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

Celiac Elusiveness Of Diagnosis In The Philippines

GeorgeDaniel

Recommended Posts

GeorgeDaniel Rookie
GeorgeDaniel
Posted

Good Morning Everyone! I hope you are all well. 

 

My name is George! My mom is half caucasian, her father is Scottish. 

I had a lot of health woes lasting for nearly a decade which took a huge and terrible toll in my life. I lost my promising career in being a ship's officer and also separated from my wife. I lost a lot of my teeth and had impaired vision. And the most cruel is being in pain for a very very long time. I mean waking up in the morning and feeling that pain coming at your tummy. Terrible. 

 

Sad to say, Ive also been to a whole damn lot of doctors and none of them could give me relief. I was diagnosed with so many conditions (GERD, Oesopaghitis, Gastritis etc). Took a lot of PPIs and other antacid... UNTIL...

 

I tried to find the answer on my own! And VOILA... GLUTEN! 

 

SO I went gluten free. That was already more than a year and a half ago.

 

My problem now is that I went and had a blood test done to me. But thjs is ONLY AFTER TWO WEEKS. 

 

Here are the results:

All units in U/mL 

 

Celiac DGP Screen 5.4 U/mL (POsitive is more than 10)

Gliadin IgG 5.5 (POsitive is more than 12)

Gliadin IgA 4.0 (POsitive is more than 12)

Human ttg IgA 2.9 (Positive is more than 10) 

Human ttg IgG 8.2 (Positive is more than 10) 

 

So with that, my doctor said I can continue then go for biopsy! I will have that this coming Monday <May 12) 

 

Can anyone please tell me if TWO WEEKS is enough to show positive in blood tests? Especially if you have been gluten-free for more than a year and a half and ate like tons of probiotics during the period?

 

And can you please look at my Human ttg IgG 8.2 which is just shy of 1.8 to make it 10 and show that there's damage happening to my intestines already? 

 

Also is ONE MONTH enough to test POSITIVE for BIOPSY (considering I eat a lot of Gluten containing wheat bread, about 4 slices a day)? 

 

Thank you everyone! YOu would think finding diagnosis is difficult there where you come from but imagine it here in my country where it is virtually unheard of.... 

 

Take care and hoping for any response to my queries. 

 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

You have had to been consuming gluten for 12 weeks prior to the blood test and two weeks before a biopsy.  Check out the University of Chicago's celiac website for more answers:

 

Open Original Shared Link

 

Keep us posted on your progress and I hope you are feeling better soon!

nvsmom Community Regular
nvsmom
Posted

Yeah, two weeks probably wasn't long enough but.... that tTG iGG is pretty darn close to positive for only being on gluten for two weeks. It makes me wonder what it would have been if you had been consuming gluten for another 6 to 10 more weeks.

 

2 weeks on gluten is generally considered enough for a biopsy although some doctors like 4 weeks better.

 

I would REALLY push to have those blood tests run again when you go in for your biopsy, or even better, sometime in June. I wouldn't be surprised if that tTG IgG goes up with an adequate gluten challenge... if your body can hack it for that long that is.

 

Probiotics will not affect the blood tests - they simply support the growth of beneficial bacteria, that's all.

 

Lest us know how it goes.

GeorgeDaniel Rookie
GeorgeDaniel
Posted
  • Author

Thank You VERY VERY MUCH Ms cyclinglady! Yeah It is really a good information site this link you have sent me! THANKS ;) 

 

nvsmom yes that is indeed my line of thinking as well! THANK YOU! I feel so overwhelmed there are people like you guys who take their time to listen and give this kind of advice and moral support! You cant imagine how good it feels specially when you've been feeling terrible like hellishly for a long time! Im glad there are people like you!

 

I had my biopsy this morning! They also found some non specific colitis down there in my descending colon and took some sample for biopsy there as well! 

 

another question, its possible to have celiac and another digestive conditon as well right? I mean both at the same time right? Hope you dont think Im too stubborn! Im just thinking perhaps the colitis in rectum have somethng to do with celiac too. 

 

Anyway guys ill just rest a bit but I promise to be more active here in this forum later! 

 

I wish you all the best and pray for a positive result for me so I can finally accept that I am sane and didnt imagine all that ;) 

 

MORE POWER EVERYONE! 

GeorgeDaniel Rookie
GeorgeDaniel
Posted
  • Author

You have had to been consuming gluten for 12 weeks prior to the blood test and two weeks before a biopsy.  Check out the University of Chicago's celiac website for more answers:

 

Open Original Shared Link

 

Keep us posted on your progress and I hope you are feeling better soon!

Thank you maam! I will! Thanks for replying to my query! It means so much! ;) 

GeorgeDaniel Rookie
GeorgeDaniel
Posted
  • Author

Yeah, two weeks probably wasn't long enough but.... that tTG iGG is pretty darn close to positive for only being on gluten for two weeks. It makes me wonder what it would have been if you had been consuming gluten for another 6 to 10 more weeks.

 

2 weeks on gluten is generally considered enough for a biopsy although some doctors like 4 weeks better.

 

I would REALLY push to have those blood tests run again when you go in for your biopsy, or even better, sometime in June. I wouldn't be surprised if that tTG IgG goes up with an adequate gluten challenge... if your body can hack it for that long that is.

 

Probiotics will not affect the blood tests - they simply support the growth of beneficial bacteria, that's all.

 

Lest us know how it goes.

THANKS very very much! Exactly my line of thinking good ma'am! Thanks... I really appreciate it! 

cyclinglady Grand Master
cyclinglady
Posted

So, you had both an endoscopy and a colonoscopy? I had both but the gastro took biopsies of the small intestine during the endoscopy to determine celiac disease. The colonoscopy was just a well-check since I was over 50.

Yes, you can have more than just celiac.

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
GeorgeDaniel Rookie
GeorgeDaniel
Posted
  • Author

So, you had both an endoscopy and a colonoscopy? I had both but the gastro took biopsies of the small intestine during the endoscopy to determine celiac disease. The colonoscopy was just a well-check since I was over 50.

Yes, you can have more than just celiac.

Hi Ms Cycling Lady! My biopsy result came out now and thus far they said it was inconclusive! The problem is I dont know how many tissue samples they took for the biopsy! Sigh.. But they said there was ulcers found in my large intestine and they might be investigating Crohns or other IBD sickness.... But this wasnt seen before a long long time ago when I first had symptoms and had an endoscopy more than 10 years ago! I mean I was sick already then and had more colonoscopy and nothing was found only now... sigh... and before they werent considering celiac at all! is it possible to have both Crohns and Celiac? Thanks! 

cyclinglady Grand Master
cyclinglady
Posted

Find out how many samples they took by asking for copies. You should always get copies of all lab reports. Also, take copies of the testing requirements you saw on the University of Chicago's celiac website and I discuss with your doctor. I really do not think you were back on gluten long enough. Perhaps they will retest. If they refuse, you can always go back to being gluten-free to see if it resolves symptoms.

At least you know the ulcers! That is good news. The doctors should be able to treat those.

GeorgeDaniel Rookie
GeorgeDaniel
Posted
  • Author

Find out how many samples they took by asking for copies. You should always get copies of all lab reports. Also, take copies of the testing requirements you saw on the University of Chicago's celiac website and I discuss with your doctor. I really do not think you were back on gluten long enough. Perhaps they will retest. If they refuse, you can always go back to being gluten-free to see if it resolves symptoms.

At least you know the ulcers! That is good news. The doctors should be able to treat those.

Ok I will do that! Yes indeed I really hope it comes to pass that I get my desired result! I want to make sure because these ulcers in the large intestine weren't there before! Sigh! I will return to Gluten Free and I really know that it will resolve symptoms! Im 100 percent sure of that! Sometimes its frustrating! Im doing this for my kids btw, me and their mom are separated but shes not allowing them to be tested :( Thats why I am doing this! So that I can use for a court order to test them... I dont want them to suffer what I have been through... if you understand what I mean :( 

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. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,078
    • Most Online (within 30 mins)
      7,748
    Deb baker
    Newest Member
    Deb baker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.