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
      128,175
    • Most Online (within 30 mins)
      7,748

    Janice Emmendorfer
    Newest Member
    Janice Emmendorfer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...