Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Refactory Celiac


CarolinaKip

Recommended Posts

CarolinaKip Community Regular

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cassP Contributor

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

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

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

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

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

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



T.H. Community Regular

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

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

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

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

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

cassP Contributor

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

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

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

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?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,350
    • Most Online (within 30 mins)
      7,748

    JohannesW85
    Newest Member
    JohannesW85
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Itsabit
      Hi. Yes. I’m awaiting my Biopsy results. I had B12 and other labs drawn on Mon, including Thyroid levels, as I am on Levothyroxine for radiation-induced hypothyroidism. Those levels should indicate any iodine issues. We had discussed the urine iodine, but he went with the thyroid instead. We’ll see.  I never had any of those Pellagra skin changes, or Casal’s necklace. Just itchiness in the supraclavicular hollows on both sides of my neck, and the anterior aspect as my neck radiation site.  The hollows had no changes until I scratched them, then I got the rash on those areas like the ones I have now scattered in different areas, usually on both sides with the exception of my anterior thighs. My right is affected, my left isn’t. I am 70 and have all my teeth as well - amazingly after having had max dose radiation in 2002. 😂 Unfortunately, because of long term changes in my oral mucosa because of it I can’t use mouthwashes - even non-alcohol ones, as they all burn my mouth like fire. Toothpastes burn as well, but not nearly as bad. I have an electric toothbrush but it is getting more difficult to use due to increasing trismus. Some days I cannot open my mouth wide enough to get the electric brush between my back teeth, so on those days I use a regular one. Gotta do what you gotta do.  Thank you for your input. Any insight I can get into this is appreciated. So, for now it’s the waiting game for test results, then we can form a treatment plan going forward. 
    • James47
      Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x
    • James47
      Hi everyone I'm James, I hope you are all feeling well??. Accidentally had gluten at weekend and I've had severe diarrhea since sat night. My question is ,the longer someone like myself has been following a strict gluten-free diet will the exposure to gluten be lot more extreme as body now has been free of it well over a year ? Any information be much appreciated and any tips on how to stop the constant diarrhoea I have currently also be appreciated guys x
    • Cathijean90
    • Wheatwacked
      I use Listerine.  Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic.  The $15 ones at the supermarket.  At 73 I still have all my teeth.  While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator.  Have any of your dermatologists ever done a biopsy for dermatitis herpetiformis?  I may have missed it.  Note the similarity of Casal's necklace to one of your symptoms. Pellagra rash is a characteristic skin manifestation of niacin (vitamin B3) deficiency. It typically presents as:  Erythema: Red, sunburned-like areas of skin, often on the face, neck, arms, and legs.  Scaliness: Dry, flaky skin that may become thickened and crusty.  Hyperpigmentation: Darkened patches of skin, particularly in sun-exposed areas.  Casal's necklace: A dark, pigmented band around the neck.  I am currently taking these} Vitamin D 10,000 IU (250 mcg) DHEA 100 mg 500 mcg Iodine  10 drops of Liquid Iodine B1 Thiamin 250 mg  B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg 4 times a day for hyperlipidemia. B5 Pantothenice Acid 500 mg Vitamin C 500 mg     Selenium 200 mcg  Several times a week
×
×
  • Create New...