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. Lotte18
      - Lotte18 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      9

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

      I feel the same way. Looks like the research is being done in Switzerland. Thank you Scott for keeping us updated on the research!
    2. knitty kitty
      - knitty kitty replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease. It will not show if you have active Celiac disease. Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies. The...
    3. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases...
    4. McKinleyWY
      - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Accuracy of testing concerns

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast. All my life I have avoided bread and most products containing enriched flour as they contain yeast (when making the man made vitamins to add back in to the flour). Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat...
    5. trents
      - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,241
    • Most Online (within 30 mins)
      7,748
    Lectinfreetxn
    Newest Member
    Lectinfreetxn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.