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 Related Issues & Disorders
      21

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748

    Jeanette K.
    Newest Member
    Jeanette K.
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.