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2 Months And Not Any Better..


newinNashville

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newinNashville Rookie

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

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
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

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

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    • Scott Adams
      After years of stable management, developing new symptoms to historically safe foods like nuts and fish strongly suggests a secondary issue has developed. It is highly unlikely to be a new gluten issue if the foods themselves are certified gluten-free. The most probable explanations are a new, separate food intolerance (perhaps to a specific protein in certain nuts or fish) or a true IgE-mediated food allergy, which can develop at any age. The symptoms you describe—cramps and the urge to vomit—can be consistent with either. It is crucial he sees an allergist for proper testing (like a skin prick or blood test) to identify the specific culprit and rule out a serious allergy, as reactions can sometimes worsen with repeated exposure.
    • trents
      Nuts are a common source of food allergy reaction/intolerance/sensitivity. But fish usually not. Of course, intolerances can develop to any food, whether or not they are common ones. I'm at a loss here.
    • Scott Adams
      Your doctor's recommendation to wait three months is very sound and aligns with general advice for celiac disease. While the acute GI symptoms resolve quickly, the autoimmune response and intestinal inflammation can linger, impairing nutrient absorption crucial for early fetal development. This three-month window allows your body to calm the immune response and for your gut to fully heal, ensuring you are in the best possible nutritional health for conception and pregnancy. In the meantime, focus on hydrating, eating nourishing, easily digestible foods, and resting—your body needs time to recover. It's a frustrating delay, but it's the best step for a healthy pregnancy.
    • Celiacpartner
      He’s noticed it after having a few different kinds of nuts and nuts on top of a gluten free nut bar. and it’s happened after having some fresh caught fish, and tonight from packaged plain salmon from the supermarket. He has stomach cramps and feels the need to vomit to try and relieve the symptoms. 
    • trents
      Welcome to the forum, @Celiacpartner! Does this happen with all nuts and all fish or just certain kinds? And are we talking about products that are advertised as gluten-free eaten at home or things served in a restaurant?
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