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All Gone Pear Shaped


Lady Eowyn

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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.


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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.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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