Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Have I Finally Found An Answer?


new1234

Recommended Posts

new1234 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast
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.

nettiebeads Apprentice
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!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748

    kathleen apodaca
    Newest Member
    kathleen apodaca
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.