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

Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

rcheltrvel

Recommended Posts

frieze Community Regular
frieze
Posted

statistics being.....those two genes account for less than one hundred percent of celiacs, and other genes are included in Europe....especially Dq9......

I wonder if the wine tasting issue was contamination with the crackers that are there to clear your palate?  not that you ate any, but maybe crumbs?

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

Celiac.com Sponsor (A8-M):


  • Replies 71
  • Created
  • Last Reply
IrishHeart Veteran
IrishHeart
Posted

statistics being.....those two genes account for less than one hundred percent of celiacs, and other genes are included in Europe....especially Dq9......

 

 

He did not make that clarification at all during his presentation. He seemed very clear about the DQ2 and DQ8 only.

 

just sayin--not arguing :) 

kareng Grand Master
kareng
Posted

He did not make that clarification at all during his presentation. He seemed very clear about the DQ2 and DQ8 only.

 

just sayin--not arguing :)

 

 

Yep.  That's what various doctors said at ICDS in Sept, too.  

 

 

 

ICDS - International Celiac Disease Symposium

rcheltrvel Newbie
rcheltrvel
Posted
  • Author

I happen to live on the eastern end of Long Island, NY, gateway to the Long Island wineries (we have over 70). It's a big thing here and my husband and I go all the time, especially when visitors from out of town come to visit. This past weekend we went and at every winery, I asked about the glue/wheat thing. Most people said they didn't know but a few knowledgable people working there were able to confirm that they do use wheat in the paste or glue to seal some of the barrels. They have to use something that is edible to seal the barrels I was told, so they use a wheat paste sometimes or a glue that is all edible which includes wheat. It would make sense as to why I react to some wines and not others. I had wine from a steel barrel and nothing happened to me. I had one from oak where they used the paste and I did react. I am just going by what I was told and my symptoms. When you are finally gluten free, you can really see what gives you a reaction. I will keep testing alcohol and post my findings here :)

rcheltrvel Newbie
rcheltrvel
Posted
  • Author

statistics being.....those two genes account for less than one hundred percent of celiacs, and other genes are included in Europe....especially Dq9......

I wonder if the wine tasting issue was contamination with the crackers that are there to clear your palate?  not that you ate any, but maybe crumbs?

And no to the cracker thing. I brought all my own gluten free crackers and never touched anything else with wheat.

IrishHeart Veteran
IrishHeart
Posted

I happen to live on the eastern end of Long Island, NY, gateway to the Long Island wineries (we have over 70). It's a big thing here and my husband and I go all the time, especially when visitors from out of town come to visit. This past weekend we went and at every winery, I asked about the glue/wheat thing. Most people said they didn't know but a few knowledgable people working there were able to confirm that they do use wheat in the paste or glue to seal some of the barrels. They have to use something that is edible to seal the barrels I was told, so they use a wheat paste sometimes or a glue that is all edible which includes wheat. It would make sense as to why I react to some wines and not others. I had wine from a steel barrel and nothing happened to me. I had one from oak where they used the paste and I did react. I am just going by what I was told and my symptoms. When you are finally gluten free, you can really see what gives you a reaction. I will keep testing alcohol and post my findings here :)

 

 

You may wish to read what the testing of this "wheat paste" reveals. It's a non-issue for celiacs in terms of levels of detectable gluten.

 

Open Original Shared Link

rcheltrvel Newbie
rcheltrvel
Posted
  • Author

I have read that article and many others. Some people react to stuff that is below the lower limit of gluten, right? I seem to be that one that has reactions to things with gluten in it under 20 parts per million.

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

Celiac.com Sponsor (A8-M):


rcheltrvel Newbie
rcheltrvel
Posted
  • Author

Who knows, it could be the sulfides effecting me but then why would vodka bother me?

GottaSki Mentor
GottaSki
Posted

Who knows, it could be the sulfides effecting me but then why would vodka bother me?

 

Sometimes alcohol is simply hard on a damaged digestive system.  Give it some time gluten-free and try again :)

rcheltrvel Newbie
rcheltrvel
Posted
  • Author

Maybe that is it Lisa, I hope so. 

kareng Grand Master
kareng
Posted

I have read that article and many others. Some people react to stuff that is below the lower limit of gluten, right? I seem to be that one that has reactions to things with gluten in it under 20 parts per million.

 

 

Testing under 20 ppm doesn't not mean the product has 19 ppm.  It could have 2ppm or 0.  If they had used a test for 10 ppm, it might have been negative,too. 

nvsmom Community Regular
nvsmom
Posted

Actually, Dr. Fasano addressed the genetic component at the gluten-free Conference Saturday in Orlando and he talked about this rather factually.

He said the HLA-DQ2 and HLA-DQ8 genes are the only genes associated with celiac. They are necessary for it, but not determinate.

In other words, you may have the genes and never trigger it. But if you do not have DQ2 or DQ8, celiac is excluded.

I know there are reports of cases where people have a celiac diagnosis, and do not carry either of these genes, and I cannot account for the abnormality. I am merely reporting what he said. He said they have researched it and this is still the conclusion.

Nobody yell at me now. I am just the messenger.

I know that is the theory but..... What about those like ravenwoodglass who is a firmly diagnosed celiac who does not have those DQ2 and 8 genes, I think she has the double DQ9.... I think that's what it was. I think.

I know doctors say that it is impossible to have celiac disease without those genes, but it is quite amazing how often the impossible happens when it comes to medical issues. ;). LOL

GottaSki Mentor
GottaSki
Posted

There are also MANY unknown other issues within the Functional Digestive Disorders realm -- I have every marker for celiac disease -- that did not stop me from developing or being born with another unknown functional GI disorder.

IrishHeart Veteran
IrishHeart
Posted

There can be elevated TtG antibodies in  liver disease or other AI diseases..

There can be villous atrophy in other disease states too

Causes of Villous Atrophy Other Than Celiac Disease

  • Giardiasis
  • Collagenous sprue
  • Common-variable immunodeficiency
  • Autoimmune enteropathy
  • Radiation enteritis
  • Whipple’s disease
  • Tuberculosis
  • Tropical sprue
  • Eosinophilic gastroenteritis
  • Human immunodeficiency virus enteropathy
  • Intestinal lymphoma
  • Zollinger–Ellison syndrome
  • Crohn’s disease
  • Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)

So a combo of the "positive blood test" and "a positive biopsy" still may not mean celiac.

 

The genetic test would be the tie breaker, so to speak.

rcheltrvel Newbie
rcheltrvel
Posted
  • Author

So far I have elevated TtG antibodies and nothing else wrong. What happens then? What if every test under the sun comes back negative besides TTG-IGA?

IrishHeart Veteran
IrishHeart
Posted

Find out why they are elevated.  Was the biopsy neg? gene test neg?

rcheltrvel Newbie
rcheltrvel
Posted
  • Author

gene test and biopsy both negative and my uncle is a good pathologist in new york city and I had my slides sent to him for a second opinion, he said the GI took enough samples and everything looked fine.

kareng Grand Master
kareng
Posted

gene test and biopsy both negative and my uncle is a good pathologist in new york city and I had my slides sent to him for a second opinion, he said the GI took enough samples and everything looked fine.

 

 

Sounds like you don't have Celiac.  Good for you!   :)

anand Newbie
anand
Posted

U may want to read

Open Original Shared Link

And also see if any gluten sensitivity specialist like dr fasano , Is interested in ur situation...

An intestinal permeability test will also help determine extent of leaky gut, which u can work towards sealing...

Best wishes,,,

nvsmom Community Regular
nvsmom
Posted

There can be elevated TtG antibodies in  liver disease or other AI diseases..

There can be villous atrophy in other disease states too

Causes of Villous Atrophy Other Than Celiac Disease

  • Giardiasis
  • Collagenous sprue
  • Common-variable immunodeficiency
  • Autoimmune enteropathy
  • Radiation enteritis
  • Whipple’s disease
  • Tuberculosis
  • Tropical sprue
  • Eosinophilic gastroenteritis
  • Human immunodeficiency virus enteropathy
  • Intestinal lymphoma
  • Zollinger–Ellison syndrome
  • Crohn’s disease
  • Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)

So a combo of the "positive blood test" and "a positive biopsy" still may not mean celiac.

 

The genetic test would be the tie breaker, so to speak.

 

Good point.

rcheltrvel Newbie
rcheltrvel
Posted
  • Author

No way, stay on my thread, I love a good argument! I don't have to think about me and my problems for a minute!!! :)

nvsmom Community Regular
nvsmom
Posted

No way, stay on my thread, I love a good argument! I don't have to think about me and my problems for a minute!!! :)

 

LOL Dr House would be handy here.  ;)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,412
    • Most Online (within 30 mins)
      7,748
    duddridge
    Newest Member
    duddridge
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Canker sores

      By Wheatwacked · Posted

      Studies have shown that individuals with canker sores tend to have lower levels of vitamin D in their blood compared to those without the condition. This suggests that vitamin D deficiency could be a risk factor for developing canker sores.  Vitamin D deficiency is very common in Celiac Disease.
    • Wheatwacked
      Cartilage and rib pain.

      By Wheatwacked · Posted

      So Sunday night after writing that post about Losartan was causing weakness in my hips I decided to stop taking it, even if against medical advice.  When I was 12 years old I read a book called The First Hundred Years of Surgery.  It gave me insight to the politics, financials and egos of the world.  My take-away at the time was: one day I'm going to have to find my own cure. Sunday 6 am was 134/60 after Losartan dose Sat nignt. Monday 8 am BP was 118/56 no Losartan sunday night. Tuesday (today) 6 am BP was 126/64. Getting up from the floor is improved. Brain fog improved, vision less foggy, cold feet not as cold, and not feeling like I need to go back to sleep almost as soon as I wake up. Doctors are required to follow protocols, not listen to patients.  I say I hurt and they say "that's not common, the medicine protects you, is good for you, keep taking it"  Not unlike Celiac Disease.  You eat gluten, get sick and your blood and biopsy says you do not have Celiac Disease, you are not sick.  Keep eating wheat because it is good for you. Despite what the doctors say, it appears ACE inhibiters and ARB BP meds are NOT good for me.  One had me considering a walker would be good (it had me bent over).  Standing straight once I stopped.  One had me thinking a walker was in my future (lost quadracept stability in knees, Lisinoprol caused an inquinal hernia, something caused a blind spot in my right eye and cataracts in both.  Amlodipine dehydrated me so I could not wear contacts, Losartan I was thinking a walker or wheelchair is immenent, hips and lower back getter weaker.  My only vision issue at 70 was increasing nearsighted and farsighted; until we attempted to control my BP. I am not advocating ignoring medical advice, but sometimes I know what is better for me than what the protocols say.  After all, I live in this body.  Doctors only see me for 20 minutes every 3 months. My current list: Medications: Prednisolone 2.5 mg 6 am Clonidine 0.1 mg 6 am, 2pm, 10 pm Rosuvastatin 20 mg evening meal Glimiperide 2 mg morning meal, evening meal Nicotinic Acid (Niacin) 6 am, 2 pm, 10 pm Liquid Iodine 600 mcg once a day in a drink.   Vitamins:  Several times a week. B1 250 mg, B2 100 mg, B3 500 mg, B5 500 mg, B6 100 mg, B12 1 mg, DHEA 100 mg, vitamin D 250 mcg, vitamin C 500 mg, CoQ10 200 mg, Selenium 200 mcg Taurine 500 mg,
    • Stephanie Wakeman
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Stephanie Wakeman · Posted

      Wow, thank you for share Elisal!  We do need to stay focused on the fact we are so much healthier without wheat and gluten as hard as it is! I've learned to love rice and almond flour based sweets and enjoy the corn and plantain chips as my go to salty snacks! 
    • Pablohoyasaxa
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By Pablohoyasaxa · Posted

      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      Is it common to develop a wheat allergy in addition to Celiac Disease?

      By ElisaL · Posted

      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
×
×
  • Create New...