Sarcoidosis/ Chronic Sinusitis from GLUTEN?

[Mommyjonez]

I have suffered with chronic sinusitis for 8 years. Jan 2019 I went to the E.R and found out I had pneumonia. O2 was 63. I found out I had iron deficient anemia, low thyroid and left the hospital after a week with an Inogen (oxygen machine). I have been to a lung doctor, hematologist/oncologist, ENTs. They did a bronchoscopy and found gramulomas..sarcoidosis was the diagnosis due to those results. Numerous bloodwork showed very high A.C.E. (204+),extremely low IgA, IgG,and IgM, high SerPI #'s ,AbsoluteCD #'s low, and Helper T(cd4) high, suppress T (cd8) low. I am 43 and never smoked and always been healthy as far as I knew till now. I had pneumonia a month ago again. . The doctors have no clue. They say it will take an entire team to figure this out. I read recently that these could go with celiac disease or stem from it..Is anyone familiar with this? I have unresolved constant sinus drainage and ear issues along with the oxygen issue. 

[trents]

Have you suggested this to your primary care doc? I find that if I link some some evidence from the web I sometimes get listened to by physicians. There is much more awareness in general concerning celiac disease within the medical community than there was 15-20 years ago but there is still a lot of ignorance as well. Many of the symptoms you list are not uncommonly associated with Celiac disease.

You do not specifically say you have been diagnosed with celiac disease. Have you?

[cyclinglady]

While I was diagnosed with celiac disease six years ago, my husband went gluten free per the advice of my allergist and his GP 20 years ago.  His problem?  Chronic sinus infections.  He has not had in 20 years.  Once he gave up gluten, he also realized that he always felt like he had the flu with achy joints and fatigue.  He snorted horribly.  All that resolve on a gluten free diet.

It would be nice to know if  he actually has celiac disease, but that would require him to go back on gluten for 8 to 12 weeks as all celiac disease testing requires a full daily gluten diet.  We like paying our bills, and we know gluten makes him sick.  He will not do it.  

So, it might be possible that your sinus issues are related to celiac disease or you could have a wheat allergy.  Just do not go gluten free without a simple blood test that checks for antibodies.  If celiac disease is ruled out, you might have Non-Celiac Gluten Sensitivity.  There is no test for that.  Just need to rule out celiac disease.  

My celiac disease was caught when I went for a cancer screening colonoscopy.  Even though I had no GI issues at the time, my GI noticed my life-long anemia.    I also have Hashimoto’s thyroiditis.  Why are you hypo?  Do you know the root cause?  Any antibodies testing for your thyroid?  

 

Edited February 10, 2020 by cyclinglady

[trents]

It is also true that those with one autoimmune disease often develop others.

[Awol cast iron stomach]

Hello

Great advice from posters above.

I often had chronic sinus, ear, and uti issues. As for gi at the time I was diagnosed as IBS by symptoms only no testing.

Sometimes the uti test didn't show I had a UTI, but I was given antibiotics anyways. I remember one Dr in frustration told me to stop taking baths to avoid symptoms of uti's. I did this for a while and it didn't work. I now know my uti like symptoms without a positive UTI test are similar to interstitial cystitis and are connected to inflammation and immune issues for me.

They improve when my diet and inflammation are in control. I don't know if it is purely ic as I also likely have vagus nerve/ cns autonomic  issues from years of delay in proper diagnosis. Also some trigger sensitive mast cells.

My mom (retired nurse) taught me to steam my sinus etc while growing up which I often did before I would go to a Dr. for sinus issues. Sometimes I was able to get the inflammation under control.

My mom early on with my bladder issues at 5 did take me to my Dr as she knew I wasn't one to fake being sick etc, but she couldn't figure it out. Dr's knowing even less back then than now about the immune system told her it was "just me".  She should try to keep me calm and distracted as anxiety issues were likely the problem when I was urinating. (It's often common for many of us with celiac, autoimmune issues, or immune sensitivities/inflammation to be told it's mood/psychological issues as kids and young adulthood.

So in my opinion yes for some of us chronic inflammation along the respiratory and gi tract was persistent through the undiagnosed/misdiagnosed years. I was diagnosed with asthma at one point by one immunologist, I didn't use my inhaler it didn't help. 

Years later my immunologist and her team affirmed to me I don't have asthma as I suspected. She had me come in during my "attack" and also tested me when not having an attack. She and her team took their time with me. They can't "undiagnose" me from all those past diagnosis', but the past diagnosis' don't pan out on her testing and obviously I still had symptoms after the former Dr's treatment ?.

However getting to the right immunologist and her team did help to untangle the ball of knotted thread of immune symptoms I have.

However some of my issues even after going gluten-free and avoiding other intolerances linger. Most are related to my dysfunctional nervous system and trigger sensitive immune system so I work on accepting these issues  and managing them when they flare.

As an adult I have over the past 20 years  had vestibular issues that also relate to my gluten and inflammation sensitivity issues triggers by external factors not germs. This also caused misdiagnosis' as well. I now it to be my ataxia and likely  nervous system damage issues . 

I'm headed to the acupuncturist today as I haven't been able to clear my most recent issues with steaming, sauna, netti pot, Wal zyr etc. So an exposure to a series of chemicals a few weeks ago has triggered inflammation for me I can't clear- time for the needles.

My vagus nerve, ataxia, cns autonomic issues that I also deal with confused many Dr's as well for a long time.

If your Dr's are seeing inflammatory numbers that are elevated and don't make sense, but the usual tests are negative for the run of the mill diagnosis. I encourage you to find a Dr that is immunologist in fact one that has a team. That is who helped me. My cousin  celiac was discovered by a  rheumatologist who told her to go to a GI for endoscopy.

It often is a long path and journey to discovery and requires the right Dr 

Stay strong

[Fenrir]

I certainly had many more sinus/ear infections before I went gluten-free. I have a brother that is not a celiac but does have Sarcoidosis and your case sounds similar to his. He is only 34. Only way to find out for sure is to have the testing done. Celiacs are at a much higher risk to get another autoimmune disease. 

[trents]

When I was a child I had frequent bouts of tonsillitis for which I was given antibiotics until age 7 when the tonsils were removed. Back in those days, penicillin was still a silver bullet. As a teenager and college-age young adult I was on tetracycline therapy continuously (if I recall correctly) for acne. I often wonder if all those antibiotics set the stage for adult onset of celiac disease in my mid-late 30s, which of course, wasn't diagnosed for another 14-15 years.