Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Normal to do just biopsy and IgA test?


sddave

Recommended Posts

sddave Enthusiast

My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.


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



Celiac.com Sponsor (A8-M):



Victoria1234 Experienced

Not sure, but the biopsy is the definitive end all be all sign you've got it.

Gemini Experienced
1 hour ago, sddave said:

My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.

I would agree that you may have Celiac because your tTg is slightly elevated and your Gliadin Peptide is very elevated....which means you are producing antibodies to the gluten in your diet.  Yes, there is another test called the EMA that is usually not done without other positives (which you have) because it is an expensive test that has to be done by hand.  This is why many GI's do not order one right away or at all.

As far as the biopsy being the Gold Standard....it isn't, because if you have patchy damage or damage that is just in the beginning stages, they may miss it and then tell you you don't have Celiac, when you do.  Many doctors do not diagnose Celiac without extensive damage so even the biopsy may not give you the answers you need. This is why diagnosing Celiac can be so frustrating.

I would ask for the EMA test as you already have 2 other positives on your incomplete panel. If that is positive, then coupled with a positive tTg, that is a slam dunk for Celiac without the biopsy. You could also ask for gene testing, to see if you have the genetics to trigger for it.  If the EMA is negative, then a biopsy would be the next step.

ravenwoodglass Mentor
1 hour ago, sddave said:

My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.

With a gliadin result that high yes you are celiac.  If your doctor is doing a biopsy keep eating gluten until that is done. If your doctor feels a biopsy isn't needed or you have chosen not to have one you can start the diet. Welcome to the club you never wanted to join and I hope you are feeling much better soon.

cyclinglady Grand Master
1 hour ago, sddave said:

My pathologist said I "may" have celiac.

And these were my IgA

Total IgA     138 mg/dL   68 - 408 mg/dL

Tissue Transglutam,IgA  11 U/mL     0 - 3 U/mL

Gliadin Peptide Ab, IgA     98 Units    0 - 19 Units

 

Should of more blood tests be done?  I was told I was celiac.

I do not understand.  You had a biopsy that showed intestinal damage (based on earlier postings this week):

"So I was told my gluten antibody blood test came back positive.  The second time my biopsy was tested it came back positive a couple weeks ago.   I have a followup visit with my GI doc. this week."

 Since villi damage can be caused by many things, your GI then ordered  celiac blood tests which were strongly positive.  Your total IgA was normal, so that validates the celiac IgA antibodies test.  When dealing with celiac disease, it is used as a control test.  

What are you questioning?  The pathologist could not definitively give a celiac disease diagnosis without the celiac disease antibodies tests.  That is why he could not commit.  

Listen to your GI.  he has the complete story (lab results and test).  

This is a hard thing to absorb.  Grieving is normal.  Denial is a part of grieving.  I am sorry, but the good news is this is one Autoimmune disorder that can be managed.  

sddave Enthusiast

Maybe I wasn't clear.   Long story, but my biopsy was done first, and gluten antibody blood test done second.   I know that backwards but I thought my stomach issues were an ulcer because my symptoms were very bad when I was extremely stressed over the health of a family member.  My GI doc. reported a slightly flattened intestine from endoscopy.   One a followup visit two doctors attended.  The doc who did the endoscopy said at the followup I had IBS.   I asked what about the flattened intestine.   He looked at the computer screen.   I guess at biopsy report and decided to have another pathologist look at my biopsy.  The other younger doctor at my visit called and said he talked to the pathologist and said I "may" be celiac from a second test.  That was on a Friday.   The following Monday the other GI doc who did the endoscopy called and left a message and said I did have celiac disease, to go gluten-free and go ahead and take the gluten antibody blood test.   These results I posted were from my gluten antibody blood test.  They said the blood test was positive for celiac disease.    I've accepted I celiac but would hate to be mis-diagnosed.   My doctor's haven't given me a lot of confidence in them.

cyclinglady Grand Master

Ah, I can completely understand.  I am not a doctor, but your antibody results are high.  I would insist on getting a copy of the pathologist's report just for the record.    It sounds like the first GI was not looking for celiac disease initially.   You werelucky he took any tissue samples at all.  Luckily, he ordered the antibodies test too after being caught messing up.     I can tell you that on my visual (endoscopy) everything looked good per my GI. Iit was the pathologist's report that confirmed my diagnosis and I just had one positive on the celiac panel (you have two!).  

Sounds like your first GI goofed, but was able to save face and recover.  

With all your records on hand, you can always get another opinion for piece of mind.  Or just go gluten free.  In a few months, see if your antibodies drop and if your symptoms start to resolve (and I bet they will!!!)

Good thing you were on top of it!  Congrats!  


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    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

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...