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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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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