Refractory Sprue, Super Sensitivity, Prednisone, And Comorbid Autoimmunity.

[CNV2855]

I would like to preface this post with me saying that this will be the last long winded post I make, as I know I'm not the only sick person here, and that I'm actively seeking a specialist, and doing my very best to see someone who can help me. The waiting list for most of the specialist centers is around 3-6 months, so I may be waiting. My entire family is motivated trying to get me proper medical care so it's only a matter of time. However in the meantime, I'd answers to a few difficult questions, and that's why I asked in this forum because we're typically the more affected bunch.

I'm in my mid 20's and I have both Celiac Disease and Sjogren's symptoms, but seronegative for Sjogren's specific antibodies. I almost assuredly had undiagnosed Celiac disease throughout my entire childhood which eventually developed into these secondary complications roughly nine years ago. Although I'm seronegative, I have all of the classic presentations and have been prescribed all available mild-moderate medications for SS.

I've suffered quite a bit in the last nine years that I developed Sjogren's and it has completely transformed (ruined is a better word) my life. I really can't put it into words, but anyone familiar with someone who has it will recognize that there is a lot of suffering associated with the disease (especially those with systemic symptoms). My main goal is to try and put them into remission with any means neccessary, and I do believe that once I fix my intestines that my systemic symptoms will respond greatly. I'm basing that off of the observation that my symptoms (all of them) are DIRECTLY correlated to the amount of gluten I ingest, or other problem proteins.

I have been on the gluten free diet for between 5-6 years. I have experienced a reduction in inflammation and symptoms, however all of the symptoms continued to persist, albeit at a lower intensity(including GI symptoms). Gluten exposure has always caused extreme flares and drastic increases in all of my symptoms. I do not think I have healed, based on weight loss, appetite, and GI symptoms. I'm having a biopsy performed very soon to confirm this, but I'm fairly sure that I'm still suffering from enteropathy.

I was on prednisone for three months for Sjogrens and my Celiac symptoms responded amazingly. The medication worked wonders, showing me exactly how sick I was. I had almost complete functionality restored which indicated to me that I can actually resume a normal life if I can get the inflammation under control. I'm going to assume I responded histoligically based on the observation that my GI symptoms quickly normalized and after eating food, I would gain energy. This is the first time in my entire life, as far back as I can remember that I've felt better after eating. It was an amazing feeling. I also had more energy than I've ever had, even my testosterone levels normalized, and the inflammation quickly disappeared.

I felt great.

While on it, I "reacted" to less food and was able to tolerate gluten free processed foods, as well as the other proteins that I had problems with. This led me to inadvertently consuming gluten, quite a lot of it after I had weaned off.

Now here's where it gets interesting. While weaning off of it, but before being glutened, my symptoms stayed in "remission" for about a week... until I got glutened, then it was back to square one. My symptoms all flared and returned following this glutening.

While off of all medications, I discovered a diet that I was responsive to, and it was the first time (off of medications) that I've ever had stool normalization. Problem is that I took a supplement that was "free from wheat" and got glutened really bad, and now I'm back to square 1 again. Tested the supplement and got two high positive results so I know that's what it was. Free of "wheat" but probably made with barley or some other gluten containing grain.

This diet that worked for me was one of the most strict diets possible. I was eating nothing but beef, bananas, vegetables, and limited fruit. I definitely responded to it though... until I ended up getting glutened, again. My systemic symptoms died down quite a bit but returned with a vengeance the moment I was glutened again.

Now here's what I'm asking. If someone is responsive to prednisone, can it be used to heal the intestinal walls and then can they wean off of it to see if they tolerate the other proteins or have a lower sensitivity? If someone is RCD TYPE 1, do they have to stay on the prednisone forever or are they able to wean after they heal provided they maintain a very strict diet?

I'm asking these questions on a forum and not to my doctor because there isn't a single Celiac specialist within 400 miles of where I live. I'm going to have to travel and I need to feel well to do that, so I'm back on prednisone as of today. My plan is to have my biopsy done next week and to continue taking the prednisone, continue my elimination diet (without getting glutened, restore functionality to my life, and heal up and then wean off of it and continue my very strict diet to the best of my ability, eventually adding foods back in very slowly. There's just no way that I can travel 700 miles to a Celiac center feeling horrible. Basically I'm trying to live with two AI diseases, hoping that once I take care of my intestinal lining that the other will respond - everything that I've seen so far indicates that it will.

I have had quite a lot of relief on the diet alone but I haven't had a chance to see if it reaches complete relief because the enteropathy takes several months to heal.

Keep in mind that my current doctors know very little about Celiac disease and know even less about refractory sprue. This is a consequence of living in the deep south which isn't know for its stellar medical care. My rheumatologist does not know how to treat this disease and basically just prescribed prednisone for my systemic AI symptoms, which it has worked very well on, but doesn't know anything about celiac disease. He thinks that I have Sjogren's and that it's causing the gluten sensitivity and I think he's wrong. I have dermatitis herpetiformis clearly visible on my back but it's not something he's familiar with. The fact that my rash has been present with me throughout this entire ordeal has shown me that I'm very sensitive and I'm still making far too many mistakes.

Please understand that I've made a few posts like this in the past because I don't have a knowledgable doctor to turn to. Medical doctors have failed me, the ones in this area are beyond horrible and I literally have to be armed with all the information that I can.

I know what it's like to feel good (it's fantastic) and I know what it's like to feel very, very ill and I wouldn't wish this on my worst enemies. Continuing to live sick is just not an option anymore so I'm doing everything possible to get my s$#& together.

Even attempting to answer the questions based on your past observations would be nice, even better if you guys know someone diagnosed with RCD, or even ask your doctor for me. Like I said, getting into a good physician is my TOP priority but they're overbooked so it will take some time. In the meantime, I'm relying on prednisone and one of the most strict diets that I've ever maintained and hopefully I get a lasting benefit.

This post is a byproduct of the prednisone, it lifted my brain fog almost immediately. Feel about 50x better and like my IQ jumped up about 50 points. Gluten ataxia is almost like temporary brain damage, it's HORRIBLE! How do you explain yourself to someone when you can't even think coherently?

I'd also like to add that I'm not an attention whore, these posts are because I don't have anyone to turn to and I feel alone. I do not like discussing my personal life on a forum, but being that my goal is to be healthy and to lead a fulfilling life I think it's productive that I do this.

Thanks to anyone who took the time to read this and especially those that respond. I also want to give a shout out to the guys and girls at the "other" super sensitive forums for helping me create a diet that I actually responded to, and for weeding out several sources of exposure. I can't thank you enough, you know who you are.

[GlutenFreeManna]

Sorry, I just answered your other thread and asked about sjogren's. Ignore my question there. Based on what you are saying about drs in your area, I think you may do better to find a speciailist to treat your sjogren's more effectively (I don't know what that entails but you may find new treaments if you find a better dr). Unfortunately, not all auto-immune diseases respond to a gluten-free diet.

[dilettantesteph]

This diet that worked for me was one of the most strict diets possible. I was eating nothing but beef, bananas, vegetables, and limited fruit.

It looks like you know what you have to do. There are several of us who are on this diet. You aren't alone.

[Jestgar]

I'm with steph. You have to stop getting glutened and find the food that works for you. Steroids are a bad thing and not something you should be trying to find just so you can eat processed food.

[missy'smom]

I would look carefully at the steroids and how long you will be on them and side effects. I have a parent who has nearly gone blind in one eye and has the same macular degeneration in the other. He's been on steriods long term for COPD. If his doc had been more careful and intervened sooner he would have been better off but still had problems, however for him there is no choice to get off the steroids. He needs them to live. It has also caused him to be diabetic. If you do use them for a while do monitor your blood sugar and watch for signs-excess thirst, urination, fatigue, hunger etc. I know some people with anaphylaxis who need to use them after reaction. One person takes some insulin until she gets off them. She's not diabetic but her doc prescribed it because the prednisone raises her BG so much. You don't want to burn out your pancreas down the road with extended high blood sugar. Plus high blood sugar is damaging to all body tissues.

I feel for you and your challenges. I am due for an endoscopy and colonoscopy after 5 yrs gluten-free to rule out refractory sprue etc. I recently started myself on a 4 day rotation diet to gain some ground with my long list of food allergies. I was feeling better with a different management strategy for a good while but am back to square 1 again and been feeling crappy. I keep gaining allergies to foods I eat frequently, not excessively, just what would be normal frequency for most people Between that and diabetes, it is just too much work everyday. I am so tired of GI symptoms and burning sensations in my mouth from allergic reactions. You are not alone.

[weluvgators]

Hi! Steph and Jestgar have really great observations. I particularly enjoyed reading Jestgar's posts in the breakfast thread IIRC - there are some fantastic suggestions there! You need to eat, you need to eat well, and you have to do the work to find safe FOOD.

I am a super sensitive mother of three super sensitive kids. One of my children was hospitalized two times at the age of six because I simply did not understand the severity of repeated low level gluten exposures for super gluten sensitive people. It sucks. My medical team was at a loss, and tending to a repeatedly hospitalized child is completely disruptive to the entire family - we were all suffering. Our medical team encouraged us to go to a research center, but that has been incredibly problematic because our celiac issues are compounded by our gluten allergy issues - NO research center that I have found recognizes the TWO in CONJUNCTION - IT SUCKS. They are either an allergy center that is confounded by our celiac issues or a celiac center that is confounded by our allergy issues (our allergist agrees and supports the position that there is currently no research center that specializes in our particular issues).

I am also biased because my father was seen at Mayo in the early 90's, and they told him that if he ever figured out what was wrong with him that he should give them a call and let them know - they were clueless - could see his symptoms, but could not identify a way to help him - I would bet a lot of money that they never even tested him for celiac which really just makes me angry. We also have a paternal grandmother that was treated at Duke, and we have considered there. But after hearing the experiences of another gluten super sensitive patient using Duke for medical care . . . what is the point? I have enough doctors looking at my family in wonder; I certainly don't need to pay more doctors to look on in wonder. Yet, I conceeded almost two years ago, that I was simply going to have to continue paying into the healthcare system to at least become part of the clinical evidence of this mess!

So, we decided that we needed second opinions about going to a research center. We contacted the HealthNOW clinic in Sunnyvale, CA (I have contacted many specialty and research centers, and they were the ones that stood out to me in my phone calls - start calling now, ask to speak to a nurse, and interview these centers as much as you can by phone - we did!) So, we finally decided that we had to go there and work with them, and my only regret is that I did not do that when I first contacted them with our complications! I still struggle with some of their nutritional advice, as it does not appreciate the super sensitive phenomena (I still think that they gain results from "cross reactivity" information that is more likely explained by "super sensitive" issues . . . but they have far more clinical experience with celiac and gluten intolerant patients than anyone else that we have found accessible). And they have been able to better assess and strategize our healthcare plan than any of our other doctors. I have certainly had my struggles with them, but they have been our most productive healthcare providers to date. Our conventional doctors have readily incorporated their information and suggestions into our treatment plans, and they also defer to them when needed. We did have to make the trip out there, but it was an enjoyable experience for us - I love going to California, and my kids thought it was great fun too!

Hang in there! Many of us here understand how difficult this struggle can be.

[weluvgators]

I would like to add that my father was treated with steroids many years ago. His doctors believe that he was absorbing the steroids in ways that he "should not" have been (impaired epithelial function comes to my mind). He is now unable to take any steroids or antihistamines. Please don't overlook the complications that can result from steroid use.

[CNV2855]

I'm with steph. You have to stop getting glutened and find the food that works for you. Steroids are a bad thing and not something you should be trying to find just so you can eat processed food.

I'm sorry you got this impression of me. I do not want to eat processed foods again and I've accepted the fact that I won't ever be able to. My plan is to use the steroids for a limited time (2 months) to give my body respite and also give me a "head start" with healing. Even on my good diet, I'd imagine that it would take a good bit of time to normalize. I plan to continue my strict diet regardless of which medications I'm on.

I say this because I found this quote on Mayo:

Medications to control intestinal inflammation

In cases of severe inflammation in the small intestine, your doctor may recommend medications called steroids to control inflammation. Steroids may be used to give you relief from severe signs and symptoms until the effects of a gluten-free diet begin to become apparent

Do you think I'll run into the long term problems as long as I keep the course under two months?

BTW, thank you for the responses everyone. Gators, I agree that California is the bomb. Went to Vegas in May of last year and it was 118 degrees outside. Drove 3 hours to San Diego, at 1pm on an incrediibly sunny day, seriously no clouds, it was 70 degrees. It felt like air conditioning, was pretty incredible - especially for an almost 50 degree temperature change in less than 200 miles. Every store had their doors completely open, something I'm not used to.

Down in Louisiana, spending a lot of time outside is a chore. Not only does it get hot but you have the humidity from the ocean and the marshland and it feels like a sauna.

[pricklypear1971]

I just want to chime in on the steroids....

My experience wasn't good, and I think I'm still dealing with the consequences (and may always).

My dermatologist gave me two Kenalog shots plus prednisone in an effort to get rid of the ever-spreading DH. Every shot and every pill put my adrenals deeper in the hole, and probably my liver.

I had a lot of serious side effects, which made him pull me off the prednisone in less than a week. I had a horrible withdrawal, my blood sugar was out of control, and my adrenals were in overdrive.

Seven months later my adrenals are still off, and evidently gluten sends me into some sort of hypoglycemic state. I did

NOT have these blood sugar problems before the steroids. I also picked up another antibiotic allergy after the steroids, which isn't promising for my future treaent options.

We all know Celiac makes your whole body a bit

oversensitive, and steroids are powerful drugs. My bloodwork clearly shows impaired liver function - and my

ND asked about steroid use just from those results.

So, while I don't disagree they may help your symptoms, you do need to beware of the risks. Risks your doctor probably WON'T tell you about. Also, when you are on prednisone you must wean off, you can't go cold turkey.

And with Celiac, I am going to assume you'll need a longer weaning period. I see from your post above you did wean off. I understand you took a supplament containing gluten, but does the date of the supplement coincide with the Celiac attack and the cessation of the prednisone? Could coming off prednisone have contributed to the bad gluten flare? It's something to think about. Prednisone is notorious for being a wonder drug, but after you're off symptoms come back worse than ever (and I'm not just talking about Celiac).

[Jestgar]

I'm sorry you got this impression of me. I do not want to eat processed foods again and I've accepted the fact that I won't ever be able to. My plan is to use the steroids for a limited time (2 months) to give my body respite and also give me a "head start" with healing. Even on my good diet, I'd imagine that it would take a good bit of time to normalize. I plan to continue my strict diet regardless of which medications I'm on.

If you keep eating gluten, even accidentally, no amount of steroids will help you heal.

[T.H.]

Sadly, not knowledgeable about steroids or some of the other issues, but I wanted to just touch in the 'getting glutened again' aspect. I REALLY feel for you there, and honestly, it's unbelievably hard when you are really sensitive. Seriously, constant vigilance (god, that sounds like a bad action movie, LOL) is really the only way to stay safe, especially when you go out. In a shared house, there are dozens of times in just one meal that you have to be paying attention or you can get yourself glutened.

I'm being reminded of this as I traveled to stay with family in another state, and I've been glutened already and it's only been 2 days. :-( Mild, but still glutened.

So, just an example? Places that I've seen people touch immediately after they touched gluten. The back of the chair - to pull it out before you sit down to eat. The bottom of the chair as you scoot it in (and how often is THAT washed?). The microwave buttons, the fridge door handle, the buttons on a water dispenser on the fridge, the faucet handle, any drawer and cabinet handles, the plates and cups on the table, the silverware on the table, the napkins on the table, the salt and pepper shakers, condiment bottles (even if they are just handing yours to you), and juice or other drinks (on the handle), the table top, the counter top, the dish washer buttons, and so on and so forth.

I mention this because, for most celiacs - it doesn't matter much. Every once in a while, there might be enough gluten in the right place to get them, like someone passing the bread around and then grabbing their cup by the top, that sort of thing. But for super-sensitives? It can be a nightmare. I touch the back of the chair, which just got slightly contaminated, and then I grab my silverware and spread it around, and that's enough. I'm toast.

Now, admittedly, every single one of the above-mentioned things is not going to gluten us every time, obviously. The world is not coated with gluten (although sometimes it sure feels like it!). But some of these places can get us, and some of them likely will. And for people like you, and me, and many here, our reactions are SO nasty that we don't want to take that chance. We're not risking a couple days of gut trouble, we're risking weeks of debility, yeah?

If we don't want to have that happen, there's really nothing we can do to avoid gluten cc except avoid touching anything we put in our mouth with anything that hasn't been washed immediately prior, unless we're in a completely gluten free environment. Which sucks. I honestly hope that someday, scientists will develop a light that you can shine around the house and gluten will glow red in it or something. Save us a heck of a lot of work!

[dressagegal1986]

Hello I was reading your story and everyones input. Im 24 and have only been diagnosed and gluten free for 3 months but have hardly and relief I spend alot of time in the nospital because I got glutened and it cause colitis and internal bleeding. I swear I look at gluten and get a flare up. I have llost 30 pounds the only food I tolerate is banana watermelon chicken soup white rice and peas greenbeans. That's on good days. They also removed my gallbladder thinkin that was it before they found celiacs. The hospital lost my first biopsy. I have had pill cams smart pill tests colonoscopy two endoscope more blood blood and more blood tests its never ending and I feel sick all the time. Its frustrating and is more then I can handle most the time but hang in there your not going through this alone and it helps to know someone understands. My doctors are here in cali and still know nothing. I am waitlisted for a specialist its hard

[Di2011]

its hard

It sure is hard isn't it. I've gone from being overweight to being scared of how much weight I've lost in the past week or two. My DH is still an every minute of every day nightmare. Mentally I think we (supersensitives) have a tough challenge from day to day. Nowdays I won't even go onto gluten-free recipe websites or the threads on this forum that are about food/recipes because it makes me either cranky or upset. Some days I find it hard to convince myself to eat or go anywhere.. but I know that the DH will continue its crazy path until its all done and that some foods will put a mighty big roadblock if I don't stick to what I'm doing.

Dressagegal1986 you will get better. I have a good feeling about that. Keep yourself safe and keep your diet simple. When you need to rant or need advice make sure you get on here and we'll listen and try to help.

[dilettantesteph]

I used to cry in the grocery store looking at all the food I couldn't have. It gets better. Now I really enjoy many foods I didn't eat before diagnosis. I hope that you all improve more fast.

[T.H.]

Was reminded of a research abstract that might be of some use for you. It was looking at nonresponsive celiac disease vs. RCD. While they concluded that most of the participants with NCD were suffering from gluten cc, the researchers had a few patients who were having trouble due to other conditions. Since you seem to be looking for what else might be in the mix, as it were, I thought you might find it of interest to see what these folks also had that was messing around with their bodies, you know?

In their results section:

"Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue." (Open Original Shared Link )

I also know a few people with Crohn's disease who responded very well to steroids. Was that ever looked at in your case?

[jumpingjuniper]

I'm sorry that you are suffering.

Have you gone through your diet with a fine-toothed comb? When you say a gluten exposure causes symptoms - how often is that happening? There is a the possibility that those are frequent enough to make you ill in the longer term as well. And what are your parameters for eating gluten free - does it need to say gluten free, do you need to have spoken to customer service to find out what they mean by gluten free, etc? Something that says "wheat free" is definitely not a sure-bet for a gluten free diet, and I wonder how many other items are slipping into your diet. If you're very sensitive, that could have a substantial impact over time and keep you from healing.