Struggles with food (way TMI)

So long as I don’t eat, I don’t get sick.

It’s only when I eat that my body starts reacting in negative ways. So… I just need to not eat anymore, right?

I had some food allergen testing done last year, but lately I’ve been thinking that I should do one of those food sensitivity tests. I don’t think the food allergen testing told the full story.

Food Allergen testing tests for IGE Deficiency, which I already knew I had prior to the test. Food sensitivity testing, on the other hand, tests for IGG Deficiency, which is a completely different Immunoglobulin in the body. What I’m wondering is, in addition to my food allergies, if there might be food sensitivities that are contributing to my headaches, muscle aches, extreme exhaustion, gut issues and so on and so forth.

As much as I know what I’m allergic too and what I really need to avoid when I’m eating, I’m also finding that I’m still having issues, regardless of what I put into my body. For instance, most days I wander around this world with a pretty gnarly headache. And I just tolerate it… as it is. I had a CT scan done in 2019 and it came back as normal, so, the doctor just attributed my headaches to stress. The thing is, though, the headache doesn’t normally start until I’ve eaten something. If I just avoid eating… I don’t get the headache. This is only small example of what I’ve been dealing with, but I think it’s an important one to note.

The doctor was so quick to diagnose me with IBD. The problem is, the majority of the symptoms related to IBD that I can find, I don’t have. No, I’m not a medical doctor, so I can’t technically diagnose myself. But, I do know myself and how my body functions a lot more than a doctor who’s seen me twice, for no more than 10 minutes each time and never done any tests.

I’ve been doing some research (thanks to various sources… in spite of Dr. Google being a scary place sometimes) and it turns out that food allergies and food sensitivities can affect the body in completely different ways. Duh. I know, go figure. But, allergy testing is ONLY for IGE deficiencies. You cannot test for IGG deficiencies at the same time. They are completely separate tests.

I am wondering if I could do some food sensitivity testing, if I could get that IGG deficiency testing done, if it might help. Even if they have small effects on the function of my body, if there’s a lot of them, or if it’s something I eat frequently, it could be causing me more harm than I realize.

If anyone reading this has ever taken food sensitivity testing, what was it like? Did you get it done through public health, or privately (through a private clinic or corporation)? Did it help?

I’ve been on a two-and-a-half year long journey of trying to figure out the root of my issues. I’ve been misdiagnosed on four separate occasions that have been proven, and I believe that the diagnosis of IBD was also not accurate. And, as mentioned above, I was never tested for it. I’m trying to do my due diligence, advocate for myself and get to the bottom of what the heck is wrong. I’m wondering if this food sensitivity testing might be a beneficial step for me.

84 thoughts on “Struggles with food (way TMI)

    1. I kept a food diary for over a year and presented it to the doctor both times he saw me. His answer was to refer me to a specialist and the specialist’s answer was to tell me that it wasn’t food related, and thus began my first two misdiagnoses.

      I do still keep track of my food, but I haven’t shown one to a doctor because I’ve been feeling disheartened not getting actual help and doctors just looking at me like I’m a hypochondriac or just looking for drugs…

      Liked by 2 people

      1. Well it never hurts to try again. Trust me I know how hard it is to get turned away like your just a hypochondriac but if you don’t keep asking you will never get any helpful answers.

        Liked by 2 people

      2. My struggles with food is one of the reasons I’d like to move to a city (in my case, Calgary). I’m presently in a small town and the only option is one doctor, at one clinic. I can go to the hospital over an hour away, but I’m not sure that I’d get anything more from an ER when I’m not technically in an Emergency situation, you know what I mean?

        I’m hoping that I can relocate soon. I’m hoping that relocating will allow me access to more medical practitioners and resources that could help me because the doctor here is kind of an asshole.

        Liked by 1 person

      3. I have! Thank you for the link!

        I worked with a nutritionist for 9 months and the elimination diets I did with the nutritionist was what actually lead to me getting the allergy test ordered – she wrote my doctor an official note proclaiming I needed allergy testing for specific foods based off what I told her from my food diary through the nine months of elimination dieting. It’s all so convoluted and stupid.

        Liked by 1 person

      4. I actually heard very similar to this from Minna the dietician— her clients complaining about similar stories with doctors. It doesn’t sound surprising at all.

        Liked by 1 person

  1. My husband is allergic to yeast which means he has to live off of the candida diet. Not sure if you’ve ever heard of that, but’s it a real challenger. We started using Digestion Plus and it has been our miracle. It has prebiotics botanically derived from chicory root support a healthy gastrointestinal tract and help feed the probiotics in the
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    Liked by 1 person

    1. I have heard of candida before, only because one of the major symptoms to that is/was listed as sinus infections…. I’ve had sinus infections consistently and persistently for two and a half years. I had a nutrititionist for a while and she questioned it but without a test was ultimately uncertain. I asked my doctor about it at the end of 2018 and he assured me it wasn’t that though. Though I’m not really sure how you test for that because he seemingly wasn’t willing to even discuss it.

      Thank you for the information. I don’t have a facebook account to my name otherwise I’d find you you on facebook to ask more.

      Liked by 1 person

      1. Thank You! I had a Facebook in College but when I got into Public Relations I deleted it because Journalists were using my facebook as a means to contact me when I wasn’t answering my phone. Deleted facebook and never went back.

        Thank you for your email address. I might email you after everyone goes to sleep tonight.

        Liked by 1 person

  2. “I’m trying to do my due diligence, advocate for myself and get to the bottom of what the heck is wrong”

    —This is the right thing to do. So much of the time we have to do this. Not even all specialists always keep up with the latest advances in knowledge—I’ve found myself being more informed on some things. They could just be too busy.

    “But, I do know myself and how my body functions a lot more than a doctor who’s seen me twice, for no more than 10 minutes each time and never done any tests”

    — Yes, we should never underestimate this. Never undervalue your personal experience with these things.

    You have both the sensitivity and analytical intellect needed to make your own informed judgements/suspicions on these things, to add into the mix of ideas coming from doctors too. You can definitely help to lead the doctors to the correct decisions—I’ve done this a few times.

    Personal experience and self-advocation are invaluable. Good for you and I really hope you do get to the bottom of it 🤗.

    What I do know about this subject is that food deficiencies are huge— more and more I’m hearing how medicine is coming around to this fact, and that dietary improvements often are enough. It really takes quite a bit of effort to make sure we’re getting everything we need. I heard recently from a dietician how she has clients with eczema/psoriasis cured with improvements in diet. So my advice would be to learn more about diet in detail— this is a work in progress for me.

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    1. I’ve been on soooo many elimination diets over the past two and a half years. I’ve cut out sugars, I’ve cut out carbs, I’ve cut out starches, I’ve cut out nightshade vegetables, I’ve cut out spices, sauces, condiments of all types. This is in addition to not consuming dairy or gluten. I just… I know that I have a plethora of allergies, but I’ve also noticed that even with avoiding these allergens, I’m still struggling with eating. It’s really frustrating. And I guess I’m just venting now, but yeah. If I could have a test that could tell me for certain so I didn’t have to try these random elimination diets anymore, that’d be mighty helpful.

      Liked by 1 person

      1. I have persistent B12 deficiency. I’ve actually written about it on this blog before. Every time I get blood tests done I’m deficient in B12. I get shots four times a year and I take a supplement every day, and still, low B12. It’s one of the side effects that leads me to believe it’s not IBD. I will say, the first blood test I got back in Nov 2017 when this all started, when they told me how low my B12 was, and all the ways it ‘could have been affecting me’, it made a lot of sense as to why I was struggling so hard at the time. I actually wrote a post about B12 last night but didn’t end up posting it.

        Liked by 1 person

      2. Wow! Ok, that’s interesting indeed. And how coincidental about the post last night. Some vitamins/minerals are needed for the absorption of others. Perhaps researching that line would help. Either way, it seems that getting to the bottom of why it’s not being absorbed would be a big help.

        My gut tells me that regular booster shots spread so sparsely are not going to make up for true proper processing of B12.

        Perhaps there are specific dieticians out there who can help with it? The one I saw speak truly seemed to know her stuff, and some of them will write books.

        Liked by 1 person

      3. I could talk about this forever, sorry! I was writing about it last night because I’ve been struggling mega-hardcore the past week, more so than I have in the past year and my best friend suggested I might want to go get another B12 shot. I don’t know… the Nutritionist that I had after I was diagnosed with Celiac disease said that the malabsorption should have stopped when I’d been off gluten long enough for my gut to heal. But the malabsorption continued which is another thing that leads me to believe something more is going on….

        Liked by 1 person

      4. Yeah, I can imagine you could! Hope I haven’t overwhelmed. I’m always drawn to problem-solving.

        Well I find this subject really interesting, and I need to do my own diet research anyway, so if I find out more I’ll let you know.

        The impression I get is that there’s nobody out there who understands how all of this works— it’s such relatively new knowledge, because we’ve been in a great big dietary experiment in the modern world over the last few decades especially. So therefore it’s really necessary to keep finding new sources and seeing new people, until we get to the bottom of things. I’ve heard stories directly from people, where all it took was to see one more person with the right knowledge. Have you tried posting on reddit? I think that’d be invaluable for connecting with people who’ve been through similar.

        I’m going to bed now, hope the discussion helped! I found it extremely interesting :). Good luck!

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      5. It’s an issue a lot more common than people know about. The first doctor I had who told me about it said a lot of people chalk up their exhaustion and headaches to not sleeping enough… which could be true but the lack of sleep could be cause by lack of B12. The headache could be caused by lack of B12. Persistent bruising could be caused by lack of B12. Heightened anxiety can be caused by lack of B12. You know how there are super foods? B12 is the vitamin equivalent

        Liked by 2 people

      6. You’re right, B12 certainly seems like a super-vitamin! Definitely makes sense for you to look all possible ways to try to fix that :), then look at the next things if you still have issues.

        Have you heard anything about the job, or have they indicated how long?

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      7. Thanks for these. Thread-dropping and finding your discussion of B12 fascinating! Wondering about its potential relationship to fibro, connective-tissue disease and chronic pain. May hit you up for more info!

        Liked by 1 person

      8. You’re welcome :). By all means thread-drop!

        Please don’t view me as an expert on this though! I’m really not :D. I don’t know much about B12 personally, and haven’t got around to properly researching it yet.

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      9. Also anxiety can mean that our body absorbs less of these nutrients, so we need to consume even more of them to make up for it. So much of mental health can be linked to the gut because the gut (intestines) is where things like Serotonin are made— because that is the site of the raw materials. When the construction site is messed up, those things can be messed up too. So sorry if I’m repeating stuff you know.

        Liked by 1 person

  3. You should do the Medical Mediums protocols. Lots of people healing some serious chronic illness. Do you drink diet soda? Eat anything with “yeast extract “ on the ingredients list? It’s another term for MSG. Aspartame in diet soda is no Bueno. I
    I could go on but that’s enough out of me for now.

    Liked by 1 person

    1. I have been preaching about the evils of sugar-substitutes since I-don’t-know-when!!!! NOTHING artificial is going to “best” the natural. If you want sweet but less weight, eat SUGAR (raw) but LESS of it!!!

      I firmly believe (with no scientific proof) that a bowl of 800 cal of artificial stuff is going to be way more fattening than 800 cal of natural stuff. Our bodies don’t know what to DO with aspartame, sucrolos, monisodium icantprounounceit, and so on.

      People have always asked me how I can be so thin and eat ice cream in bed every night. I have been blessed with the metabolic rate of a hummingbird BUT I am also eating ice cream. As in milk, sugar, strawberries and a few other things. NOT aspartame with no-fat pretend dairy, artificial this, red dye number 3, mono-something for shelf life and on and on! If you stay away from artificial food, you can eat a lot more of the real stuff! (Side note: our conception of what women in particular but people in general need to weigh to be attractive is warped.) (Second side note: the rate of obesity has eclipsed 50% of adults in the US. Also warped.)

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  4. I’m in the States and I know our medical systems are different but by all means keep advocating for yourself. It took me over a decade to get my Multiple Sclerosis diagnosis bc doctors here saw an overweight woman assumed diabetes and when that came back negative refused to look further and just prescribed weight loss even though I knew there was something else very, very wrong.
    The symptoms you describe could point to any number of things and since I’m no doctor either I won’t give suggestions, I merely wanted to say that you are the best judge of what’s happening with and inside your body as you stated in your post. I think that’s very astute of you. I hope you’re able to find some answers. I know what it’s like to have to live each day feeling like crap and not knowing why.
    Also, please eat. Your body needs fuel to fight whatever is happening to it.

    Liked by 3 people

    1. Thank You. I really appreciated your comment and I certainly hope it doesn’t take me ten years. I can’t imagine the struggles you went through in that time.

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    1. Did you know that as much as 94% of Caucasian’s have difficulties digesting lactose? A specialist I saw once sai there’s a specific gene that most Caucasian’s are missing that is responsibile for their inability to digest the sugars in lactose products.

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      1. We are one of the few species that eats into adulthood what is generally considered to be “baby food” in other species! Milk is definitely “baby food” though I don’t know if that extends to all lactose-containing foods. Tough Dairy Trivia for $500, please Alex.

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  5. Sorry I don’t know anything about food sensitivity tests. However, when mentioned IGE & IGG can remember seeing bloodwork test result about these. I will have to go back & look at the results.

    I can remember the doctor at the telling the results weren’t alway reliable, but then he is a doctor who up & vanished after I had been seeing him for 14yrs, so who knows if that was true.

    Good luck I hope they can figure out how to get you some relief.

    Liked by 1 person

    1. Thank You. I hope that I can find something too. I have blood test paperwork (because I get them done so often) and none of my paperwork ever has IGG listed as an option. I have heard that IGE can be really unreliable – apparently it’s not reliable unless you go into it aware of what you’re allergic to already.

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  6. I have no advice to offer, never experienced anything close to that, but really sorry! Not being able to eat certain foods, let along not being able to eat … sucks! The only time I had experienced something like that was during my last couple of weeks of my pregnancy with twins – the body could not process anything, and I felt fine only when I didn’t eat and didn’t drink. I ended up having an apple and two glasses of kefir a day… the twins were eating my body, and when I came to the hospital the nurses were saying – oh, you are so thin! which sounded hilarious when addressed to 8-month-twins pregnant 🙂

    Liked by 2 people

    1. I’ve heard of stories similar to that with my friend’s who’ve had babies – though never with twins. I could imagine you’d have been quite the sight having two babies and probably getting skinnier because of not being able to eat anything.

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  7. You should look into taking digestive enzymes with meals, and high potency probiotics (50 billion) to restore your gut flora. Doing this for to months will alleviate most our intolerances. Look into it. It “cured” all my wife’s fructose intolerances in three months.

    Liked by 1 person

    1. I was taking digestive enzymes for a long time, but they just got so expensive that I haven’t had them in about 2 months. I do have probiotics every day and while it does help me digest food, it doesn’t really allieviate the other issues. That’s wonderful to hear that it helped your wife’s fructose intolerances. I previously worked with a nutritionist and she said depending on what someone’s issue it is, it can take several years to properly heal their gut.

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  8. I’m sorry we live in a toxic world and our food supply sucks and that it’s affecting you. I feel like shit no matter what. I hope you find answers V. I know you address the Universe in many of your posts, so I assume you believe there is some kind of “power” greater than us. I am constantly asking for help and guidance from the powers that be. It is frustrating to not have answers and to feel like sewage day in and day out. I so feel your pain. ((((HUGS))))

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    1. I’m sorry if you’ve been going through something similar. It’s really a horrendous feeling to feel like you need food to survive but food is also contributing to your being less than optimal self. It’s a vicious circle.

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      1. We don’t know what is causing my extreme fatigue and body pain. We are still having tests done. I’ll see the neurologist again today. Yesterday I ate junk food and had champagne because no matter what I eat I feel like poop. Salad or junk, my body feels the same.

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      2. Have you considered fibromyalgia? I have no idea what your other symptoms are but whenever I see “extreme fatigue and body pain” I have to ask. I got leveled at the age of 40 by Fibro. After having my second shoulder reconstructed (left first, then right 11 months later) I just couldn’t get out of pain. And it was EVERYWHERE. And somehow nowhere at the same time. And while pain is the most well known indicator of fibro, for me and almost everyone I know of living with it, it is the fatigue that’s the killer. Please please please get it checked out. I am now about 10 years out from diagnosis and am starting to lead a new life! My pain is controlled and the fatigue is gone. I have my life back BUT that is only because (imho) I was diagnosed very quickly and treated very aggressively, very early. I still have flares where I just cannot…anything. And they suck. But they are fewer and fewer than before, shorter in duration, more *predictable* and more manageable than before.

        Sadly a diagnosis of fibro is pretty much a diagnosis of exclusion but please consult with an anesthesiologist and get into pain management NOW while still pursuing a clinical diagnosis. You shouldn’t need the diagnosis for treatment if you have been struggling with this for more than 3 months. That is the marker for “pain without a visible lesion” and when it is considered to have crossed into the “chronic” stage.

        There is hope. I promise.🐾❤️

        Liked by 1 person

      3. Thank you! I am working with a fibromyalgia clinic. So far I’ve had blood work, an in clinic sleep study, 3 MRI’s, a stool test, a DNA test to see how I metabolize certain medications and I’m going to a pain clinic this coming Monday. So far we have found Epstein Barr Virus, vitamin deficiencies and a cyst on my spinal column. I’ve been working with a neurologist and sleep doctor along with the fibro clinic. We started all of this in September. It’s been quite and journey, both physically and mentally. it’s mostly why I started my blog, it’s a good place to track my journey. I’m glad you found help right away and hope you continue to thrive! Thank you again for taking the time to comment 🙂

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  9. My daughter was having problems like you describe. She finally went to a natural path(might have the exact name right).
    Found out she couldn’t tolerate gluten. She changed her diet, well within parameters being that she is diabetic. She changed how she bakes, found a different type of flour.
    I haven’t heard her complain she has done all that.
    I do know that the flour she buys is available at “Bulk Barn”.

    Liked by 2 people

  10. I have thought about doing myself – I am a firm believer in issues caused by what we eat…
    And also curious if changing someone’s diet to fit their own bodies would change symptoms of ailments or mental issues?

    I, myself, have NOT tried – but I’m curious… will have to wait for me – I have a lot on plate right now, don’t have the time or money to do that.

    But I do have friends who have done and swear by it – they say it absolutely makes them aware of what foods effect them and removing from their diets has been a tremendous help to their well being and comfort.

    I have looked into it and the site I was reading was:
    https://www.everlywell.com/products/food-sensitivity/

    So maybe one day I will try myself – I am curious. I know I can not have any artificial sugar – I get instant headaches with that. And dairy as I age – yeah that’s not being nice to me either lol

    Good luck and if you do try – I’m excited to hear how goes for you!! ✌️ … that’s a really interesting blog post idea!

    Liked by 2 people

    1. The Everlywell test was something I came across when I was doing research for myself with respect to the IGG deficiency. I think, if it’s available to Canadians, I might take the test when I start working again and can afford it. I’m interested to know, with certainty, what my body is sensitive too.

      Liked by 1 person

  11. Since you mentioned vitamin B12 deficiency… Taking isolated vitamins as supplements or shots doesn’t really help, can even make things worse, because everything is interconnected, meaning whole foods not only contain that specific vitamin you’re deficient in, but also other components that help you absorb that vitamin. If you take isolated vitamins, it can cause further imbalances and malabsorptions. Vitamin B12 is found in animal products, so if you don’t eat meat or fish or something like that at all or only rarely, you might get deficient in vitamin B12. Also, if you eat other foods that cause trouble, some nutrients might not get absorbed properly, even if you do eat whole foods as well.

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    1. The doctor recommended me getting Vitamin B12 shots because of my body’s lack of absorption of the supplement when I was taking over the counter. I’ve been eating dairy free for about ten years and gluten free for about two years. Because of the limitations those two restrictions put on my food, what I eat tends to largely be whole foods as I’ve found very little packaged food on the market that meets the requirements. I wish I knew how to make my body better absorb B12, I know for the 48 hours after getting the shots, I feel like a new human and full of energy and like all is good. Then it kind of just fades… so I get what you mean saying that isolated supplements and shots don’t help a huge amount.

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  12. Never had any of the stomach issues, other than suffering the upset stomach from extreme anxiety. It’s also impacted my relationship with food, I violently swing between weeks of under-eating to weeks of over-eating and neither can have a particularly great impact on my body.

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  13. Hey! This is not judgement at all. Just maybe something to consider….also feel free to ignore me of I’m totally off base 🙂 but after reading your post and some of the comments, I started to wonder what your relationship with would was like growing up or before you started having symptoms.

    There’s research and treatments being done for people who have sensitivitoes that are actually made worse by disorder eating or diagnosable eating disorders. Depending on a person’s relationship with food, elimination diets can easily slip into disordered eating that’s actually detrimental to health. I totally get if that’s not your experience, but I don’t think enough is really shared about the negative effects. So I wanted to throw it out there.

    Have you seen a registered dietitian? There’s also a really good podcast that explores some of this stuff with folks in both medical/nutrition/psychology fields of you’re interested.

    Liked by 1 person

    1. Honestly, I’ve never really thought about it from that aspect. I would definitely say that I’ve always been an emotional eater, but I never suffered from anything like anorexia or bulimia or anything where I didn’t want food. Right from when I was a kid, I always was the kind of person/kid who got sad and wanted to eat, got angry and wanted to eat, and so on and so forth.

      I saw a nutrtitionist for about 8 months when this first started happening. She helped me a lot with honing down the specific foods that cause me the most issues, but other than knowing what foods give me issues, she can’t really help diagnose me with why that’s the case.

      What’s the name of the podcast you’d recommend? I’d love to give it a listen!

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      1. That makes sense. The podcast is call Food Psych! There are definitely episodes about the relationship between food, dieting, disordered eating, and health conditions like IBS, endometriosis, and others. Hope you find it helpful.

        Liked by 1 person

  14. I’m sorry you are going through all of this. I have had a similar journey. Muscle aches, headaches, acne, fatigue too boot, then multiple misdiagnosis (epilepsy, rheumatoid arthritis). It wasn’t until 2017 that I found the right doctor, a nurse practitioner. In a visit I looked at her with teary eyes and said “Look, I am no longer living life. Everywhere I go I feel like I am going to fall down and never get up.” She replied with “Oh honey, I bet you have severe food allergies.” I did and more. I found I am allergic to milk protein (not lactose intolerant, but severely allergic), so not dairy products for me, have celiac, and am allergic to shellfish. I am also allergic to mugwort and dust…. Next week I find out if I am allergic to oil as well. I also had some odd eating habits and could never figure out why some people said “Oh I feel good after eating chic peas.” or such. I know now that is is because I have had lifelong food allergies. Milk protein is a tricky one, there is milk product in so many things. I really hope you get some answers. Again, I am sorry you are dealing with this it is not fun at all.

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    1. I’m sorry that I missed this when you wrote it. I’m just seeing it tonight and I wanted to respond. I tell people that I am lactose intolerant, but the test show that I’m actually allergic to the sugars in lactose products. So I understand what you say when you’re allergic to the protein. The doctor told me there’s distinct sugars that are found in dairy products that you will not find with any other animal product. He also said that allergy is why I have such a difficult time eating any red meat. I tell people that I’m lactose intolerant because it’s a lot easier than trying to explain to them about the make-up of dairy products and how there’s proteins and sugars and nutrients, etc…

      I also have Celiac disease. So you and I sound like we deal with very similar issues. Though I don’t know what mugwort is, I am definitely allergic to dust. When I had my airborne allergens test, my arm swelled up in the spot where they poked me with the dust tester.

      Did you find out if you’re allergic to oil?

      I find that what my allergies mean for me is that I need to eat whole foods, and have to stay away from anything processed. If I do eat a muffin, I can’t just go buy it from the store, I need to make it myself so it’s gluten free, dairy free, nut free, etc… I bet you run into a lot of those same issues, hey?

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      1. HI V! I found out I am allergic to corn on top of my other allergies… So corn (which many oils are derived from), milk protein, mugwort, celiac, and shellfish. Its so lame it’s almost funny. When I go out to eat I’m sitting there like “mmmmm, the water option looks good.” Insert facepalm emoji here. Same issues with store bought, but like you I am learning to make everything on my own. On a good note, my formerly frizzy dry hair is turning silky and curly!

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  15. So let me ask you this. Why would you *not* have the testing? What, if any, is the downside? Glancing through the comments and not really knowing anything about your situation other than this specific post, it seems to me that the only barrier would be to actually have a doctor order it – which in many cases is no small barrier.

    In my search for a diagnosis for my chronic pain, I insisted on getting tested for Lyme Disease. I had to essentially strong arm my GP into ordering it bc she said we don’t have Lyme disease in Texas. 😳 Ummm… we have ticks in Texas, GIANT ticks (yes, everything IS bigger in Texas) ergo, we have Lyme disease. Plus Lyme disease can be dormant for decades and I grew up playing in the woods of Upstate New York and had also spent 3 years in North Carolina and 3 in the Pacific Northwest- a hotbed for Lyme disease.

    I don’t understand doctors’ resistance to ordering tests that can definitively rule out a suspected pathogen or disease process. It’s not like they pay for it and if you have the data to support the test, why do so many balk? Because she/he didn’t think of it? If you were asking to be tested for an allergy to frogs or a case of -insert rarest, most unrelated thing you can think of here- that would be different. You’re not. This sounds to me to be an extremely logical next step.

    I have to say that the *only* reason my fibromyalgia has been so well controlled is because I was diagnosed extremely quickly. Because I wouldn’t take “no” or “golly gee we just don’t know” as acceptable answers. And say what you will about the down side of the medical system in the US (and it IS a big one!🙀!) if you yell and scream loud enough, and have the money for it, you can usually get any test you want run.

    So IMHO, YES- by all means get the test done! I admit I do not fully understand the Canadian health system but encourage you to keep fighting for proper treatment. I just read an article in People (hanging my head in shame – just killing time!) about medical gaslighting and how so many people start to question themselves because their symptoms are invisible. Doctors, nurses, administrators, sometimes even friends and family, can give you that look. I know you know the one I mean. Don’t let them do it- don’t let others drive your bus! You know your body and these symptoms are not just all in your head! Don’t let others’ doubts drive your treatment decisions. They don’t have to live with it.

    I was going to say “best of luck” but this isn’t luck. You’re in a fight for your health. Don’t give up! Even if there are times when you have to go in the corner and hide and cry for a bit, that’s ok. That’s normal. Corner -> hide -> cry -> nap. Then, back to the battlefield. You are worth it. Please keep us posted.🐾

    Liked by 1 person

    1. So with respect to the specific testing I am looking at, it’s not covered under Health Care. There are certain categories of things that are considered ‘elective’ and not ‘necessary’. With ‘Elective’ tests, you’re required to pay a fee for the test up front. Also, because I live in a small town, I’d be required to travel to a city about six hours away to get the test. So I’d be looking at travel costs, plus about $600 for the test.

      I’ve seen tests online that you can send in to some company somewhere in New York. The fee for those tests is around $200. So, I think when I have the spare change, I might opt for that route as it’s a little cheaper. Thought it’s hard to say. When I start working again, I might just opt to get the test done here, in front of me, so I can see the results in front of my eyes. You know? Who knows. It’s a money thing right now, basically.

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      1. Ohhh.. ok so THAT makes total sense. 🙁 I know all too well how finances can sometimes make your decisions for you.

        Here’s a thought…set up a GoFundMe to help offset the cost of the test. I know, that’s kinda hard- baring (bearing???) your soul to the world like that- it would be hard. BUT… I would be willing to wager that if you did a blog about it – explain what the test is, why you need it, how it will help you – your readers would be more than happy to help.

        I think, though cannot say for sure, that it would be wiser to get the test done locally, even though it is significantly greater in cost.

        If it were me, and I went the cheaper route, I would wonder about the quality of the test and I would want someone to help me understand the results- someone I could ask questions to live. (And quickly 🙄 That patients get 10-15 minutes to discuss health care concerns makes me about as happy as a cat getting bathed. It’s a huge pet peeve of mine.)

        That is me. And I am not married to the wisdom of that line of thinking. I can get 🐷-headed about weird things. I also have about…oh…zero experience in the realm of food allergies. So I believe you have checked out the online option and found it to be equal to the other option. I might be having a knee jerk reaction to the notion of online health care. Which is UTTERLY stoopid because I got SOBER using an online group!!! (11years -yeah me!!😹)

        (email me at lalowder@aol.com for more info)

        (or google Women For Sobriety for more info)

        or go to http://www.womenforsobriety.org I would put the live link in there but I don’t know how 😜

        My therapist waives my copay. If he didn’t, there would be no way I could afford to see him weekly.

        Money should just not be a factor in healthcare you know???? It’s just..I dunno…wrong!

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  16. One last comment. I don’t think this is TMI at all. If you are struggling with something in your life, say it. Talk about it. Ask questions, rant, rave, yell, cry, swear but please keep talking! Our cultural reticence to ask for help or talk about what’s going on in our lives is not serving us. And if you are having problems with something as fundamental to life as eating, *not* talking about it is only going to magnify your suffering!

    In fact that IS, in a way, the definition of suffering. I live with fibromyalgia. But my *suffering* has greatly diminished because I DO talk about it. In fact, I encourage you to enter into a counseling program as you fight this battle. Please hear me when I say this: I do NOT think this is “all in your head.” That is NOT why I am suggesting this.

    Right now you are at war…with your own body, with the medical system, with your economic situation, and more. IDK about your circle of people- I so hope they are your allies! Because you need all of them that you can get! THAT is why I suggest the counseling. One more soldier on your side. A time, place and person (or people) where you can get support, insight, acceptance and caring. You said you have been at this for over 2 years- that is a really long time to cope and it appears that you’re not done yet. So please at least consider it. At the very least, if you cannot afford a weekly session with a therapist, maybe there is some kind of online group that you can join so you are not alone as you search for answers. ❤️🐾

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  17. Doctors do have a tendency to jump to a conclusion and stick to it. In a way, it’s understandable. They’re right most of the time and that’s a great statistic to them and you most likely won’t die if they’re wrong. But that doesn’t mean you want to be on the wrong end of it. Especially if it affects your day-to-day life. I personally have experienced and can imagine what it feels like when you have to constantly adjust your diet but no matter what you eat it feels wrong. And walking around with a banging head, must be horrific.

    So, if your daily life is affected and your gut says the doctor is wrong, there is no possible tmi in such a post. You open yourself to a world of people with a large amount of people in similar positions. I wish you good luck in fighting whatever it might be!

    Liked by 1 person

  18. I am a believer that what you eat and what you think is what you are. I have seen people send autoimmune diseases into remission by figuring out the way of eating that works best for them. I myself used to have horrendous digestive issues, a IBS diagnosis, horrible acne, hormonal issues, etc…and have found a way of health that works to support me. Hang in there! There are answers for you!

    Liked by 1 person

    1. I’m sorry I’m just noticing this now, a few weeks later, but I wanted to say thank you. I am trying to be a believer that I’ll eventually learn a way to properly eat that doesn’t give me inflammation and gut issues. Hopefully one day I narrow down everything that causes me issues so that I can avoid them. It’s nice to hear that someone has done it before me… it give ms hope. thank you!

      Liked by 1 person

  19. Really sorry to hear your struggles. It’s something I can relate too; when my Crohns was in a really bad way a few years ago anything and everything I ate led to crippling abdominal pains about 5-10 minutes after eating. It was horrendous. Fortunately that’s not as much of an issue now since my surgery. I still have some foods that give me a rough time with high levels of discomfort and a bit of pain as well as diorreah. Ive identified these foods through following the low FODMAP diet, have you heard of this? I see you’ve followed various elimination diets before. This one worked for me. Hope you manage to get some answers. KBO

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    1. I have tried the foodmap diet. Unfortunately, I seem to have one of those frustrating intestinal systems that, for example, one day really likes eggs and the next day makes me feel exorbitant amounts of pain.

      It’s nice to hear that your surgery offered you some relief. A friend of mine has Crohns, so I know that what you go with isn’t easy. Thank you for sharing a piece of your story.

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  20. I have had experience with food sensitivities, intolerances and allergies. They are of course often linked with IBD, headaches and other conditions. I have known quite a few people whose allergy headaches disappeared when they eliminated salt from their diet – chips, olives, fried foods, takeaway, pizza, convenience food, anything high in salt. Probiotics and sourdough helped my gut health, but it is such a complicated issue. Years ago I went to a specialist Doctor who did scratch tests and told me such a specific range of food that I could and couldn’t eat. Some were cooked and okay but not cooked, not okay, such as Onion. I assume you have tried an elimination diet?

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    1. I had a scratch test done last year so I do have a list of foods to avoid, but even so, the scratch test was 32 foods.

      I’ve done a lot of elimination diets since starting this journey of trying to figure out what causes my issues in 2017. I’ve tried no carbs, I’ve tried no meats. I’ve tried eating online rice, spinach and chicken. Each time I try an elimination diet for three months and it doesn’t help, I feel a little more lost. I’m sure you know how that feels.

      I do agree that probiotics helps. Because I am lactose intolerant and have celiac disease, gut health is something I focus A LOT on, and spend a decent amount on expensive probiotics.

      I’ve never heard of cooked being okay and not cooked not okay. How do you determine that?

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