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Tracy210t

New here- chronically inflammed. At witts end.

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Hi all- im so sorry you are suffering from this gluten nightmare.....  here's my story in a nutshell. Any friendly advice is much appreciated.

I am 41, female, healthy weight, ex smoker.. even quit alcohol 10 months ago because of AI disease. Been DX'd with 1) Sjogren's Syndrome and 2) Relapsing Polychondritis. For those that don't know, RP is an AI disease where the body destroys its cartilage. Its pretty aggressive and there is no cure. It is fatal for alot of ppl when the airways collapse. Ive had chronic inflammation for probably 10 years but it is getting progressively worse. It didn't dawn on me until a few weeks ago that gluten intolerance may be driving this. I am in between doctors. I have a new patient apt w/ a new internal med doc 06/28/17. Id planned to ask her then to please test me for celiacs. (going back onto gluten to test this makes me ill thinking about it) My brother and mother have it.

I feel good and have plenty of energy. I am a healthy weight. I run, I bike, I walk, I take an hour long aerobics class 3 days a week. I have NO digestive issues. My 10 page labs are green across the board, except for high inflammation. Ive started researching this issue. Ive had more injections in the neck and back and wrists than I can remember. Ive had ablations, exploratory surgeries, botox, trigger point injections.. even a level 2 cervical fusion due to high inflammation in the spine and OA destroying the discs.

I have reduced gluten as much as humanly possible. I quit drinking. I take a good quality probiotic and fish oil. My hormones are all good- I take sublinguals for those. My thyroid is perfect. My periods are perfect. My skin is clear. Ive stopped eating dairy, corn and soy. I pretty much currently live off big homemade green salads with olive oil, I make my own soap (which I use as shampoo) I make my own laundry detergent..I even started eating several fork fulls a day of fermented cabbage (ughh) because of the healthy benefits to the gut. Its only been a few weeks. Am I just impatient? What gives? My eyes, wrists and spine are absolutely on FIRE.

XXOOO

 

Tracy

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Why?  Why bother to get tested?  A gluten challenge can be brutal and long (8 to 12 weeks for the blood test and 2 to 4 weeks for the endoscopy):

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

I just had anemia which prompted my doctor to run a celiac panel.  I waited 7 weeks for my endoscopy due to work constraints.  I ate gluten like crazy (I knew I had celiac disease in my heart).  At the end of those 7 weeks, I had all the classic gut symptoms which took over a year to resolve.  Even a glutening has triggered new  (I think) additional autoimmune issues.  I would urge you to to carefully consider the benefits of a challenge based on your current AI issues.  At least talk to a good doctor.  

My hubby has been gluten-free for 16 years -- long  before my diagnosis and he does not know if he actually has celiac disease, but we know gluten makes him sick.  He chooses to never do a challenge.  

As far as healing or seeing results.  It varies as we are all different.  My anemia, with supplements, resolved within three months but other issues took more than a year and I already had a good handle on the gluten free diet.

Finally, reducing gluten is not an option for a celiac.  Anything over 20 parts per million can trigger a celiac disease flare-up for most celiacs.

I hope this helps.  Just be sure you really research this throughly is my non-medical advice.  

 

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Thank you for replying. I think you are right- why take the chance of reinfecting myself with gluten exposure again when ive been trying so hard to rid it from my life?  I just read some interesting articles on Sjogrens Syndrome and gluten sensitivity and that they are related so that may answer one of my questions.

Your symptoms took over a year to resolve?! Holy moly.. I fear that is going to be my issue too. Are you feeling better now?

 

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The year to recover?  It seems pretty standard around here despite some literature  stating it only takes months for villi to recover.  That may be true, but most celiacs have systemic issues.  Neurological issues are usually the last to resolve, if at all.   And let's not forget that the gluten-free diet has a steep learning curve that can delay healing.  

I have read sites that promote a Whole Foods diet without gluten in an attempt to calm down inflammation or improve an autoimmune disorder.  It works for some but not all, but it is certainly worth considering.  For me, I was undiagnosed for years like so many celiacs.   I also have Hashi's which was diagnosed 20 years ago.  Since going gluten-free, after my celiac disease diagnosis, my thyroid has shrunk and my nodules are gone.  However, this past winter, I had a tooth infection, the flu, a cold and now my thyroid antibodies are high again.  I also developed autoimmune hives (like clockwork, they appear at 3:00 pm) as a result (I think).  My immune system is constantly running on high alert.  I have allergies to so many things.  But....what is a girl to do? Beside a cocktail of antihistamines, I  move forward.  I am "healthy".  I can still ride my bike, swim and run.  Maybe not as fast (who am I kidding...not fast at all) as when I was younger in my 30 and 40's.  I have Type 2 diabetes despite being thin.  Like celiac disease, diabetes is genetic.  

Read the Newbie 101 under coping.  Make sure everything is gluten free.  you would be surprised at hidden sources or dealing with cross contamination.  I know your family has celiac disease, but unless you walk the walk daily, you do not get it.  But...maybe you do!  

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Wow you have ALOT going on! Sorry to hear about your ongoing issues. Are you super duper strict with avoiding gluten or do you think you are still getting cross contamination? I will check out that portion of the forum- THANKS a bunch for that. It is all a bit overwhelming. I saw some people post that they saw "dramatic improvement!" within 2 weeks and I'm going rreeeaaalllly? *insert sarcasm.. haha. I know I wont get that lucky. I take metformin and armour and victoza. Type 2 diabetes runs in my family too. My glucose levels were never really high and I never got the official type 2 diagnosis but ive dropped all excess weight on these meds. I hope to wean soon. Did you fix the leaky gut? That is a daunting task isn't it!  

 

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I am on Armour too.  No metformin for me yet.  I am trying to manage on a low carb high fat diet for many reasons like having a damaged gut and being allergic to so many meds (yah know....swelling, hives, etc.).  Leaky gut.  Nope.  Better.  Zonulin seems to be increased in celiacs.  I am going to blame my gut on that!  Seriously, there seems to be a link.  

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I had to run go google zonulin. Never heard of that! Makes perfect sense though.. I assume every single person on earth with AI disease has leaky gut! Ya know, I drank several glasses to a bottle of merlot every night after work to "unwind" for many years before I figured out it aggravating the leaky gut! I'm SO glad I quit before it did more damage ...

Seriously, metformin is awesome. I love it. Great for metabolic resistance and free at a lot of places with an RX!

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Hello, 

Celiac Disease and alcohol consumption cause malabsorption that can lead to vitamin deficiencies. Nutrition has a part to play in connective tissue disorders like arthritis, Sjorgren's, Ehlers-Danlos, and polychondritis.  Here's an article about EDS and nutritional therapy.

http://www.chronicpainpartners.com/nutritional-therapeutic-strategy-for-ehlers-danlos-syndrome/

 Vitamin D is really important in controlling inflammation.  

https://www.ncbi.nlm.nih.gov/pubmed/23830380

You might consider checking for vitamin deficiencies at your next doctor's appointment.  

You might want to look into a low histamine diet and mast cell activation syndrome.  I found going on the Autoimmune Immune Paleo diet, a low histamine diet, and a low sulfite diet simultaneously helpful.  

The low histamine diet doesn't allow anything fermented. If your reaction to the fermented cabbage is "ugh," it's your body telling you not to eat it.  

Cabbage, fish oil, and wine are high in Sulfites.  Metformin is a sulfa drug.  Your body might be inflamed because of a Sulfites hypersensitivity that may occur with Celiac Disease.  

These are things I found helpful.  It took several months to figure out what works for me.  I'm doing much better now.  Like CyclingLady, I "eat to my meter" and don't take medication. 

I hope this helps us on our journey to wellness.

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Hello and welcome :)

14 hours ago, Tracy210t said:

It didn't dawn on me until a few weeks ago that gluten intolerance may be driving this. I am in between doctors. I have a new patient apt w/ a new internal med doc 06/28/17. Id planned to ask her then to please test me for celiacs. (going back onto gluten to test this makes me ill thinking about it) My brother and mother have it.

I'd just echo CyclingLady - do you need to put yourself through this? There are lots of good reasons for pursuing a diagnosis but amongst the strongest are helping you to 'keep honest' on the diet or ensuring that your not denying yourselves a lot of foods for good reason. Neither of these apply to you and so I'd have to ask what you have to gain by putting yourself through it? 

Oh and:

14 hours ago, Tracy210t said:

I pretty much currently live off big homemade green salads with olive oil

Me too, but every so often I fall of the wagon into a gluten free cheesecake or similar :D

Best of luck!

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Thank you guys! Great info and I'm researching your suggestions RIGHT now.

I am sure I will have questions ;)

- I will ask my doc about vitamin deficiency testing and I will NOT do that gluten challenge!

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