Could this be Celiac? Symptoms return after 5 years at steady-state. Freaking out that I have refractory sprue. Need some insight.

[jd6735]

Summary:History of gluten intolerance, symptoms have returned despite no change in diet after 5 years of the same gluten sensitivity, I now seemingly react to the smallest cross-contamination and am not getting symptom relief. Do I need to worry about refractory sprue? I posted this on the celiac sub-reddit about two weeks ago but now I thought I could get more input here. 

A little background. When I was 14 years old, I started having strange joint pains in my wrists, persistent neuropathies and tingling in my hands, and other strange symptoms. Pains were seemingly inflammation of the tendons, made worse by exercise, and the inflammation responded well to NSAIDs. Went to a ton of doctors, tested for RA, MS, and anything else under the sun, but everything came back negative. "We don't know." My digestive health wasn't too bad or too good: I got constipated and got diarrhea from time to time, but not too often. I didn't really experience severe abdominal pains on a consistent basis so I didn't think anything of my digestive symptoms. As a result, no one checked anything digestive. The inflammation went away with NSAIDS. The only lasting effect after was that I absolutely couldn't exercise without developing terrible tendonitis and Joint pain within a few days, which caused a lot of depression. 

The disease remained stable in nature for a while until when I turned 21 or so. The chronic tendinitis spread to my ankles in addition to my wrists. The inflammation began to happen without any exercise, just from me existing. I also began having some more severe digestive problems, loose stools, poorly-formed stools, stomach pains, and felt like I was in a fog all the time. 

I tested negative for everything rheumatological. During a late-night research session, I googled a bunch of my symptoms and found out that a lot of people with gluten intolerance experience these same symptoms. I immediately went gluten-free. Over the course of the next two weeks, my digestive health was completely restored, and my joint pains were decreased by about 80% after about 1-2 months. I had an enormous amount of energy. I felt like a new person. I went to the doctor and got tested for Celiac, but the antibody test came up negative. I was already on a gluten-free diet, so I know that probably meant little. 

I know that my symptoms are not reflective of traditional Celiac and I apologize for self-diagnosing (no positive test). All I know is that going gluten-free absolutely changed my life and restored my health.

Over the past five years, I've had absolutely no baseline changes in my gluten sensitivity. I cook most of my food, and eat at places like Chipotle and occasionally eat at restaurants and make sure not to order anything with wheat, rye, or barley. I get "gluten-fee" pizza at pizza places knowing that it's cooked in the same ovens with bread and do fine. I avoid beer and am careful with my alcohol selection, but basically, I was always able to tolerate cross-contamination. On the one occasion when I did eat bread, I had diarrhea for a week or two and then was back to normal. I was still tremendously prone to repetitive strain injuries and inflammation, but not to the same degree I had been before and ONLY after exercise. I was living my life. 

... Fast forward to about 2-3 months ago. I have been going through a very stressful period in my life, and I think the stress triggered something. Simultaneously, I have a "glutening:" for a period of a couple of weeks, on 3 or 4 occasions, I eat sushi with imitation crab meat and rice binder that has wheat in it. I start having the pains in my ankles again. X-rays have shown that my ankles are swollen, and I haven't done anything but stayed on my feet and walked. Start developing tendonitis in my wrists again. The loose stools and indigestion are back and I feel like my brain is in a fog. 

I only get a little bit of symptom improvement if I eat the food I cook for myself. . I now respond to foods I wasn't responding to before.  Eating at the same cafeteria I was eating at 5 months ago without a problem now causes a reaction. I have seemingly become very sensitive to ANY cross-contamination whereas just half-a year ago I could tolerate it without a problem. This is after five years of absolutely no change in my baseline reactivity. What the hell is going on? I've HAD glutenings before years back, and they never caused my symptoms to return and persist as they have now! And they NEVER changed my baseline sensitivity to gluten. All of my rheumatological tests have come up negative.

I finally spoke to gastroenterolist yesterday and he agreed that this could be Celiac's disease, but had no answer for me on whether my baseline sensitivity would improve. I'm not willing to gluten myself for 6 weeks to get a positive blood test. The symptoms are too much to bare and I am trying to finish graduate school. My question is... if I do have Celiac... Has it suddenly gotten worse? Is it normal to have a sudden worsening of this condition, after 5 years at steady-state? I feel like I'm losing my mind, and have no idea what to do. I'm in constant pain and it's miserable. Whatever this is, it has taken such a huge toll on my life now. 

[Ennis-TX]

40 minutes ago, jd6735 said:

Summary:History of gluten intolerance, symptoms have returned despite no change in diet after 5 years of the same gluten sensitivity, I now seemingly react to the smallest cross-contamination and am not getting symptom relief. Do I need to worry about refractory sprue? I posted this on the celiac sub-reddit about two weeks ago but now I thought I could get more input here. 

A little background. When I was 14 years old, I started having strange joint pains in my wrists, persistent neuropathies and tingling in my hands, and other strange symptoms. Pains were seemingly inflammation of the tendons, made worse by exercise, and the inflammation responded well to NSAIDs. Went to a ton of doctors, tested for RA, MS, and anything else under the sun, but everything came back negative. "We don't know." My digestive health wasn't too bad or too good: I got constipated and got diarrhea from time to time, but not too often. I didn't really experience severe abdominal pains on a consistent basis so I didn't think anything of my digestive symptoms. As a result, no one checked anything digestive. The inflammation went away with NSAIDS. The only lasting effect after was that I absolutely couldn't exercise without developing terrible tendonitis and Joint pain within a few days, which caused a lot of depression. 

The disease remained stable in nature for a while until when I turned 21 or so. The chronic tendinitis spread to my ankles in addition to my wrists. The inflammation began to happen without any exercise, just from me existing. I also began having some more severe digestive problems, loose stools, poorly-formed stools, stomach pains, and felt like I was in a fog all the time. 

I tested negative for everything rheumatological. During a late-night research session, I googled a bunch of my symptoms and found out that a lot of people with gluten intolerance experience these same symptoms. I immediately went gluten-free. Over the course of the next two weeks, my digestive health was completely restored, and my joint pains were decreased by about 80% after about 1-2 months. I had an enormous amount of energy. I felt like a new person. I went to the doctor and got tested for Celiac, but the antibody test came up negative. I was already on a gluten-free diet, so I know that probably meant little. 

I know that my symptoms are not reflective of traditional Celiac and I apologize for self-diagnosing (no positive test). All I know is that going gluten-free absolutely changed my life and restored my health.

Over the past five years, I've had absolutely no baseline changes in my gluten sensitivity. I cook most of my food, and eat at places like Chipotle and occasionally eat at restaurants and make sure not to order anything with wheat, rye, or barley. I get "gluten-fee" pizza at pizza places knowing that it's cooked in the same ovens with bread and do fine. I avoid beer and am careful with my alcohol selection, but basically, I was always able to tolerate cross-contamination. On the one occasion when I did eat bread, I had diarrhea for a week or two and then was back to normal. I was still tremendously prone to repetitive strain injuries and inflammation, but not to the same degree I had been before and ONLY after exercise. I was living my life. 

... Fast forward to about 2-3 months ago. I have been going through a very stressful period in my life, and I think the stress triggered something. Simultaneously, I have a "glutening:" for a period of a couple of weeks, on 3 or 4 occasions, I eat sushi with imitation crab meat and rice binder that has wheat in it. I start having the pains in my ankles again. X-rays have shown that my ankles are swollen, and I haven't done anything but stayed on my feet and walked. Start developing tendonitis in my wrists again. The loose stools and indigestion are back and I feel like my brain is in a fog. 

I only get a little bit of symptom improvement if I eat the food I cook for myself. . I now respond to foods I wasn't responding to before.  Eating at the same cafeteria I was eating at 5 months ago without a problem now causes a reaction. I have seemingly become very sensitive to ANY cross-contamination whereas just half-a year ago I could tolerate it without a problem. This is after five years of absolutely no change in my baseline reactivity. What the hell is going on? I've HAD glutenings before years back, and they never caused my symptoms to return and persist as they have now! And they NEVER changed my baseline sensitivity to gluten. All of my rheumatological tests have come up negative.

I finally spoke to gastroenterolist yesterday and he agreed that this could be Celiac's disease, but had no answer for me on whether my baseline sensitivity would improve. I'm not willing to gluten myself for 6 weeks to get a positive blood test. The symptoms are too much to bare and I am trying to finish graduate school. My question is... if I do have Celiac... Has it suddenly gotten worse? Is it normal to have a sudden worsening of this condition, after 5 years at steady-state? I feel like I'm losing my mind, and have no idea what to do. I'm in constant pain and it's miserable. Whatever this is, it has taken such a huge toll on my life now. 

Well with celiac, a glutening or shock to the immune system can change your base symptoms, and sensitivities, you can even develop a new food intolerance or sensitivities ESPECIALLY after a exposure. This is quite common and the disease seems to change like a chameleon over the years. I used to never have D issues always C. After a exposure a few months back...D and it lasted months til my antibodies went back down (I was eating CCed hemp that was labelled gluten-free for a few weeks). I also have some odd food intolerance crop up...amusingly often a new intolerance can be traced back to another food you were eating when you got glutened....you body just makes some assumption it seems and says "NOPE" for while then often you can eat it weeks or months later with now issues.....I had this happen with iceberg, and green leaf lettuce before. I am still intolerant to some foods like term like peanuts, soy, but others went away from my initial dia like I used to have issues with pea protein, and olives but months-years later they resolved.

Try keeping a food diary, only eat in your house with a hold foods only diet for a month or so. Record symptoms from foods and keept hte diet simple and ROTATE you foods, eating certain ones and removing others for days at a time recording everything. You will find what work for now and what you need to remove.

BTW, from what you said I do not doubt you have this disease, I might go on to say you need to be more careful. You can develop permanent other issues and complications if your not very strict....I got corn allergies, Ulcerative Colitis, and a few others things that are life issues now from not getting diagnosed earlier. Stay true to the diet just like you got your offical DIA...medically stick to it, no more "fad gluten free" pizza joints ok. Just get stuff that is store bought or from a dedicated place.I think I have some links on the food sensitives. BTW if you need help finding anything gluten free I have quite the list and as a chef pride myself on tracking down foods and ingredients.
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[cyclinglady]

I am sorry you are suffering.  My best guess (and I am not a doctor) is that you probably have celiac disease.  The one thing I have learned is that symptoms can wax and wane.  For example, when I was diagnosed, I only suffered from anemia and had no noticeable GI symptoms (which made my diagnosis so shocking).  After a few gluten exposures, my symptoms changed dramatically.  In fact, I added some additional autoimmune disorders along the way.  

I would advise you to go strictly gluten free.  I can tell you that I never eat out unless it is a 100% dedicated gluten-free facility.  Crazy, but feeling better is worth it.  To get you geared up fast, consider the Fasano diet.  It was developed for non-responsive celiacs that doctors thought they might be refractory, but most healed on the diet and later were able to resume a normal gluten-free diet.  

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[jd6735]

22 hours ago, Ennis_TX said:

Well with celiac, a glutening or shock to the immune system can change your base symptoms, and sensitivities, you can even develop a new food intolerance or sensitivities ESPECIALLY after a exposure. This is quite common and the disease seems to change like a chameleon over the years. I used to never have D issues always C. After a exposure a few months back...D and it lasted months til my antibodies went back down (I was eating CCed hemp that was labelled gluten-free for a few weeks). I also have some odd food intolerance crop up...amusingly often a new intolerance can be traced back to another food you were eating when you got glutened....you body just makes some assumption it seems and says "NOPE" for while then often you can eat it weeks or months later with now issues.....I had this happen with iceberg, and green leaf lettuce before. I am still intolerant to some foods like term like peanuts, soy, but others went away from my initial dia like I used to have issues with pea protein, and olives but months-years later they resolved.

Try keeping a food diary, only eat in your house with a hold foods only diet for a month or so. Record symptoms from foods and keept hte diet simple and ROTATE you foods, eating certain ones and removing others for days at a time recording everything. You will find what work for now and what you need to remove.

BTW, from what you said I do not doubt you have this disease, I might go on to say you need to be more careful. You can develop permanent other issues and complications if your not very strict....I got corn allergies, Ulcerative Colitis, and a few others things that are life issues now from not getting diagnosed earlier. Stay true to the diet just like you got your offical DIA...medically stick to it, no more "fad gluten free" pizza joints ok. Just get stuff that is store bought or from a dedicated place.I think I have some links on the food sensitives. BTW if you need help finding anything gluten free I have quite the list and as a chef pride myself on tracking down foods and ingredients.
Open Original Shared Link

 

22 hours ago, cyclinglady said:

I am sorry you are suffering.  My best guess (and I am not a doctor) is that you probably have celiac disease.  The one thing I have learned is that symptoms can wax and wane.  For example, when I was diagnosed, I only suffered from anemia and had no noticeable GI symptoms (which made my diagnosis so shocking).  After a few gluten exposures, my symptoms changed dramatically.  In fact, I added some additional autoimmune disorders along the way.  

I would advise you to go strictly gluten free.  I can tell you that I never eat out unless it is a 100% dedicated gluten-free facility.  Crazy, but feeling better is worth it.  To get you geared up fast, consider the Fasano diet.  It was developed for non-responsive celiacs that doctors thought they might be refractory, but most healed on the diet and later were able to resume a normal gluten-free diet.  

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Thank you both. I sincerely appreciate the feedback and sympathy. Like so many of us, I just wish my doctors had found and diagnosed this disease years ago (in my case, 14 years ago) if it really is Celiac. Life would have been so much easier. I would have been much more stringent on my diet and would have probably avoided all these terrible complications.

I'll keep a food diary and take a look at the Fasano diet. I'll take my time and hope for the best. I honestly just want the pains to go away this point.

If anyone else has any additional feedback, I would certainly appreciate it.

[jd6735]

I've just had a bone density scan and... Turns out I have Osteopenia throughout my body. In fact, I'm -2.0 in my spine, closer to Osteoporosis than normal bone health (Osteoporosis is -2.5, normal bone is -1.0).

Is any of this reversible to any degree? I've never taken any supplements but I've been MOSTLY gluten-free for five years. This is so terrifying.

[cyclinglady]

42 minutes ago, jd6735 said:

I've just had a bone density scan and... Turns out I have Osteopenia throughout my body. In fact, I'm -2.0 in my spine, closer to Osteoporosis than normal bone health (Osteoporosis is -2.5, normal bone is -1.0).

Is any of this reversible to any degree? I've never taken any supplements but I've been MOSTLY gluten-free for five years. This is so terrifying.

Whoa!  Take a deep breath!  You are going to be okay!  

I think you have realized that being mostly gluten free is not cutting it!  I have celiac disease and I have had vertebrae fractures doing nothing!  My repeat bone scan shows that I am not getting worse which is about all that I can expect for a post menopausal woman.  I do eat well, I exercise and I avoid taking chances when I eat away from home.    How old are you?  

Consider improving your gluten-free diet now.  If you are young, you still have the chance to build up your bones.  

[GFinDC]

Hi jd6735,

You really need to take the gluten-free diet seriously if you have celiac disease.  The immune response ramps up more and more with continued exposure to gluten.  It's not like food poisoning where the symptoms go away in a few days.  The immune system intends to protect you forever and is always ready to start attacking invaders.  That's why you can get an immunization mumps as a child and are protected for life.  The immune response can last for weeks to months after a glutening.  A little bit of gluten is too much gluten.

For bone health try taking calcium and vitamin K2, plus vitamin D.  They are all important for your body to build bone.  Another thing that may help with joint pain is avoiding most nightshade vegetables.  Nightshades are potatoes, tomatoes, eggplant, peppers and they contain alkaloids that can cause joint pain.

[jd6735]

On 5/1/2018 at 12:32 AM, cyclinglady said:

Whoa!  Take a deep breath!  You are going to be okay!  

I think you have realized that being mostly gluten free is not cutting it!  I have celiac disease and I have had vertebrae fractures doing nothing!  My repeat bone scan shows that I am not getting worse which is about all that I can expect for a post menopausal woman.  I do eat well, I exercise and I avoid taking chances when I eat away from home.    How old are you?  

Consider improving your gluten-free diet now.  If you are young, you still have the chance to build up your bones.  

Thank you for the response. I'm a 27-year-old male. I'm being much more careful now and really only eating at home. The thing that worried me the most is that I've been on a gluten-free diet for years now. Of course, it's not been perfect. There may have been some cross-contamination and "re-glutenings" from time-to-time. In addition, I've never supplemented my Vitamin D or Calcium. I'm doing both now. I'll see how things go from here. Thank you for the perspective.

 

On 5/1/2018 at 8:02 AM, GFinDC said:

Hi jd6735,

You really need to take the gluten-free diet seriously if you have celiac disease.  The immune response ramps up more and more with continued exposure to gluten.  It's not like food poisoning where the symptoms go away in a few days.  The immune system intends to protect you forever and is always ready to start attacking invaders.  That's why you can get an immunization mumps as a child and are protected for life.  The immune response can last for weeks to months after a glutening.  A little bit of gluten is too much gluten.

For bone health try taking calcium and vitamin K2, plus vitamin D.  They are all important for your body to build bone.  Another thing that may help with joint pain is avoiding most nightshade vegetables.  Nightshades are potatoes, tomatoes, eggplant, peppers and they contain alkaloids that can cause joint pain.

Understood, thank you. I hope that the vitamin supplementation will help me. I have a follow-up with my gastroenterologist today and I'll see what he tells me.

 

[jd6735]

My genetic testing results are in... and I'm negative for Celiac's. And I was finally sure I was going to get some answers... I would have been so happy just to get that positive result and have an answer.

Meanwhile, my symptoms have gone into remission after being on a strict gluten-free diet...

Gastro wants to scope me for Crohn's. Ughhh. Back to square one... Again.

Thank you again for the replies and advice.