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 Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    2. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    4. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    5. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    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

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • 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.