Does this ever really get better?

[rlschell]

My doctor says that if I avoid all the foods that bother me for 3-6 months, my intestines may heal and I can go back to sometimes eating the problematic foods.

I was doing pretty well for the past 3 months and then I inadvertently found a new allergen that made me sick for a week (coconut). So I was clearly still sensitive after 3+ months.

I've had at least some of these allergies for 25+ years (I'm 45) and I've become much more sensitive to a broader range of foods over the last couple of years. It seems like it's getting worse as I get older, not better.

Will this ever really get better? Does "better" only mean I can eat just one of the items from my allergen list maybe once a week? Or can I go back to where I was several years ago when mainly dairy was the big problem and everything else rarely or never bothered me?

Obviously, I'm not expecting any medical advice. I'm wondering what other people have experienced that may help me with what to expect for the future. Avoiding so many foods is just so frustrating and limiting.

[Macabre]

I developed some food allergies in 2005:  shellfish and sesame. I had chamomile a couple of years before that.  My shellfish reactions are GI (I have other symptoms around that, but not classic ones typically and they all involve some GI action). 

My allergist said my gut could be healing.  I seem to have outgrown crab, and my shrimp and lobster numbers were better last time I tested (two years ago). 

I was on a proton pump inhibitor when I developed my FAs, and my doc speculated that that's why my gut is involved--and may be why I'm getting better. 

[lakeswimr]

What type of doctor are you working with?  Have you experienced reactions to all the foods in your signature line?  Are you certain?  What type of reactions do you experience?  How soon after eating do your reactions occur?

If these are IgE food allergies then you would need to avoid them unless you outgrew the allergen, which doesn't happen often in adulthood.  If you develop an IgE allergy in adulthood it is almost always going to be life-long.  If you are not dealing with IgE allergies then it is something else entirely and you may want to see a GI doctor. 

[rlschell]

In response to the questions:
My doctor specializes in food-related problems and he was the first person to initially suspect I had food allergies (~10 yrs ago) after several other doctors and GI specialists dismissed me because they had no idea.
I have tested all my allergens by food challenge (in the case of food groups, I've reacted to at least 2 or 3 foods in the group). I'm not giving up anything I don't have to!
My reactions occur within 2 to 12 hours and initially include severe nausea and bowel upset, followed in a day or two by body aches, feverishness, joint inflammation, constipation, ear aches, vertigo, mouth sores. Not fun.
Blood work shows NO IgE reactions, but extensive IgG reactions.
My doctor says it has to do with intestinal permeability and calls my problem "food allergies" although it doesn't fit the definition many of you live with. Whatever you call it, all these foods do make me very sick and I get better and feel great when I avoid them.

[rebekahc]

This:

Blood work shows NO IgE reactions, but extensive IgG reactions.
My doctor says it has to do with intestinal permeability and calls my problem "food allergies" although it doesn't fit the definition many of you live with.

is why we can't really help you with this:

Will this ever really get better? Does "better" only mean I can eat just one of the items from my allergen list maybe once a week? Or can I go back to where I was several years ago when mainly dairy was the big problem and everything else rarely or never bothered me?

We're coming from completely different places and our advice and experience most likely really doesn't apply to your situation.

[lakeswimr]

Yeah, that's very different than an IgE mediated food allergy.  Most of us here deal with IgE mediated food allergies and see allergists, carry epi pens in case of a life-threatening reaction, and have reactions that happen within minutes to up to 2 hours from ingestion and involve symptoms such as hives, swelling, itchiness, shortness of breath, throat constriction, loss of blood pressure, etc with the possibility of death, unfortunately.

What you describe is something very different altogether.  IgG testing itself is not considered reliable.  I understand you also did food challenges.  Did you eat only one food at a time because otherwise it might be very difficult to tell and your symptoms could be from something else and coincidental.  Anything that starts that far out from ingestion is difficult to pin down.  Generally speaking avoiding whole food families is not recommended any longer.  It was very old school food allergies and it is something many alternative doctors recommend.  If a given food is troubling a person and that person sees an alternative practitioner the alternative practitioner usually will recommend avoiding huge numbers of foods, thereby casting a very large net.  The person gives up all the foods and feels better but it may have been just ONE food that caused the problem.

My son's allergist told me he had a patient who thought she was having anaphylaxis just from being in the same room with candy that had peanuts in it. She thought the proteins floated out of the wrapper and caused her to have her throat close.  She thought she was allergic because her father said he was as well.  Turned out neither are allergic and both passed food challenges and can eat peanut butter.  Our minds can make us do all sorts of things, even seem to have anaphylaxis when we are not allergic to the food.

I'm not saying that you are not having food-related symptoms but it is something to consider when dealing with so called 'IgG food allergies'. 

My guess is that you could probably eat a bunch of things in your sig line, esp since you are avoiding some based on food groups. 

[rlschell]

I sincerely wish it were the case that I could eat some more of the things in my sig. Unfortunately, I HAVE tested the vast majority of them and they DO make me sick. I am a scientist and I approached this very methodically. It took me almost a year to isolate each of the foods and test them. My doctor suggests two weeks on a "safe" diet and then consume the suspect food for up to five days. I usually confirm a reaction within a day or so. There were times when I thought I was getting better and then took a turn for the worse. Careful food diaries allowed me to trace it back to something and test it. I held out a long time on chocolate, because I didn't want to give it up (who would?), but it was a problem after all.

I did not rely on the IgG testing alone since I know it is not reliable. In my case, the results do happen to align with foods that tested positive, but there are other problem foods that never showed up on the test. Plus, the test is old. My doctor saw no reason to repeat it because food challenges are much better. 

The real proof is that when I very carefully and consistently follow a diet that avoids all these things I feel SO much better. If one of the offending foods slips into my diet even once (e.g., I took some vitamin C tablets made from real orange juice or I took a tiny probiotic capsule that contained a bit of dairy), it sets off anywhere from several days to a week of nausea, body aches and all the rest.

I think my problem more closely aligns with what people call "leaky gut." I haven't been able to find any support groups on that though (OK, I found one, but it was filled with nuts talking about quack alternative remedies) and since my key issue is avoidance of foods that make my sick, I figured this is the place to be.

When I need to quickly explain to someone why I can't eat the food/drink they offer or why I bring my own food, it's so much simpler to say "FOOD ALLERGIES" than explain my problems in the detail I have here. If you say, "food sensitivities or intolerances," people think well you could eat just a little bit of it. They don't understand how sick I get, even if it's not a life threatening reaction.

If there's a better way for me to deal with my food limitation frustrations or a better forum for me to visit, please point me in the right direction!

[rebekahc]

Avoiding stuff we can help you with, but whether it gets better or whether you can have a little of what you react to eventually, no so much.  It's just so dissimilar from our reality, kwim?

Have you noticed if preparation method makes a difference in your reactions?  Perhaps heating, acid, etc could alter the proteins (or whatever structure it is you react to) so that you could tolerate some things?

[twinturbo]

Immunotherapy is the main scientifically proven method of treatment for food allergies that has the greatest chance of success. It is only a treatment with variable success.

You can either sign up for a clinical trial or find a private program from a reputable board certified allergist that is competent in food allergies.

Immunotherapy to build tolerance in an individual follows one of the following routines. Oral immunotherapy once an oral challenge is passed establishing a starting dosage. A course of environmental allergy immunotherapy for pollens *might* help with pollen-food syndrome.

You may also try to pass oral challenges on High Heat Treated cow's milk protein. This has been one of the largest breakthroughs in oral immunotherapy in the last few years. Cow's milk protein can be extensively denatured through heat, breaking the protein down enough to be tolerated by a milk allergic individual. Hen's egg has been shown that it similarly breaks down enough for tolerance.

The method and goal of immunotherapy is the same: by slowly reintroducing the allergen in such a way that desensitization is established under the care of a competent board certified allergist specializing in food allergies.

That is what is available to food allergic individuals. We have no option to "let our gut heal". The prescription for us until another effective, safe, FDA-approved treatment comes about for us to consider is strict avoidance, read every label every time, call manufacturers to assess risk of cross contamination. We must do this in foods, medicines, cosmetics, toiletries, anything ingestible directly or indirectly.

In short:

1. Strict avoidance is indefinite
2. High heat can denature proteins enough for some individuals even with LTFA to tolerate. This needs the guidance of a competent board certified allergist specializing in food allergies and most certainly in office food challenges, you may benefit from double-blind.
3. Some oral immunotherapy is available for some allergens.
4. Epinenphrine and Benadryl go with us everywhere. We follow our Emergency Action Plans if #1 fails, often consulting the anaphylaxis grading chart.
5. When applicable we invoke federal protections provided to individuals under the ADA and OCR, always meeting our burden of proof and using judiciously.
6. We align politically and seek representation for advocacy to address issues such as: food, cosmetics, medicines, and toiletry labeling policies; civil rights violations for a hidden disability; safety on planes, in schools.

[CMdeux]

As rebekah notes above, we can certainly help with avoidance-- though some of what you're avoiding is relatively rare in terms of IgE-mediated allergies, so there may not be a nucleus of people here who can help in a pragmatic sense, with avoidance for a particular food such as, say, "potato" or "bell pepper."

As for being able to "recover" I doubt that most of us can help with that side of things.

Recovery just isn't in the cards for most of us who have developed food allergies as adults.  I have no real hope that I'll ever be able to eat shellfish again.  One word of advice, however, that I think probably does apply to us both?

Do NOT focus on what is "missing" or build dreams around regaining foods/restaurants/activities that are now off-limits.  There is no surer way to make one's life bleak and disappointing. 

As one other adult member finally told her own allergist:  "I can live with the food allergies.  It's the HOPE that is killing me."   

Life is what it is.  I can still eat a lot of things, and I've learned to avoid what I can't and I have even (mostly) learned to accept that my food universe is my own, and I can't really change it.  I'm much better off than when I dreamed of ordering my allergen at a nice restaurant.    

[lakeswimr]

I think often times food reactions are not what they seem to naturopaths and other alternative practitioners who use IgG and other dubious types of testing.  In my case I thought I had food sensitivities for many years and tried to figure out the triggers.  Food certainly seemed related to my GI issues.  I couldn't figure it out.  Turns out I have reflux and the naturopath and other alternative doctors, and even some mainstream docs had me on a wild goose chase.  many a person who has Celiac has been diagnosed with a wide range of IgG 'allergies' instead of getting to a GI for a Celiac test.  This type of thing can damage people's health.  I do not think what you describe sounds the least bit like IgE allergies so I'm not sure why someone here recommended you see an allergist since allergists deal almost exclusively with IgE allergies (although some help with related conditions).  I'd see a GI doctor if i were you. 

if there are things in food families on your list you are avoiding I'd see what happens. 

I also have to throw out that some of your reactions could be psychological.  It is possible.  As I said, people have had even what seemed to allergists to be full on anaphylaxis from eating the placebo during a food challenge and then found they were eating placebo and the 'reaction' vanished.  Our minds are powerful.

It could also be you have some other yet undiagnosed food condition and by seeing a person who uses IgG testing you are delaying getting proper treatment (as you would if there were a GI condition that GI docs treat.)

Best wishes.

Yes, people can certainly help you with how to avoid things.

[eragon]

i think that elimination diets work best with 10 weeks without suspect foods, then slowly introduce.

i have followed the foodmapp diet for my ibs, and it did work. and has given tempory relief, but will have to go back on it to give my lower gut time to heal.

sometimes avoidance is the only way. certainly was the only thing to stop the pain for me.

[Jemma2]

I've heard a lot about the GAPS diet being beneficial for healing the gut.  I noticed in your siggy though that you are also a vegetarian. (right?)  I knows GAPS used lots of broth at the beginning, and I'm not sure if it's a must that it be bone broth.  It is quite a labor intensive diet I think, but in another message board I'm a part of people have raved about it.  Might be worth a google search anyway.