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

Tests Finished


Ursa Major

Recommended Posts

Ursa Major Collaborator

Okay, I am done being a guinea pig, I am now sure of all my intolerances (at least I hope that's all, or I won't have anything left I can eat).

Yesterday I decided to test the salicylates. I took Aspirin, and, for good measure (and because it might be my last chance to eat those things) ate honey, a peppermint candy, a clementine orange, some grapes and some almonds. Today I woke up with my whole body aching all over, even my skin is aching (and my head, of course). That's the way I used to feel all the time, and it was the reason I was on codeine 24 hours a day for four years (and for the additional pain the lectins caused, of course). So, today I am back on codeine (hopefully won't need it tomorrow).

So, here is my analysis of which foods cause what:

Gluten and dairy: Gastrointestinal problems (diarrhea, rumbling in the bowels, occasional horrible stomach and bowel cramps that make me think I'm going to die), severe lower back pain, dizziness, brainfog, vision problems, depression, moodiness, asthma and a host of other things.

Open Original Shared Link (this is a link): Disabling pain in my feet, knees and hands and all joints, excessive need for sleep, constant tearing from the outer corners of my eyes, stomach ache, acid reflux, headaches, hives, acne, dermatitis and others.

The nightshade family (potatoes, tomatoes, peppers, eggplant): Potatoes cause gastrointestinal problems (diarrhea, bowel cramps), the tomatoes cause migraines and I'm not completely sure what the other two do. Also, nightshades contain salicylates AND lectins and cause aches and pains as well.

Open Original Shared Link (this is a link):

Generalized body pain (as in: aching all over, a burning ache in EVERY SINGLE part of my body, including my skin).

Well, now at least I know and can focus on the few things I now can still eat and get on with my life. It won't be easy, but it will be possible. And if it means that I will find out what it feels like to be well, it will be worth it.

Ursula

  • 4 weeks later...

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



Celiac.com Sponsor (A8-M):



DonnaD Apprentice
Okay, I am done being a guinea pig, I am now sure of all my intolerances (at least I hope that's all, or I won't have anything left I can eat).

Yesterday I decided to test the salicylates. I took Aspirin, and, for good measure (and because it might be my last chance to eat those things) ate honey, a peppermint candy, a clementine orange, some grapes and some almonds. Today I woke up with my whole body aching all over, even my skin is aching (and my head, of course). That's the way I used to feel all the time, and it was the reason I was on codeine 24 hours a day for four years (and for the additional pain the lectins caused, of course). So, today I am back on codeine (hopefully won't need it tomorrow).

So, here is my analysis of which foods cause what:

Gluten and dairy: Gastrointestinal problems (diarrhea, rumbling in the bowels, occasional horrible stomach and bowel cramps that make me think I'm going to die), severe lower back pain, dizziness, brainfog, vision problems, depression, moodiness, asthma and a host of other things.

Open Original Shared Link (this is a link): Disabling pain in my feet, knees and hands and all joints, excessive need for sleep, constant tearing from the outer corners of my eyes, stomach ache, acid reflux, headaches, hives, acne, dermatitis and others.

The nightshade family (potatoes, tomatoes, peppers, eggplant): Potatoes cause gastrointestinal problems (diarrhea, bowel cramps), the tomatoes cause migraines and I'm not completely sure what the other two do. Also, nightshades contain salicylates AND lectins and cause aches and pains as well.

Open Original Shared Link (this is a link):

Generalized body pain (as in: aching all over, a burning ache in EVERY SINGLE part of my body, including my skin).

Well, now at least I know and can focus on the few things I now can still eat and get on with my life. It won't be easy, but it will be possible. And if it means that I will find out what it feels like to be well, it will be worth it.

Ursula

Hi Ursula

I have many of the same symptoms as you. I have checked out your links, very informative thanks! I have sort of been doing a detox/ellimination diet for the last few weeks. I have had some days where I have felt really well but we have had to travel a lot so the re-introduction and testing has been confusing. Firstly how many aspirin did you take to test for salicylates? Over the last couple of days I have had, grapes, wine, pork, pears, bananas, cranberry & apple juice (I don't normally drink juice or eat a lot of fruit) nuts and raisons to snack on, extra strong mints and soy milk (I'v run out of gluten-free rice milk and swapped to soy because my dairy issues) tea, leeks, broccoli, asparagras. rice, quona. all things that I had managed to cut out. No nightshades as my daughter is very sensitive to them. My chronic pain and brain fog are back. What do you actually eat? I would really like to go back to basic foods for a week and test food groups once and for all!

I would be grateful for your advice.

Donna

Ursa Major Collaborator
Firstly how many aspirin did you take to test for salicylates? Over the last couple of days I have had, grapes, wine, pork, pears, bananas, cranberry & apple juice (I don't normally drink juice or eat a lot of fruit) nuts and raisons to snack on, extra strong mints and soy milk (I'v run out of gluten-free rice milk and swapped to soy because my dairy issues) tea, leeks, broccoli, asparagras. rice, quona.

Okay, here goes: grapes, wine, cranberry and apple juice (or any juice for that matter), raisins, mints, tea are some of the worst things you could be having when sensitive to salicylates. All of those have extremely high levels of them.

PEELED pears have none (the peel is the problem here), bananas have none, pork should be fine (but may not, everybody is different), most nuts are a bad idea, but hazelnuts in moderation are okay. All dried fruits are terrible, as they concentrate the already bad salicylates, so raisins are especially terrible, and mints (natural and artificial) are one of the worst things.

When testing for salicylates I used six chewable kid's aspirin (the same amount as one regular adult aspirin). If you take the coated kind you won't get an accurate result, because it won't dissolve in your stomach.

A note of caution: If you use too much aspirin if you're sensitive to salicylates, you can go into anaphylactic shock, since Aspirin is pure salicylic acid, so is one big salicylate. If you don't react negatively to Aspirin, you're not salicylate intolerant.

What you would want to do is cut out all foods high in salicylates for a week, which might stop most pain if that is the problem. Then you take the aspirin. I had a delayed reaction to it (that's why these things don't show up in any allergy or intolerance testing). I felt almost fine that night, but woke up feeling absolutely dreadful and was sick all day the next day. It took a week to feel totally better.

Here is what I CAN eat:

The only oils I can use are cold-pressed sunflower oil and lard. The only sweetener is maple syrup. The only seasoning is sea salt. I can use some parsley, garlic, dill and chives (small amounts).

I can eat meat (no organ meats and shellfish). Fruits are peeled pears, sometimes peeled golden delicious apples (all others are worse), and one banana a week (I don't tolerate more than that for whatever other reason).

I only drink water and chamomile tea.

Completely safe vegetable are: Bamboo shoots, cabbage, celery, rutabaga, iceberg lettuce.

In limited amounts (not every day, vary those) Brussels sprouts, shallots, grean peas, leek, red cabbage. In very small amounts (not too often): Asparagus, carrots, beetroot, cauliflower, onion, turnip, green beans.

Seeds and nuts: The only seed 100% safe is poppy seeds. Sunflower seeds and hazelnuts are allowed in small amounts.

I sometimes use buckwheat, tapioca and arrowroot flour to make pancakes. I find I can tolerate some goats milk in those.

There you have it, that's all I usually eat. For every meal, in varying combinations.

And I don't find it hard, because I feel so much better!

I hope this was some help.

Ursula

DonnaD Apprentice
Okay, here goes: grapes, wine, cranberry and apple juice (or any juice for that matter), raisins, mints, tea are some of the worst things you could be having when sensitive to salicylates. All of those have extremely high levels of them.

I hope this was some help.

Ursula

Thank you Ursula,

Your reply was really helpful. I havn't had ordinary tea for 2 weeks before today and I feel dreadful! And I'v been binging today on raisins, wine, grapes. I found a terry's chocolate orange in the fridge and demolished that too. :( I do seem to crave all the 'baddies' if I have even one so an intolerance would make sense. I think the soy triggered the binge. I will take your advice and cut everything out for a week and then test aspirin. Giving up wine totally will be terrible, my other half is in the wine trade ;-( we have a wine cellar. :( wine is my drug of choice after a hard day. :rolleyes:

Once I get myself sorted out I am thinking of going back to college/open university and doing a nutrition degree/course of some kind so that I can help others/start another business (I used to have profitable small accounting business before I lost the mental focus and ability do sums!) , perhaps web based offering testing and a diet profile I will have to do some research and see if there is a business plan that could work. i would love to be economically active again and earn a living. I hate being dependant on my other half because of my illness. I feel driven to get answers.

I 'diagnosed' 2 of our christmas visitors with gluten problems, one has had celiac disease confirmed by testing (she also had unexplained infertility) and the other was negative on EMA bloods but had been almost gluten-free for 2 years and has classic symptoms. Her Doctor has celiac disease but is not up to date with research, what a waste. My children cringe when I 'diagnose' friends over the dinner table, but I don't want people to suffer for years like me and my family have. I would like to reach the people 'under the iceberg.'

Thanks again

Donna

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,541
    • Most Online (within 30 mins)
      7,748

    Sally Garber
    Newest Member
    Sally Garber
    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

    • 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. 
    • lmemsm
      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
    • Scatterbrain
      Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise? Thanks
×
×
  • 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.