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

Igg, Endoscopy, Colonoscopy! Oh My!

Lanimo

Recommended Posts

Lanimo Rookie
Lanimo
Posted

Hello world,

This is my first time ever posting, so bare with me as I make it through the learning curve. :)

I'm a 26 year old female, with symptoms starting over 10 years ago. It started with terrible pain and nausea eating Tex-Mex. Not gassy pain, but someone is slicing open my stomach and rubbing broken glass around kind of pain. It took me years to figure out it was the avocado in the guacamole. Fast forward 5 years and I start to have the same reaction to eggs. After 5 years of not eating eggs, i'm baffled by the blood test that came back negative for a food allergy. What is causing my body to react that way?

I've had preliminary blood work, but the only positive results for celiac was the igG gliadin. Does this indicate anything?

igg- 33 (30 is cut off for "normal")

iga- 4.5 (5 is cut off)

iga 17 (20 is cut off) i think this is the tissue one

I'm scheduled for an endoscopy and colonoscopy, but that wont be for a few weeks.

More info that may or may not be related. Most of the symptoms have been around a while:

Anxiety/depression (mostly severe anxiety)

add/mental fog

patch of unidentifed "stuff" on my face. (ive always assummed it was a dry patch that comes and goes, but it is very smilar to that of lupus's butterfly skin condition on face)

dry burning eyes and need of glasses

insomnia (no matter how tired I am)

fatigue (no matter how much sleep I get)

loss of weight and appetite

cold hands and feet (all the time, i can be sweating and they are still icicles)

mild fevers

milder, constant, lower back and gut pain

sometimes pain is sharp in my gut, and i'm finding blood in my stool (this can happen for weeks at a time)

sometimes after I eat, I have to go to the bathroom right away. do not pass go, do not collect $200

Mother and sister have autoimmune problem with thyroid and hashimotos, and both grandfathers with colon cancer

I was gluten free for 24-48 hours before i realized i needed to keep with it for testing, and i was ravenously hungry and fell asleep before my husband, which could be considered a small miracle. mind over matter, or actuall helpful in such a small time frame.

I'm also being tested for lupus, and i'm guessing they'll know If I have an IBD when I get my Scopys done (irritable bowel disease)

I can find a lot of my symptoms on a few different diseases/autoimmune lists, so i'm more confused that ever.

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

Celiac.com Sponsor (A8-M):


gatita Enthusiast
gatita
Posted

The blood in your stool sounds like you for sure should have that endo and colonoscopy. I'm having both next week, too, so here's to the scopes!

Even if your endo doesn't show villi damage you could have one of any of a number of conditions that can improve on a gluten-free diet. IBD's are one group, as well as SIBO and others.

Besides being literally allergic to wheat (we're not sure yet about gluten), I have SIBO. SIBO is a very common complication of celiac/gluten intolerance and other gastric issues that happens to cause very similar symptoms. Especially the broken glass one you describe and also the "gurgles." I always described it as tiny elves with pick-axes in my stomach! Now that I've been treated for SIBO, things are much quieter in there...

I hope you get some answers soon, and once your endo is done, do try going gluten-free.

It has taken me six months to see big improvements, but they are real!

Lanimo Rookie
Lanimo
Posted
  • Author

I wasn't impressed with the NP I saw at the GI office. She told me "gurgle" sounds are normal, people just need to deal with it. Then I described my symptoms and she would say,"you need to see your primary about that, you need to see your gynecologist if your having lower back pain and lower abdominal pain."

I Thought if anyone would understand, it would be someone in a specialists office, but she made me feel like a hypochondriac. I don't want to go to someone who doesn't see my body as a whole. You can break a toe and throw your whole body off, let alone an autoimmune disease. Closed mindedness is what has kept me in pain for a decade.

On another note, I woke up today and my "butterfly" facial rash is back. This is more indicative of lupus, but don't other autoimmune cause this too?

Also, has anyone else had this reaction to eggs? And if so, were you able to eat them after you got your diet and medications right?

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

Hello world,

This is my first time ever posting, so bare with me as I make it through the learning curve. :)

I'm a 26 year old female, with symptoms starting over 10 years ago. It started with terrible pain and nausea eating Tex-Mex. Not gassy pain, but someone is slicing open my stomach and rubbing broken glass around kind of pain. It took me years to figure out it was the avocado in the guacamole. Fast forward 5 years and I start to have the same reaction to eggs. After 5 years of not eating eggs, i'm baffled by the blood test that came back negative for a food allergy. What is causing my body to react that way?

I've had preliminary blood work, but the only positive results for celiac was the igG gliadin. Does this indicate anything?

igg- 33 (30 is cut off for "normal")

iga- 4.5 (5 is cut off)

iga 17 (20 is cut off) i think this is the tissue one

I'm scheduled for an endoscopy and colonoscopy, but that wont be for a few weeks.

More info that may or may not be related. Most of the symptoms have been around a while:

Anxiety/depression (mostly severe anxiety)

add/mental fog

patch of unidentifed "stuff" on my face. (ive always assummed it was a dry patch that comes and goes, but it is very smilar to that of lupus's butterfly skin condition on face)

dry burning eyes and need of glasses

insomnia (no matter how tired I am)

fatigue (no matter how much sleep I get)

loss of weight and appetite

cold hands and feet (all the time, i can be sweating and they are still icicles)

mild fevers

milder, constant, lower back and gut pain

sometimes pain is sharp in my gut, and i'm finding blood in my stool (this can happen for weeks at a time)

sometimes after I eat, I have to go to the bathroom right away. do not pass go, do not collect $200

Mother and sister have autoimmune problem with thyroid and hashimotos, and both grandfathers with colon cancer

I was gluten free for 24-48 hours before i realized i needed to keep with it for testing, and i was ravenously hungry and fell asleep before my husband, which could be considered a small miracle. mind over matter, or actuall helpful in such a small time frame.

I'm also being tested for lupus, and i'm guessing they'll know If I have an IBD when I get my Scopys done (irritable bowel disease)

I can find a lot of my symptoms on a few different diseases/autoimmune lists, so i'm more confused that ever.

Was the gliadin test definitely the DGP test and not the AGA tests since DGP is more sensitive and specific to celiac?

I had one doctor appointment while still in high school where they made me feel stupid, and based on that incidence, now I tend to wait a long time before going to see a doctor. My past three appointments I've gone in with information written down and have gotten what I wanted, so maybe that will help. A friend told me to always remember that a doctor is providing a service, and if you don't like it, try another one :)

I had high DGP igG results. Here's where all my info is: http://www.celiac.co...results-please/ I have sent a few e-mails out to different Celiac Centers and here is the initial response I got from University of Chicago:

"I have presented your question to our medical director, and he says that your situation is conflicting. If you were his patient, and you had symptoms of celiac disease, these results would justify doing a biopsy on you and that would be the final determinant of the diagnosis."

I e-mailed again asking why it was conflicting, and here's that response:

"It's conflicting because you have a negative TTG (the most sensitive test) while the DGP-IgG (that should be overlapping with TTG) instead is positive. "

Your IgG is elevated, and your ttG is getting there, which according to Chicago, looks like there's a strong possibility you have celiac. Any chance you can see the GI doctor instead of the NP next time? btw we're close in age. I'm 27 :)

Lanimo Rookie
Lanimo
Posted
  • Author

Thanks for replying. I ended up in the ER on Thursday night/Friday morning with severe pain so I officially warrant one of the emergency spots at my GI office. I will get my endoscopy and colonoscopy done this Thursday. I think i'm more worried about clear liquids and laxatives for two days then the procedure itself.

I don't know for sure which celiac tests were done. I was given the results over the phone without prior knowledge of what they were so it's hard for me to understand what tests were actually done. I got a printout of my allergy tests, which all came back normal. At least next time i see someone, even the NP, i'll have all my test results so if i do have an autoimmune i won't feel like i need to defend myself.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

not good to hear you went to the ER, but happy that you will get an endoscopy sooner!! Hope you're feeling better today :)

  • 1 month later...
powerofpositivethinking Community Regular
powerofpositivethinking
Posted

Lanimo, I'm curious as to what you ended up being diagnosed with?

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,671
    • Most Online (within 30 mins)
      7,748
    Paul1567
    Newest Member
    Paul1567
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.