New allergies. Never expected this

[Peg]

You all know me. I've helped my son manage his peanut allergy for 31 years. He's off on his own for years now. Been just fine. He stopped needing me eons ago as far as his allergies are concerned. Therefore I'm away from allergy discussion.

I've been fighting sinus problems forever. Have a tube in my left ear at age 66!  Have a constant underwater feeling in my head exacerbated by most deep rumbling sounds, and atmospheric changes like AC or heat cycling on in a room.

ENT has investigated EVERYTHING. She's also an allergist. Decided maybe we need to pursue allergy treatment in earnest. I had allergy shots years ago. But I can't have skin testing or shots since I'm on beta blockers which would make an epi pen useless if I were to have a reaction to the testing or shots.

We are going for sublingual immunization not yet ok In the US but widely used in Europe.

She did RAST testing which revealed besides my usual environmentals I'm also allergic to MILK, WHEAT AND EGG WHITES.  This is a total surprise to me. I know Milk gives me gas, even Lactaid. I know soy gives me incredible gas and almonds make my mouth feel funny so I avoid them but eggs and wheat?  Total surprise.

Now I'm royally pissed at their office. She said they'll send me the results but four weeks later they haven't arrived. I called they emailed. Never came. I called they mailed them. Never came. They must be idiots. I'm waiting for them to make my serum which takes three weeks.

Remember my husband is a physician who refers to this ENT. I can't kick up a gigantic fuss. I'm not like that and she's the only one who does sublingual here. I trust her. No desire to change physicians. But I will go there Monday and demand a copy of my testing. And a date for the serum.

After reading here I see many of you think blood testing is not accurate?  I have no allergy sort of reactions to any of these foods except the soy. Is it possible this is an error?  Or maybe the allergy is affecting something I cannot see like my sinuses and ears and head.

I will discuss this all with the ENT once I finally get to see her but any ideas? 

Plus I'm suffering as far as what to eat?  I'm a weight watcher keeping 133 lbs off for 8 years now.

Any suggestions welcome. This is long. Sorry
Peg

[spacecanada]

I don't have time for a long answer but th short one is this: your history trumps all testing. Food allergy testing has a high rate of false positives, so even if testing says you are allergic to something, if you can eat a normal dose and have no symptoms you aren't allergic to it.  Simple as that. So if you can eat scrambled egg whites on toast and be perfectly fine, you aren't allergic to either of them.

As for milk, I am the same as you, where lactase supplements don't help one bit with dairy GI symptoms, only I don't test positive for it on allergy testing, so my allergist deemed it a severe intolerance.  You may have a high tolerance dairy allergy, as that one can have quite a range, including where some can tolerate baked dairy but not plain milk, for instance. Though a true dairy allergy is quite rare to apppear in adulthood.

I hope others will chime in with more helpful information.

[GoingNuts]

Hi Peg, it's great to see you- just not here!

I really don't know that I'd rely upon those blood tests alone. I had the same sinus/ear problems for years- and in fact was supposed to get tubes but I ended up pregnant instead, so we put it off.

I also don't know that taking beta blockers really eliminates skin testing. None of the 3 allergists DS used seemed to think so, and in fact they didn't  even think he needed to change his med in the event of reaction. This may be dose dependent though.  His beta blocker dose was fairly low. 

As SC posted it could be more of a severe intolerance, rather than a true IGE-mediated allergy.  And I don't think SLIT would help that. But I could be wrong.

Good luck!

[Peg]

I think we are hoping the allergy treatments will help my head and sinuses. It's been more than two years now my head is underwater. Very distracting.
I've been off of eggs, milk and wheat for four weeks now and no change in my head but my gas is gone. That could also be because I cut way back on fruit. I should have done it slowly instead of cold turkey.
I'm going to act as if for a while and see if I feel different.
Thanks for the information. You folks here are way up on this stuff.

[Macabre]

My allergist, who does SLIT for environmentals and food allergies, does not use skin testing for food.  I trust blood tests far more than skin for food myself. That said, reaction history does trump everything.

It takes a while for SLIT to works. It's a long process. For instance, for DS for peanut, it's at least a 4-5 year process. Environmentals are probably less, but I am still having a kt of problems with cats after having been in drops for three years.

As far as your symptoms go, I am guessing more intolerance,  but I'm not sure I have a good handle on what all you're experiencing. For shellfish, my symptoms are primarily GI, though I have had other symptoms. There are times when I have worried about cross contamination and have experienced gas, but  when I am reacting, I really know it and have, um, other symptoms.

I hope you are able to get some relief from this underwater experience. That sounds awful!

[CMdeux]

WOw-- so sorry to hear about all of this, Peg. 

I don't have a lot to add to Mac's post-- other than I'm jealous that you have access to a SLIT provider!! 

It is awfully puzzling that your ENT can't figure out a reason for your symptoms.  It sounds miserable.

But then again, I agree with Mac-- when I've experience those kinds of symptoms from a shellfish reaction-- and I have-- most recently only last week, in fact-- they tend to be VERY transient and respond well to antihistamines.

I definitely know that they are allergic in nature. 

[lakeswimr]

I'm very sorry you are having those symptoms.

Testing alone can't diagnose food allergies.  In the absence of symptoms, testing is not recommended.  The symptoms you describe don't sound like food allergy symptoms.  The fact that you pulled the foods and didn't improve makes it sound even more like these are false positives. 

Testing, both skin and blood, have very, very high false positive rates and by themselves, mean very little without reaction history.  KWFA has a good webinar on this subject.  I'll try to post the link for you. 

it's common the USA for ENTs to diagnose just based on test results.  I don't know why this is but it reflects a lack of being up to date on food allergies.  Gas from soy might not be an allergy but just that soy can be hard to digest for many people.  If gas is the only symptom, that doesn't sound like an IgE allergy at all to me.  Almonds making your mouth feel funny could be OAS or IgE, though.  I would want to food challenge in the doctor's office  and see if you should be carrying epi pens for them. 

Based on what you have said, I think slit would be a waste of time and $ since it doesn't sound like these are allergies, except perhaps the almond, which might just be OAS.  You might ask to do the component test for it if one is available.

My child did peanut OIT and now can eat unlimited amounts, by the way.  I don't know if you have the option of OIT there, but we did it for two foods for him so far with great success for each!  (mentioning it in case your son might have the interest and opportunity.)

I hope you get to the cause of this.  It sounds like maybe sinus pressure.  Do you have pets?  An older home that could have mold?  I react strongly to many animals, mold, also to dust and more (no IgE food allergies, though, even though in the past I tested positive to tons of things.  i was not ever IgE allergic to food.)

[lakeswimr]

KWFA video on testing.  Has info about the high false positive rate and that testing alone can't be used to diagnose.

http://community.kidswithfoodallergies.org/blog/food-allergy-testing-what-you-need-to-know-video-and-resources

[eragon]

my first thoughts (apart from what a horrible food list to remove from diet) are:


have you had environmental allergies ruled out? Very common causes are dust mite and  pollen. eczema in ears is common and very irritating, (my husband esp in winter will wake up in night to stick a finger in his ear and shake the bed up and down and wake me up!)

Ruled out viral infection?

Wheat and milk have been linked to problems like yours, although haven't heard of any studies, but many have noticed improvement in ears after removing a food for other problems.


how have you been advised with regard to removing from diet? all foods on list or gradual?

what meals are you finding difficult? perhaps we can suggest substitutions?

It may only slight consolation, but am 50 this year and finding my eczema is flaring up much like it did when I was a kid. Am just getting my normal face back after reacting to a 'sensitive' face cream. I am also applying steroids to my hands and arms. My hands look about 80 at the moment. When we regard our wonderful allergic offspring we can only consider that the apple doesn't fall far from the tree!

[Doc Josh]

Many people, as they age, develop allergies that they never had earlier in life. The onset of allergies are caused by a the digestive system being out of balance.  As people age, the parietal cells in the stomach wane in their ability to produce strong enough Hydrochloric acid (HCL). Strong Hydrochloric acid is absolutely necessary for maintaining a sterile environment in the stomach, and for breaking down nutrients (Chyme).  Strong HCL is also required for assisting the Peptic enzymes in the breaking down and conversion of proteins.  Many proteins are allergens and will cause allergic reaction (inflammation), if they are not destroyed by the HCL and peptic enzymes. The HCL and pepsin break down proteins into peptones, which are the building blocks for the amino acids. 
Pepsin is most active in the conversion process, when the strength of the HCL is at 1.0 pH.  When the strength of the HCL diminishes, there is less conversion by Pepsin.  At pH 5.0, the peptic enzymes are no longer breaking down proteins, at all.  When this occurs, raw unsterilized and unconverted nutrients dump into the small bowel, resulting in allergic reaction.
The reduction in the strength of the hydrochloric acid is called Hypochlorhydria.  In extreme cases, where the parietal cell are not producing any acid, the condition is called is called Achlorhydria.
A tipoff for both of the conditions is, a person well be deficient in many vitamins and minerals, especially Vitamin B-12.  The parietal cells produce acid, they also produce the intrinsic factor.  The intrinsic factor is a glycoprotein, necessary for absorption of B-12 in the small bowel.  When the cells wane in their ability to produce sufficiently strong HCL, they also wane in their ability to produce the intrinsic factor.
Hypochlorhydria will cause allergies and allow bacteria and pathogens to enter and flourish in the small  and large bowels.  The best methods for diagnosing Hypochlorhydria is with a pH diagnostic test, pH capsule test, or pH gastrogram.  A pH diagnostic test will tell the doctor why you are not processing your food properly.  It will also tell the doctor if you have heavy mucus in your stomach from infection, or ulceration, and if you have duodenal reflux (pyloric insufficiency.  There is a lot of info on a blog, called {link removed by admin}, it would be worth checking out.

Consider this your warning, Doc Josh, the next step will be to ban you.