Symptoms Changing?

[GlutenFreeAustinite]

I have been living gluten-free for just over a year and a half, with the assistance of my best friend, who is also gluten-free. After suffering from daily migraines for a year, and gastritis (inflammation of the stomach lining) since middle school, I was desperate for something to work. So I eliminated gluten, as well as dairy.

Fast forward a year and a half. I have never been diagnosed, but I still remain on the diet, as I know celiac is finicky. I have added dairy back in, as I seem to be able to tolerate it now, but have eliminated soy (dx'ed Fall 2011). I began seeing an allergist who claimed to specialize in food allergies. Little did I know she was a recent med school graduate and had little experience with people who don't present typical symptoms. Example: she doesn't believe I truly have an allergy to soy, because "anyone would test positive with a food panel scratch test." Also, because I don't present typical symptoms (ie, true anaphylaxis), but instead have a quick-onset "throat clogging" (still able to breathe and everything, but tight) for my soy allergy, I don't really need to stop eating it or carry an Epi-Pen.

She also doesn't think I have celiac disease. She doesn't doubt, or so she says, that I may have a problem with gluten. But because my symptoms (migraines) prior to going gluten-free were atypical, she doesn't think it's celiac. To prove this, she ordered a blood test. The test came back negative, which I expected, because I hadn't been eating gluten for 18 months at that point. When I pointed this out, she didn't believe me, but agreed to check with a gastroenterologist, who said the same thing: I need to be eating gluten for at least a month before I can be tested.

Lately, I'm not even sure what my symptoms are. I test myself periodically, and always regret it afterwards. Perhaps it's because I lack a diagnosis, but I seek to challenge my symptoms. The first time I ate a small piece of bread: mild stomachache that lasted two days, and a slight headache. Second time, with another piece of bread: sinus drainage, stomachache that lasted three days. Third time with two small spoonfuls of honey mustard that for some reason included wheat flour: almost instantaneous stomachache that has lasted nearly five days and now seems to be exacerbated by food and exercise, a severe migraine that lasted two days, and intense brain fog. All of this accompanied by alternating diarrhea and constipation. (sorry about the details, guys!)

So, to conclude this little rant: what do I do? what tests do y'all recommend? Should I change allergists? (and on that note, should I carry an Epi-Pen for my little soy debacle?)

Thanks everyone. :-)

[Skylark]

I think you need a different allergist. I had a reaction like you describe to shellfish. My Dr. told me to avoid eating it because of the risk of sensitizing worse. Happily, it eventually went away.

My gluten symptoms shift and change but I never like them!

[eatmeat4good]

If you want to continue exploring this with someone else...get a new allergist or nutritionist or naturopathic helper. She isn't helping you. You probably are doing your own research successfully by eliminating and observing reactions. For what it's worth, I believe you are Celiac even if she doesn't. Do you? If you do, then stay gluten free and be really strict. If you don't, then start eating it for at least 3 months and then get tested...but it could still be negative.

I know it can be frustrating dealing with food intolerances. Mine are iodine, gluten, salicylates, soy, preservatives, and dairy. Ugh. But no Dr. or allergist or dermatologist ever helped me figure them out. They are happy to write them in the chart once they are identified however. That is all I need them to do. I think you are your own best detective. But if you want an assistant...I think you need another one.

Migraines were one of my worst symptoms. I was increasingly ill for years until I found Celiac. She is misinformed to say the least.

My Grain Headaches are gone now.

I hope you can figure this out but for sure stay off of soy as long as you are reacting like that.

[mushroom]

Most doctors who don't specialize in celiac are unaware of neurological symptoms from gluten.

[rosetapper23]

Geez...your symptoms sound very much like mine when I get glutened--I think you may very well celiac. With regard to the soy, I also am intolerant of it. I'm feeling lousy right now because I felt sick after eating a tasty chicken dish I've made dozens of times in the past. I kept going over the ingredients in my mind and wondering what could have made me sick. Would you believe that it was the chopped garlic?? I suddenly realized that the only ingredient that wasn't "fresh" was the new jar of chopped garlic I'd bought (I usually crush/chop my own garlic, but my garlic press recently broke). Anyway, when I read the ingredients, I was shocked! It contains soybean oil! What's THAT all about? They seem to sneak soybean oil into everything these days (mayo, tuna, etc.), but I'd never suspected chopped garlic.

[mushroom]

Oh sheesh, do you mean I have to check my garlic for soy now?

[GlutenFreeAustinite]

Thanks everyone for the support--I've been thinking I should change allergists for a while now, just haven't really gotten to it. She thinks I'm sensitive, possibly, but NOT celiac, so I don't really know what I am, but I suppose that doesn't really matter.

I've actually been thinking celiac has plagued my family for some time. My maternal grandmother had questionable fibromyalgia, Type 1 diabetes, Crohn's disease, osteoporosis, and I'm pretty sure there were some other fun diseases in there too. She was tested for celiac, but that was back in the early 1990s, and I'm sure testing was not the same. I myself was diagnosed with gastritis in middle school.

I'm definitely not going to be "testing" myself independently any time soon--I'm just going to wait and eat safely until I am ordered to eat it for the test.

Soy wise--wow. I know soy's one of the 8 major allergens, but I didn't realize how many people were allergic to it! Soybean oil and soy lecithin don't bother me, thankfully, but insert the word 'protein' and I'm a goner.

[BellaBella]

Hi GlutenFreeAustinite,

I'm on my own journey with celiac disease and a gluten free lifestyle, but my 6 year old has life threatening allergies to dairy and peanuts. I am NEVER without an EpiPen. I have read several times that each subsequent exposure to an allergen can cause a worse reaction than the last so it is *possible* that you may experience true anaphylaxis at some point. Knock on wood that will never happen but I would rather carry an EpiPen and never have to use than to need it and not have one. (Even using it unnecessarily is better than using one too late!) They can be quite expensive, even with insurance, but never hesitate to ask your Dr. for a prescription and get it filled ASAP, especially since your reactions make your throat tight already.

Anaphylaxis is the scariest thought for a mother of a child with food allergies. I can handle a split lip, broken arm or stitches but anaphylaxis scares the bejeezus out of me. I wouldn't ever think of being without an EpiPen.

Get one now....just in case.

ETA: My experience is that *most* allergists are relatively unfamiliar with food allergies. And no, you won't always test positive on a skin test, that just happens to be the most reliable test at the moment. Find an allergist that is open to learning more and who stays on top of the research. Steer clear of those who think they know it all because I guarantee they don't. I don't expect every allergist to know everything about food allergies but I certainly appreciate the ones who are open to learning more.

[GlutenFreeAustinite]

Bella-Bella,

Thank you. I was actually talking to my mother about this the other day. This is the same allergist who forgot to give me an inhaler after I was diagnosed with asthma, and I'm wondering if this is a similar situation. Regardless, I probably should have one, even if I never ever use it. And I'm sure it''s terribly expensive.

But dairy and peanuts--that's got to be tough. Luckily they label those, but what a pair.

[vb10]

Oh sheesh, do you mean I have to check my garlic for soy now?

Sorry it is a little off topic... but I have read all food items that you no longer consume "lactose free, soy free" and I have a question for you...

What do you eat? And for how long have you been eating like that?

Looks almost as if you are on Paleo diet.

[JonnyD]

I was diagnosed with Celiac as well as Eosinophlic Esophagitis (EE). I've been gluten free for almost a year now. But, I've often experienced the throat clogging from the EE. For EE, your esophagus reacts to an allergen in your diet and flares up for 12 days. I've recently started a food journal to see if I can narrow down what's bothering me. If you do ever get a scope and biopsies (the only way to get a 'true' diagnosis), EE's something to have them check for.

[mushroom]

Sorry it is a little off topic... but I have read all food items that you no longer consume "lactose free, soy free" and I have a question for you...

What do you eat? And for how long have you been eating like that?

Looks almost as if you are on Paleo diet.

I am a COOKIE MONSTER

Seriously, if you got to the end of sig, I now do tolerate lactose, so dairy is huge for me. Also, you look at the things you can rather than the things you can't - start with the letter A and you 've got asparagus, artichokes, apples, arugula, avocado, apricots, almonds, ahi tuna.... you just have to be a little more creative. And no, I'm not paleo. I hope one day to resume eating some of those other things.

[BellaBella]

I was diagnosed with Celiac as well as Eosinophlic Esophagitis (EE). I've been gluten free for almost a year now. But, I've often experienced the throat clogging from the EE. For EE, your esophagus reacts to an allergen in your diet and flares up for 12 days. I've recently started a food journal to see if I can narrow down what's bothering me. If you do ever get a scope and biopsies (the only way to get a 'true' diagnosis), EE's something to have them check for.

Funny you should mention that.... My son who's allergic to dairy and peanuts also has EoE. He doesn't have the food impaction part of that though but without meds he vomits up to 6 times a day. We visited his gastro on Monday and she said that the same gene is responsible for Celiac and EoE...that's the first I've heard of that! Send me a PM if you want!

[rosetapper23]

Okay, I admit to being on the paleo/primal diet....and it has helped me a LOT.