Food Intolerances-- Who Else? Any Advice?

[westernmass]

Hi All,

I am seriously bummin'! I just got results back from my first round of allergy testing.

Some background: I wanted to be tested for food allergies because I've noticed over the past year I've developed allergies for the first time in my life. Suddenly I have seasonal allergies, and developing chemical sensitivities. Candles give me headaches; I can't use any of my perfumes anymore because they make my skin breakout. When I got pots this spring, I read it's important to treat underlying allergies. I've also read a little about how gluten could be linked.

I figured I'd have one or two allergies, but wasn't prepared for this! Out of 40 things I was tested for, the only thing I'm not at least slightly allergic to is chicken! The foods I'm supposed to be highly allergic to, and advised to stop eating immediately, are: eggs, cow milk/dairy, wheat, gluten, rye, peanut, almond, cashew, garlic, onion, apple, and pears.

This is horrible! I don't know what to eat. Definitely feel like my body is failing me. Has anyone developed food intolerances with dysautonomia? I'm now wondering if I have celiac? Especially because in feb, the only thing I was slightly deficient in was magnesium, and now my magnesium, d, b12 are all borderline low .

Anyone have experience with this? Any advice or tips? I am a garlic-and-pasta-lovin' girl and I am nervous about coping.

[Kellysavedbygrace]

Wondering if This was an IGE test or an IGG?

My son, who had autonomic issues several years ago, showed only allergy to corn on the IGE but sensitivity to about 12 other items on the IGG. In this test result it showed which ones he was more sensitive to than others. We picked the top 2. (corn and dairy) and removed them from his diet. It was a huge improvement in symptoms right away. In fact I've been thinking about getting my IGG tested. Anyway, I'd suggest picking the top 1-3 items and not worrying about the rest. Eliminate those and see what happens first.

[westernmass]

I had both tests done. Only one thing showed up on IGE (the immediate allergy) which I can't remember at the moment as it was "mild".

The IGG (delayed reaction) was where all these popped up. You are right, they do rank them. Wheat, gluten, and eggs and garlic were the worst offenders. Things are ranked Neg, 1,2,3,4. They recommend you stop ratings 3s and 4s right away. The test of my list are the 3s.

How reliable are these tests? I have an appt in two weeks with my primary doctor to see what he thinks. I will do anything I need I to get healthy/healthier, but this will be an entire diet overhaul.

Thanks so much for responding. I've been feeling alone lately

[songcanary]

We all love pasta and garlic LOL. Trust me, when you see the change in your sympoms, you won't care anymore. I have so many delayed allergies I have lost count. But when I modified my diet I really got better. No more mysterious hives, bloodshot eyes, nausea etc. I am also gluten intolerant and eliminating that helped sooooo much. All this I found out with the IgA testing from Enterolab. They rank the results too, which I love--that has been the most helpful. I had IgE skin prick testing years ago and it was basically worthless. Plus, I never knew I was gluten intolerant until now because my serum results were negative twice.

I have discovered foods I never knew existed and it's a good thing. A varied diet is so much better for the body. You can do a four day rotation of some of your allergenic foods and that helps a lot, too. Don't overeat any one thing, either. Plus, try to eat to minimize your immune system load on any one day. That's where the ranking comes in handy. If you google 'multiple food allergies' you will find many helpful links. I did this a few years ago and learned how to cook differently. Now it's no big deal, but I do admit it was hard in the beginning.

[Elenapap11]

I had a worsening of allergies with dysautonomia.I had allergies as a child but never food allergies.This summer i had a lot of serious allergic reactions to food.I saw an allergy doctor on Friday and tomorrow i will have some blood tests to investigate possible mastocytosis.Next week we'll do the tests for food and i am really curious to see what the results will be.So far i have noticed intolerance in cheese,tomato,chicken,fish,banana(and i love this fruit!)and melon.I have GERD and IBS so there are a lot of limitations on what i can eat.I can't imagine what i'll be eating if they forbid all the above.Westernmass i understand your worries about getting the nutrients you need.I have iron and magnesium deficiency(among some others)and i am also worried that if i stop eating certain foods i will have new health issues to deal with.But i guess that i ll have to wait and see till the results come back.Have you checked for mast cell disease?have you checked your triptase levels?

[westernmass]

Thank you all for the responses and support.

No I have not had triptase tested (what's that?) nor been tested for mastocytosis (is this mast cell/mcas?). I will mention both to Doc next week.

I wonder why allergies would appear or worsen due to dysautonomia? Anyone know how reliable the iGg blood test is?

I also dont know if I should stop eating wheat/gluten NOW or continue for the next week in case my dr wants to test for celiac?

[Elenapap11]

High Triptase levels on your blood are a sign of mastocytosis.The doctor told me that if they are high we will have to proceed to a biopsy in order to confirm mastocytosis.I am not quite sure if this is the same with mast cell disease.About celiac tests i remember that i had stopped eating wheat and food containing gluten for a couple of days before i was tested for celiac.(my doctor suggested that-in order to see if i was going to feel any better)The results came back negative so i started eating bread and food containing gluten.

[DoozlyGirl]

Tryptase is one of over 200 hundred known mediators that are released when a mast cell degranulates. There are a handful of other mediators that can be tested, including histamine, prostaglandins, N-Methylhistamine, heparin, and a few others. Mast cell activation is confirmed when elevated mediators are found, the patient has symptoms that signify mast cell activation, and typical treatments, ie antihistamines bring relief.

Mastocytosis and MCAS (mast cell activation syndrome) both involve inapproapriate mast cell activation. MCAS is due to misbehavin' mast cells where mastocytosis is due to too many mast cells. The tryptase is a well known way to estimate the mast cell burden, ie number of mast cells. Patients with elevated tryptase are usually referred for a bone marrow biopsy to confirm mastocytosis. Patients with tryptases levels below that cutoff (20), are then tested to look for laboratory proof for MCAS.

It is common for foods to trigger mast cell activation. Food allergies can cause either immediate IgE reactions or delayed reactions, which are not IgE mediated, but likely mediated through IgG or other pathways. The properties within foods can be the issue, such as histamine, salicylate, sulfa content, etc.

I recently read an article on medline, stating that patients who start GF diets will impact the results. If I recall this correctly, the study came out of Mayo, one of the top GI hospitals in the country. The gold standard for celiac is a biopsy. Blood tests are often not accurate, as false negatives are higher than wanted. A negative work up for celiac could be negative and not indicate gluten intolerance.

Onec your allergy testing is done, you may want to go through an elimination diet to figure out what you react to. It would be wise to avoid GMO and eat as clean as possible. Learn how to trust what your body is telling you.

Good luck on sorting this all out.

Lyn

[westernmass]

Thank you everyone!

Doozly- thanks for such an in depth reply. I will look into everything you said and def. bring it up with my doc.

In the meantime I will continue eating gluten et al so as not to mess up any testing that may happen next week. After that I will follow the advise to start eliminating things according to their rank on the blood work.

I do already eat only organic food (except at restaurants when you can't be sure) and a generally clean diet. Probably too heavy on refined wheat stuff- bread and pasta.

*sigh* thanks again for your help. Any other experiences/insight are greatly welcomed. Once again this forum is one of the only outlets I have for dealing with this crazy condition.

[spinner]

I know from long experience that im beyond hypersensitive to caffeine,alcohol, dairy, coffee, MSG, aspartame, food additives, various molds, and probably high fructose corn syrup, and probably to a certain extent gluten.

Ive elminated most of that, the hardest is obviously JUNK FOOD CARBS and SWEETS.

Theyre loaded with greasy sugary excitotoxins to varying degrees.

Histamine and adrenaline, correct me if im wrong, are considered excitotoxins----virtually

anything your body decides to attack or cannot digest without major problems or pooling.

Today, i read an old post that lemons are LOADED with fecal matter--bacteria that can cause parasitic h pylori long term problems. Probably most people have it in their stomach----where it hides,---but only certain people get very ill with it.

As was said before, where the interesection of automatic nervous, immune, endocrine, neurologic, cardiac, and gastro systems occurs, its a giant jigsaw puzzle trying to figure out what is causing what.

If theres anything "good" about POTS its that we can treat symptoms through trial and error and see what works.

There is even a diet catered to not eating anything with molds coming from the earth and into your food. Thousands have said that helped them. The role of leaky gut syndrome as a trigger for all this has got to be really under rated.

[Dizzysillyak]

I'm overly sensitive to most things on the planet too. I just started taking allergy meds, h1 so far,

and it appears to help quite a bit. I'm just learning about mast cells but I started treating by taking allergy meds.

I'm on the Wahls diet with a few limitations. There really are more foods available to us than we had

in the standard american diet. Have fun experimenting ..

Most celiacs I know tested negative several times before finally getting a positive result so I wouldn't

waste my time getting tested. Gluten doesn't just affect the digestive tract. Theglutenfile explains this.

Tc .. X

[klgpdx]

If you are currently eating wheat and want to be tested for celiac, keep eating gluten until the test. Otherwise, if you go off it, you will feel horrible when you go back on it for the test. That is true for almost anyone, because 70% of the population is gluten intolerant. And if you are celiac, do a blood test first. It tests for a specific gene. If you don't have it, you probably won't have to do an endoscopy.

Here's a good article on why wheat is so bad in general:

http://www.cbsnews.com/8301-505269_162-57505149/modern-wheat-a-perfect-chronic-poison-doctor-says/

It also seems like you may have a problem digesting protein if you are sensitive to eggs and nuts. I'd suggest seeing a naturopath to help distinguish between allergies, sensitivities, and intolerances.

[spinner]

ive eliminated coffee, dairy, MSG, processed foods, gluten, so far. I just do it trial and error, if it bothers me after eating, i get rid of it. Unfortunatley i hav a sweet tooth so im bound to fall for

the banana split once in a while.

[westernmass]

Interesting insight about the protein- I hadn't thought of it like that.

A naturopath ordered the bloodwork, and I will see him again in November to talk about results. I am hesitant to trust him fully for some reason- I also hate having to wait this long to see a dr after getting results back. In the meantime I seem pcp next Tuesday.

Endoscopy... That sounds terrible. *shudder*... Is that the typical way celiac is diagnosed? I have been having ibs symptOms- honestly, for years, but definitely worse (esp nausea and bloating) since I got sick with pots.

[westernmass]

Spinner- and do you feel better? I have already eliminated most processes foods but am waiting to see my dr before eliminating the foods on my list. Gluten and dairy are on that lost so very curious about those. I noticed a while ago caffeine/coffee made me worse (same w alcohol) so I avoid those already as well.

[klgpdx]

November follow-up?? That doesn't seem okay. I forgot to say that almost ever doctor, naturopath, and chiropractor has a different way of diagnosing food allergies/sensitivities/intolerances. And they swear theirs is the ONLY way. Therefore an elimination diet is usually recommended. Or work with one doctor as long as they are helping you get better, and then move on. Because one doctor may tell you to eliminate all those foods forever. Then another may prescribe enzymes to digest protein or something else, and then you could eat those foods. But then another doctor might say that actually you are intolerant of a different food and that by eating it your digestive system is weakened and causing the other sensitivities.

Can you tell I've wasted a ton of money on doctors? I do promise that once you figure out what you should eliminate you will feel better. For instance, I eliminated Potatoes and Wheat two years ago and haven't gotten sick once (a cold that is, clearly I still have POTS)... And I work with kids!!

An endoscopy used to be how they tested for celiac, I'm not sure if it still is. I was tested 8 years ago, so things could have progressed.

[spinner]

To reply, Im "better" in the sense that i prevent flare ups. Caffeine makes me tachy. Dairy made me extremely agitated (release of histamine?). MSG just makes me deathly ill----like you just drank poison.

Im 4 days off gluten, but they say it takes a long time for some to see the results. Im going to give it 60 days, but i have nothing to lose, and it keeps me away from carbs which i need to do anyway. Im trying to get some proper carbs- a nutritionist told me your brain functions run on it, and it can cause liver problems to eliminate it. She said the high fiber lower sugar basic carbs (like sweet potatoes?) are best--maybe a half sweet potato a day.

I was on a modified atkins a few years ago, and didnt suffer any problems, but the key now is balance. With POTS i dont want to lose weight at the cost of decreasing available energy

[Bayly]

Does anyone get a delayed reaction that includes an asthma attack, tremors and waves of intense heat? This happened to me after I ate a Thai dish I have had many times with no reaction. My tongue got thick, too. Sheesh! This hasn't happened in years...since I got MSGed badly. I forgot how scary it can be!

I took an antihistamine and sat up. The symptoms passed and I am better today...just have left over asthma like cough. I'm calling my PCP this a.m. to get a resue inhaler script. I haven't had a bronchial reaction this badly in years, so my script is years old.

I sure didn't need this jolt before I fly for the first time since my dys occurred due to a sudden viral onset in 2005. I'm flying overseas and am anxious. That probably didn't help things when I had a reaction last night.

Let me know if your symptoms are similar due to delayed food reactions. Many thanks,

[westernmass]

^^ wow, no I haven't had that happen. Not that extreme at least. I do get flushes but not asthma attack. Could be MSG in the Thai if you've reacted that way before? Did you have asthma before pots?

My pcp does think I should stop eating the foods on my list. So a new diet for me. I know it will be tough to get used to but the silver lining as many have pointed out is that I'm sure I will start to feel better when I stop giving my body food it shouldn't have!

In the meantime my pcp ordered blood work for celiac and checking tryptase (sp?) levels for possible mastocytosis.

I am now gluten-free dairy-free onion and garlic-free, egg-free, apple/pear-free and nut-free. Sheesh! Wish me luck

[FarmerAmy]

I wonder if you could drink green juices--like a kale smoothie. Have you watched "Fat, Sick, and Nearly Dead"? It is a great documentary and very inspiring!

[westernmass]

Yes I have seen that. Before I got sick I was very into green smoothies one doctor told me to avoid raw veggies though because they are hard on the digestive system and mine is so messed up atm. I don't know if a smoothie counts as raw?

Any ideas?

[westernmass]

Well my tryptase wasn't elevated and the blood work for celiac was negative. More dead ends! Not that you ever want diseases but I know we all want answers.

[songcanary]

Keep in mind that you can still be gluten intolerant even though you have negative celiac blood test results. I am. And many people on this forum have MCAS with normal tryptase levels. MCAS has many of the same symptoms as masto. Keep searching for answers because conventional doctors won't.

[westernmass]

I'm definitely gluten intolerant/allergic. Was just hoping for answers finally! Can you give me any insight to looking into mcas if my tryptase is normal?

My primary doctor has been great about looking into thing for/with me but not a lot of ideas on his own at this point and I've got potentially another 7 months until I get in to see an autonomic specialist.

[songcanary]

Have you done a search on this site for MCAS? There have been some recent discussions that are really good. My own immunologist won't entertain the idea of MCAS yet because it is not a recognized diagnosis by the mainstream doctors. But I am suspicious that I have it based on symptoms and luckily I'm already on doxepin for fibromyalgia, which also helps treat MCAS.