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My Gluten Challenge (Sjogren's + Celiac)

tgrand74

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tgrand74 Newbie
tgrand74
Posted

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. 

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dreacakes Rookie
dreacakes
Posted

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: Open Original Shared Link

 

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

Happyw5 Explorer
Happyw5
Posted

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!!!

cyclinglady Grand Master
cyclinglady
Posted

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!

Happyw5 Explorer
Happyw5
Posted

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!

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