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Juliebove

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Juliebove Rising Star

My daughter and I have modified our diets yet again after getting our recent intolerence tests back. In my daughter's case she can actually have some things that she couldn't have before. She is intolerant to more nuts now and also coconut. But overall she can now eat a fairly normal diet. She can even order in a restaurant with no problems!

We are both intolerant to some herbs. Mainly the Italian kind. So ordering Italian food out could be a problem. And she has to watch out for anything with pesto in it due to the basil intolerance.

But me? Intolerant to a lot of stuff now. But I am soldiering on. And my weird symptoms have cleared up. My ring finger had swollen to where I couldn't get my wedding ring on. That's gone. Ring is on. I had gained 6 pounds. That's gone and I am back to losing again. I'd been having weird sinus problem. Like a tickle/itch. Hard to describe it. I would just keep blowing my nose but the annoying feeling wouldn't go away. Was having weird nosebleeds. Not just blood but like watery blood. My daughter gets the same if she eats peanuts or peanut oil. And I was having bowel issues. Several kinds. All cleared up now. Also I have noticed that I am having to use less insulin. So that's a good thing!

I am happy now that I seem to be doing so much better. But some other people are making fun of me. They think the food intolerances are all in my head. So I am not loving that. They don't seem to understand how intolerances work. They think if I eat something and it makes me sick then I would know. Wouldn't I? The problem? I know that with eggs, I would get sick about 18 hours after I ate them. Unless I ate them two days in a row. Then the second day I would get sick about 2 hours later.

But the things I am now intolerant to are things I was eating pretty often. Like chicken. And various herbs and spices. I did strongly suspect the dairy because I was intolerant to it before and perhaps I just wanted to be in denial there for a while. But within days before getting the test results, I was starting to have aversions to dairy. I was seeing cottage cheese as milk, which I hate. And any other type of cheese just didn't seem appealing to me. So giving it up doesn't bother me at all.

I just don't understand why these people seem to have the need to be so vocal about it. I had asked about a recipe I am going to be making for Easter. I made it before and people liked it. It has thyme in it. And I can't have that now. So I simply asked if they thought I should leave it out or try to substitute something else, like oregano. They got all over my case, laughing at me and calling me crazy. One woman even told me that she didn't understand how I could eat oregano if I couldn't eat marjoram. And I was like... Wha? Why? Do you know something I don't? I did look them up and they are members of the mint family. My intolerance test said that I can't have mint but then went on to list marjoram separately. I have also been eating chia seeds daily which are also a member of the mint family. But I seem to have no problems with those. So unless I notice something different, I am going to keep eating those things and just avoid anything that says "mint" outright.

  • 2 weeks later...

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Victoria6102 Contributor

Some people like to think they know everything but really are ignorant when it comes to food issues. Either they like being so vocallly rude about people because they're cold hearted or because they feel like they need to make themselves look better because they are insecure about something in their life. I have to deal with these kind of people too.... I took the advice of people in this forum to just ignore the comments and not associate closely with them. The other day, one of these people came to me and said they had learned about celiac in their school and understood it a little better now. Maybe eventually these people will get a food intolerance of their own. Who knows. Hang in there!:)

JayneA Newbie

I have been struggling for some time with food intolerances after having no issues at all (or so I thought) related to food other than extremely severe migraine. I realised it was a dairy intolerance - the battles I have had with people accepting I can't eat certain foods now has actually been horrendous. My intolerances are now becoming wider spread to gluten, although I realise my symptoms have been around for years, I was just oblivious to them. Thankfully my husband understands but most people are really bad around it, thinking it is all in my head. I wish they could feel the pain in my back or head when I've eaten something. My "best friend" actually asked me what was 'bipolar' and shouldn't I just "chill out" a bit when I told her the consultant was sending me for an endoscopy. I would know what bipolar is being a psychotherapist and would also hopefully recognise if my symptoms were IN MY HEAD. It's a lonely place to be. I lost weight initially when I cut out dairy, I needed to in honesty as I was a bit overweight. People started saying I had anorexia, even my own Mum. It was hugely upsetting. I found the lack of support and understanding, personal, rude, outspoken comments really shocking and hurtful. The consultant I saw recently summed it up well - he said with an allergy you will get the same result every time you eat the food, with an intolerance, the result may be inconsistent ie with milk I always got migraine, with garlic sometimes I do, sometimes I don't. Things don't always show on blood tests etc but we know out own bodies so get to know yours, ignore ignorant and hurtful comments and try to stay disciplined (that is so hard for me) I have found this forum really helpful so thanks to you all - been following it on Twitter for a while

Juliebove Rising Star

Yeah. My reactions aren't always immediate. In fact they usually are not. Which is why I never would have figured them out by myself. I would much rather avoid something that showed on a test than to continue to eat it and possibly have a problem with it.

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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