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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Gluten Challenge (Sjogren's + Celiac)
0

5 posts in this topic

So, it guess it's a long story, but I'll try to keep it short. I've been gluten free following 7 years of strictly following the diet. It seems that about 8 years ago when I had my daughter, I developed several health issues. Looking back it's hard to tell what caused what, etc, but at one point I developed mastitis and I was put on an antibiotic which caused me to develop C-Diff.

 

After awhile, I had lots of symptoms: purpura (vit K def), positive ANA, Sjogren's antibodies. This could have all been in the works before the infections. My primary doc diagnosed Sjogren's. I felt there was more. Online research led me to believe I was having gluten issues, but not necessarily classic Celiac symptoms. (FYI - my 2nd cousin was diagnosed Celiac by biopsy.) I did Enterolab and the results said I was having issues with gluten and casein. As best I could, I adapted the diet and found that I felt better.

 

I found a new Doctor who went from a traditional practice to a focus on nutrition and functional medicine. He did testing and I found over time (lots of visits, lots of tests) that I was deficient in Vit D, B12, ferratin, ostepenia, B1, B6, B9.  He confirmed my Celiac disease without sending me to the GI doc. I also found a rheumatologist who also confirmed my "Celiac". After all this time, I still don't have these vitamins in check. I'm not vegetarian and eat a lot of meat, particularly red meat and I still can't get the ferratin and B12 up.

 

I've been realizing the last year or two that I still have stomach issues despite following the diet - seems to be no rhyme or reason. And I developed new autoimmune symptoms. No thyroid issues. Decided to go to a new Rheumatologist nearer to where I live. Since I'm  a new patient, she's questioning everything. Wants to be sure I have Sjogren's and Celiac or whatever before she starts treating me. Said one of my new symptoms is probably a magnesium deficiency or the B12. Anyway, she questioned the Celiac due to no biopsy. She sent me to a good one who has experience diagnosing Celiac. He had me start a gluten challenge. I was hesitant and honestly scared b/c I feared how sick I would be, but I guess I'm desperate for answers. He wants to confirm Celiac vs Non Celiac Gluten Sensitivity, plus the possibility of Crohn's disease or microscopic colitis. In the past I've been dry eyes, dry mouth, migraines, stomach issues, flank pain, intersititial cystitis, etc. 

 

 

The thing is....I've been eating gluten and dairy for just under 2 weeks. I have had limited issues. Do I feel 100% awesome?? No, but heck I'm not used to eating this way. I've been enjoying pizza and donuts, etc and what I feel mostly feels like anyone would when they are eating junk. Of course, I don't want to eat this way everyday forever, but I'm really feeling fine. I'm at a total loss. It doesn't seem like I have any issues with gluten and mild issues with dairy, but I think it best to minimize or eliminate altogether anyway. The endoscopy and colonoscopy will be at the end of the month. 

 

Has anyone else experienced this?  I guess I'm wondering if I was misdiagnosed by Enterolab and well meaning doctors didn't question anything. Instead, my symptoms could be totally caused by Sjogren's and as far as not absorbing vitamins, I have been wondering about Pancreatic issues - low enzymes, pancreatic function issues, etc. This can also be caused by Sjogren's. Sj can also cause harm to the digestive system which could explain the whole thing instead of a joint diagnosis of Sj + Celiac. What do I do if he says that I don't have Celiac??? No symptoms and no villous atrophy??? Mind blown. 

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi,

 

I didn't start to feel better until I went on a totally grain free, dairy free and (processed) sugar free healing paleo diet. Just cutting out gluten and dairy did nothing for me, which is what you might be experiencing.

Also, your absorbtion of nutrients is going to be compromised until you heal your gut.

I'd advise considering going 100% paleo, eating lots of anti-inflammatory foods like bone broth, camomile tea, ginger, etc.

Then if you add in various food groups again, do so one at a time and give it a 3 day wait period.

 

This is a good book on the subject: http://www.amazon.com/gp/product/0988717204/ref=pd_lpo_sbs_dp_ss_1?pf_rd_p=1535523722&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=0988717239&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1896KZDQ2VM2FRTWNTET

 

Best of luck to you, hope you find healing soon!

0

Share this post


Link to post
Share on other sites

I was diagnosed with a wheat allergy about 7 years ago ( I had already been diagnosed with other food allergies over the years).  After going wheat free I did feel better but not great.   After a few years I went to a new allergist, he tested me for celiac disease, however, because I was wheat free for so long the test was negative and he said I could just try going gluten free and see how I do.  So I went completely gluten free, I felt better.  I had so many symptoms and no other doctor had an explanation so I assumed he was right on with everything.  Well it's been since 2011 with no gluten and I am starting to question all my choices.  There are times when I have some of those old feelings come back, certain things that are 100% gluten free are bothering me again.  I know that I may have developed more allergies but I don't want to give up more food.  I decided to do a challenge on myself.  I had a small piece of pizza tonight with gluten, and I am nervous, I am going to mark all my symptoms for the next few days and see how I do.  I don't really know why I decided to do this, I guess I am just at a loss and thought I would try to start over with food!  Please keep us posted on how you are doing, I would be very interested!!!

0

Share this post


Link to post
Share on other sites

I was diagnosed with a wheat allergy about 7 years ago ( I had already been diagnosed with other food allergies over the years).  After going wheat free I did feel better but not great.   After a few years I went to a new allergist, he tested me for celiac disease, however, because I was wheat free for so long the test was negative and he said I could just try going gluten free and see how I do.  So I went completely gluten free, I felt better.  I had so many symptoms and no other doctor had an explanation so I assumed he was right on with everything.  Well it's been since 2011 with no gluten and I am starting to question all my choices.  There are times when I have some of those old feelings come back, certain things that are 100% gluten free are bothering me again.  I know that I may have developed more allergies but I don't want to give up more food.  I decided to do a challenge on myself.  I had a small piece of pizza tonight with gluten, and I am nervous, I am going to mark all my symptoms for the next few days and see how I do.  I don't really know why I decided to do this, I guess I am just at a loss and thought I would try to start over with food!  Please keep us posted on how you are doing, I would be very interested!!!

What if you do not get any symptoms from your pizza experiment? When I was diagnosed with celiac disease, my only symptom was anemia. My doctors had blamed my anemia on heavy periods from perimenopause for years and a genetic anemia. What if you react to the cheese, garlic, tomatoes and not to the gluten? How are you going to know?

Perhaps you can do a supervised gluten challenge and get re-tested for celiac disease? There was no way I was going to give up gluten or now, carbs (am now a diabetic), without scientific proof, but I know that is also not only possible for many as they lack medical support.

Good luck!

0

Share this post


Link to post
Share on other sites

What if you do not get any symptoms from your pizza experiment? When I was diagnosed with celiac disease, my only symptom was anemia. My doctors had blamed my anemia on heavy periods from perimenopause for years and a genetic anemia. What if you react to the cheese, garlic, tomatoes and not to the gluten? How are you going to know?

Perhaps you can do a supervised gluten challenge and get re-tested for celiac disease? There was no way I was going to give up gluten or now, carbs (am now a diabetic), without scientific proof, but I know that is also not only possible for many as they lack medical support.

Good luck!

I guess I haven't thought it through, because honestly I am assuming I will react in some way and remember the pain I went through, so I won't want to do it again!  The pizza I ate tonight is the same pizza I would make with my gluten free crust, just on regular crust, so I shouldn't react to any of the other ingredients.  If I have no symptoms I will contact my allergist and ask him about reintroducing wheat and getting retested.  I am concerned though, because I was diagnosed with a positive blood test to wheat allergy.  My allergist did send a test to meridian valley lab (back about 4 years ago) and that came back with very very high gluten, gliadin, wheat, barley and many other allergies.  I am so paranoid right now that I probably won't try to eat it again, I guess I just had a moment of weakness!

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
      103,588
    • Total Posts
      918,276
  • Topics

  • Posts

    • Last posted 2013 - Improving health
      I am glad you are feeling so much better!  Your posting will encourage others.  Thank you!
    • Last posted 2013 - Improving health
      When I first started this journey, roughly 11 yrs ago with symptoms, I had no clue. Eventually, having no luck with doctors (hypochondriac or psychosomatic), I googled my symptoms over and over looking for something... ANYTHING... that would give me a clue. Among other issues, my insides would not move, I was turning gray, felt like death, and had a persistent cough. I can't remember who but someone had posted on the forum and I found some of my symptoms. Eureka, I immediately began a gluten-free diet to see if it made any difference. Of course that was a journey, not realizing what products contained gluten. Long story shorter – first I went gluten-free, symptoms began to reappear, then it was soy (first organic was okay, then not), symptoms reappeared, took out corn, symptoms reappeared, then it was all grains. So the last couple of years I have been grain-free plus no sulphates. Actually, truth be told, my Celiac pharmacist gave me the recipe for health. I asked her if she liked a certain product. She answered, “I don't know, I have never tried it.” I asked her what she did use. She replied, “Nothing out of a box, a bag, or a bottle.” And that has pretty much been my life for the last couple of years. There is the odd product I try but it always has an after effect and I have to way the consequences against the enjoyment of it. I am one of those who react to 1 crumb in the butter, flour dust in the air, sulphates in anything, sometimes things that don't even seem like they would be a problem, like avocados and blueberries when I am contaminated. January 2016 I began this recitation. It is now May 5th, 2016 - Here I am 4 months later and I feel like screaming to anyone who will listen, “Things are improving!! My gut is healing!!” So what happened?? Someone suggested digestive enzymes. My insides were so compromised that I couldn't eat much besides fruit, veggies, and meat; all plain, all without being touched by people other than me. I could barely stand salt at times when I was compromised. Haven't been to a restaurant in years since I am not in a city that would have one to cater or understand this much of a problem. I started digestive enzymes but I read the label wrong and started with 5 first thing in the morning. Whatever... I began to notice improvements in what I could eat. Not anything different but just that I could eat without feeling ill or having my gut shut down. I stayed on those for a month and a half.. then I picked up a parasite from someone living in a very unclean apartment and visiting there and helping to clean. Well, that was a huge battle. I had to eat to discourage parasites. But in the process my insides began to heal dramatically. I was eating blackberries, drinking garlic keefir (which I couldn't have done 5 mths ago and gave me the first clue my insides had improved substantially), drinking oil of oregano or peppermint oil drops in a glasses of water, eating cabbage and green roughage. Drinking water with apple cider vinegar in it and Aloe Vera juice. After a couple of weeks my insides were a whole different story. I had a feeling of wellness that I hadn't had for years! I FELT like trying to eat something different. So I decided to try Gluten-free Rice Chex. Haven't had them in years.... and I am so happy! I can eat them!! (Not to say they are healthy, cause they are processed crap) but I didn't get sick and that was the amazing part. So now I am beginning to try a few things that would have set me back previously, I have made my own crème brulee because I have always been able to eat eggs. But the sugar was causing problems, but now it's okay. The issue I have now is that I want to try things too fast so I am having to exercise restraint. So here is it – parasites are very common, everyone has them however whether they cause problems depends on your immune system. Does it not makes sense that they would cause leaky gut? An over abundance in the gut would destroy gut tissue and take nutrients from a person and possibly put holes in the gut leading to food reactions? Digestive enzymes help to destroy the protective coating around parasites. Foods that discourage them or kill them are blackberries, garlic, cabbage, oil of oregano, peppermint oil, aloe vera juice, Braggs apple cider vinegar and more (google to find). I found medication didn't do anything so I turned to all the other. So this is how it is today. I don't suggest it is the answer to anyone else's problems but when I found this site, hidden in the posts was the beginning of the answers for me.  I may still be gluten, soy, corn intolerant but I am feeling so good now and I just thought I would tell someone.  I just wanted to share. Thanks for reading.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      Not to mention my hips and knees are killing me and I have really bad calf pains and horrible bloating after just 3 days of glutening. I don't think I could live like this for a whole week.
    • Endoscopy in 9 days after being low-gluten for a year. What to eat?
      I saw my gi today and he said to not worry about eating gluten. I have abdominal pain in the small intestine area and referred pain in my back, indicating pretty bad damage. So I'll just go without the gluten and do the genetic testing if needed.
    • Vagus Nerve Attack
      Hello All: I came across this series of posts from as Google search on "Wheat Vagus Nerve". I find all of your replies very interesting and would like to add mine for those searching for information but with differing symptoms. I have struggled with the vagus nerve impact to breathing as Maria mentioned in the original post, but only an impact to breathing and nothing else.  But my symptoms were brought on not only by wheat, but also by other ingredients such as dark chocolate, probiotics, caprylic acid, mustard, fluoride in toothpaste/mouthwash just to name a few.  I found when I sat down my breathing would return to normal, but as soon I got up, the impact would return. The impact to breathing would come 4-6 hours after ingestion and last for about the same amount of time.  At times I could not even take ten steps without having to stop, not being able to breath even moderately.  The symptoms now are decreasing in severity but not in duration. My doctor checked my blood for celiac and results were negative. A number of chest x-rays to rule out COPD.  I am waiting on an appoint with an allergy specialist in a few weeks to see what they have to say.  Needless to say, it is difficult to maintain a healthy weight. Thanks for your posts, and I hope my contribution is of benefit to others also.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,683
    • Most Online
      1,763

    Newest Member
    Rainbow60
    Joined