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20+ Food Intolerances...help?!
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Hi,

I’m new to this forum and am need of help.

I was diagnosed with celiac this summer (after 4 years of being misdiagnosed and basically told it was just in my head). After the diagnoses I began feeling so much better, but after a couple of months (4 months ago) I started to feel horrible again. I remained on the gluten-free diet but started to restrict dairy. Again this helped and I thought this was the root to my problems. Guess again... The sickness struck again and so I eliminated soy and nuts. This helped but still sick. I began gaining extreme weight (10-15 pounds in a month) but was barely eating any food. I decided I couldn’t go on with this any longer (I’m only 25) and went to a natural path that did blood testing for food allergies and intolerances.

I just got the results and I’m in shock. I have to eliminate wheat/gluten, cows milk, eggs, beans, peas, soy, grapefruit, pineapple, nuts, yeast and the worst thing possible –RICE (my lifeline since gluten-free). On top of this- I have allergies to melon, oats, salmon, aspartame, chicken, sesame, asparagus, carrots, corn and peas.

I feel lost and am in disbelief – how is it possible to have all these food intolerances and allergies? What am I going to eat?

The natural path put me on a brown rice diet – but I thought that the intolerance test said I couldn’t have rice (when I told her this she said I just cant have white rice?). I don’t really agree with this diagnosis. She told me to go on this and come back in a month. The diet is full of foods I can’t eat and she didn’t suggest anything. I’m really scared to go on this diet because rice just went right through me and so to think of what having a diet that consists of only rice will do to my body is not encouraging. I’m so sick of being sick.

Basically, I’m looking for any help I can get. Anyone else go through this, what do you eat, does the brown rice diet help/work, why so many intolerances???? Even similar stories to maybe make me feel a bit normal – because I don’t know how I’m going to explain this one to people.

Thank you so much for reading and hopefully for some advice!

Hi, and welcome to the forum.

I have time only for a quick answer. The good news is that a lot of these intolerances may be temporary. And you well may be able to tolerate some things that you tested mildly positive to, just not very much of them.

Concentrate on what the tests show you can eat for a while-l-ooks like white fish, potatoes, lots of fruit, beans, onions, garlic, tomatoes, spinach, swiss chard, etc., for starters. See how that goes and then try adding in something you were only mildly sensitive to and see how that goes. It will be a long gradual process, but your system may well settle down and tolerate more than it can now. Here's hoping :)

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With celiac disease it's important to avoid gluten 100% (as you know). If you have anaphylactic allergies to specific foods... for example, if your throat closes up when you eat peanuts... then it's important to be very careful about avoiding those foods too. It's possible that you have another condition going on (IBS, Chron's, ulcerative colitis... there are lots of possibilities)... have you seen a gastroenterologist lately?

If you're really sure that you don't have any other health problems going on, then my suggestion would be to eliminate ONE food at a time for a couple of weeks and reintroduce it to see how you feel. That's the best way to tell if you're really allergic/intolerant or not. RAST and ELISA testing have a lot of false positives, so you need to test your reaction in real life to be sure if that food is a problem or not (if you have anaphylactic reactions then you should only do this under a doctor's supervision).

My guess is that you probably don't need to eliminate all those foods from your diet. In fact, you could cause a lot of problems for yourself by going on a really restrictive diet... if you start eating the same foods every day (because you don't have anything else to eat) it's easy to become hypersensitive :(

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Hey, as crazy as it may be with all the allergies, I myself have 29 other allergies to things aswel. If rice makes you sick then I wouldn't go on the diet. There is other replacements out there and you shouldn't have to restrict yourself to just rice.

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I am assuming these are IgG allergies/intolerances? If so, there is much disagreement about them even among naturopaths. I hope you got a copy of your labs. If not, you should. Each allergen should show a number next to it. That number won't mean much to you, but the Dr. should know what it means. Each food has its own number that indicates an allergy.

As for the rice, that just makes no sense. When my daughter was diagnosed, that particular naturopath told her to eat some things she was allergic to. We don't see him any more.

Our current naturopath doesn't believe in such allergies, but does say if we react badly to a particular food, not to eat it. Our allergist said the same thing.

It is possible that you may have to eat a severely restricted diet for a few weeks or months and then have the test repeated. With IgG allergies, you will often test allergic to those foods you eat the most often. But if you stop eating them, the allergy may seem to go away.

It would be wise to have the test repeated every few years. This is what was recommended to my daughter. Some of her allergies went away, but she developed new ones. Peas and lentils! Also spelt which is weird because she only ever ate it once. This is one food the former Dr. said she could have. At the time she was allergic to gluten. She reacted very badly to it.

Currently my daughter is on a rotation diet which is something you may be able to do now or may have to do in the future. This means she can now eat the foods she used to be allergic to, but only twice a week and not on subsequent days. It's a pain! At first we tried to keep a food journal, but found we can usually remember when she has eaten all of her eggs, dairy, bananas, etc. for the week. The journal does help though because you can make any notations of signs of illness, rashes, nosebleeds or whatever symptoms you might have.

Ask your Dr. about this type of diet.

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I definitely understand what you're going through. I went through the same thing. I initially improved on the gluten-free diet, but then multiple food allergies began to surface. I dropped weight rapidly. Eventually I dropped down to 105 pounds. I was literally starving to death. I was finally hospitalized, and put on IV nutrition. That was almost 2 years ago. I'm still on IV nutrition, and I haven't eaten a thing in almost two years. My case is very extreme, and I don't mean to scare you. You shouldn't think that what happened to me will happen to you. Keep in mind that the blood tests for food allergies are notoriously inaccurate. And even though you have positive results, it doesn't necessarily mean you can't eat those foods. But this is something for you to discuss with your doctor. I just wanted to let you know that there are others out there who have gone through what you're going through. Good luck with everything,

-Brian

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I also cannot eat the fallowing you listed : wheat/gluten, milk, beans, peas, soy, grapefruit, pineapple, nuts, yeast, rice, melon, oats, salmon, aspartame, sesame, asparagus, carrots. Plus no olives, nightshades (potatoes, tomatoes, peppers), tangerines/tangelos, alfalfa, red/vidalia onions, bananas, kiwis, strawberries; maybe broccoli, cabbage, and cauliflower; and I still manage to eat a nutritious diet, with the help of Kirkman brand's hypoallergenic vitimins.

Now you may be a little less upset to know.. A number of your allergies are actually just part of one common lump allergy : Legumes (Nuts, soy, beans, peas, alfalfa), and no one (celiac or otherwise) is not reactive to aspartame, which is practically a toxin.

I was told by an "alternative" doctor to go on a diet that would have me eating many things I react to. The point was to "desensitize" myself. Horrible idea that made me sicker. I don't know what "natural path" is, but I can't tolerate brown rice much easier than white rice, and if you feel the same way, don't let some doctor or anyone else tell you your own digestive system is lying to you. Same applies to any other foods on the diet they're pushing.

I found the only thing that works for me, is trying one new food every 1-3 days, to check for reactions. In doing this, I found I could eat oranges, eggs, blackberries, raspberries, and even corn (all unexpected). Buckwheat tastes like rice, you could try that. Tapioca is a good alternative. Romain lettuce is very nutritious (better than Iceburg). Eat a variety of red meats (ostrich, buffalo, beef, venison), and/or whatever white meat you can tolerate is good; Like turkey, fish, shellfish. I can also eat white onions, which theoretically aid your digestive system. I also take slippery elm. Other foods.. I am still in the process of trying.

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I have celiac, am histamine-intolerant and salicylate-intolerant.

I lived a few weeks on only:

- water

- iceberg lettuce

- potatoes which are low in solanine, like Nicola potatoes

- 100% glutenfree Oatmeal, like Provena Oatmeal from Finland.

- Organic Turkey breast fillet

It was not explainable to anybody but I felt like Superman, feeling my body refresh itself. :D

Now I can tolerate more foods with some supplements im taking.

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I know how you feel--I have had multiple foods allergies for about 15 years. I have finally found what I think is the answer--LDA: Low Dose Allergy Immunotherapy. My advice to anybody who has multiple food allergies and/or chemical sensitivies is to learn about LDA and then search for a doctor in your area who practices environmental medicine and employs LDA in your state -- see: http://www.aaemonline.org/find.php (search for doctors by state). The equivalent of this outside of the United States (mainly in UK) is EPD (enzyme potentiated desensitization). Per my doctor "LDA is the closest thing to a cure for allergies." The shots help the body build suppressor T-cells, thereby turning off allergic reactions and all the histimine and other inflammatory chemicals allergies trigger in the body. The only other way to "cure" allergies is avoidance for several months and then reintroduction on a rotated basis (most allergies are not fixed/permanent)--but, if you are allergic to many, many foods/chemicals, LDA is an easier way out because avoidance is difficult for long periods of time.

Your ND is wrong. White rice/brown rice--if you are allergic to rice, you are allergic to rice--period. Also, people who are allergic to foods should be rotating their foods so as to keep their tolerance of them by not eating the same foods day after day. You can learn about rotation and also LDA at this website:

http://www.food-allergy.org/moreinformation.html

Paula

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I definitely understand what you're going through. I went through the same thing. I initially improved on the gluten-free diet, but then multiple food allergies began to surface. I dropped weight rapidly. Eventually I dropped down to 105 pounds. I was literally starving to death. I was finally hospitalized, and put on IV nutrition. That was almost 2 years ago. I'm still on IV nutrition, and I haven't eaten a thing in almost two years.

whoa! I've been afraid of getting to that point.

There's a list of "exotic" foods that I can eat, at http://camoo.freeshell.org/exotic.html

Those are the only foods I can eat!

You might check some foods now and then to see if you can eat them.

There are all sorts of unusual Central American roots like name' and malanga and cassava that I found I can eat.

I've been gluten-free for 8 years now, and my food reactions have faded a lot. I've heard they fade out in 5-10 years, and maybe in a couple of years I can start eating various foods I've had to avoid.

Laura

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The natural path put me on a brown rice diet

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Were these IgG allergies or IgE allergies or something else? My basic understanding is that the IgE ones are the histamine reactions and are permanent (though they can be helped by allergy shots), where the IgG ones indicate a leaky gut.

The IgG "allergies" come and go. If you have a leaky gut you will become IgG reactive to anything you are eating. This happened severely to one of my cousin's children, and they did a rotation diet for years while he was healing. Basically, you don't eat any one food long enough for it to cause a reaction.

Our family has taken the approach of using the GAPS diet. On the blog linked from my profile you can search on GAPS resources and read more about it. Or you can probably search here and find a bunch of past posts. The idea is that you only eat nutrient-dense, whole foods that are easy to digest and which help restore the balance of gut flora. The diet starts out extremely restricted, then foods are added one by one, slowly.

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The IgG "allergies" come and go.

My food sensitivities have lasted more than 5 years. Someone told me once that you can have a food sensitivity that's IgA-mediated and those are more permanent than IgG sensitivities which tend to go away after a few months.

I've tried foods that I quit eating for 5 years, and I got very sick.

I'm sensitive to tiny amounts, a small fraction of a milligram of protein. I tried a vitamin E capsule made from soy once and I was sick for 2 days. I tried 1/16 of a grain of corn - I sliced it up with a razor blade - and I was severely sick for 5 days, in bed and unable to sit up for more than a few seconds because of back pain, only trudging outside now and then, to let my dog into the backyard to pee.

I've heard the IgE allergies also involve a "leaky gut". That's why children have more of them, they have "leaky guts".

Anyway, I mostly just wanted to post to share my list of "exotic foods" which people who have a lot of food reactions, might still be able to eat.

Laura

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Larapiz, thanks for adding that. I'm sorry if my post came across as suggesting that all of everyone's IgG allergies would go away or aren't severe! That's not what I meant... just that it *can* happen.

Our son showed IgG for all sorts of things, including wheat, barley, oats, and rye... obviously we don't plan on reintroducing those foods! There were lots of other foods on the list, though, too, many of which show absolutely no issues now.

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Larapiz, thanks for adding that. I'm sorry if my post came across as suggesting that all of everyone's IgG allergies would go away or aren't severe! That's not what I meant... just that it *can* happen.

as I said earlier, I was told that IgA sensitivities last for years. I don't know whether this is true or not. Enterolab tests for IgA antibodies to foods in stool samples. I had a lot of IgA antibodies to casein.

Other than Enterolab I haven't gotten food sensitivity testing. The IgG antibody tests are of questionable accuracy, so I've done elimination diets and food challenges. If I get sick from a food challenge, I get quite sick, so it's not ambiguous.

The allergists' offices just seem to know about the IgG food sensitivities that last a few months. I've wondered if the more permanent food reactions are a feature of celiac disease and less common.

I was talking about getting sick from tiny amounts of food, because non-IgE food sensitivities aren't supposed to be to tiny amounts. Brostoff and Gamlin's book on it says that people with non-IgE sensitivities only have problems with normal-portion amounts of food.

So again, Brostoff and Gamlin seem to be talking about something else, perhaps more common. Perhaps what I've been through is less common, a feature of an autoimmune disease - celiac disease.

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as I said earlier, I was told that IgA sensitivities last for years. I don't know whether this is true or not. Enterolab tests for IgA antibodies to foods in stool samples. I had a lot of IgA antibodies to casein.

Other than Enterolab I haven't gotten food sensitivity testing. The IgG antibody tests are of questionable accuracy, so I've done elimination diets and food challenges. If I get sick from a food challenge, I get quite sick, so it's not ambiguous.

The allergists' offices just seem to know about the IgG food sensitivities that last a few months. I've wondered if the more permanent food reactions are a feature of celiac disease and less common.

I was talking about getting sick from tiny amounts of food, because non-IgE food sensitivities aren't supposed to be to tiny amounts. Brostoff and Gamlin's book on it says that people with non-IgE sensitivities only have problems with normal-portion amounts of food.

So again, Brostoff and Gamlin seem to be talking about something else, perhaps more common. Perhaps what I've been through is less common, a feature of an autoimmune disease - celiac disease.

If you look at my signature you'll see all the stuff I can't have. The only IgE allergies of any of that are tree nuts and cocoa. The rest must be IgG. None of this stuff ever bothered me until I went gluten free, and then for several months I just kept reacting to more and more foods. I've been at this level of restriction for 8 months now. I have read again and again that it's important to rotate my diet, but I only have 8 safe foods I can tolerate, so as you can imagine I eat every one every day!

My level of sensitivity is incredibly high too. Like, being in the kitchen when my husband measures and pours corn starch makes me sick for days. It's miserable, and has taken all spontaneity out of my life. I have to bring my own food every time I leave the house - it's not like I can just grab something to eat (besides apples). So, yeah... it's tough. Sorry you're dealing with this too.

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I only have 8 safe foods I can tolerate, so as you can imagine I eat every one every day!

There's lots of food still available to eat. I have a list of foods I can eat at http://camoo.freeshell.org/exotic.html Those foods are pretty much all hypoallergenic.

If you eat foods every day you may find yourself getting sensitive to those foods. I developed new food sensitivities on a gluten-free diet. If you have a lot of food sensitivities it would be a good idea to go on a rotation diet so you aren't exposed to any given food very often. I have a webpage that explains those things at http://camoo.freeshell.org/do.html

I've been gluten-free for 8 years now and I seem to be getting out of the woods. My food reactions are much less severe.

Yes, it's a big pain. And difficult when one feels in danger of being pathologized as obsessive-compulsive.

One can get enzyme-potentiated desensitization - LDA in the United States - for desensitization. There have been a few clinical trials of EPD for inhalant allergies, some favorable, one not. It's also said to work for the "leaky gut" kind of food reactions but of course no research on that appears in Medline.

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PS: If you think you have a long list of food sensitivities, look at my list:

I've gotten sick from every grain I tried - wheat, barley, rye, oats, millet, corn, rice, lemongrass. Also apples and citrus. After I completely eliminated corn from my diet, I found I ALSO get sick from all legumes, chocolate, buckwheat, strawberries, fish, shellfish, the onion family (garlic, onions), potatoes (so I avoid nightshades, except for cape gooseberries), stone fruits (cherries, apricots, peaches), eggwhites, green tea, stevia, unfiltered honey, poultry, flaxseed, pork, cauliflower, broccoli, cabbage, carrots and parsnips, guava, tree nuts, marijuana (hempseed), cranberries, beef, cardamom, sunflower, pepper, as in salt and pepper; turmeric, xylitol and D-mannose made from birch/beech trees, elderberries, dates, ginkgo biloba, yerba mate', acorn, poppy seeds, avocado, blackberries and raspberries, banana, cucumber and melons related to it.

But I still manage to rotate my foods. Just barely - if I lost a lot more I couldn't.

After you quit gluten, your body stops doing so much to mask food sensitivities and new ones may emerge. That happened to me. After an elimination diet in 2003 where I got sick from grains and a couple other foods, I kept eating fructose because I was addicted. It's made from corn. After I slowly tapered off the fructose and quit corn completely, I suddenly found I was sensitive to about 90% of the foods I was eating! That was early 2005. Since then I have lost a few more foods that I developed new sensitivities to.

I just had my first food reaction in years. I ate a cucumber to see if my food reactions are still there. They are :( I got quite sick and I stayed in bed a lot and slept for a couple days.

My food reactions are much less severe than they were in 2003 and somewhat better than in 2005. People have told me these other food reactions last about 5-10 years.

Laura

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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