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Going Back To Gi After 1 Yr Of gluten-free Diet - Not Fully Recovered!

yogamommytrainer99

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yogamommytrainer99 Apprentice
yogamommytrainer99
Posted

So today I go back to the GI doc again. I was rediagnosed Celiac disease a year ago - yes blood test and endoscopy(ies). I was previously positively diagnosed 10 years ago, but chose not to follow a gluten-free diet (bad idea I know). Anyway, I have been strictly adhering to a gluten-free diet for the past year. My first 4 months were terrible - I had a leaky gut, exhaustion, and malaise. I have improved, but I am still struggling with diarrhea, bloating and stomach cramps. I have to plan my day around most of my morning spent very near a bathroom. My anitbody levels are still high and I don't understand why. I prepare my gluten-free separately from my family's when they eat gluten. I have my own toaster. I read labels. I call companies. I rarely go out to eat and when I do it's to a gluten-sensitive restaurant. I'm just frustrated and want to move forward, but I feel like I've been stuck in this food-makes-me-feel-terrible spot for way too long!

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kareng Grand Master
kareng
Posted

Let us know what the GI says.

Skylark Collaborator
Skylark
Posted

That sounds very frustrating. I hope your doctor has some insight. If your insurance covers it, maybe he can refer you to a dietitian to make sure there is nothing you're overlooking.

You also might ask about the possibility of casein (milk protein) sensitivity. Some celiacs to milk as if it were gluten. The other thing that comes to mind is that most "gluten free" breads and cereals do have unavoidable traces of gluten. It gets on grains from the machinery, grain elevators, and trucks. It's not enough to bother most celiacs but I've seen other people around here who had to stop eating them to heal.

ravenwoodglass Mentor
ravenwoodglass
Posted

What is your diet like usually? Are you going with mostly fresh unprocessed foods? Also have you eliminated gluten from stuff like makeup, shampoos, lotions etc?

Are you taking any supplements or drugs either OTC or script? Supplements can carry a gluten free label and still contain wheat and barley grass if you take supplements make sure you read all the ingredients. Any drugs need to be checked with the maker, don't trust your doctor to know if the meds are safe. Also do you prepare any baked goods for your gluten eating family? Flour that becomes airborne can be an issue. If you do any crafts or home repair also make sure that the stuff you are using is safe. Drywall compound, wall paper paste, glues etc can all be a problem for us if they contain wheat.

T.H. Community Regular
T.H.
Posted

It could also be that you are on the more sensitive side of things, so that gluten-free products may still have too much gluten. They typically have less than 10-20 ppm of gluten, but some of us will still react to that.

My GI has also told me he's seen patients who still test positive for celiac, even when they are completely gluten free, if they have other intolerances or food allergies. They just don't heal. I ended up cutting all foods down to a minimum, nothing processed, and keeping a food log on what I ate and how I felt and that helped my recovery quite a bit.

yogamommytrainer99 Apprentice
yogamommytrainer99
Posted
  • Author

Well the doc says that my symptoms fit the bill for refractory sprue. Sprue that doesn't react to a gluten-free diet. So now I have to be on steriods for a month.

kareng Grand Master
kareng
Posted

Well the doc says that my symptoms fit the bill for refractory sprue. Sprue that doesn't react to a gluten-free diet. So now I have to be on steriods for a month.

Thanks for letting us know. I'm sorry for that Dx as I know it can be difficult. Keep us updated. I have been gluten-free for about 5 months and still have some issues so this worries me, too. Good luck!

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dilettantesteph Collaborator
dilettantesteph
Posted

My GI doc told me that he thought most cases of refractory sprue were celiacs that are sensitive to low levels of gluten. I can't eat processed gluten free foods. I stick with unprocessed fruits, vegetables, wild fish, and whole grains, sorted and washed.

Skylark Collaborator
Skylark
Posted

Have you tried going off milk? I keep asking this of people who are not responding well to a gluten-free diet because I ran across these studies where there are some celiacs whose antibodies cross-react to both gluten and casein. The researchers conclude that casein could trigger celiac damage in these people. Here are the studies.

Open Original Shared Link

Open Original Shared Link

If I were you, I'd try eating casein-free before you accept a diagnosis of refractory sprue. At least print the abstracts and see what your doctor thinks.

yogamommytrainer99 Apprentice
yogamommytrainer99
Posted
  • Author

Thank you all for all the tips, advise, and information. I am going to try a month of Entocort to see if that changes my insides. I will probably try eliminating other foods from my diet if this steriod course doesn't do the trick.

hercules25 Apprentice
hercules25
Posted

I am currently on Entocort and the side effects have been none. It did seem to work for a bit. Let us know how well it works for you.

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