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2 Months And Not Any Better..

newinNashville

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newinNashville Rookie
newinNashville
Posted

It has been over two months since my endoscopy revealed celiac disease. I have been on the diet and not doing much better. I still have speratic nausea and difficulty eating most days. I have a lot of back pain when I eat.

My GI doc is a firm believer in Celiac and the associated problems. He ordered a Hida scan to rule out gall bladder problems. My fraction rate was 35% which he said was too high to reccomend surgery. He also noted that several Celiac's have extremely high rates with their gall bladder problems.

He has ordered the capsule endoscoy that takes more pictures. I go in tomorrow at 6:30 am to take the pill and get the equipment for the day. I am beginning to feel like a lab rat with no end in site. I have a trip to Disney world scheduled in JUNE I have to feel better by then. Any ideas?

My do recommended I take more pain meds and nausea meds. I don't want the meds. I want to get to the source of the problem.

Thanks for your insite!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the boards you have found a great place.

First have you cut out dairy products? The villi that are damaged are needed to produce the enzyme that digests milk. It will help you heal faster if drop it for a while then add it back in cautiously.

Another thing that is kind of important at first is to go with only naturally gluten free foods. Things like eggs, fresh fruit and veggies, rice, potatoes, meats, fish and chicken. We do a lot of 'pot' food at my house. Things like chili, soups, stews and such that can be cooked in quantity are good. The less processed the better at first.

Cross contamination from lines in factories or someone double dipping are something you need to watch out for also. Don't forget to check your toiletries etc. and also pet foods, especially if you share a can opener with them.

Many also find a sublingual B12 helpful at first.

I am sure others will have suggestions too. Disney, from what I hear is quite celiac friendly. My DS and DD went there a month ago and had a great time with no problems. I would think positive and read as many posts here as you can handle.

It gets easier and the trade off of the trouble adjusting to this for the good health that comes is so worth it.

MaryJones2 Enthusiast
MaryJones2
Posted
It has been over two months since my endoscopy revealed celiac disease. I have been on the diet and not doing much better. I still have speratic nausea and difficulty eating most days. I have a lot of back pain when I eat.

My GI doc is a firm believer in Celiac and the associated problems. He ordered a Hida scan to rule out gall bladder problems. My fraction rate was 35% which he said was too high to reccomend surgery. He also noted that several Celiac's have extremely high rates with their gall bladder problems.

He has ordered the capsule endoscoy that takes more pictures. I go in tomorrow at 6:30 am to take the pill and get the equipment for the day. I am beginning to feel like a lab rat with no end in site. I have a trip to Disney world scheduled in JUNE I have to feel better by then. Any ideas?

My do recommended I take more pain meds and nausea meds. I don't want the meds. I want to get to the source of the problem.

Thanks for your insite!

I know from experience that opiates, promethazine and dairy can all cause constipation (which might discomfort you describe). My sides and back did not stop hurting until I cut out dairy. I think the pain was caused by constipation. Is it possible you have something like this going on?

My suggestions are to cut out dairy and try a magnesium supplement for a while and see how that works. Everyone responds differently so all I can tell you is that it worked for me.

Nancym Enthusiast
Nancym
Posted

There's a good article about what to do when you're not getting better.

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