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Janet123

Refractory Coeliac Disease Type1/Type11

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Hi Janet,

We have had a few people post about having refractory celiac disease.  I am not sure any of them are active forum members though.  Are there questions we might be able to help with about it?  We may not be experts on it.  But we are cheap. :) 


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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I have been diagnosed with at present in the last year with Type 1 refractory disease. I am worried it might move to type 11. I am seeing a Professor who is excellent on the subject. But my Ttg has risen like over 100..... I wonder if anyone has a similar condition?

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There  may be type 1 refractory people on the board Janet.  Hopefully someone will spot your post and join in the conversation.  There was a  study on refractory celiac awhile back where they found a high percentage of refractory celiacs were not truly eating a 100% gluten-free diet.  They put a group of supposedly refractory celiac people on a truly 100% gluten-free diet and many of them recovered.  So that might be something to consider.

But not all of them recovered.  So it's possible that you might too.  If you are eating any processed foods that might be something to try stopping.  It certainly won't hurt anything to go to a whole foods carb free diet for a few months and see if there is improvement.

The other treatment is immune system suppressors.  Those are used for some other AI conditions too.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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I think they may mean type 2, and be using the Roman numerals here, as I've never heard of type 11.

We have many articles summarizing new research and treatment of refractory celiac disease here:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/

but the main thing is to be 100% gluten-free, as I believe that research has shown that many celiac end up in this stage because they are getting hidden gluten in their diets, which probably means they eat outside their homes.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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Hi Janet.  Are you newly diagnosed?  How many months or years have you been on your diet?  Is this your first blood test?  Did you get an endoscopy with biopsies?  I'm no expert but I assume most GI docs give newly-diagnosed patients awhile before doing a follow-up scope or even addressing that issue, esp. because it take longer for some patients to heal.   It seems kind of unusual for a doc to give someone that kind of diagnosis without first evaluating their response on a gluten-free diet. Also, not intending to cast aspersions on your professor ...but, if his opinion is your first diagnosis of celiac disease, I suggest you consider seeking a second opinion from a GI/celiac disease expert with a thriving, active practice, and daily experience scoping and seeing patients.  Many academics who spend most time in a classroom have either completely retired from active medical practice or rarely few patients.  IMO that's a disadvantage for them and you.  

GFinDC and Scott make great points about the diet, compliance, and/or getting inadvertent gluten exposure. I may be in minority on this chatboard but I am VERY skeptical of ANY packaged food (or company website or restaurant menus) touting gluten-free status--even those claiming "certified gluten-free" and promising that testing is done. 

1.  There is no way to really know the frequency and thoroughness of inspection and verification.  There are US regulations governing this issue (and food safety in general) but, in reality, most food manuf./companies are pretty much left to the "honor system" to self-regulate, 2. There just aren't enough funds, inspectors to be able to efficiently handle all such claims in this country.  (This is already evident as we keep hearing from time to time about previous outbreaks of food poisoning in agriculture and meat industries.)  So, as an admittedly paranoid gluten-free diet "newbie," I always buy and eat completely natural food and avoid ALL packaged, processed food to be on the safe side.

I have heard from some people who think once their blood tests return to the normal range after first diagnosis that they are completely healed, so okay to safely return to pre-celiac disease eating habits...or that they can fully heal by just reducing gluten or "cheat just a little bit only once in a while" (instead of avoiding altogether).   I only wish!  I keep having cravings and nightmares about croissants and donuts...sigh. 

  

 

 

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15 hours ago, Kate333 said:

Hi Janet.  Are you newly diagnosed?  How many months or years have you been on your diet?  Is this your first blood test?  Did you get an endoscopy with biopsies?  I'm no expert but I assume most GI docs give newly-diagnosed patients awhile before doing a follow-up scope or even addressing that issue, esp. because it take longer for some patients to heal.   It seems kind of unusual for a doc to give someone that kind of diagnosis without first evaluating their response on a gluten-free diet. Also, not intending to cast aspersions on your professor ...but, if his opinion is your first diagnosis of celiac disease, I suggest you consider seeking a second opinion from a GI/celiac disease expert with a thriving, active practice, and daily experience scoping and seeing patients.  Many academics who spend most time in a classroom have either completely retired from active medical practice or rarely few patients.  IMO that's a disadvantage for them and you.  

GFinDC and Scott make great points about the diet, compliance, and/or getting inadvertent gluten exposure. I may be in minority on this chatboard but I am VERY skeptical of ANY packaged food (or company website or restaurant menus) touting gluten-free status--even those claiming "certified gluten-free" and promising that testing is done. 

1.  There is no way to really know the frequency and thoroughness of inspection and verification.  There are US regulations governing this issue (and food safety in general) but, in reality, most food manuf./companies are pretty much left to the "honor system" to self-regulate, 2. There just aren't enough funds, inspectors to be able to efficiently handle all such claims in this country.  (This is already evident as we keep hearing from time to time about previous outbreaks of food poisoning in agriculture and meat industries.)  So, as an admittedly paranoid gluten-free diet "newbie," I always buy and eat completely natural food and avoid ALL packaged, processed food to be on the safe side.

I have heard from some people who think once their blood tests return to the normal range after first diagnosis that they are completely healed, so okay to safely return to pre-celiac disease eating habits...or that they can fully heal by just reducing gluten or "cheat just a little bit only once in a while" (instead of avoiding altogether).   I only wish!  I keep having cravings and nightmares about croissants and donuts...sigh. 

  

 

 

 

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Hello Kate333, Thank you for replying.I happen to come across this site just recently. I could not go into my whole life with Coeliac but I was, (shall I start from the age of say 60yrs) diagnosed with Coeliac but never had any symptoms so I just ate everything possible never tried a Gluten Free diet until about 3 years ago. After 2 years I decided to see a consultant and was told to have a blood test which showed my I believe the itv check which showed very high like 150.It was then that I seriously started to have a strict Gluten Free diet. My next blood test had gone down to 70 then some months later again it went down slightly but last year it suddenly shot up and the consultant was very concerned so she sent me to the top Proffesor in the country here in Uk and he did a biopsy and also had the Camera down into my bowels. The result came that I had refractory type 1.  I know that type 2 is not good it could be cancerous. The professor put me on Budesonide which also has steroid and i have been fine till 8 months ago. I religiously stick to the Gluten Free foods. I never go out to eat. I cook always home food. I read all the labels and I do know about contamination. Unless I see on the package the words Gluten Free I do not chance it.  I am now waiting to have another biopsy when it is safe to go into hospital. There is no rush as I do not suffer with anything. The Proffesor keeps in touch with me.all my blood tests are good except this Itg being on the high side.

I just wanted to know anyone who had Refractory disease! Thank you.

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2 hours ago, DJFL77I said:

how long have you been eating gluten free? are you sure you're eating 100% gluten free?

I have been seriously eating Gluten Free foods for the last 2 - 3 years.DEFINITELY eat gluten-free foods. I also know about contamination. I always cook at home, very good diet. Do not go out to eat ever.

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Janet123,

Refractory Celiac disease a term used generally described Celiacs who do not improve after 2 years on a gluten free diet.

And it sound like your antibodies are now going back up.

See this thread it might help you.

https://www.celiac.com/forums/topic/154355-finding-certified-versions-of-naturally-gluten-free-products/page/2/?tab=comments#comment-1082155

I will quote Knitty Kitty because she has good information that might help you. It could be corn!

quoting "I believe you are not cheating.

"Maize (Corn) Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820067/

"Maize is one of the most commonly consumed grains in the gluten-free diet. Despite the low content of zeins in maize-containing foods compared with that of gliadins in wheat-containing foods, maize could be responsible for persistent mucosal damage in a very limited subgroup of celiac disease patients. If our hypothesis is proven, zeins could be classified as harmful for some celiac disease patients, especially those showing a poor response to a gluten-free diet."

 

"Mucosal reactivity to cow's milk protein in coeliac disease"

https://pubmed.ncbi.nlm.nih.gov/17302893/

"A mucosal inflammatory response similar to that elicited by gluten was produced by CM protein in about 50% of the patients with coeliac disease. Casein, in particular, seems to be involved in this reaction."

 

Not everything is cross contaminated.  Somethings cause problems for Celiacs.

Try the Autoimmune Paleo Protocol diet. It works in reducing inflammation and getting those test numbers down.  

Take a B 100 Complex vitamin and Vitamin D.

And keep a Food/Mood/Poo'd Journal!  Scott is right."

It is me again.....It think the thread explains itself....if you know you are not eating gluten.....then the logical next step is what else in your diet could elevating your antibodies other than gluten.

I hope this is helpful but it is not medical advise.

Posterboy,

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6 hours ago, Janet123 said:

Hello Kate333, Thank you for replying.I happen to come across this site just recently. I could not go into my whole life with Coeliac but I was, (shall I start from the age of say 60yrs) diagnosed with Coeliac but never had any symptoms so I just ate everything possible never tried a Gluten Free diet until about 3 years ago. After 2 years I decided to see a consultant and was told to have a blood test which showed my I believe the itv check which showed very high like 150.It was then that I seriously started to have a strict Gluten Free diet. My next blood test had gone down to 70 then some months later again it went down slightly but last year it suddenly shot up and the consultant was very concerned so she sent me to the top Proffesor in the country here in Uk and he did a biopsy and also had the Camera down into my bowels. The result came that I had refractory type 1.  I know that type 2 is not good it could be cancerous. The professor put me on Budesonide which also has steroid and i have been fine till 8 months ago. I religiously stick to the Gluten Free foods. I never go out to eat. I cook always home food. I read all the labels and I do know about contamination. Unless I see on the package the words Gluten Free I do not chance it.  I am now waiting to have another biopsy when it is safe to go into hospital. There is no rush as I do not suffer with anything. The Proffesor keeps in touch with me.all my blood tests are good except this Itg being on the high side.

I just wanted to know anyone who had Refractory disease! Thank you.

Hi again Janet.  I cannot emphasis these 2 points enough:

1.  Please don't be misled or fooled by a lack of overt symptoms.  Just because you are lucky enough to not feel bad now or have any GI (or other) symptoms, that doesn't mean you aren't consuming gluten and damaging your intestines. 

2.  If your blood test numbers have started rising again after beginning what you consider a gluten-free diet, it can only mean one thing: you are STILL being exposed to gluten.  You say you are careful to read labels and and keep buying and eating packaged foods. Esp. at this stage in your illness (when you are on steroids), you just cannot afford to any longer roll the dice and take "gluten-free labels" on packaged foods at face value.  Why risk your health and life, trusting these claims?  Many packaged, processed food companies adopted gluten-free advertising/sales pitches after realizing these labels--even if blatantly false--are key in protecting sales profits because they saw that the public (including millions of people without celiac disease) became educated about gluten health issues and devoted to healthier eating and avoiding it.  Also, make sure you are not brushing your teeth with paste made with gluten or taking meds or vitamin supplements which use gluten as binders.   BTW, many companies hide gluten and other junk fillers from consumers by using obscure ingredient names on labels ("food starches" is a big one).

If I were you (and at a point where I needed steroids), I would simply not buy, cook or eat ANY packaged foods.   Why not just give that stuff up for a few months (eat ONLY fresh fruit, veggies, meats) and see if your lab numbers improve? 

   

 

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Researchers have found that some people labeled as having refractory celiac disease actually are just still eating a diet contaminated with gluten.

https://pubmed.ncbi.nlm.nih.gov/23448408/

However, if the intraepithelial lymphocytes seen in your biopsy are abnormal that could be genuine refractory celiac.

I hope that your next biopsy shows that you do not have Type 2.

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1 hour ago, Kate333 said:

Hi again Janet.  I cannot emphasis these 2 points enough:

1.  Please don't be misled or fooled by a lack of overt symptoms.  Just because you are lucky enough to not feel bad now or have any GI (or other) symptoms, that doesn't mean you aren't consuming gluten and damaging your intestines. 

2.  If your blood test numbers have started rising again after beginning what you consider a gluten-free diet, it can only mean one thing: you are STILL being exposed to gluten.  You say you are careful to read labels and and keep buying and eating packaged foods. Esp. at this stage in your illness (when you are on steroids), you just cannot afford to any longer roll the dice and take "gluten-free labels" on packaged foods at face value.  Why risk your health and life, trusting these claims?  Many packaged, processed food companies adopted gluten-free advertising/sales pitches after realizing these labels--even if blatantly false--are key in protecting sales profits because they saw that the public (including millions of people without celiac disease) became educated about gluten health issues and devoted to healthier eating and avoiding it.  Also, make sure you are not brushing your teeth with paste made with gluten or taking meds or vitamin supplements which use gluten as binders.   BTW, many companies hide gluten and other junk fillers from consumers by using obscure ingredient names on labels ("food starches" is a big one).

If I were you (and at a point where I needed steroids), I would simply not buy, cook or eat ANY packaged foods.   Why not just give that stuff up for a few months (eat ONLY fresh fruit, veggies, meats) and see if your lab numbers improve? 

   

I do not eat any packaged food or microwave meals. I only eat fresh food which I cook like vegetables, nuts, 

lots of fruit, fish, meat, chicken..never eat out. I have a very good varied diet. Bread states gluten-free. I have a diatitian who is going to ring me up.I shall tell her all that I eat. I eat much the same all the time, nothing has changed in what I eat all along.

 

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1 hour ago, Janet123 said:

Bread states gluten-free.

Hi again Janet.  Also, your earlier notes did refer to label reading and packaged foods.   That's what sparked my concern and made me think perhaps you could benefit from some clarity about the meaning of gluten-free diet.   

I'm glad you are eating mostly a fresh diet and avoiding eating out...but unless you bake that bread yourself from scratch, using confirmed, COMPLETELY non-G ingredients, packaged bread (or even freshly baked bread bought in a bakery, made by a baker who swears it's gluten-free) is still high risk for possible G exposure, despite the label/company claims or assurances to the contrary.   Bakeries often share ovens and cutting boards with gluten-filled products and gluten filled flour can innocently but easily contaminate your order. 

The same kind of risks for gluten exposure also exist with "gluten-free"-labelled oats or "gluten-free"- labelled nuts or "gluten-free" labeled rice because many if not most of these crops are harvested, processed, packaged in the same facilities, on the same machines shared with wheat, rye, barley products.  Hence the cross-contamination issues and even a microscopic crumb of gluten can irritate a super-sensitive gut.   It's not enough to stick to exclusively gluten-free foods "most of the time" or "mainly" or simply reduce your consumption of G products.  You must eat 100% gluten-free all the time....no exceptions...ever.  I know it's not easy to accomplish or adjust to that...but it's the ONLY way you will have a shot at healing your gut. I hope your dietician is well-versed in celiac disease issues and can better explain all the nuances of gluten-free diet for you.  

Best of luck on your healing journey!

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