Diagnosed As Refractory Celiac Disease-Failed Steroid Treatment

[Roda]

you have another intolerance or you may find you have been eating something that claims to be gluten free but contains enough trace gluten to still make you sick. I cannot eat Bob's Red Mill's products because even though they are milled in a "gluten free" facility, they also are made on the same equipment as oats and I cannot tolerate even gluen free oats.

I started having problems a year ago after doing well for a year and went 8 months trying to figure it out. In August I did the drastic thing. If I didn't make it I didn't eat it. I eliminated all processed gluten free products and found I can not tolerate Bob's Red Mill's products either for the same reason as GlutenFreeManna. I knew I couldn't tolerate gluten free oats, but until then I didn't think about the cc from them. My doctor wanted me to take steriods too, but I really didn't want to go there so I told him let me eliminate more stuff and go to a very basic diet. I also was prescribe creon for the unrelenting D. I am doing so much better now and I am no longer taking the creon. I will be going back soon to get my blood redrawn and see if my Igg gliadin antibody has gone down. All my others were normal but that one and the doctor said it was from gluten sneaking into my diet even though I was doing all the right things like you. Definately consider trying it. I am now able to eat Betty Crocker gluten free products and flours from Ener G without problems.

[akceliac]

Have you considered taking probiotics? Bacterial overgrowth is a real condition with celiac disease patients and probiotics is often too simple a solution for most physicians to consider.

[ryebaby0]

Ask your doctor about autoimmune enteropathy. My son is celiac and has AE, which is very rare, but presented in his case as refractory sprue. (Docs at Johns Hopkins don't believe there is any such thing, btw). He was started on prednisone, TPN (total parental nutrition -- a nasogastric tube feeding) and weaned onto ProGraf, a strong immunsuppressant usually used w/ transplant patients to prevent graft rejection. I am certainly no doctor, and yours sounds on top of things. His symptoms were continuing weight loss, diarrhea, despite being on a strictly controlled diet. He transitioned from a gluten-free diet to just rice and olive oil, then gradually transitioned back to a conventional gluten-free diet. He is still on Prograf, and always will be. There are distinct markers of AE that a biopsy (endoscopy) can find.

My main point is keep listening to yourself, and advocating, and not taking "it hasn't been long enough" for an answer. Best of luck to you ~

[krose710]

Ask your doctor about autoimmune enteropathy. My son is celiac and has AE, which is very rare, but presented in his case as refractory sprue. (Docs at Johns Hopkins don't believe there is any such thing, btw). He was started on prednisone, TPN (total parental nutrition -- a nasogastric tube feeding) and weaned onto ProGraf, a strong immunsuppressant usually used w/ transplant patients to prevent graft rejection. I am certainly no doctor, and yours sounds on top of things. His symptoms were continuing weight loss, diarrhea, despite being on a strictly controlled diet. He transitioned from a gluten-free diet to just rice and olive oil, then gradually transitioned back to a conventional gluten-free diet. He is still on Prograf, and always will be. There are distinct markers of AE that a biopsy (endoscopy) can find.

My main point is keep listening to yourself, and advocating, and not taking "it hasn't been long enough" for an answer. Best of luck to you ~

Thank you! I really appreciate what you have just said. It does get frustrating hearing "it hasnt been long enough", when my body cannot physically take the pain much longer. I am on daily probiotics for bacterial overgrowth as well, so I can check that off the list. I will try to eliminate more products. I have been eating nothing but fresh fruits, vegetables, and meats, all prepared in the home for the past few weeks. Before that I was still eating gluten free, just less limited. Thanks everyone! I will post tomorrow after the long awaited doctors appointment. ONE STEROID DOSE LEFT FOR TODAY =)

[frieze]

Ask your doctor about autoimmune enteropathy. My son is celiac and has AE, which is very rare, but presented in his case as refractory sprue. (Docs at Johns Hopkins don't believe there is any such thing, btw). He was started on prednisone, TPN (total parental nutrition -- a nasogastric tube feeding) and weaned onto ProGraf, a strong immunsuppressant usually used w/ transplant patients to prevent graft rejection. I am certainly no doctor, and yours sounds on top of things. His symptoms were continuing weight loss, diarrhea, despite being on a strictly controlled diet. He transitioned from a gluten-free diet to just rice and olive oil, then gradually transitioned back to a conventional gluten-free diet. He is still on Prograf, and always will be. There are distinct markers of AE that a biopsy (endoscopy) can find.

My main point is keep listening to yourself, and advocating, and not taking "it hasn't been long enough" for an answer. Best of luck to you ~

nasogastric is NOT TPN, tpn is intravenous nutrition. Parenteral is IV, enteral is gut.

[ryebaby0]

*Sigh* You are quite right. He had both,and I got my acronyms mixed. Not to mention I spelled parenteral incorrectly as well....

[T.H.]

I hope your appointment went well today!

I am in the same boat as dilettanteSteph - super, crazy sensitive. I am still trying to determine how sensitive I am and working toward feeling healthy.

I was also not getting better after a few months gluten free. At that pount, I had already bought organic foods (curious, I used Whole Foods mostly, too!), I had dropped dairy, eggs, and soy and processed foods. I had to drop lots of fruits, veggies, beans and such because I started getting even sicker, while eating less than I had when I had gluten!

After keeping a food journal to see what made me the sickest, I lived on less than 10 foods for about 8 months, I think it was. My doctor and GI doctor couldn't figure out what was wrong. A wonderful allergist couldn't figure out why everything was making me sick, either. And then a gal here was kind enough to email me about the possibility of extreme sensitivity to gluten, and approaching the problem from that angle, it is now finally starting to improve. My allergist even took down all the information I'd figured out and took new measurements, to document how much better I was doing on my 'extremely gluten free diet.'

I don't have it all figured out yet - perhaps there are a few intolerances in there, or other problems, but gluten seems like it is the main issue for me.

I know this may not be the case for you, but on the off chance it might help some more, after all the lovely information everyone has been offering...

1. How are you cooking your fruits, veggies, and meat? Do you use any oil, spices, salt? During all of my 'trying to find safe food,' I found out my oil was glutening me (processed on a line with wheat germ oil), and my spices were glutening me, and even my salt! (first, with added corn that they use to stabilize iodine in all iodized salts. Corn is often cc. Then, with new salt, I got glutened with contamination during processing).

2. Do you wash your produce with soap and water? As ick as that sounds, I have only been able to eat a few veggies and fruits now if I wash them with gluten-free soap (I use 7th generation). I can't eat apples, pears, or citrus unless I contact the farmer and make sure they don't have any wax on them (the shellack wax used on these usually has soy or casein added, and the soy is often gluten cc). Some produce I can peel after washing and be okay, but it's honestly been a huge struggle not to get sick off of them.

3. One thing that worked for me, and might help you figure some of this out? Check out gardening, indoor or outdoor, depending on your climate. This was one of my first clues that I was on the right track. I have grown lettuce and herbs and a little fruit, and I can eat them just fine. But buying these at Whole foods, I still get sick most of the time. That's a good sign that you are reacting to a contaminant (gluten or something else), when you can eat some brands of something, and not others, ya know? If you grow some things and can eat them without issue, it may help you eliminate problems like fructose malabsorption or sulfite sensitivity - things that involve types of foods rather than CC.

4. What type of meat do you eat? Do you eat poultry at all? Do you buy cuts prepared at the butcher's counter, or ones that are packaged before they get to the store, like at the slaughter house? Poultry has a slightly higher gluten contamination on the skin because of how defeathering is performed, so the skin may be bad if you are really sensitive. Cuts prepared in the store, at the butchers counter, have a much higher chance of cc, because the butchers process all their gluten coated meats in the same room, typically. If you can get meat that is packaged at the slaughter house and frozen, that lowers the CC risk. Also, if you talk to the meat counter, you can get big hunks of meat, still sealed from the slaughter house, that you can take home and slice up yourself. Like 10 pounds at a time or so.

Again, hoping that your appointment went well, and that you can find the answer to why you are feeling so bad!

Oh, before I forget! I had surgery during all this, was given pain pills, and got terribly sick. In the end, my doc. gave me steroids because he thought I was reacting to something in the pain pills, maybe. It helped, but as the steroids tapered down, I was feeling bad as ever.

Since then, best I can tell...the corn used in almost all medication has enough gluten CC to make me very ill. And that includes the steroids that are supposed to help with the inflammation! I have gotten a gluten reaction from all of them, now that I am finally well enough to tell when I GET a reaction.

Figured I'd pass that along, in case steroids are still being recommended to you and you need to make a decision about what to do.

[krose710]

Well the verdict is in...and at this point were "calling in the big guns" as my gastroenterologist said. At this point, my GI is baffled by my small intestine. I am being placed on anti-anxiety medication to basically "numb" me of feeling until we can make progressive steps forward. I am being referred to an Academic Specialist at Baylor Medical Clinic where new trials and treatments are being put into action every day. My GI made the comment yesterday that my small intestine has such great damage to it, that it would appear that I am a celiac patient that eats nothing but bread for breakfast, lunch, and dinner. Of course, thats not the case, and that is why at this point, we are calling in more medical specialists. On Thursday I am being hooked up to have a capsule endoscopy (a pill you swallow that has a camera on each end. It goes completely through the digestive tract taking millions of pictures. You wear a monitor from about 8 am to 4 pm that basically stores all of the pictures taken by the pill and translates it into a video). During this procedure they will be able to look further than they can with an ordinary endoscopy. What they are looking for, but hoping not to find, is ulcerative jejunitis...basically a rare condition in which inflammation to the small intestine has reached an all time high and there is basically no return to normal function. While it is scary to consider that is a possibility, part of me just wants some sort of answer, as horrible as that may sound. I will also undergo my first bone scan to make sure that I am not losing bone already. Again I appreciate all the words of wisdom, advice, and encouragement that many of you have offered. All those sufferring with Celiac disease or any other intestinal disease know that it is a challenging matter, where ruling out things is how we reach diagnosis. So while the road to finding out just what causes my intestine to continue to inflame, I keep moving forward with the hope and faith that we will eventually reach an answer.

[kareng]

You are lucky. May not feel that way, but you are. You have found doctors that appear to know what they are doing. And are trying to find a solution. Good luck. I hope you get some answers soon.