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Refactory Celiac

CarolinaKip

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CarolinaKip Community Regular
CarolinaKip
Posted

So back to the doctor because I'm still in so much pain. He is testing me for refactory celiac, kinda scary! He is checking out my liver and thyroid as well, plus other blood test. Is anyone refactory here? I hear it is rare, but I know I'm extreme with being gluten-free and my products. 5 months in and my brain fog is gone, but not other symptoms. I have all my

own things in the kitchen and cut gluten use way down for my kids. However, work is another issue all together.

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cassP Contributor
cassP
Posted

So back to the doctor because I'm still in so much pain. He is testing me for refactory celiac, kinda scary! He is checking out my liver and thyroid as well, plus other blood test. Is anyone refactory here? I hear it is rare, but I know I'm extreme with being gluten-free and my products. 5 months in and my brain fog is gone, but not other symptoms. I have all my

own things in the kitchen and cut gluten use way down for my kids. However, work is another issue all together.

well, i hope you dont have refactory!!

i just looked at your "signature"- that's a nice long list of things to avoid- altho if most of us wrote down other foods that bothered us- it might look just as long.

i hope you're still experimenting with "grain free"- many of us DO feel better off all grains

another thing you should look at before you completely resign yourself to a "refractory" dx, is "Fructose Malabsorption"- since i researched that and eliminated many more foods- i feel MUCH MUCH MUCH better. excess fructose used to have me doubled over in pain SO DEBILHITATING that i would have gladly taken a Spinal Block. google Fructose Malabsorption and the "FODMAP" diet- and see if any of that rings true for you. it looks like A LOT of foods to avoid- but it's kind of different for everyone. ive completely eliminated certain foods- but am still experimenting with garlic and onions... sometimes these foods just have to be small enough portions.. for example: i can have a SMALL amount of garlic OR onions in one sitting, but i dont ever go near dates or pears.

good luck... and try not to be discouraged- a lot of us are dealing with multiple intolerances.

OH- also ask your doc if you could get tested for SIBO- that can cause similar symptoms

Lisa Mentor
Lisa
Posted

Full recovery can take up to two years with total diligence. Refractory Sprue is not even a player here until your have exhausted all of your options.

It took me at lest six months to learn the diet and equal that time to learn to read labels. Eating gluten free is not an easy learn, and if you find it so, you're missing something.

Please read and read and read here....there is so much to learn. ;)

You might want to get a new doctor...one who knows more about Celiac Disease. Or look into other options.

gf-soph Apprentice
gf-soph
Posted

So back to the doctor because I'm still in so much pain. He is testing me for refactory celiac, kinda scary! He is checking out my liver and thyroid as well, plus other blood test. Is anyone refactory here? I hear it is rare, but I know I'm extreme with being gluten-free and my products. 5 months in and my brain fog is gone, but not other symptoms. I have all my

own things in the kitchen and cut gluten use way down for my kids. However, work is another issue all together.

Is he redoing your gluten blood tests? I found those useful for monitoring my diet compliance, I did get glutened accidentally a few times, and helped me to work out my glutening symptoms in the early stage.

If they haven't fallen greatly then it's likely that you are getting glutened. The next step would be to get really militant about gluten. I would make your whole house gluten free. It is so incredibly easy to get glutened by others even if they are trying hard, I would make 100% sure that there is no way you are being contaminated by others. If you are in the US and you eat processed foods it's also possible that you react to the 20ppm allowed there. Cutting out all processed foods would then be a good idea.

It's good that your dr is doing more testing, hopefully they find something to explain your continuing symptoms other than refractory.

mushroom Proficient
mushroom
Posted

As you will have found on this board, some folks are a lot more sensitive to trace gluten than others. You could be one of those. Also, I agree with Lisa that five months into the diet is way too soon to throw up one's hands and say, well, that's not working. I am still refining my diet almost three years in (well, I hope I have stopped now :P ) but it has taken a long time to work out other intolerances and exactly what it is I should and should not be eating. If you have children in the house eating gluten, then you have a major source of potential cross-contamination depending on their age. It would mean having to wash your hands every time you touched a door knob or handle, not to mention all the other places gluten could find its way to in your house. Kissing your children (and your husband if he eats gluten) could contaminate you easily. If you had a completely gluten free house your chances of staying gluten free would be much higher. The only time gluten comes into my house is in a potluck neighbourhood get-together (finger food only) and they all take their leftovers home with them and I wipe down all the door handles after they have gone :lol:

dilettantesteph Collaborator
dilettantesteph
Posted

We tried a shared household for about a year being as careful as possible and couldn't get healthy. We eat almost no processed foods. At present we haven't found any sweeteners that we can eat without glutening symptoms. We have to peel and wash just about everything. I think that there is a lot further that you can go in your diet before settling on a refractory diagnosis. I know I'd have one by now if I hadn't gotten absolutely crazy with my diet. If you eat any processed grains that could be it. If you eat any whole grains without sorting and washing first that could be it. I can't do any of those things. If you eat regular meat from the store that could be it. I can only buy the bulk packaging direct from the meat producer. Are you still eating chocolate? I haven't found one that I can eat. Do you eat chicken? That seems to be a problem no matter what. Dairy?

Some really are a lot more sensitive than others. I hope you get it figured out.

The Glutenator Contributor
The Glutenator
Posted

I am in the same position after 7 months gluten free. My Ab levels have not dropped at all, and after a second set of biospises they were all still positive; I have been 100% diligent on the diet and this is very discouraging. My doctor is having me cut out all processed foods (including ones labelled gluten free) for 6 months. If that doesn't work I could be in the "refractory" boat too. I am definitely sharing your fears and anxiety right now. As a young woman making everything I eat from scratch is going to be a daunting task, but there really is no other option!

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T.H. Community Regular
T.H.
Posted

I'm pretty much there with dilletantesteph - not quite to that level, but the way things are going, I think I'm going to be.

However, to support that idea? I was reading a study on refractory celiac disease that used two things to try and see if they could take care of it. The first was to make all the celiacs take even MORE gluten out of their diets. So less processed foods, etc...

A lot of the refractory celiacs got better.

The ones that didn't, they started looking at other wide-ranging sensitivities and allergies, like sulfites and histamine sensativity, and a whole bunch more got better.

So the study's conclusion was that if you are refractory, the first step should be to eliminate even more gluten, and then to get tested for other food issues if that doesn't work. So something to think about, anyway. :-)

So back to the doctor because I'm still in so much pain. He is testing me for refactory celiac, kinda scary! He is checking out my liver and thyroid as well, plus other blood test. Is anyone refactory here? I hear it is rare, but I know I'm extreme with being gluten-free and my products. 5 months in and my brain fog is gone, but not other symptoms. I have all my

own things in the kitchen and cut gluten use way down for my kids. However, work is another issue all together.

CarolinaKip Community Regular
CarolinaKip
Posted
  • Author

Thanks everyone for your thoughts and replies! I'm going to look at cutting out more things and eating very simply. I know it takes time, so I'm not going to worry about refactory just yet. I found my little bit of gluten today! My ZuZu lipgloss has wheatgerm oil in it. I was told the entire line was gluten-free, but when I picked up the info sheet today, the lipgloss has listed wheatgerm oil in it. I'm still searching every product and food. Thanks all I really appreciate it.

CarolinaKip Community Regular
CarolinaKip
Posted
  • Author

well, i hope you dont have refactory!!

i just looked at your "signature"- that's a nice long list of things to avoid- altho if most of us wrote down other foods that bothered us- it might look just as long.

i hope you're still experimenting with "grain free"- many of us DO feel better off all grains

another thing you should look at before you completely resign yourself to a "refractory" dx, is "Fructose Malabsorption"- since i researched that and eliminated many more foods- i feel MUCH MUCH MUCH better. excess fructose used to have me doubled over in pain SO DEBILHITATING that i would have gladly taken a Spinal Block. google Fructose Malabsorption and the "FODMAP" diet- and see if any of that rings true for you. it looks like A LOT of foods to avoid- but it's kind of different for everyone. ive completely eliminated certain foods- but am still experimenting with garlic and onions... sometimes these foods just have to be small enough portions.. for example: i can have a SMALL amount of garlic OR onions in one sitting, but i dont ever go near dates or pears.

good luck... and try not to be discouraged- a lot of us are dealing with multiple intolerances.

OH- also ask your doc if you could get tested for SIBO- that can cause similar symptoms

I've been watching oxalates and some with the fructose as well. Some days low pain others high pain. He is also watching my gallbl;adder.

CarolinaKip Community Regular
CarolinaKip
Posted
  • Author

We tried a shared household for about a year being as careful as possible and couldn't get healthy. We eat almost no processed foods. At present we haven't found any sweeteners that we can eat without glutening symptoms. We have to peel and wash just about everything. I think that there is a lot further that you can go in your diet before settling on a refractory diagnosis. I know I'd have one by now if I hadn't gotten absolutely crazy with my diet. If you eat any processed grains that could be it. If you eat any whole grains without sorting and washing first that could be it. I can't do any of those things. If you eat regular meat from the store that could be it. I can only buy the bulk packaging direct from the meat producer. Are you still eating chocolate? I haven't found one that I can eat. Do you eat chicken? That seems to be a problem no matter what. Dairy?

Some really are a lot more sensitive than others. I hope you get it figured out.

Yes, chicken and chocolate both bother me. I was eating jasmine rice and did wash it. I'd like to eat more fruit, but afraid too right now. When I have low pain, I dont want to chance it.

GFinDC Veteran
GFinDC
Posted

Looks like you haven't eliminated soy yet? I'd suggest doing that also. Most chocolate has soy in it.

cassP Contributor
cassP
Posted

Thanks everyone for your thoughts and replies! I'm going to look at cutting out more things and eating very simply. I know it takes time, so I'm not going to worry about refactory just yet. I found my little bit of gluten today! My ZuZu lipgloss has wheatgerm oil in it. I was told the entire line was gluten-free, but when I picked up the info sheet today, the lipgloss has listed wheatgerm oil in it. I'm still searching every product and food. Thanks all I really appreciate it.

they SNEAK it in wherever they can dont they!!!! so annoying. a week before i set on this 100% Gluten Free life- i really started to investigate EVERYTHING. i had done atkins & bloodtype before- so i THOUGHT i was prepared- but i had no idea how they put gluten in EVERYTHING- Mini Altoids... Lindor Truffles.. ridiculous :(

also- there's a site called something like: Glutenology or Gluten free society.. i follow them on twitter.. they seem a bit alarming- but for some of us- they might make a lot of sense.. they talk a lot about corn aggravating those with gluten intolerance. i, personally have issues with corn- the severity depends on the form it's in. High Maltose Corn Syrup just about killed me couple of weeks ago

dilettantesteph Collaborator
dilettantesteph
Posted

I was reading a study on refractory celiac disease that used two things to try and see if they could take care of it. The first was to make all the celiacs take even MORE gluten out of their diets. So less processed foods, etc...

A lot of the refractory celiacs got better.

Do you have that reference? I'd like to read it.

jerseyangel Proficient
jerseyangel
Posted

After 3 years gluten-free in 2008, I was tested for refractory sprue. My gastroenterologist at the time thought that it might be why I was still having issues.

I had an endoscopy/biopsy and it was normal so the refractory was ruled out. I am very sensitive to minor amounts of gluten and can eat very little processed food. I make sure I use gluten-free and scent free topical products and make everything from scratch.

T.H. Community Regular
T.H.
Posted

Do you have that reference? I'd like to read it.

Argh - I do, but I'm trying to find it among my research and it looks like it's gonna take a bit, sigh. Poor organization strikes again! I'll email you as soon as I ferret it out.

Possibly this is listed on medscape - that was the site I was looking at most on the day I found the study.

And now - time to go organize the files, eh?

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