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

Blood Test Still Positive

abaker521

Recommended Posts

abaker521 Rookie
abaker521
Posted

Hi Everyone -

I've been feeling crummy all week so it was no surprise that after my bloodwork was done on on Tuesday the nurse told me I still had elevated celiac antibody levels. All she said was back in September before I was gluten-free, I was at 80 and now (5 months gluten-free) I'm at 61. I have been soo strict.. not only with food, but with CC and also beauty products. Does anyone know if antibody levels can spike from foods other than wheat, barley and rye? Can corn or oats cause this? I recently cut out dairy and coffee too, just in case. I'm going to find a specialized, even if I have to go out of state. I never had a biopsy done because my doctor didn't think I needed it. Also, they only tested 2 out of the 6 things on the celiac panel. Not sure why. Lately, I'm just been super bummed. I'm trying so hard but getting nowhere. ..blah <_<

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

The only way corn or oats could cause "this" is if they were already cross contaminated with gluten. Otherwise they are safe, because they are a different grain than the wheat triticum family, unless you have an additional food type allergy or intolerance to them. That will still not be a celiac reaction that causes auto immunity. However, it is recommended that at first that the clean certified gluten free oats be avoided during the healing phase, then re introduced slowly.

A certain percentage of celiacs are permanently oat-sensistive, even if they are certified gluten free oats. (one theory is that this is due to the type of cultivar, or brand of oats being grown.) But this will not, in theory, make you have antibodies to the wheat family.

Gemini Experienced
Gemini
Posted

Hi Everyone -

I've been feeling crummy all week so it was no surprise that after my bloodwork was done on on Tuesday the nurse told me I still had elevated celiac antibody levels. All she said was back in September before I was gluten-free, I was at 80 and now (5 months gluten-free) I'm at 61. I have been soo strict.. not only with food, but with CC and also beauty products. Does anyone know if antibody levels can spike from foods other than wheat, barley and rye? Can corn or oats cause this? I recently cut out dairy and coffee too, just in case. I'm going to find a specialized, even if I have to go out of state. I never had a biopsy done because my doctor didn't think I needed it. Also, they only tested 2 out of the 6 things on the celiac panel. Not sure why. Lately, I'm just been super bummed. I'm trying so hard but getting nowhere. ..blah <_<

Could you get copies of your testing and post which tests were run and the numbers? It's hard to give advice when I don't know which tests were run because that does make a difference. All I can generally say is that 5 months is not a very long time to be gluten-free and expect your numbers to be stellar.

I never re-tested for 1 year and then my numbers were good. Feeling crummy doesn't necessarily mean it's from gluten either.....I have a virus this week that's been going around and I feel like crap, including my tummy, which never bothers me anymore. I have been gluten-free for 7 years this April. I have a virus and it has nothing to do with gluten. Your numbers have come down a little bit and that's good but please post actual testing and results and we'll be able to help you more.

abaker521 Rookie
abaker521
Posted
  • Author

Thanks for the replies :) ..yes I have requested to have my tests sent to me then I'll definitely post them. I felt great last week but over the weekend at the health food store, I had a sample of a new 'gluten/dairy free' protein bar only to find out it had wheatgrass in it. That was Saturday then my test was on Tuesday.. so perhaps that's it? I still feel like the gluten is making it's way out of my system. I've had sharp lower abdominal pains, distended belly, brain fog, and those oh-so-lovely mood swings. :blink: ..I'm feeling slightly better today, but this was really took a toll on me. Had my first 'celiac breakdown' yesterday LOL. Thank goodness I have a patient husband!

I'll be back with the test results shortly. Thanks again!!

WinterSong Community Regular
WinterSong
Posted

I got my blood tests redone at three months gluten free, and my doctor warned me that some people don't see any difference at all until they reach six months, so at least you're seeing progress.

I know it's frustrating. My doctor was shocked when my levels (which were quite high at 300+) dropped to 53.1. Then after another three months I was disappointed to see that it only went down to 30.9. I was hoping to be back in the normal range by then. But my doctor did also say that sometimes as you get closer to normal numbers, it can take longer for them to drop. So I'm still working on getting back to normal myself, and I've been on the diet very strictly for nine months.

Just keep being diligent, and I'm sure your levels will go down. :)

abaker521 Rookie
abaker521
Posted
  • Author

I appreciate the encouragement. I just got a call from the nurse this morning and she said I'm low on vitamin D so she suggested I get vitamin D3 (400IU) supplements. This was funny to me considering I live in Florida and I was just laying out in the sun last weekend! They also referred me to a dietitian. I swear, if they just tell me to "stay away from gluten and eat produce" I'm going to lose it. That's exactly what I've been doing.. and then some! lol ...I have developed a love affair with gluten-free Rice Chex so maybe I need to avoid that too. I think the worst part is the guessing game and the constant fear of "is this going to make me sicker." I know I'll get there.. it just takes time I guess. :unsure:

flowerchild04462 Newbie
flowerchild04462
Posted

My 13 year old daughter's first blood tests were 300+ and after 6 months on a strict gluten-free diet, still 300+... I feel your pain and frustration. I just cannot imagine it :( I hope you feel better soon. Now we are going to follow through with an endoscopy and I'm going to request a full celiac panel done and ask for testing for other possibly auto immune diseases, just to rule anything out. It's so frustrating to work so hard to keep her gluten-free to find out that we got no-where. Hope you have better results on your next test.

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

It is possible that you need more time.

It is also possible that there are still things in your diet/environment which are bothering you. In the Fasano study which determined that 20 ppm levels are safe, Open Original Shared Link one of the participants had to leave the study due to a complete relapse.

In other words, those levels aren't safe for some of us. It is hard to know who. Some need a whole foods diet.

abaker521 Rookie
abaker521
Posted
  • Author

OK! I finally got my test results sent to me and I'm utterly confused (such a newbie, sorry!)..

When I was first diagnosed back in September these were my results:

Gliadin AB (IGA) 51.0 Unit/mL (high)

Transglut IGG 3.4 unit/mL (normal)

Transglut IGA >80 unit/mL (high)

Gliadin IGG 10.5 unit/mL (high)

These were my results from a week ago (he only tested the following two):

Gliadin AB (IGA) 5.3 Unit/mL (normal)

Tranglut IGA 61.6 (high)

..can anyone help me interpret these results? It looks like my Gliadin IGA went down to normal range but my Transglut IGA is being stubborn.

I'm determined to conquer this! :angry: ..thanks in advance for your help!

Linus Newbie
Linus
Posted

The half life of the antibodies (iga ttg) is 4 to 5 months. As long as gluten is not present, the antibodies are harmlessly floating around. Don't expect dramtic chanes in 5 months.

dilettantesteph Collaborator
dilettantesteph
Posted

Are you still having symptoms?

Gemini Experienced
Gemini
Posted

OK! I finally got my test results sent to me and I'm utterly confused (such a newbie, sorry!)..

When I was first diagnosed back in September these were my results:

Gliadin AB (IGA) 51.0 Unit/mL (high)

Transglut IGG 3.4 unit/mL (normal)

Transglut IGA >80 unit/mL (high)

Gliadin IGG 10.5 unit/mL (high)

These were my results from a week ago (he only tested the following two):

Gliadin AB (IGA) 5.3 Unit/mL (normal)

Tranglut IGA 61.6 (high)

..can anyone help me interpret these results? It looks like my Gliadin IGA went down to normal range but my Transglut IGA is being stubborn.

I'm determined to conquer this! :angry: ..thanks in advance for your help!

I replied to you in a PM but will add that from your blood work, it doesn't look like gluten is the culprit. Your gliadin IgA has come down very nicely and that's the test for compliance. Feeling crummy can come out of nowhere for anyone and eliminating dairy for now is probably a good idea.

I developed a problem with dairy 2 years into the diet. I can eat very dairy lite now but will never be able to eat a bowl of ice cream or pudding again.

A spoonful is OK but a bowlful will have me spending the day near a bathroom. It is not unusual for people to develop a problem with dairy after months on the diet. You may not have noticed it before because the gluten reaction was worse and masked the dairy reaction. A dairy reaction can mimic a gluten reaction 100%...it did for me.

You may not have to avoid the rice chex completely but don't overdo any one particular food or you'll overload the system. You are doing well so keep it up and expect to have to some off days. We all do!

abaker521 Rookie
abaker521
Posted
  • Author

Are you still having symptoms?

Yes I'm still having some symptoms unfortunately.. bloating..brain fog..mood issues.. but they certainly aren't as severe. My BM's are a bit better I suppose? :rolleyes: ...perhaps it's just all hormones too. I went out birth control a few months back and I know my body is still recovering from that too. I went off dairy so hopefully that will help!

abaker521 Rookie
abaker521
Posted
  • Author

I replied to you in a PM but will add that from your blood work, it doesn't look like gluten is the culprit. Your gliadin IgA has come down very nicely and that's the test for compliance. Feeling crummy can come out of nowhere for anyone and eliminating dairy for now is probably a good idea.

I developed a problem with dairy 2 years into the diet. I can eat very dairy lite now but will never be able to eat a bowl of ice cream or pudding again.

A spoonful is OK but a bowlful will have me spending the day near a bathroom. It is not unusual for people to develop a problem with dairy after months on the diet. You may not have noticed it before because the gluten reaction was worse and masked the dairy reaction. A dairy reaction can mimic a gluten reaction 100%...it did for me.

You may not have to avoid the rice chex completely but don't overdo any one particular food or you'll overload the system. You are doing well so keep it up and expect to have to some off days. We all do!

Thanks so much for all your VERY helpful information!! You told me 100% more than my own doctor.. who immediately scheduled me with a dietitian because he said I "wasn't following the diet." UGH! I have definitely cut out dairy and probably need to lay off all the fruits and veggies.. most likely over-doing the fiber lol. I feel best in the morning then it gets worse during the day (severe bloating, fatigue, feeling spacey). Can other autoimmune disorders cause an elevated Transglut IgA/tTg? Thanks again for your help!

Debbypete Newbie
Debbypete
Posted

There are other thoughts in the medical world about different kinds of "gluten". Here is a link to one of those ideas

Open Original Shared Link

Dr Osbourne says many other grains can act as gluten does in our bodies. I, for example get DH from corn/maize products. It is very difficult to eat anything. B)

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. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    3. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    5. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,924
    • Most Online (within 30 mins)
      7,748
    Jimlock
    Newest Member
    Jimlock
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
×
×
  • 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.