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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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