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Have I Finally Found An Answer?
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3 posts in this topic

Hi,

I have been reading these boards for several weeks now and have learned a lot of good info. Here's my story.

Until I was 12 years old, my only health problems were migraines (the kinds that were so bad I would eventually throw up or need a painkiller shot....saw spots, etc.) about four times per year and a belly that stuck out really far despite my extremely skinny body. Then, when I was 12, I had a three week long bout with strep throat before it was diagnosed and I was put on antibiotics. Ever since then, I have had CONSTANT sinus problems. Severe infections at a bare minimum of four times per year which require antibiotics (which I hate taking so often). These infections are so bad they feel like an all-out flu and completely interrupt my life. In an effort to stop these infections, my doctor suggested a tonsillectomy at age 20. At that time, I discovered I had some blod clotting issues when I could have died from my tonsillectomy because of severe and profuse bleeding three weeks after the surgery on two seperate ocassions. I also have unexplained bruises every day on various parts of my body. The tonsillectomy did not help at all, and I continued to have the sinus infections despite trying every possible treatment and alternative method to beat them. Allergy testing for outdoor and indoor allergens always comes back negative. I asked my doctor last year about food allergy and he said my symptoms didn't fit the bill so he wasn't going to test. In May, I decided I was going to take my life back and started doing extensive research. I discovered Candida and Celiac and started doing a very low yeast/low gluten diet. Guess what? I WENT LONGER THAN EVER BEFORE WITHOUT A SINUS INFECTION AND WHEN I FINALLY GOT ONE I WAS ABLE TO GET THROUGH IT WITH NO ANTIBIOTICS FOR THE FIRST TIME IN MY LIFE!!!! Although sinus problems were my main battle, here are other symptoms I have always had that point to Celiac:

- get sick often when I get less than 8 hours of sleep per night for several nights

- brother has addison's disease (linked to celiac, right?)

- EXTREME gas and constipation problems (But no diarreha or pale stools)....these have gone away completely with diet

-Dark black circles under eyes constantly

- Very thin (5'9" 120 pounds, can't gain weight easily)

- Extremely brittle nails

Sorry this is so long, I am just hopeful that maybe I have found a solution to a long-time battle. I would have no problem eliminating ANY food if I knew it would help me, that is how desperate I have become. I am now 25 years old and ready to start my life again if this is the answer. Here are some questions I have:

1. Did anyone else have extreme sinus problems as their primary symptom?

2. If I decide to get tested, how long should I go back on a gluten diet before doing so?

3. Anyone know any specifics about the relationship between addison's disease and celiac?

Thanks so much for reading this.

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1.  Did anyone else have extreme sinus problems as their primary symptom? 

2.  If I decide to get tested, how long should I go back on a gluten diet before doing so? 

3.  Anyone know any specifics about the relationship between addison's disease and celiac?

Thanks so much for reading this.

<{POST_SNAPBACK}>

Welcome to the board...you will find this is a great place for info and support.

Here are some answers to the questions you had:

1. I did not have sinus problems but that can be a symptom, everyone is different with symptoms and some don't even get any

2. If you get tested you need to go back on gluten for at least 3 months and eat about equal to 3 pieces of bread a day in that time. It is important to be on gluten while testing because otherwise you will not get accurate results.

3. There have been links between addison's disease and celiac...being a celiac and not following the diet can cause pretty much anything.

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Hi,

I .  Here are some questions I have:

1.  Did anyone else have extreme sinus problems as their primary symptom? 

2.  If I decide to get tested, how long should I go back on a gluten diet before doing so? 

3.  Anyone know any specifics about the relationship between addison's disease and celiac?

Thanks so much for reading this.

<{POST_SNAPBACK}>

Yes, I used to have very severe sinus infections right before I became really sick with celiac disease and for a while afterwords. Because of the malabsorption the body isn't able to fend of bacteria or viral infections like a normal person's. I still get treated for sinus infections now and then, and have even thrown off a few without going to the dr, but they are no where near as severe as before. And autoimmune disorders "piggyback" on others, meaning if you have one (celiac disease) you very easily could have others now or develop them later. But, to make things more frustrating, the malabsorption from the celiac disease can cause other AI symptoms, when another AI isn't really present. Good Luck!

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  • Posts

    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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