Help! Biopsy Possible Refractory

[Kathleen Smith]

Hi all

My doctor just left me a message that is scary. I went to a Celiac Research Center in NYC after a year and half going gluten free and still getting nausous all the time.

My bloodwork was great. No antigens all negative which she said shows no signs of gluten being ingested and autoimmune repsonse good. My vitamen levels are all normal. It all looked promisig on paper (except nausous alot).

She did a biopsy and it shows active celiac. She is sending it out for stains to see if it shows refractory celiac......

What do I do if its that? And what does that mean?

[Skylark]

Wow, I hope you get it sorted out. It sounds like you have access to a great clinic and medical care.

Refractory celiac, as you might have guessed, is celiac that doesn't respond to a gluten-free diet. The biopsy your doctor sent out for stains on will show them more about what is going on in your intestine and how they can treat you. I think the usual treatment is to make sure you're getting no gluten at all, and to give a steroid to help with the inflammation. I'm not a doctor to be sure but maybe someone else knows more.

[Mack the Knife]

Yep. Refractory celiac (aka refractory sprue, unresponsive celiac, non-responsive celiac) is when tests show that a celiac doesn't respond to a gluten free diet.

The following info is purely what I've managed to glean of the internet so please don't take it as gospel. Do your own research from reputable sources.

The most common reason is deliberately or accidentally not following the gluten free diet properly and still ingesting gluten somehow. Usually a dietician gets involved at this point to try to track down the problem. I'm going through this at the moment as my tests show I'm not getting better on a gluten free diet and I'm nauseous a lot. Hopefully they'll be able to track down my problem and it's no more serious than that.

But if this fails to sort out the problem then the person probably has refractory celiac disease which means they fail to get better despite a strict gluten free diet. I'm a bit hazy about whether they can test for this or whether it's a diagnosis arrived at by a process of elimination.

Refractory celiac disease can be pretty serious and usually needs further treatment (usually involving immunosuppressive therapies). I think there are two types of refractory celiac. One is not so serious but the other one is. The more serious one seems to be strongly linked to cancer and requires regular biopsies to check for lymphomas.

True refractory celiac disease seems to be pretty rare and is usually seen among older people who went undiagnosed and untreated for a long time. It's unheard of among children and adolescents.

Again, I don't know how reliable this info is so check it out for yourself.

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https://www.celiac.com/articles/710/1/Refractory-Sprue-by-Michelle-Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html

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[Gemini]

Hi all

My doctor just left me a message that is scary. I went to a Celiac Research Center in NYC after a year and half going gluten free and still getting nausous all the time.

My bloodwork was great. No antigens all negative which she said shows no signs of gluten being ingested and autoimmune repsonse good. My vitamen levels are all normal. It all looked promisig on paper (except nausous alot).

She did a biopsy and it shows active celiac. She is sending it out for stains to see if it shows refractory celiac......

What do I do if its that? And what does that mean?

I am a little confused about the message from the doctor. If your antibody levels look good and your vitamin levels are good, how is it they think it's refractory sprue? Usually a patient is still sick with symptoms and their blood work does not return to normal...meaning the vitamin deficiencies. You wouldn't have normal levels if you have refractory sprue. I wonder if you have an additional food intolerance which might be keeping you from complete villi healing and giving you the nausea you are having? Other conditions will flatten villi also. It's also common to have more than one problem, once diagnosed with celiac disease. I would think the nausea would go away if gluten were totally removed from the diet and the nausea was from gluten ingestion only.

I wish you luck and hope they get to the root of the problem but I would get a second opinion if they diagnose refractory sprue and want to put you on steroids.

[Kathleen Smith]

Thank you all for your replies.

I am confused too if my bloodwork is so good. I went to the celiac specialist for nausea that wasnt getting better and I couldnt link it to anything specific. My main symptoms since going gluten-free are nausea and constipation.

This doctor looked at my all my other records and wanted to redo the bloodwork and endoscopy. We'll see, I am going back next week.

[ravenwoodglass]

Thank you all for your replies.

I am confused too if my bloodwork is so good. I went to the celiac specialist for nausea that wasnt getting better and I couldnt link it to anything specific. My main symptoms since going gluten-free are nausea and constipation.

This doctor looked at my all my other records and wanted to redo the bloodwork and endoscopy. We'll see, I am going back next week.

Are you consuming soy? If you are you may want to eliminate it. Many of us are sensitive to it and we tend to increase the amount we consume because it is in so many gluten free products. Soy does exactly what you describe, nausea and C to me and it took me forever to figure that one out. It is a good idea to eliminate dairy also until you have fully healed.

[vbecton]

Thank you all for your replies.

I am confused too if my bloodwork is so good. I went to the celiac specialist for nausea that wasnt getting better and I couldnt link it to anything specific. My main symptoms since going gluten-free are nausea and constipation.

This doctor looked at my all my other records and wanted to redo the bloodwork and endoscopy. We'll see, I am going back next week.

My doctor is in the mist of checking me for Refractory as well. I responded pretty well to the gluten-free diet at first, but now most symptoms have returned, minus the low blood sugar. It's very frustrating. My most concerning symptom is the fatigue. It's unlike anything I've ever felt before. I'm awaiting my lastest blood work to rule out amino deficiencies, or malformed cells, etc...

Just like you, all my vitamin levels have returned to normal as of 1 month ago. My thyroid is good. My endoscopy was normal, despite slight scalloping. My GI doc wants to do a pill camera to see what's happening in my lower intestines. He said there are some Celiacs who have zero damage in the small intestines, but have visible damage below that. I'm pretty sure I'll do the pill camera, but I refuse to do a gluten challenge because whatever is making me sick is STILL making me sick despite being gluten-free.

Let us know what you come up with and I'll do the same. My doc said this would be treated with steroids (uhhh, not looking forward to that!!!). Good luck!

[dilettantesteph]

Have you seen all the posts in here lately about the Tricia Thompson study which found contamination of gluten free grains? Maybe try not eating grains for awhile and see if that helps. It helped me.

You can get negative blood work while eating small amounts of gluten. That happened to me too.

[Kathleen Smith]

Have you seen all the posts in here lately about the Tricia Thompson study which found contamination of gluten free grains? Maybe try not eating grains for awhile and see if that helps. It helped me.

You can get negative blood work while eating small amounts of gluten. That happened to me too.

I have seen all the posts and was thinking about trying that.

[cyberprof]

I have seen all the posts and was thinking about trying that.

Yes, that's what I would suggest for you and for anyone still having symptoms. Eat only at home, no restaurant meals or meals at friends' houses (sad I know), no crackers or gluten-free goodies or flours or rice. Eat whole foods - lettuce, spinach, other veggies, fresh fruit (not dried unless you dry it yourself), whole potatoes (no french fries), sweet potatoes, meat, fish, shrimp (no cold cuts), eggs. Avacados. You could start an elimination diet aat the same time to be really sure. Also give up milk, all dairy, soy and perhaps eggs.

Eat homefries instead of frozen french fries, make your own tomato sauces, eat fresh corn not tortillas, use only fresh basil and other herbs. Don't eat cereal. Eat uncured ham and pork.

Even though I love almonds and think they're really good, put nuts on your do-not-eat list unless you shell them oor harvest them yourself.

Try this for six months and see what happens. Best of luck to you!

[Kathleen Smith]

I am going to start this.

no corn or corn chips either right?

I can have potatoes and sweet potatoes though?

[Gemini]

I have seen all the posts and was thinking about trying that.

The problem with this is that your blood work is good and if you were being repeatedly glutened by flours, it would start to show in your blood work. Small hits on rare occasions would not elevate blood work but repeated hits would.

If you are confident that you are not ingesting gluten and your blood work is really good (assuming your doctor tested for the antibody in your blood), then this problem is most likely NOT a gluten problem. It really sounds like an additional intolerance. I wouldn't give up too many things at once because then it will take longer to figure out which one it is. Dairy and soy are the biggies but I would try and look at my diet and see if there was any one food group you eat on a regular basis and start with that. Do you eat dairy and soy in larger quantities? Then I would focus on those. Corn can be a big allergen and it's in many products that are gluten-free.

Yes, you can eat potatoes of all kinds and brown rice is another good staple that is high in nutrients. Rice is one of the lowest allergic food sources so that should be very safe. I eat a lot of brown rice and have zero issues with it. One of my biggest symptoms pre-diagnosis was nausea so I know how bad that can get. You will figure this out...be patient!

[cyberprof]

I am going to start this.

no corn or corn chips either right?

I can have potatoes and sweet potatoes though?

I would suggest no tortillas or corn chips. Corn on the cob would be fine. Ordinarily, I would say that most canned corn or frozen corn are going to be safe. But you may be looking for 99.999% certainty that you are eating gluten-free. So that to me means very little that has been "processed" by humans or machinery.

Sweet potatoes and white potatoes should both be gluten-free in their natural state. Cook them yourself.

These are just my two cents worth for your specific question.

[dilettantesteph]

The problem with this is that your blood work is good and if you were being repeatedly glutened by flours, it would start to show in your blood work. Small hits on rare occasions would not elevate blood work but repeated hits would.

That wasn't true for me. Repeated hits did not show up in my blood work.

[GFinDC]

I'd eliminate nightshades at some point also, at least for a trial of month or so. Sweet potatoes would be better than regular potatoes. I can eat sweet potatoes ok but not white potatoes. Tomatoes, and peppers are also nightshades to watch out for.