Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Gluten Free For 6 Years, Symptoms Back
0

7 posts in this topic

I am hoping that some of you can help me figure out what's going on. I was diagnosed with Celiac Disease 6 years ago ( I am now 20 years old). Back then my symptoms were mainly gastrointestinal, such as bloating, gas, diarrehea, and very bad stomach cramps. I felt extremely sick and got to the point that I was afraid to eat anything. I lost almost 15 pounds within 6 months. After finding out I had celiac, all of these symptoms went away and I regained most of the weight I lost. I felt a lot better. 
 
For the past year, however, I have been experiencing incredible fatigue and joint pain. The pain started in my hands but recently it has spread to nearly every joint in my body and the fatigue has worsened. I went to a rheumatologist who did some test- all of which were negative. She had a strong feeling it was connected to celiac disease. I went back to the GI and he did another endoscopy. Since I get so sick from eating gluten he decided it was best if I remain gluten-free and he would see if a.) I am doing a good job on the diet and/or b.) if I have refractory celiac. I had the endoscopy done last week and I am anxiously awaiting for the results. I am very strict with my diet and do no cheating. Does refractory celiac disease sound like a real possibility? 
 
I was just wondering if anyone else has experienced these symptoms and if they have figured out what it is? I am becoming so frustrated because none of the doctors seem to know why I feel this awful.  Could this be related to Celiac? I would appreciate any feedback! 

 

Thanks!! 

0

Share this post


Link to post
Share on other sites


Ads by Google:

A stab in the dark: you may have developed an intolerance to nightshades (potatoes, tomatoes, peppers and eggplant). I say this because most folks here who are intolerant to them present with joint pain.

0

Share this post


Link to post
Share on other sites

Or, you have become more sensitive to gluten...you are now out of that teenage honeymoon period when it tends to go dormant.

You may have to readjust your food to stricter guidelines (some people must drop processed foods or foods that aren't tested, etc.).

You also may have gotten a bad glutening and are taking a long time to heal.

Some people develop other intolerances, like nightshades as bartfull said.

You may have another AI disease brewing, and it hasn't shown up on tests. Several AI diseases are connected with joint pain. Of course, a Rheumy would look for arthritis, lupus, etc. but did she check thyroid?

I think it's good you are getting scoped, it may help answer some questions. Did your doc rerun celiac blood tests to see if antibodies are elevated?

I'd get copies of all labs and go down the list for AI diseases and ensure you were checked for all of them.

0

Share this post


Link to post
Share on other sites

Prickleypear and Bartfull said everything I was going to add. :)

 

I would wait on your test and see what it says, then look into other food intolerances and thyroid testing.

 

When you do get your lab results, request hard copies so you can do some of your own research on those results. I did not do that back in my early 20's when I started getting fatigue and arthritic like joint pain. My doctor ran a few tests and told me all was normal but I might get arthritis one day; when I went back through my records 15 years later, I found my TSH (thryroid stimulating hormone) was slightly elevated at a 6 something (now considered quite high) and I had a positive ANA that she didn't feel the need to mention. Hypothyroidism can cause pain and I could have been treated (and felt good) during my youth rather than my middle age... Get all lab results, and try to get the results they have previously run on you because it could give you a better idea of what is up.

 

Best wishes. i hope you feel better soon.

0

Share this post


Link to post
Share on other sites

What they all said!  Especially get your thyroid checked as joint pain and fatigue are huge with thyroid disease.  I am surprised (not that I should be) that any doctor would jump to the conclusion that you might have refractory sprue because of joint pain.  Unless you are losing a lot of weight and are not absorbing again, refractory would be the last thing I would think.  Return of some symptoms is so common and usually means other AI diseases brewing or another intolerance has cropped up.  Don't panic...you'll get this figured out. We're here to help!

0

Share this post


Link to post
Share on other sites




Ask yourself "what is different?" about this year vs. last year, re: everything that is going into your mouth, including otc and Rx medications.  Strongest possibilities are cross contamination, additional food reactions such as to oats, soy, and thyroid issues, or a combination of all three. 

 

Don't despair, it's possible to figure this out. 

1

Share this post


Link to post
Share on other sites

Thanks so much for all of your input! The results came back from my endoscopy and everything looks like it has healed. We have concluded that it is not celiac related and I am going to get tested for other food intolerances. I've had my thyroid checked twice within the last year thinking I had hypothyroidism but it looked fine. If nothing comes up with food intolerances, I'll go back to the rheumatologist! 


Thanks again!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,697
    • Total Posts
      921,781
  • Topics

  • Posts

    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,702
    • Most Online
      3,093

    Newest Member
    Gigi Fagon
    Joined