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

All Gone Pear Shaped


Lady Eowyn

Recommended Posts

Lady Eowyn Apprentice

Hello there.

Have been gluten free since about Feb 2011. Not eaten bread, cereal, pasta or bread for some years as it makes me ill so gluten free wasn't a big deal. Felt MUCH better for about six months then slowly began to feel much worse. Back to stomach cramps, the big C alternating dodgey D, headache and truly terrible nausea with repeated close shaves for throwing up while out - not good.

I think soya is a big problem for me (nearly as bad as gluten) so cut that out, followed by potatoes, rice and all other grains and the dreaded dairy. Have not been able to give up milk in coffee!!! Can't eat any processed food (presumably from soya)and also have trouble with bacon, sunflower oil (migraine) all dried fruit and balsamic vinegar. I have a horrible feeling there are other things aswell.

The last six weeks I have really gone downhill and am so cheesed off with it all. Got glutened from some very good oil that I put on two ponies to help sweetitch - it's really good - but contains wheatgerm oil. Gives me all the gluten symptoms including a burning nose - guess I touched it!

Just need to hear some words of wisdom really - sat here bloated, pounding heart and miserable - sorry to moan.

On the up side have used celiac.com for the last year - brilliant, thank you :) .

Have had no official diagnosis but have had symptoms for 35 years, and Hashimotos (use natural thyroid hormone)since age 16 and DH since same age that is pretty much confined to scalp now and varies in severity. Also saliva test (adrenal hormones) showed the antibodies (can't remember the name) for gluten and recommended gluten free.


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



Celiac.com Sponsor (A8-M):



dani nero Community Regular

Hello there.

Have been gluten free since about Feb 2011. Not eaten bread, cereal, pasta or bread for some years as it makes me ill so gluten free wasn't a big deal. Felt MUCH better for about six months then slowly began to feel much worse. Back to stomach cramps, the big C alternating dodgey D, headache and truly terrible nausea with repeated close shaves for throwing up while out - not good.

I think soya is a big problem for me (nearly as bad as gluten) so cut that out, followed by potatoes, rice and all other grains and the dreaded dairy. Have not been able to give up milk in coffee!!! Can't eat any processed food (presumably from soya)and also have trouble with bacon, sunflower oil (migraine) all dried fruit and balsamic vinegar. I have a horrible feeling there are other things aswell.

The last six weeks I have really gone downhill and am so cheesed off with it all. Got glutened from some very good oil that I put on two ponies to help sweetitch - it's really good - but contains wheatgerm oil. Gives me all the gluten symptoms including a burning nose - guess I touched it!

Just need to hear some words of wisdom really - sat here bloated, pounding heart and miserable - sorry to moan.

On the up side have used celiac.com for the last year - brilliant, thank you :) .

Have had no official diagnosis but have had symptoms for 35 years, and Hashimotos (use natural thyroid hormone)since age 16 and DH since same age that is pretty much confined to scalp now and varies in severity. Also saliva test (adrenal hormones) showed the antibodies (can't remember the name) for gluten and recommended gluten free.

I'm sorry but I'm not an expert.. but since I was feeling quite poorly as well, I would suggest that you go on an elimination diet like I did. Eliminate everything you're eating except for very basic things that you know don't make you sick.

I started with veggies and red and white meat, then in about a week, added one food every three days.

I found I was reacting to so many things, and specifically foods that are high on sals Open Original Shared Link

Takala Enthusiast

Hello there.

Have been gluten free since about Feb 2011. Not eaten bread, cereal, pasta or bread for some years as it makes me ill so gluten free wasn't a big deal. Felt MUCH better for about six months then slowly began to feel much worse. Back to stomach cramps, the big C alternating dodgey D, headache and truly terrible nausea with repeated close shaves for throwing up while out - not good.

I think soya is a big problem for me (nearly as bad as gluten) so cut that out, followed by potatoes, rice and all other grains and the dreaded dairy. Have not been able to give up milk in coffee!!! Can't eat any processed food (presumably from soya)and also have trouble with bacon, sunflower oil (migraine) all dried fruit and balsamic vinegar. I have a horrible feeling there are other things aswell.

The last six weeks I have really gone downhill and am so cheesed off with it all. Got glutened from some very good oil that I put on two ponies to help sweetitch - it's really good - but contains wheatgerm oil. Gives me all the gluten symptoms including a burning nose - guess I touched it!

Just need to hear some words of wisdom really - sat here bloated, pounding heart and miserable - sorry to moan.

On the up side have used celiac.com for the last year - brilliant, thank you :) .

Have had no official diagnosis but have had symptoms for 35 years, and Hashimotos (use natural thyroid hormone)since age 16 and DH since same age that is pretty much confined to scalp now and varies in severity. Also saliva test (adrenal hormones) showed the antibodies (can't remember the name) for gluten and recommended gluten free.

You are likely routinely getting cross contaminated with gluten, and are going to have to be merciless in rooting it out, if you want to be healthy. I noticed you are still consuming or coming in contact with a lot of things I avoid, irregardless of whether or not some expert tries to assure me that it's "perfectly safe," they don't live in my body, and they don't have my reactions, and I can prove the item in question is not in any way actually certified gluten free, and was likely processed with wheat or a wheat derived product. You may want to do the SCD (Specific Carbohydrate Diet) for a while until you get it sorted out, or a version of it which is modified for your needs.

This includes avoiding like the plague any sort of pet and livestock feeds or topical dressings/ointments/lotions that contain wheat, rye, and/or barley. Oats, unless grown to be gluten free, are also likely cross contaminated, and straw is another thing. This means you just have to be careful as to what you do with your clothes afterwards, like throwing them immediately into a laundry basket in the mud room instead of wearing them in the house, or wearing an overshirt or jacket to feed with, that you keep in the barn just for this activity. Anything that you are putting on the horse should be wheat/barley free. (try olive oil). WEAR GLOVES, a box of disposable gloves is a one of the best things to have around.

Make sure all vitamins, supplements, and medications are really gluten free.

I have read the labels on "balsamic" vinegars lately and the contents are less and less like wine vinegar, and more and more bizarro- land, ingredients like "boiled grape must" which is the dreque out of the bottom of the barrels..... and artificial coloring, no thanks. <_<:ph34r: So I'm sticking with pure apple cider vinegar or a slice of lemon or lime wedge for now. Maybe the next time my grape growing neighbor tries to give me a bottle of wine I will take him up on it, just to make vinegar out of the thing !

Try coconut milk in your coffee and tea instead of dairy milk.

I have had to cut out most processed lunchmeats and bacon, but it was totally worth it to get rid of the symptoms they were giving me, which was severe joint swelling. I suspect it is a reaction to the preservatives or the antibiotics they are fed, as I react the same way to non organic dairy.

Lady Eowyn Apprentice

Thanks for that.

Just have got to a stage of being cheesed off and needing to moan.

I am not being careful enough and must be getting cc'd. In fact this really bad spell with wanting to eat gluten again (I believe gluten makes me eat compulsively) all seemed to start when I baked some cakes for some guests! Prior to that there was no gluten in my kitchen for some time. Hubby very supportive and almost gluten free.

My system doesn't seem able to handle any processed food with additives etc and that includes processed gluten free - the whole system seems to go into spasms - don't need to mention the end result of that!!

Will be making more effort from now on :rolleyes:

Back to basics with the food.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,557
    • Most Online (within 30 mins)
      7,748

    Ortega
    Newest Member
    Ortega
    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

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
    • knitty kitty
      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • 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.
×
×
  • 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.