New food allergy diagnosis frustration

[RudderBird]

Hi all. Recently, I had been having a lot of trouble with (respiratory) allergies, asthma, and eczema flare ups. I also had reacted badly after eating a few food items. I have a life-threatening allergy to sunflower and have always maintained a strict diet and avoid most all processed foods due to risk of the oil or any cross-contamination during manufacture. I went to the allergist yesterday to be reevaluated. My sunflower allergy was obviously off the charts, but I also tested positive for wheat, oats, barley, buckwheat, chicken, and fish. I'm a vegetarian so I don't have any issues avoiding chicken and fish. However, the grain allergy is a bit of a surprise, but I'm glad I discovered the cause of why I had not been feeling well lately. My DH seems to not quite "get it". He thinks I can still keep eating the stuff. Just because I wasn't having anaphylaxis from those things doesn't mean I can continue to eat them. "It won't hurt you once in a while" is what he tells me. I keep reassuring him we can eat like we normally do, we just have to make a few changes. Are there any good resources out there that offer support to family members of a food-allergic person? How did you all help your family adapt to your food allergies? Thanks for sharing!

[twinturbo]

The blood test is only a data point it is not conclusive. You'd need SPTs and in office oral challenges for them. The IgE tests actually do have a high rate of false positives-hence the need for the other data points to triangulate what you need to avoid, and which of them are false positives. It happens, it's normal.

[RudderBird]

twinturbo-I did have an SPT

[RudderBird]

I tried to add some more to my recent reply, but for some reason, it's not letting me post. Anyway. Yes I did have an SPT done which determined all of those things were a positive for me. Not sure what an oral challenge consists of, but I have had more than my fair share of anaphylactic reactions from sunflower...putting a sunflower seed near my mouth would be a death sentence.

[YouKnowWho]

But it would be worthy of a challenge in regards to the others - obviously not sunflower.

My older son is the king of the false positive via SPT and RAST - wheat, rye, barley, oats, corn, rice, egg, dairy, soy, peanuts and most tree nuts.  But his only true anaphylactic allergens are wheat, rye, barley and egg.  He does avoid oats because of the cross contamination with wheat and frankly he is not interested enough in them to invest in a specialty bag of non-contaminated oats (though he does eat some GF items with oats).

Our point being, it's a rabbit hole of avoidances especially if you don't need to avoid them in the first place.

[CMdeux]

Right-- and I think that what they are both suggesting is that the simpler explanation for the recent flare is that something that you had previously been eating just fine is now potentially cross-contaminated due to a manufacturing change that you didn't know about (because it was not divulged on the label).

Sunflower and sesame allergy are both brutal this way-- because they aren't covered under FALCPA, ingredients that shift in flavorings, oils, etc. might not be noted on labels.

The other distinct possibility is that something else has changed in your life and made you suddenly more sensitive to sunflower.

Both of those seem slightly more likely than a suddenly developed grain allergy in an adult-- while possible, it's not as likely as an additional seed allergy in someone who is already allergic to one.

KWIM?  This is like someone with a walnut allergy suddenly developing a milk allergy as an adult-- while it is possible, the more likely thing is other tree nuts, and the most likely of all is a hidden source of a known allergen.

I'm also wondering why your allergist didn't include sesame in someone with your history-- now, it may be that there is a reason for choosing the specific things that were tested.  What did your allergist have to say about your results?  What WERE those results, just out of curiosity-- and did the allergist compare to a positive/negative control, anything like that?

Also-- have you moved recently, acquired a new pet, changed jobs, anything major like that? 

[RudderBird]

Yep, they did do a positive/negative control. I have always been wary of processed foods because of the risk of cross-contamination with sunflower ingredients. I make pretty much all my food from scratch. But had recently noticed anytime I started mixing up my flours for bread (which I make from scratch to avoid any sunflower products in store-bought bread), I would just sneeze and sneeze and sneeze. She did test me for sesame and flax, that did come back negative. No new pets or job. We did buy a house over the summer and moved in, but the house is pretty much brand new. Everything inside...floors, carpeting, appliances, etc are all brand-new.

[CMdeux]

Whew!!  REALLY glad that you made sure that you haven't added sesame to the mix.

Have you called on your flour lately?

Made sure that it hasn't shifted to be run on shared lines with anything you're allergic to?

I mean-- inhalant flour allergy isn't unknown-- sometimes I sneeze and sneeze like that and my eyes will even get itchy if I aerosolize flour while I'm using my mixer; it's likely that I have some degree of occupational sensitization due to bakery work. 

But that wouldn't be like a conventional food allergy, and I have no trouble at all eating those things-- just exposure as inhalants.

I suppose an elimination diet might be worth a try, but elimination of wheat and relatives eliminates a LOT of even 'from-scratch' meals.  Complicates things a lot, which forces you to potentially make "least-worst" decisions with the sunflower allergy-- MOST non-grain flours are run on shared lines with nuts and seeds.

There is a lot of gluten-free stuff on the market, but almost all of it is going to be unsuitable for you given that you have a sunflower allergy. 

Rice and potatoes, of course... but I'm really not sure how you'll find flour to make bread or anything else.

ETA:  I say that having done this when DD was allergic to peanuts, treenuts, eggs, milk,wheat (buckwheat, oats, etc) and possibly sesame.

Avoiding wheat successfully made complete avoidance of the others very nearly impossible-- it was always a trade-off, which I simply could NOT do with the nuts as they were too potent an allergen.  (Actually, so was egg at the time).  I couldn't even use "gluten-free" products without some trade-offs in risk.  I had to buy in bulk (ordinarily a HUGE no-no)... etc. 

Here are some links about the occupational condition I mentioned above:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1504558/

http://www.ncbi.nlm.nih.gov/pubmed/24179680

http://www.ncbi.nlm.nih.gov/pubmed/17351468

http://www.aaaai.org/ask-the-expert/cross-reactivity-grains.aspx

hopefully one of these is helpful to you! 

[CMdeux]

Oh-- this looks as though it might be useful, too:

http://www2.worksafebc.com/i/posters/2007/WS%2007_03.htm

VERY interesting study:

http://www.ncbi.nlm.nih.gov/pubmed/21279645

[eragon]

do you have environmental allergies and if so how are they supported/ controlled. As have impact on general reactions etc.

what about your general diet, ok? are you getting a good balance of proteins , calcium etc? 
You can look at the changes you need to make as a time to explore new recipes and enjoy difference dishes, if you are ok with legumes have you looked at vegan sites.

this will have an impact on your partner and family, there is no escaping that, we have had a few teething problems in that direction ourselves recently.  So trying new foods may be the way to go forward and put a positive slant on this.

hope other posts have given you a few questions to ask your immunologist.

[RudderBird]

Thanks so much for the links! Will definitely check those out.

[lakeswimr]

As others have said, a test by itself can't diagnose a food allergy.  Since you felt you were having mystery symptoms it makes sense that your allergist tested you to suspected foods.  The allergist should probably follow up with oral challenges to confirm things.  Positive allergy test results (both skin and CAP RAST) have a false positive rate close to 90%.