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

What To Do, What To Do?

TPT

Recommended Posts

TPT Explorer
TPT
Posted

Received my blood work and biopsy results. Doctor considered everything negative. Please note that this is a resident Dermatologist, that had to consult a gastro to decipher my results. I have no issue with that. Just pointing out she's not an expert in the non-skin results.

Deamdated Gliadin Iga~ 2 units. This is in the negative range of 0-19.

Deamidated Gliadin IgG~ 2 untits within the negative range of 0-19.

Endomysial Antibody Iga~ negative

transglutaminase ttg IgA~ <2 in a negative range of 0-3.

T-transglutmanase ttg Iga~9 U/ml This is a weak positve 6-9. (almost a positive)

I hope I copied this all right. The lab report is confusing. Any thoughts, specifically what I have in red?

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

What's your total IgA result?

TPT Explorer
TPT
Posted
  • Author

What's your total IgA result?

NO clue!!! The report seems so jumbled to me. Maybe I can scan and post it?

rosetapper23 Explorer
rosetapper23
Posted

Okay, for one thing, your dermatologist has no business running blood tests that she doesn't know how to decipher. Secondly, if she doesn't know anything about celiac, are you sure that she performed your skin biopsy properly? She should have taken the biopsy from a patch of skin NEAR a blister, not ON the blister. Do you know if she did this? If not, she needs to re-do the biopsy (and NOT charge you if you don't have insurance). If she biopsied a lesion/blister directly, it comes back negative. If she doesn't agree to re-do the biopsy, please see another dermatologist.

cassP Contributor
cassP
Posted

NO clue!!! The report seems so jumbled to me. Maybe I can scan and post it?

did u possibly mistype your results post? cause both ttg results u posted as Iga... might one of them be Igg ??

and yes- like said above- you need to ask your doc for a "Total Iga Serum" test- this would give u an insight as to whether your iga test are innacurately false for antigliadin and innacurately weak positive for ttg.

TPT Explorer
TPT
Posted
  • Author

I won't fault her for ordering the tests. I went to see her because I had rashes. 1 was new on my face, plus reoccuring rashes all over for 8 years. After putting some other info together, we decided to test for celiac. I wasn't initially going there because I thought I had celiac disease.

I will look at my report again and see if I made a typo. Also, is there a way I can put it in my post? I guess I would have to put it on photobucket or something?

TPT Explorer
TPT
Posted
  • Author

I won't fault her for ordering the tests. I went to see her because I had rashes. 1 was new on my face, plus reoccuring rashes all over for 8 years. After putting some other info together, we decided to test for celiac. I wasn't initially going there because I thought I had celiac disease.

I will look at my report again and see if I made a typo. Also, is there a way I can put it in my post? I guess I would have to put it on photobucket or something?

She did a biopsy on both the rash AND next to it. She said I am reacting to something. I forget if I already said I am going in for a patch test next month.

Aside from my possible celiac disease symptoms, I am a candidate for celiac disease. I already have an autoimmune disease called lichen sclerosis. My brother has a gene for celiac disease, and is currently going through similiar inconclusive testing like me.

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

Celiac.com Sponsor (A8-M):


TPT Explorer
TPT
Posted
  • Author

Received my blood work and biopsy results. Doctor considered everything negative. Please note that this is a resident Dermatologist, that had to consult a gastro to decipher my results. I have no issue with that. Just pointing out she's not an expert in the non-skin results.

Deamdated Gliadin Iga~ 2 units. This is in the negative range of 0-19.

Deamidated Gliadin IgG~ 2 untits within the negative range of 0-19.

Endomysial Antibody Iga~ negative

transglutaminase ttg IgA~ <2 in a negative range of 0-3.

T-transglutmanase ttg Iga~9 U/ml This is a weak positve 6-9. (almost a positive)

I hope I copied this all right. The lab report is confusing. Any thoughts, specifically what I have in red?

TPT Explorer
TPT
Posted
  • Author

T-transglutmanase ttg IgG~9 U/ml This is a weak positve 6-9. (almost a positive)

You were right, it is IGg. I copied it wrong.

ravenwoodglass Mentor
ravenwoodglass
Posted

I won't fault her for ordering the tests. I went to see her because I had rashes. 1 was new on my face, plus reoccuring rashes all over for 8 years. After putting some other info together, we decided to test for celiac. I wasn't initially going there because I thought I had celiac disease.

I wouldn't fault her either. In fact I would commend her for it. Pretty savvy resident IMHO.

cassP Contributor
cassP
Posted

T-transglutmanase ttg IgG~9 U/ml This is a weak positve 6-9. (almost a positive)

You were right, it is IGg. I copied it wrong.

ahh... then u should def get an Iga serum level test- looks like you could be a person with Gluten Intolerance or Celiac with an Iga deficiency.

and even if your hives are allergic hives and not DH. they could be due to a wheat allergy in addition to your gluten intolerance.

good luck with everything

SGWhiskers Collaborator
SGWhiskers
Posted

I agree, get the total IGA Serum test, but once that blood is drawn, start on a strict gluten free diet for 3 months. Pay attention to the cross contamination. It really does make one as sick as eating a slice of bread. With your autoimmune history and your brother's possible celiac, you wouldn't be doing yoursef any favors by skipping the diet because of weak positive results. Some would argue a positive is a positive, no matter how weak. I'll just add that so many people here have found relief after giving up gluten even when they had negative blood results. It seems that while our blood work has gotten so much better, there is a group of people who are either celiac and the current blood tests don't pick up on it or who are gluten intolerant to the point of misery without a strict gluten-free diet.

You've got nothing to lose with a 3 month gluten-free trial, so go for it. Then reintroduce the gluten heavily and see what happens.

Best wishes and be strict and consistent.

TPT Explorer
TPT
Posted
  • Author

I agree, get the total IGA Serum test, but once that blood is drawn, start on a strict gluten free diet for 3 months. Pay attention to the cross contamination. It really does make one as sick as eating a slice of bread. With your autoimmune history and your brother's possible celiac, you wouldn't be doing yoursef any favors by skipping the diet because of weak positive results. Some would argue a positive is a positive, no matter how weak. I'll just add that so many people here have found relief after giving up gluten even when they had negative blood results. It seems that while our blood work has gotten so much better, there is a group of people who are either celiac and the current blood tests don't pick up on it or who are gluten intolerant to the point of misery without a strict gluten-free diet.

You've got nothing to lose with a 3 month gluten-free trial, so go for it. Then reintroduce the gluten heavily and see what happens.

Best wishes and be strict and consistent.

What is a total IGa serum test? Is it not part of the typical protocol? Being a derm. resident, she did look up what tests had to be ordered, so she could have missed something. Again, not faulting her. This isn't her area. Infact, when I faxed my info to my GP, he wouldn't comment on my bloodwork at all, saying it wasn't his area. And he's a seasoned doctor that does all kinds of research.

Jestgar Rising Star
Jestgar
Posted

Some people are IgA deficient, which means that any IgA tests may be falsely negative.

TPT Explorer
TPT
Posted
  • Author

So does a elevated ttg IGg indicate SOMETHING, or could it be high for no reason?

cassP Contributor
cassP
Posted

What is a total IGa serum test? Is it not part of the typical protocol? Being a derm. resident, she did look up what tests had to be ordered, so she could have missed something. Again, not faulting her. This isn't her area. Infact, when I faxed my info to my GP, he wouldn't comment on my bloodwork at all, saying it wasn't his area. And he's a seasoned doctor that does all kinds of research.

for a Derm, she did pretty well- she also ordered the Endomysial Antibody test i see- which my Gi didnt even order!!!! my GP ordered it.

total Iga isnt neccessarily part of the routine Celiac test- but it will help you and your doc read your celiac tests better. Iga is something your immune system makes-

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.