Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sick Of The Nay Sayers!


Juliebove

Recommended Posts

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,331
    • Most Online (within 30 mins)
      7,748

    TamSta214
    Newest Member
    TamSta214
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • N00dnutt
      The best way to determine positively is to undergo a Gastroscope. Your Endocrinologist will assess the condition of your "Villi". These tenticles are what extract the nutrient from what we ingest. The Protein in Gluten is like acid to these tenticles.
    • trents
      It occurs to me that this might be a good application for gluten test kits, since the test kits seem to require samples in power form and pills can easily be rendered in that form. According to this article, and it seems to be current, there are three choices when it comes to gluten test kits: https://www.verywellhealth.com/gluten-detectors-and-test-kits-comparing-the-options-4126736 While it is not an inexpensive solution, at least it shouldn't be necessary to use very often once you establish a med either is safe or not.
    • maryannlove
      Same problem in Pittsburgh.  Have Hashimato's so been taking Mylan (generic) levothyroxine for many years.  Pharmicist tried to routinely order yesterday and called to tell me it's unavailable.  That I could try to find elsewhere and have script forwarded to them.  Just spent couple of hours online researching.  What a pain for so many of us!  Using http://glutenfreedrugs.com/newlist.htm (which know is old and doubt updated) reminded me that long ago I used to take Sandoz brand.  Just went on their website and appears they no longer make (maybe why switched to Mylan).  Back to square one.  Using chart from glutenfreedrugs.com says for manufacturers I'll list afterwards "Manufacturer doesn't knowingly add gluten, however since they don't do any final testing they won't guarantee it to be gluten-free but it is very unlikely that it is contaminated with gluten."  Might be best I/we can do.  Along with Mylan, those manufacturers on chart are: Lannett (per website still make) and Neopharma (didn't find on their website).  Paloma Health's website says CERTIFIED gluten free are:  Lannet brand of levothyroxine, Nature-Thyroid, Tirosint (expensive), WP Thyroid.  Other thyroid meds that are gluten-free but not certified:  Levoxyl, Synthroid, Euthyrax, Mylan Brand (wish could get), and Armor with a caution contains sodium starch glycate which may contain gluten.  I'll submit Lannett to pharmacist.  If successfull, will share.  
    • somethinglikeolivia
      Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! 
    • trents
      I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.  
×
×
  • Create New...