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Topic summary

Posted by twinturbo
 - July 18, 2013, 10:42:45 AM
Celiac diagnoses are done through GI gastroenterologists. Any board certified allergist should refer you to the correct board certified specialist even if it is another autoimmune ailment. My allergist would be concerned if he suspected diabetes, lyme, celiac, rheumatoid arthritis or other hematological issue, but doesn't (and can't) diagnose it. Unfortunately, I can attest to how much time bouncing around autoimmune specialists takes, and costs. But it's still better than getting the wrong diagnosis.
Posted by CMdeux
 - July 18, 2013, 09:21:34 AM
Sara, something that you'll want to be aware of-- a biopsy won't be valid... unless you are consuming gluten regularly. 

Unfortunately.

There is also a genetic quirk that leads to flushing and even mild angiodema with alcohol consumption-- it's a gene variant which is most common in persons of Asian ethnic heritage, but can occur in others.

The timing of symptoms suggests that it is possible that this is allergy.  But-- also possible that it is something else, like the genetic quirk mentioned, or even a gallbladder problem.  I'm really annoyed for you that your allergist just handed you results and sent you out the door.  Sheesh. What kind of patient care is THAT??!!


If you are willing to drive quite a distance, I know that there is more than one very very good food-allergy specialist on the peninsula and up in the bay area. 

Posted by SaraPhillips
 - July 17, 2013, 04:35:44 PM
Right understandably it could have been the travel/greasy food/beer/motion which most of it probably was. But this is not the first and only time I have had this. Of all the other times, it has been one glass of wine and dinner that had cheese in it. Or no booze at all, and been food that has something in it, unknowing or knowing, that I can not have.

As for the swelling of my face. It gets red, flushed and mild swelling. Not swelling that I picture someone with a shellfish allergy for example might occur. And that is when I notice my heart differences as well. 

I have not had an intestinal biopsy as of yet, but this is something that I have wanted to get done just so I know what is going on. When the allergist informed me that I didn't have Celiac, I believe he was basing it on the allergy blood testing.

The vomiting generally comes on quite quickly, not necessarily within minutes but usually within the half hour to hour. I have been sick more times within this last year than I ever have before. 
Posted by rebekahc
 - July 17, 2013, 04:14:39 PM
Generally speaking, a food allergic reaction will start within minutes with very obvious symptoms.  What you describe, unfortunately, is pretty ambiguous.  Could it have been food allergy?  Possibly.  Could it just as easily have been a travel/greasy food/beer/motion combo that set you off?  Yes.  That happens to my no food allergies sister when she travels unless she's super good with her diet. 

The symptoms of bloating, abdominal pain, headache, constipation that you describe really aren't food allergy reaction symptoms.  They could indicate Celiac, though.  Have you had an intestinal biopsy?  That's really the gold standard for diagnosis of Celiac.  When your allergist said you didn't have it, what was he basing that on?  Allergy blood testing or antibody testing?

The other symptoms you describe - vomiting, diarrhea, facial swelling - might indicate a food allergy reaction.  Was your face SWOLLEN or just a little red and puffy?  It if was the former, I'd be more inclined to think possible food reaction.  If it was just a little red and puffy, that could be caused from the vomiting, tiredness, etc. KWIM?
Posted by Sara Phillips
 - July 17, 2013, 04:02:45 PM
rebekahc

last time I had a reaction was on a trip I just took. We went on a 500 mile boat trip with my family and my brother, friend and fiancee and I drank beer the majority of the time, I ate cheesy and greasy things because I get it in my head that 'this allergy stuff is in my head and its not fair, I should be able to eat what I want'! So the reaction  my body gave me was; vomiting(almost overflowed the toilet)-sorry, a mix of loose BM and none at all, nausea, face red and flushed/poofy, belly protruding, abdominal pain, headache....That day I had only 3 or 4 beers throughout the day as well. Started that evening and lasted the whole next day.
Posted by rebekahc
 - July 17, 2013, 03:56:24 PM
It sounds possible you've already experienced anaphylaxis and should have used the pen.  A general rule of thumb is if two or more body systems are involved (ie skin & GI), it's a systemic reaction and should receive epi.  For example, if you had swelling and heart racing at the same time - you've had anaphylaxis.  If you had vomiting and mental fogginess at the same time - you've had anaphylaxis.  Swelling and diarrhea?  You guessed it, anaphylaxis.

WRT the alcohol and exercise - both of those can, when combined with allergen exposure, trigger anaphylaxis.  If you have been exposed to your known allergen(s) - even if you don't think you're reacting - you should avoid alcohol and exercise for several hours or more. 
Posted by Sara Phillips
 - July 17, 2013, 03:36:26 PM
Whew....Ok I will read both of those. Thank you so much for letting me know about them. I feel like with the pen, it may be for more serious times? I am new to all of this, so I don't know when to tell if I am over reacting or if it is something to really pay attention to. You said something about the exercise, what do you mean by that? Stay away or just not exercise while my body is reacting?  The booze I totally understand but at the same time am bummed about.
Posted by CMdeux
 - July 17, 2013, 03:32:17 PM
Things which can turn a moderately bad reaction into a life-threatening, horrible, no-good, very-very-very bad reaction:



  • alcohol
  • exercise.


Do not mix those things with probable or possible allergen exposure; I mention this because your first post mentions beer, getting married, and an active lifestyle.  :)

Posted by CMdeux
 - July 17, 2013, 03:26:56 PM
Yes-- and for a person with an IgE-mediated food allergy, it's about the ONLY treatment for a reaction which is potentially life-threatening.

It's not just shock-- though that is one of the killer symptoms.

Unfortunately, your list of symptoms indicates that unless you've got something pretty strange going on otherwise (hereditary angiodema, etc) you're probably at risk for anaphylaxis with some severe symptoms.

Please see our Welcome Page, which has some really valuable information about WHEN to use an autoinjector.

The Anaphylaxis Grading Chart is a really helpful tool as you put together a working emergency action plan.  Perfect avoidance is really, really hard-- you're probably going to need that plan eventually, no matter how careful you are.

But I'd also urge you to be very careful to avoid anything that you even suspect has triggered severe symptoms on that grading chart.  Epinephrine is good, and it's the best that any of us has for saving our lives--

but it's not perfect.  Avoidance is still your number one tool.

Posted by Sara Phillips
 - July 17, 2013, 03:14:36 PM
CMdeux,

No I did not. Are those used in situations where it is life threatening? Such as anaphylaxis shock?
Posted by CMdeux
 - July 17, 2013, 03:10:20 PM
Did you get a prescription for an epinephrine autoinjector and advice on when to use it?

If not, you should.

Posted by Sara Phillips
 - July 17, 2013, 02:48:12 PM
Yeah that sounds good to me. I would be totally open to seeing someone new. Although I do not have any insurance anymore, so I would probably be on a cash/payment basis. I live in Paso Robles Ca.
Posted by rebekahc
 - July 17, 2013, 02:37:58 PM
The advice your allergist gave you (to reintroduce on your own) is dangerous.  I'm very glad you're okay!  Both skin and blood allergy testing is usually pretty accurate for negative results, but much less so for positives.  A positive allergy test is not a definitive diagnosis.  A good allergist will work with you to tease out which results are true positives in a safe manner.  Generally that will include a detailed food diary/reaction history; testing only those things which the history suggests are suspicious; comparing skin and blood test results to see which align; and finally IN OFFICE food challenges to look for clinical reaction symptoms.

I would highly recommend finding an allergist who is well versed on food allergies (most tend to focus on environmentals and dabble in food allergy) and is up to date with current best practices and research.  If you are comfortable sharing your general location, our members should be able to give you some suggestions of good allergists.
Posted by Sara Phillips
 - July 17, 2013, 02:26:44 PM
Hi there CMdeux,

I got my list from an actual allergist. He did a skin prick test and blood work, this is where I got this information. Basically he told me to avoid everything off the list then reintroduce slowly to see the true positives. The things that are the worst is the dairy and wheat/yeast. I do get really sick, not just as if I have the flu.
Posted by CMdeux
 - July 17, 2013, 02:11:36 PM
Sara, just out of curiosity, who diagnosed you with that (lengthy) set of food allergies?

What kind of methodology was used to arrive at a diagnosis? What kind of practitioner helped you (if any)?

It's unusual for someone with a food allergy to have a lot of difficulty sticking with strict avoidance, though very common with foods that aren't allergens or are intolerances rather than allergens.  It's mostly a matter of just HOW sick you get when you eat the allergens-- with a food allergy, you generally feel really sick-- critically ill, in fact-- sicker than most people have EVER felt, even with something awful like a norovirus or the flu. 

It sounds like you're still quite tempted by one or more of the foods on that list, and your symptoms overlap-- but do not match-- thsoe for an IgE-mediated food allergy.


Quote
My reactions are; throwing up, pain, SWELLING and I mean all over like someone has plugged me into an air pump!,  tired, sad, depressed, cranky, foggy mentality, trouble remembering things, either quick BMs or none at all, irritability, nausea, gas, rumbling tummy, heart racing...this seems to be it.

Some of those symptoms are very unlikely to be related to food allergy-- though as noted above, they can certainly occur as a result of intolerance-- or may be from something else entirely.    Some of those symptoms are potentially VERY dangerous, however-- and I get the impression that you've been managing this on your own and "deciding" whether or not eating your allergens is worth it.  Please consult with your doctor before doing that again!!

If you haven't yet been seeing an allergist with good expertise related to food allergy in particular, I strongly encourage you to do that.  Be sure that your allergist knows about ALL of your symptoms, and how rapidly (or not) they occur after eating an allergen, what else is consumed with the allergen, etc.  Also know that it is only very remotely possible that you have actually become allergic to everything on that list.  Adults can and do develop food allergies, but they almost always are to a set of related foods which are known to be highly allergenic.   Your list includes some things that naturopaths are infamous for (mis)diagnosing patients with, too.

It's good that you were apparently evaluated for celiac.  That should definitely be ruled out with the range of symptoms you listed.  :)