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

New Symptoms... Also, Celiac With Soy Or Anxiety Issues, Anyone?


amandanoelle889

Recommended Posts

amandanoelle889 Newbie

Spring of last year, I pushed my doctor for Celiac testing, and received these results:

T Transglutaminase IGA | RANGE: 0-15 U/mL | RESULT: 9 U/mL (negative)

T Transglutaminase IGG | RANGE: 0-15 U/mL | RESULT: 3 U/mL (negative)

My symptoms at the time (as well as currently) include:

* Recurring bloating and abdominal pain

* Excessive flatulence

* Lactose Intolerance

* Chronic diarrhea and constipation

* Occasional pale, foul-smelling stool

* Joint pain (I also have mild Scoliosis)

* behavior changes/depression/irritability

* Fatigue, weakness, lack of energy

* Haven't mensturated for about a year (gyno convinced it's from my BC)

* Diagnosed with Irritable Bowel Syndrome (IBS)

* Mild anxiety and concentration issues

After very kurt, closed-minded responses from both my general practitioner and gasteroenterologist, and my first year of college beginning, I gave up on further testing for the time being and decided to just "deal."

Since, my symptoms have increased. Now, I also exhibit frequent wooziness/lightheadedness/feeling "out of it" and slight loss of balance (sometimes directly after eating gluten products,) sharp, stabbing chest pains under my left rib as well as over my heart (chalked up to anxiety, I've been put on xanax, which has helped slightly,) a frequent dull tightness in my chest, increased headaches, almost instant dull pain in my lower abdomen when I lay on my stomach, and increased sensitivity to food allergies. I've also been reacting to soy more lately, which I am not allergic to.

I have recently gotten referred to a new gasteroenterologist, and am pushing for another IGA and IGG test to see if my levels have risen. After which, I figure I will start a gluten-free diet, and go from there.

My friend was recently diagnosed Celiac, and has almost completely mirrored my symptoms, especially causing me to seek further testing. Anyone else out there reacting with anxiety/chest pains or soy issues?


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



Celiac.com Sponsor (A8-M):



stephharjo Rookie

I also tested negative and had a lot of the same symptoms you have, especially the pain in my side after many misdiagnosis' a gall bladder removal that did not help at all I finally did a gluten free diet on my own. Even my newest gastro said oh its IBS here's a laxative. I said no. The diet has made a world of difference it's so great. While I have a long way to go as I've been dealing with this for many years and I have also reacted to eggs shortly after going gluten free I am certain that gluten was the problem. You don't need a medical test to tell you that gluten is a problem so don't feel bad if it's still negative. Try the diet religiously and gauge how you feel every step of the way. I felt so much better after only a few days and it now been 3 weeks and I'm seeing more and more differences in my health everyday. Main stream doctors have very closed minds when it comes to celiac and gluten intolerances I recommend finding a place in your area that specializes in celiac and gluten intolerance. I have found one in California I would like to go to but I live in remote Alaska so it might be a while before I can get there. You might have a better chance though. I went to a general dietician but her knowledge was very limited as well. Good luck and when all else fails, trust your instincts they are more accurate then any medical tests. Good luck!

Bubba's Mom Enthusiast

I'm 6 weeks off gluten and have been getting chest pains, anxiety, trouble sleeping..and on and on. I've found that a lot of these symptoms are from low calcium, low magnesium, low potassium, and low phosphorous levels in one's system.

This could be due to villi damage from gluten(like in my case) or poor diet, or both.

Whatever you decide about testing, it would be a good idea to try suppliments or foods rich in these nutrients to see if you feel better?

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 ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    2. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Aretaeus Cappadocia replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Dried Chickpeas

    4. - ainsleydale1700 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

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

    • Total Members
      133,434
    • Most Online (within 30 mins)
      7,748

    LexiBusch
    Newest Member
    LexiBusch
    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
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
    • ainsleydale1700
      Hi, could someone help me understand the result of my gene test? DQ2 (DQA1 0501/0505,DQB1 02XX): Negative DQ8 (DQA1 03XX,DQB1 0302): Negative The patient is positive for DQB1*02, one half of the DQ2 heterodimer.  The doctor said I don't have Celiac genes.  I asked him to clarify about my positive DQB1*02, and he said it's a gene unrelated to Celiac.  I have all the symptoms and my bloodwork is positive for antibodies, despite being on a gluten-free diet for the past 4 years.  He also did a biopsy but told me to continue a gluten-free diet and not eat gluten before the biopsy.  Based on the gene test and biopsy (which came back negative) he ruled out Celiac, leaving me very confused.    
×
×
  • 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.