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

So Stressed! This Is All I Can Think About.. Please Help! :(

taynichaf

Recommended Posts

taynichaf Contributor
taynichaf
Posted

I have a long list of symptoms that go along with celiac disease, and I have had them for awhile, I just always thought they were normal. About 2 years ago is when things started to get worse. The begining of this year I joined a nutrition challenge, so I was pretty much cutting out bread and eating natural foods. I had a few slip ups and then i tried a low carb high fat diet.. Then i had a slip up after two weeks and had a huuuuge gluten binge.. The next couple days I would get random stomach pains and my fatigue just got worse as i continued to eat gluten.. So that lead me to search my symptoms and then I found celiac disease. After going to different doctors for about 2 years, I was extremely happy when my symptoms matched celiac disease.

 

I went to the doctor about a week ago and he tested me for it (NOT the full panel...makes me angry!) This was only a week into my gluten chalenge and I have been fairly "low gluten" for a few months before the test. THE TEST WAS NEGATIVE, but I had unexplained deficiencies. I was in sooo much pain just a week into the gluten challange that my doctor said im atleast gluten sensitive.

 

I just can't figure out what I should do! Either way, I will not eat gluten, and as of now i consider myself NCGI, but I just NEED to know for sure!

 

What should I do?? I was thinking about just going back to my doctor and demanding a DNA test for celiac, that way I can rule it out or not? And then probably trying the gluten challange again, for a longer time period :( and praying that the test would be accurate this time..

 

 

Thank you so much for reading<3 I've been posting like crazy on this website, but I feel like I have to be my own doctor and it's extremely frustrating! I want to figure this all out ASAP because I'm 18 years old and will be going to college in a few months and gluten is ruining my life!

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

Celiac.com Sponsor (A8-M):


taynichaf Contributor
taynichaf
Posted
  • Author

And I have been trying to get a copy of my test results, just to see, but the doctors office hasnt replied back :/

mamaw Community Regular
mamaw
Posted

I  would  ask  for the  full celiac  panel,  an  endo  with  biospies ( at  least  three)... Not  knowing  how  young  you are I  think  if  you  are  school  age  or  college  age  you need  to  have  some  documentation for  that  reason... But  if  the  doctor  says  you  are  gluten sensitive  there  is  no  testing  available at  present  for  that  . Either  way the outcome  is  the  same  , a 100% gluten free lifestyle....

Myself, I feel  that one  needs to be  on  gluten  for  at least  several months  to get  accurate  testing.....oops,  sorry  I just  reread  your post  & now  see  you  are off to college....

Most  doctors  just don't  get  it  yet  so many of us  understand  your  aniexty... You  could  look  for a  doc  that  understands  the issues  of  celiac   / gluten  sensitive....

nvsmom Community Regular
nvsmom
Posted

I think it's smart to get those blood test copies. They could tell you a lot. The DGP is one of the better celiac tests for early celiac disease or eating "gluten light" - it won't be as accurate as if you were eating gluten everyday for a couple of months but it might work for you.

 

I think gluten intolerance is a spectrum, and this view is becoming more popular.  Some gluten intolerant people are celiacs in that it causes the immune system to attack the gut, others have skin attacked. There are also the other symptoms like ataxia or neuropathies that they don't have a specific label for but sound very scary to me.  You fit somewhere on that spectrum. Celiac  is just one point of the spectrum. Gluten can affect people in horrible ways... Unfortunately the only tests we have are based on intestinal damage (if your intestines are damaged it is usually a positive test) but hopefully they'll come up with better testing for the other gluten intolerance symptoms in the next few years.

 

In the mean time, can your doctor give you a NCGI diagnosis (on paper) so you can have accommodations made for you at college? You'll need to take care of yourself so you feel well enough to do well at school.  Hang in there.  All you can really do (if testing is indeed done) is stay gluten-free for at least 3 months - 6 is better- and then reassess if your health has improved.  I suggest keeping a food and symptom journal to keep track of every little symptom and how long it lasts so you'll really be able to see any trends.

 

Best wishes.

GottaSki Mentor
GottaSki
Posted

Oh Sweetie - Welcome!

I hate seeing that another is experiencing the frustration I lived for far too long...you have had excellent advice from the previous posters.

Do let us know if you have more questions :)

GFinDC Veteran
GFinDC
Posted

Hi,

 

Getting the gene tests is not bad idea.  Having the genes doesn't mean you have celiac disease, but it does mean you could develop it.

 

Here are a couple articles about NCGI.  The symptoms of NCGI can be very similar to celiac disease.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

Here is a video on gluten that might help too.

 

The Gluten Experts Video

 

NotMollyRingwald Apprentice
NotMollyRingwald
Posted

I'm new, too, and can't really add to the awesome info above, but I just wanted to send (((HUGS))) your way. 

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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
      - trents replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    2. HAUS
      - HAUS posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free...
    3. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

      Years ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came...
    4. Rejoicephd
      - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

      Wow what a helpful article!! I am just seeing this now but I hosted a small group of family for Thanksgiving at my house this year and I did some of these things- got a butterball gluten-free turkey, got gluten-free stuffing, had a few gluten-free sides, and a gluten-free nothing-Bundt-cake. I had other non gluten-free things there too for others, and I also...
    5. Scott Adams
      0

      Rainforest Cafe Fined After Child's Severe Allergic Reaction: What It Means for Gluten-Free Safety

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,429
    • Most Online (within 30 mins)
      7,748
    Sandra Kardos
    Newest Member
    Sandra Kardos
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
×
×
  • 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.