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

Working my way through all the celiac screens - wondering if I can skip the endoscopy for now ...

Scott Mengel
 Share

Recommended Posts

Scott Mengel Newbie
Scott Mengel
Posted

Hi.  My daughter was just formally diagnosed with celiac via endoscopy (with serology beforehand).  I started down that journey as well, though have had many fewer symptoms - mostly with "arm pain"/arthalgia? in both arms, issues with cold sores, eczema in adolescence - I think that's it.  I've always been an eater of just about anything.  I'm in good shape for a 60 year old, active, eat well, etc.  I have had just about all of the celiac tests, and am awaiting an appointment with a GI doc next week to go over results and discuss next steps (to include a possible endoscopic biopsy).  My results:

  • HLA-DQ2 (Celiac Panel) - present

  • HLA-DQ8 (Celiac panel) - absent

  • HLA-DQA1*05 (Celiac Panel) - present

  • Immunoglobulin A ... 188

  • TTG (Anti-Tissue Transglutaminase) IgA Quantitative  ... 12.2

  • Deamidated Gliadin Peptide IgA Antibody ... 3.03

  • Deamidated Gliadin Peptide IgG Antibody ... 1.36

  • ENDOMYSIAL ANTIBODIES IGA ... "High degree of non-specific fluorescence observed; results indeterminate"

I am wondering what those of you with much more expertise and experience would advise as far as the endoscopy.  My "gut" right now says that I likely have celiac, that I can go gluten-free without the endoscopy, and that I can re-test some months down the road to ascertain the effects of the gluten-free diet - and perhaps wait on the endoscopy until Medicare kicks in at age 65.  

Thoughts about my results or direction moving forward?  Thanks in advance!

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

You left out information that we need to understand your antibody test results. We need not only the raw scores but the ranges used by the lab to establish what is negative vs. positive. Different labs use different ranges. There is no industry standard. So, we cannot tell if any of your antibody tests were actually positive unless you give us the ranges. All we can say is that you have one, maybe two celiac gene which establishes the you have the potential for developing celiac disease but it does not mean you have it or will develop it. 40% of the population have one or more celiac genes but only about 1% or so actually develop celiac disease. It also takes a triggering stress event of some kind.

I would certainly hold off on going gluten free until you have more confirmation about whether or not you actually have celiac disease. The symptoms you describe are not common celiac symptoms so I would go forward with the endoscopy/biopsy to check for damage to the small bowel villous lining.

Edited by trents
Scott Mengel Newbie
Scott Mengel
Posted
  • Author

Thanks for the reply.  Here are the ranges provided by the labs:

Immunoglobulin A ... 188   Normal range: 66 - 433 mg/dL

TTG (Anti-Tissue Transglutaminase) IgA Quantitative  ... 12.2.  (Normal range: below <4.0 U/mL)

Deamidated Gliadin Peptide IgA Antibody ... 3.03.  Normal range: 0.00 - 4.99 FLU

Deamidated Gliadin Peptide IgG Antibody ... 1.36. Normal range: 0.00 - 4.99 FLU

trents Grand Master
trents
Posted

So, you are mildly positive for the tTG-IGA and you have genetic potential for celiac disease. Being as how your symptoms are not debilitating I would go forward with the biopsy.

If you go gluten free now and decide to go for more testing later you would need to go off the gluten free diet in order to have the testing be valid.

Wheatwacked Veteran
Wheatwacked
Posted
On 1/17/2024 at 10:48 PM, Scott Mengel said:

My daughter was just formally diagnosed with celiac via endoscopy

On 1/17/2024 at 10:48 PM, Scott Mengel said:

Thoughts about my results or direction moving forward? 

Start her gluten free journey with your support by also going gluten free.  

A biopsy would give you a baseline of damage if it is bad enough and they look in the right places.  Joining your daughter would almost make it moot.  There are many cases of postitive serology and negative biopsy and vice versa.  It takes some 10 or more years of being told they are not Celiac before a positive diagnosis.  To don't need a positive diagnosis to yield the positive effect of GFD, but it does help to validate your decision to every one else. Gluten Free Diet is still denounced as simply a fad.

 

On 1/17/2024 at 11:23 PM, trents said:

So, you are mildly positive for the tTG-IGA and you have genetic potential for celiac disease.

kind of like "partly pregnant"

Keep in mind that gluten free processed foods are not fortified.   Vitamin and mineral deficiencies are common in Celiac Disease from the villi damage while consuming gluten; dietary deficiencies while on GFD.

Around 40% of US, Canadian, UK and Ireland adults are low in vitamin D.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    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
      Food Allergies

      By Ginger38 · Posted

      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
      Bread choice for a newbie

      By Kris2093u4 · Posted

      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
      7yo struggling!

      By JForman · Posted

      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
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      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
      Blood results

      By trents · Posted

      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...