Jump to content
  • 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

Is It All In My Head?


torimuse

Recommended Posts

torimuse Rookie

My only discouragement right now is that it could take as long as October or November to get final results from all of this. I've never been a very patient person, but now I really, really have to be, and it's driving me up the wall. :lol:


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



Celiac.com Sponsor (A8-M):



Marz Enthusiast

My only discouragement right now is that it could take as long as October or November to get final results from all of this. I've never been a very patient person, but now I really, really have to be, and it's driving me up the wall. :lol:

Don't worry, you might find it's quicker than you think :) I started re-introducing as soon as I started feeling better, which was one week, and then reactions were almost instant. I'm still in the process of re-introducing stuff, but I'm only going to wait a few days until I feel 100% again, then try with the next food group.

Hopefully you move soon so you can start cooking for yourself again, it really sucks to rely on takeaways/friends/family to cook for you in the meantime :(

torimuse Rookie

Thanks, Marz. :) I move in one week and six days...well, it's practically 5 now. (10pm my time) I think the time will seem to go faster once I get there and will be at the point where I have to consciously gage what I'm eating and what reaction I'm getting. Aka, the sheer nervousness of "Will I get a reaction from this?" I'm thinking of at least waiting a week for delayed reactions if I'm not noticing any reaction to something.

Also, finding milk is damn near impossible. ::pouts:: Though I've discovered that the Naturally Yours store here has products from Pacific Foods, including their dairy (including casein), soy, and gluten free rice milk. I saw the warnings against Rice Dream, so I did snooping and found a line on Pacific Foods' website that they don't use gluten products in processing, so I'm thinking I'll be okay.

The good thing is that I'm currently living in my own apartment (well, shared) so I can still cook for myself. The unfortunate part is that my roommate doesn't realize how serious a condition it is for me. (Tell the truth, I didn't realize I was *this* intolerant 'till last night.) I was moving one of her pizza pans that hadn't been washed yet to make room for my cutting boards, and it was evidently enough CC to leave me cramping and nauseous for 20 min. :( She's on vacation for a week, so I'll thankfully be able to scrub the kitchen tonight and have a gluten free kitchen for a little bit. :)

Though now I'm starting to rethink when I'll introduce different things because of how broad a category lectins are and all of the other stuff in there that could be causing a reaction all by itself.

I'm thinking: fish, shellfish, mushrooms (the non-suspected non-lectins), tree nuts, beans & corn, peanuts, nightshades, soy, potato, eggs, and dairy (lactose free first so I can see if it's casein or not).

mushroom Proficient

It was somewhere on this board that I first read about it, and then within a couple days I ate a can of pork and beans and had a reaction. Granted, I could've been glutened by "natural flavors," (2am and a holiday, couldn't call the company) but it's one of those "better safe than sorry" moments for me right now. The only problem I'm having is trying to define them. Right now, beans (legumes), seeds, whole grains, and nuts seem to be what I've come up with, but I'd be grateful for any corrections or additions. Also, any ideas as to what order I should start introducing foods...

It's unfortunate that it takes quite a bit of trial and error with the lectin problem to get it sorted. I didn't realize I was nightshade intolerant until I decided not to eat them because of my psoriatic arthritis, since nightshades are known to be inflammatory. Once I eliminated them, just like gluten I started reacting more strongly to them. I had eliminated potatoes, but then realized that the residual itching I had (I would get a hive-like reaction to half a baked potato) came from the potato starch in the breads I was buying/baking. As soon as I eliminated potato starch the itching went away. Interestingly enough, I can eat a little fresh tomato, like in a BLT, but anything cooked is deadly. I had always (semi-unconsciously, but obviously with a reason) avoided the refried beans that my husband uses in our "taco-less" tacos, but then I started discovering the legume connection. Stuff I read said you should be able to eat green beans and peas, but no, I reacted to them too, so I didn't laboriously go through and test every legume after that. At some point I may challenge split pea soup and lentils, but for now they are all verboten.

Corn had been a problem for me since 1969, and in the early 90's I tested sensitive by skin test to corn and soy, so I had mostly avoided those. When I went gluten free I was so busy looking for gluten that I failed to notice how much soy had crept into my diet and developed a red itching rash to that. I can tolerate a little corn in corn starch...

The citrus problem I think was just that I was eating too much of it. After a year, I have had some lemon juice in a salad dressing and had no problem, so it is something I am gradually reintroducing. Soy will never come back for me. I don't know yet about the others. At the moment I try to avoid high-lectin foods so as not to initiate any other sensitivites.

If you are sensitive to lectins, it is good to get onto them early. I was too soon old, too late smart, when I learned about them, and have gone on to develop an erratic heart beat and tachycardia runs when I consume them :( , together with bloating.

If you would like to read more about them, go to krispin.com. Krispin has the best summary of the lectin problem I have seen.

I hope you don't have problems with too many of them. Fortunately, I do not seem to have a problem with dairy -- goodness knows I have problems with too many other of them :unsure:

torimuse Rookie

::hugs mushroom:: Thanks for all your information. Now that I know that, I'll probably end up separating green beans and peas from the others if I end up with a reaction, just to be sure. I don't *think* I have a lectin intolerance, but it's one of those, "You never know until you try," kind of deals. I *did* react to pork and beans, but they *did* have natural flavoring in them. And now all the intolerances are seeming to hit at once. I take gluten out, I react to milk. I take milk out, who knows what I'll react to next. Easier to take them all out now and get it over and done with.

And you're exactly right. Two months of torture is nothing compared to the sickness I won't get for knowing now instead of finding it later. I'm still very young at 24. I can adjust and live a great majority of my life free from feeling sick. Part of me wishes you found it early, too, but the other part of me is grateful for your experience because now you can help not only me, but anyone else who might suspect lectins.

(Psst! Skylark! That last part goes to you too, with all the mental problems that seem to have paralleled mine.) :) All you guys on this forum are freaking amazing.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,245
    • Most Online (within 30 mins)
      7,748

    PikaPikaBtch.XP
    Newest Member
    PikaPikaBtch.XP
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.