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

Lab Help?

Andi-is-sleepy15
 Share

Recommended Posts

Andi-is-sleepy15 Newbie
Andi-is-sleepy15
Posted

Hi all,

I’m new here 🙂 I have been on an over a year mission to figure out what is wrong with me. I can tell you it isn’t lupus or any of the varying hormonal autoimmune issues. The endocrinologist decided to throw in a celiac panel because I have lost 12lbs in the last month, my skin is heavily affected, and I have chronic bowel issues. I also have a long history of fainting, seizures, and terrible kidney infections. I now know what DH is after researching and am convinced that is my skin problem. In any case, the iga itself came back very elevated but the ttg-iga showed negative. Is this a thing? I was very encouraged that I had found an answer as the endocrinologist said “it’s celiac disease and I am referring you to gastro to figure out what to do about it” but with a negative ttg I am less hopeful now. Any insight here? Can I still be potentially hopeful to have found the diagnosis or does the negative ttg mean no?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Which IGA do you speak of that came back "very elevated"? "IGA" is a category of antibodies, one of which is the tTG_IGA. But there are others. Are you referring to total IGA being elevated? Can you reproduce your total report in another post along with reference ranges? It is not uncommon to get a negative tTG-IGA and still have celiac disease. But that is why it is a good idea to have a complete celiac panel ordered so that other IGA and IGG antibody levels can be looked at. The tTG-IGA misses 20% of celiacs of white European decent and 80% of people of black African decent.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited by trents
Andi-is-sleepy15 Newbie
Andi-is-sleepy15
Posted
  • Author
11 minutes ago, trents said:

Which IGA do you speak of that came back "very elevated"? "IGA" is a category of antibodies, one of which is the tTG_IGA. But there are others. Are you referring to total IGA being elevated? Can you reproduce your total report in another post along with reference ranges? It is not uncommon to get a negative tTG-IGA and still have celiac disease. But that is why it is a good idea to have a complete celiac panel ordered so that other IGA and IGG antibody levels can be looked at. The tTG-IGA misses 20% of celiacs of white European decent and 80% of people of black African decent.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Hi Trent!

I will do my best here. My total IGA is the elevated at 475 with a cutoff of 400. Ttg-iga is <1.0 with >15.00 as cutoff. Gliadin IGG <1.0. I have elevated platelets if that is relevant at all. All other CBC appears normal, but I can assure you the feelings are all present and the skin is an undeniably visible symptom I’ve been worried about for months. My brother has lupus and my mother RA so with all of these things going on for years we have suspected several culprits and no one has ever mentioned this one, however it seems incredibly consistent. Explains symptoms that other theories have not (I’ve read about night sweats on here. Mine have come and gone consistently seemingly for no reason, but are absolutely drenching). So when he said this, after years of searching for a solid lead, I was encouraged. I do have a gastro appt 10/13 but looking for any level of education on this since I hadn’t ever suspected this one.

This website is by far the most all encompassing I have found. Kudos to all involved in that.

trents Grand Master
trents
Posted
(edited)

DH is definitive for celiac disease. There is no other known cause for DH. My understanding is that DH has a distinctive appearance with little blisters. It would be a good idea to get the skin outbreak biopsied during an active outbreak. A small percentage of celiacs with DH will have negative SB lining biopsies and negative serum antibody tests. In other words, the immune system reaction will be manifested only epidermally. But DH can be a very unpleasant and stubborn affliction. There is something called Dapasone that seems to be effective in keeping it in check, however.

Edited by trents
Andi-is-sleepy15 Newbie
Andi-is-sleepy15
Posted
  • Author
1 hour ago, trents said:

DH is definitive for celiac disease. There is no other known cause for DH. My understanding is that DH has a distinctive appearance with little blisters. It would be a good idea to get the skin outbreak biopsied during an active outbreak. A small percentage of celiacs with DH will have negative SB lining biopsies and negative serum antibody tests. In other words, the immune system reaction will be manifested only epidermally. But DH can be a very unpleasant and stubborn affliction. There is something called Dapasone that seems to be effective in keeping it in check, however.

Thank you for all of this 😊 I’m kind of baffled that no doc tested it earlier (the skin) and I’m sort of shaming myself for not finding it. It won’t be long until it flares I am sure so that’s handy. 
 

We shall see where my journey goes! Thanks again!

trents Grand Master
trents
Posted
(edited)

By the way, I hope you did not start eating gluten-free before testing was done. That will invalidate the testing, whether the serum antibody testing or the endoscopy with biopsy. Don't start withdrawing gluten from your diet until all testing is complete. The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks prior to antibody testing and for two weeks prior to a biopsy. Many doctors forget to share this with their patients being screened for celaic disease or may not even know enough to tell them. The ignorance of gluten-related disorders in the medical community at large is surprising.

Edited by trents
Rogol72 Collaborator
Rogol72
Posted

A skin biopsy by a Dermatologist for DH would be definitive if that's possible before your gastro appointment while the rash is active. I was treated for Eczema with topical steroid cream which didn't help that much before a skin biopsy for DH came back positive. I had a subsequent negative SB biopsy for celiac disease. 

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

Celiac.com Sponsor (A8-M):


Andi-is-sleepy15 Newbie
Andi-is-sleepy15
Posted
  • Author
2 hours ago, Rogol72 said:

A skin biopsy by a Dermatologist for DH would be definitive if that's possible before your gastro appointment while the rash is active. I was treated for Eczema with topical steroid cream which didn't help that much before a skin biopsy for DH came back positive. I had a subsequent negative SB biopsy for celiac disease. 

Yea I think this will be an easy way to confirm or not when it pops up. Shouldn’t be long I haven’t had more than a week or 2 of clear skin.

Andi-is-sleepy15 Newbie
Andi-is-sleepy15
Posted
  • Author
8 hours ago, trents said:

By the way, I hope you did not start eating gluten-free before testing was done. That will invalidate the testing, whether the serum antibody testing or the endoscopy with biopsy. Don't start withdrawing gluten from your diet until all testing is complete. The Mayo Clinic guidelines for the pretest gluten challenge is the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks prior to antibody testing and for two weeks prior to a biopsy. Many doctors forget to share this with their patients being screened for celaic disease or may not even know enough to tell them. The ignorance of gluten-related disorders in the medical community at large is surprising.

I appreciate that and have now read that. Previous to this being ran and said to me I certainly wasn’t paying attention. However, I am somewhat nervous about that as my appetite has been so poor I wouldn’t be surprised if I wasn’t hitting that level just based on lack of global intake. 

trents Grand Master
trents
Posted

There is also a gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with celiac disease but there currently is no way to test for it. Celiac disease must first be ruled out. And NCGS is 10x more common than celiac disease. Some experts feel it can be a precursor to celiac disease.

Andi-is-sleepy15 Newbie
Andi-is-sleepy15
Posted
  • Author
2 hours ago, trents said:

There is also a gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with celiac disease but there currently is no way to test for it. Celiac disease must first be ruled out. And NCGS is 10x more common than celiac disease. Some experts feel it can be a precursor to celiac disease.

Also helpful. I am desperate to know at this point. Thank you!

GF-Cate Enthusiast
GF-Cate
Posted

 

FYI before having a skin biopsy...

"It is important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits."

Celiac Disease Foundation

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
      131,185
    • Most Online (within 30 mins)
      7,748
    wmkoehler
    Newest Member
    wmkoehler
    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

    • 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.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...