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beachbel

Refractory Celiac Disease

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Hi! I am looking for anyone who has refractory celiac disease or knows a doctor who might specialize in refractory disease. I have been gluten free for almost two years and my gluten tests are going up, not down. My biopsies continue to show celiac sprue, though not as bad as in the beginning. The doctor has me on a steroid to suppress my immune system. I don't have cancer as far as they can tell, thank goodness. I have had a dietician and the person who runs the local support group look through everything I eat, makeup, soaps etc to make sure I am not getting gluten. My doctor said there are just a lot of unknowns now. I am just wondering if there is anyone else out there with a similar experience and any advice. Thanks!

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Hi beachbel,

I certainly am not well versed as I would like BUT... (don't you hate it when people say that! :( )

If you continue to show levels of active antibodies, it indicates that your body is reacting to gluten from somewhere, according to what I understand.

If your antibodies were negative you you still had no healing of your villi, I would suspect Refractory Sprue, after a reasonable period of time. A person diagnosed with Refractory Sprue does not respond (as in healing of the villi) to the gluten free diet., but would test negative for antibodies.

With a fine tooth comb, I would revisit everything you come into contact with, ingested or not. If you need help with product information, please feel free to ask.

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Do you frequently kiss a gluten eater who has not brushed their teeth before kissing you? Do you work with art materials/craft products that might contain gluten? Did y6ou replace old scratched Teflon pans, toasters, cutting boards and wooden spoons in your kitchen? Do you use a "mixed" kitchen where someone else uses flour products? Do you work somewhere where they bake gluten or cook gluten items?

If you have eliminated ANY possibility of CC.....then Im just thinking out loud here, but what I wonder about Refractory Celiac is if something else in the human diet doesnt mimic gliadin and therefore cause the autoimmune reaction, the antibodies and the subsequent intestinal damage.

Do you still have the symptoms?

I think if it were me, I would try a "grain free" diet for 3 months and see a. how I feel and b. retest blood to see if the antibodies are going down. My reasoning would be that if anything can mimic "gluten/gliadin" then it would be in another grain.

It is just a thought........

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Hi beachbel,

I certainly am not well versed as I would like BUT... (don't you hate it when people say that! :( )

If you continue to show levels of active antibodies, it indicates that your body is reacting to gluten from somewhere, according to what I understand.

If your antibodies were negative you you still had no healing of your villi, I would suspect Refractory Sprue, after a reasonable period of time. A person diagnosed with Refractory Sprue does not respond (as in healing of the villi) to the gluten free diet., but would test negative for antibodies.

With a fine tooth comb, I would revisit everything you come into contact with, ingested or not. If you need help with product information, please feel free to ask.

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Thanks very much. I did not realize that refractory sprue should test negative for antibodies, nor does my doctor. I will go through everything again and see if I can find a gluten source. I am wondering if the problem would be that I do share a kitchen with gluten eaters (my family). I keep separate dishes, wash them separately, keep separate appliances, and wash my hands after handling their food. Is this a bad idea?

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Do you share their pots and pans? Their wooden spoons? Their cutting boards?

Is any form of wheat flour EVER used in the kitchen? That fine powder gets everywhere and you cannot clean it up. It can settle on dishes, dish towels, cups, strainers for dishes, countertops....it is an ultra fine powder and you can even breath it through your nose or mouth and some can make it's way into your esophagus and be swallowed. Flour is the devil for Celiacs.

Do any of the gluten eaters share your peanut butter, butter, spreads, etc? Where they might be making a sandwich with your peanut butter and double dip the knife leaving bread crumbs in your peanut butter? This is just one example, there are other ways this can happen in a shared kitchen.

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Do you share their pots and pans? Their wooden spoons? Their cutting boards?

Is any form of wheat flour EVER used in the kitchen? That fine powder gets everywhere and you cannot clean it up. It can settle on dishes, dish towels, cups, strainers for dishes, countertops....it is an ultra fine powder and you can even breath it through your nose or mouth and some can make it's way into your esophagus and be swallowed. Flour is the devil for Celiacs.

Do any of the gluten eaters share your peanut butter, butter, spreads, etc? Where they might be making a sandwich with your peanut butter and double dip the knife leaving bread crumbs in your peanut butter? This is just one example, there are other ways this can happen in a shared kitchen.

I keep separate pots, pans, spoons, cutting boards, spreads, peanut butter etc. We do sometimes make cookies, but I am not in the kitchen while they are made or until everything is wiped down and all gluten-free dishes are in a cupboard, but maybe I will rethink using flour. Any other ideas? Thanks!

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I have difficulty telling from your original post which bloodwork you have had done as a followup, or what your levels were. It is important to note that simply retesting the TtG is not adequate. Please see below:

http://celiacdisease.net/assets/pdf/CDCFac...lowUpTests7.pdf

Follow Up Test #1:

tTG-IgA: This test result should be negative

The numerical value of the test doesn

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Dr. Cynthia Rudert in the Atlanta, Ga., area.

richard

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Hi beachbel--I've been gluten free for six years. I had never been retested before but, given my current health problems, my new gastro thought it was a good idea. My tTG, IgA was 23--positive for celiac antibodies. My endoscopy showed flattened villi. I was quite surprised. I haven't had digestive problems lately. I have muscle and joint problems.

I live by myself so the odds on cross contamination at home are minimal. I've been re-reading all my labels. I called a few more companies and re-checked websites. I stopped a supplement because the company could not tell me where the natural flavors came from. I eat three products that say "packaged in a facility that also processes wheat"; I decided I should give them up.

When I asked this forum for ideas last month someone mentioned drywall contains gluten. Have you remodeled recently? Someone else told me the powder in latex gloves can have gluten.

I don't know if this is any help. Good luck, and be sure to post if you find some obscure new gluten product! I will too.

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People baking in your house might do it. When I threw out the flour after I found out I was sick I was really careful, but still got sick for 3 weeks. Somehow I got some. You may be sensitive enough to need a gluten free household.

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I have difficulty telling from your original post which bloodwork you have had done as a followup, or what your levels were. It is important to note that simply retesting the TtG is not adequate. Please see below:

http://celiacdisease.net/assets/pdf/CDCFac...lowUpTests7.pdf

It is possbile to have TtG results that are positive, but not be consuming gluten. There are conditions other than celiac that cause elevated TtG readings. Perhaps your doctor should consider some of these conditions in addition to evaluating you for refractory sprue (which is , thankfully, very rare).

Additionally, there are other conditions besides celiac that can cause villi damage.

[url=http://www.celiac.com/articles/50/1/Main-Causes-of-Flattened-Villi/Page1.html]http://www.celiac.com/articles/50/1/Main-C...illi/Page1.html[/ur

Refractory sprue is nothing to screw around with, so definitely discuss anything you read on this forum with your doctor. I hope you figure out what the culprit is and get to the bottom things.

Thanks so much for the info and links. I am still trying to understand the blood tests and which ones matter. My Tissue Transglutaminase AB, IgA was 22 (reference range above 20 is high), My IGA was 225 (reference range 68 - 378), My IgG was detected, My IgG Titer was<1:40 (reference range greater than 1:160 is significant positive).

Which one indicates I am still getting gluten? Which test is the TtG? I really don't understand what each test means.

I appreciate the list of other things it could be - I will show my doctor.

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Oh I should also mention that I do have hypothyroidism and have been on med for it for about a month now. Any help in understanding my blood test results would be very appreciated.

Thanks.

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What thyroid med are you on? Did you call to find out if it is gluten-free? Armour and Synthroid are gluten-free. Generics might not be.

Post your labs. Let us look. Thyroid is my bag. :)

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Thanks so much for the info and links. I am still trying to understand the blood tests and which ones matter. My Tissue Transglutaminase AB, IgA was 22 (reference range above 20 is high), My IGA was 225 (reference range 68 - 378), My IgG was detected, My IgG Titer was<1:40 (reference range greater than 1:160 is significant positive).

Which one indicates I am still getting gluten? Which test is the TtG? I really don't understand what each test means.

I appreciate the list of other things it could be - I will show my doctor.

The test that will show you if you are still consuming gluten is the antiGliadin IgA. The result should be as close to 0 as possible. I don't see that test in the list you posted. Your TtG IgA is definitely positive, but as I posted above, that can be related to other things. Definitely follow up with your doctor. Are you still experiencing symptoms, or have those mostly resolved themselves?

If it were me, I would not allow any cooking with wheat flour at all in my kitchen. There is simply too much risk in that. I have read that flour particles can stay airborn for upwards of 2 hours, before settling on surfaces in your kitchen. From there, it is only a hop skip and jump into your GI tract.

I hope you find your answers soon. Your doctor is wise to be following up on things.

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Shayfl asked for my labs, here they are:

My Tissue Transglutaminase AB, IgA was 22 (reference range above 20 is high), My IGA was 225 (reference range 68 - 378), My IgG was detected, My IgG Titer was<1:40 (reference range greater than 1:160 is significant positive).

Yes, I am still having symptoms, mostly pain, but it is now much improved on Entocort (a steroid) my GI put me on. I spent a week in the hospital just recently because I couldn't tolerate any food except gatorade for over a month. I also have gastroparesis so it is hard for the GI to determine what symptoms are coming from celiac and which from GP. I just had another biopsy this week and do not know the results yet, but my GI said it looks like I still have active celiac disease. My biopsy in September showed slight Celiac sprue but it looked like it was responding to the steroid treatment.

So is the IGA test I had done, different from the IgA test that will show if I am still getting exposed to gluten? I want to make sure I have the proper IgA test done.

I appreciate everyone's ideas, it has given me a lot to talk to the dr about.

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I though you had thyroid labs for me to look at. :) Cuz you mentioned being hypothyroid. Are your meds gluten-free? Did you check?

Are you Diabetic? GP is associated with Diabetes. And Diabetes is associated with Celiac. This is a common triad.

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We are not doctors and we cannot diagnose anyone on the Internet. In fact, that would be very unwise and potentially dangerous.

You have received some really good directions to look into and good information to present to your doctor. Good luck and please keep us informed. ;)

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Sorry, I didn't mean to lead anyone to believe I am looking for a diagnosis. I am just trying to understand if the proper blood tests have been run as there has been confusion on that even with my doctor. I appreciate all the ideas everyone has given, as my doctor has even been looking for ideas too. I have had two dieticians look through everything I eat and do looking for the culprit gluten and nothing has been found. Again, thanks everyone for the ideas and info.

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Sorry, I didn't mean to lead anyone to believe I am looking for a diagnosis.

No, no...we are glad to help point you in any direction that might be helpful. :D

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    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
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