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

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
      104,697
    • Total Posts
      921,783
  • Topics

  • Posts

    • The anxiety thing is there I take teas, and supplements along with CBD oil to help with it, and long walks and exercise when I get antsy. As for the human interaction it is a mix of other mental issues, and the way I feel about people who can eat gluten. If they are not eating I have no issue talking with people. I mentioned I have issues accepting them as the same species when I see them eating. My reaction to gluten is so ingrained in me that it is not a food but a poison, that watching others eat it causes a subconscious reaction where I find myself avoiding them and looking down on them like something from another planet. I end up disgusted with them and walking away, I will go out of my way to avoid people and places where foods like this are present. This is my TRAUMA part of the gluten exposure, and one of the big things I am trying to address in my life right now. I know it is irrational to do so but I end up doing it, I have never cared about others race, religion, or looks, but if I see them eating a gluten/poison, it somehow changes how I perceive them and interact with them and I hate this part about me. It is taking a lot of mental effort to try to smile and treat them as a human, and not something to be looked down upon in disgust. I just recall that mental state that gluten puts me in with my mind and body turning against me and not doing what I will it and the fear comes back. This diet is pretty much like mine, I take Doctors best Magnesium powder in a tea that is actually brewed with st johns wort (never thought much of it) , I use Liquid Health Stress & Energy along with the Neurologic Support they have, twice-three times a day for B vitamins(along with a bunch of other supplements) . I can not digest meats or carbs well, meats it is a issue with breaking them down same with egg yolks, I literally just burp up the undigested meats hours later. I have found the only way to eat them is to boil/slow cook them til they melt then blend them into a broth and have it with digestive enzymes so only do it with turkey bacon, longhorn, and salmon in small amounts in soups or for flavoring stock for stir frys.  As for Carbs like rice and potatoes I end up getting really gassy and bloated, same with sugars in any amount greater then like the size of my thumb give or take. Oats I only have gluten-free Harvest in about a tbsp amount when tasting recipes of stuff I sell at farmers markets. So I eat mostly fats and protein from egg whites, nuts, seeds, veggies, and vegan protein powders blends balanced for complete proteins. I have at least 1-2 dried fig, dates, handful of banana chips, or a 1/4 of a small fruit with meals for fruits.  My meals are mostly egg white and veggie omelettes, stir frys, and soups, Always with lots of fats and proteins in each meal. I have found having nutritional yeast to help with my mood and energy levels also and find someway of having it in meals often. I keep my foods on rotation and keep getting updated feed back on ratios with my dietician. I also have a rather odd list of foods I can not eat due to allergies/intolerance.
    • 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.
    • DaVinci's Pizza has several gluten-free items great gluten-free pizza (well done suggested) and they don't have anything with gluten that goes in the fryer, so wing and fries are great all salad dressing made in house and gluten-free.  Owners mom has Celiac so they're very empathetic. Cheers. And enjoy. I eat there all the time and have NEVER had an issue. And if someone just touches bread then prepares my food its all over for me 6-8 hrs of reaction for me. Also Jimmy Johns @ 17th and Peachtree Street also great just tellm'to change glove and ask for the paper to be placed on the sandwich board before they make it. Also never had an issue but I have only had the Italian style lettuce wrap. 
  • 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