have 'attitudes'.  We have read peer reviewed studies, seen top doctors,and done extensive research about these topics, collectively.  I offered you very good information and you are dismissing it.  I'm not sure where you opinions on this topic come from or how much research you have done.  Our group is very open to anything that is proven by research. 

[spacecanada]

Lakeswimr had some excellent answers that echo what most of us here would say. 

Elimination diets as a diagnostic tool are great for mild intolerances, but very risky for food allergies, when reactions can be deadly. 

Otherwise, Those of us with food allergies live on a permanent elimination diet, without the ability to ever reintroduce allergens without dire consequences.  (There are some experimental therapies allowing some people with allergies to eat their allergens again, under very controlled doses and schedules, under close doctor supervision, mind you.)

Another risk of elimination diets for people who suspect gluten as problematic is that if they remove it from their diet they can no longer be tested for Celiac disease.

[JimMc]

Jim,
I offered you very good information and you are dismissing it.  I'm not sure where you opinions on this topic come from or how much research you have done. 

Please reassess my posts.  I truly appreciate your statements and I have not dismissed any of them.  I posted this question on as many food allergy based forums as I could find.  Yours was the only answer I received and it was exactly what I was looking for.  I've just encountered some odd attitudes from hostile forum pms to another very large forum outright *banned* me from the site after my first post which was identical to the post here.  I was just a bit perplexed that is all.

[admin rebekahc]

Thanks for taking the time to answer. I have a lot more to say about the attitudes of people on this and other allergy based forums but I don't think anyone would be receptive so I'll leave it at that.

Jim,
I offered you very good information and you are dismissing it.  I'm not sure where you opinions on this topic come from or how much research you have done. 

Please reassess my posts.  I truly appreciate your statements and I have not dismissed any of them.  I posted this question on as many food allergy based forums as I could find.  Yours was the only answer I received and it was exactly what I was looking for.  I've just encountered some odd attitudes from hostile forum pms to another very large forum outright *banned* me from the site after my first post which was identical to the post here.  I was just a bit perplexed that is all.

In the quotes above (my emphasis added), you seem to be implying that our members have had attitudes with you.  Which is not true as anyone reading the responses can see.  You go on to imply that perhaps our members have been sending you hostile PMs.  Also not true since guest posters such as yourself cannot receive PMs as there is no account to send them to.  You also say that the answer you received here was "exactly what you were looking for", so I see no reason why you would come here and make accusations about our forum and our attitudes. 

[PurpleCat]

When I read Jim's post I did not think he was accusing this forum in particular for the unappreciated PM's.  He said he posted on many forums, not just this one.

And yes, some sites ban people quickly.

I've been banned on one in particular for asking a question about Oral Therapy.  My question was not inline with their beliefs and it was not OK to ask outside their beliefs.

Glad lakeswimmr gave you the insight you were looking for.  I would echo what she says in relation to our food allergy experiences.

[JimMc]

In the quotes above (my emphasis added), you seem to be implying that our members have had attitudes with you.  Which is not true as anyone reading the responses can see.  You go on to imply that perhaps our members have been sending you hostile PMs.  Also not true since guest posters such as yourself cannot receive PMs as there is no account to send them to.  You also say that the answer you received here was "exactly what you were looking for", so I see no reason why you would come here and make accusations about our forum and our attitudes. 

Sorry, I'm afraid I'm just digging my hole deeper.  None of what I described happened on this forum. This was the only helpful forum out of 6 or 7 I went to. 

[admin rebekahc]

Thanks for clarifying, Jim.