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

Test Questions, Please Help!

Squrl14

Recommended Posts

Squrl14 Newbie
Squrl14
Posted

Hello:

I have been suffering from a variety of symptoms for a decade now and I am literally at my wits end. I feel like I cannot take being "sick and tired" anymore, and feel like a complainer for saying that. My main question is if you have high antibodies for Celiac, but the biopsy is negative, can you still have the disease? Also, can other things "mimic" Celiac? I was having chronic diarrhea for years and it went away in December. It was sometimes up to 11 times a day. I am exhausted, my hair is brittle and shedding, my stomach is bloated and hurts a lot, and I am very gassy. My chest hurts a lot as well. I had my thyroid checked and have positive antibodies (TPO) and my TSH is 3.2. I also have a long standing eating disorder history which I am getting treatment for. My estrogen is low, but slowly climbing as I restore weight. So, as you can see, I cannot tell what is leading to what. I don't want to take thyroid medication if it is GI related. I just want to be "normal", whatever that means. I am 30 years old and have no life because of all of this, despite being career oriented and successful. I had wiped Celiac off the boards after the endoscopy and negative biopsy results, but recently got blood work done that indicated my Vitamin D was low - which correlates with celiac disease. My GI doctor insists that I don't have it since the biopsy was negative, but my family practioner says I could since the antibodies are very high (I think 19 and they are supposed to be less than 9.) If anyone has a similar situation and/or could help me shed some light upon this I would greatly appreciate it. I feel lost and nobody seems to understand why I can't just "get well" and "eat more."

Thanks!

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

Celiac.com Sponsor (A8-M):


confused Community Regular
confused
Posted

There are many times they wont take enough biopsies to show the damage to the villi. How long did u have the test done, Can you maybe re-do the blood test and see what it comes out with. Or find a new dr that will diagnose you with blood work alone.

I for one, only did the blood work which was very high, but i also have DH. so that was enough to diagnose me.

You could always test threw enterolab to see if you have a problem with gluten and have the celiac genes.

Or you can just do what many do and go gluten free and see how you feel, if you dont care about an accuarate diagnosis.

paula

Ursa Major Collaborator
Ursa Major
Posted

Okay, here goes:

If you have thyroid antibodies, you have a problem with your thyroid and need to take medication for that. Any value over 3 (and it is now being revised to being over 2) for the TSH is too high and indicates a problem. The brittle hair and some of your symptoms are definitely thyroid related. Lots of people with celiac disease have other autoimmune diseases as well. You appear to be one of them.

If you have a high antibody count for celiac disease, than it is very likely that you got a false negative when getting your biopsy. It is very easy to miss the damaged spots when doing the biopsy, especially if less than five to ten biopsies are taken. The prudent thing for you to do would be to try the gluten-free diet to see if it helps relieve your gastro symptoms. You sure sound like you have a lot of symptoms that could be celiac disease.

When you start the gluten-free diet, it would be best if you would also eliminate dairy and soy, as those will hinder your healing, and lots of us can't tolerate them, either.

I hope you feel better soon.

Squrl14 Newbie
Squrl14
Posted
  • Author

Thank you for your reply. The reason I am hesitant to take Thyroid medication is because since restoring weight, my levels have gone down. TPO was 285 and now down to 144. TSH was 4.8 and now 3.2. My doctor wants to weight. Every symptom is co-existant of each problem. Can you have Celiac without the chronic "leaky gut?" I have not had one problem since December so I thought it could be anxiety or years of having an eating disorder.

Thanks again!

happygirl Collaborator
happygirl
Posted

You said you had high antibodies: which tests were performed, and which were elevated?

Squrl14 Newbie
Squrl14
Posted
  • Author

Hi:

Thank you all for replying. My test scores are as follows:

Antigliadin Abs, IgA 1

Antigliadin Abs, IgG 7

t-transglutaminase (tTG) IgA 4

t-transglutaminase (tTG) IgG 20

I have no idea what those mean. =) The last two are "flagged" as "high".

I am literally at my wits end and if anyone can offer me any direction it would be appriciated. I am willing to go off gluten and give it a test run, but am afraid it will show a false positive if I need further blood work.

Thanks!

confused Community Regular
confused
Posted
Hi:

Thank you all for replying. My test scores are as follows:

Antigliadin Abs, IgA 1

Antigliadin Abs, IgG 7

t-transglutaminase (tTG) IgA 4

t-transglutaminase (tTG) IgG 20

I have no idea what those mean. =) The last two are "flagged" as "high".

I am literally at my wits end and if anyone can offer me any direction it would be appriciated. I am willing to go off gluten and give it a test run, but am afraid it will show a false positive if I need further blood work.

Thanks!

do you know the refernce ranges for those numbers.

paula

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

Celiac.com Sponsor (A8-M):


Squrl14 Newbie
Squrl14
Posted
  • Author

Antigliadin Abs, IgA 1

Negative 0-4, Positive 4+

Antigliadin Abs, IgG 7

Negative 0-9, Positive 9+

t-transglutaminase (tTG) IgA 4

Negative 0-3

Weak Positive 4-10

Positive 10+

t-transglutaminase (tTG) IgG 20

Negative 0-5

Weak Positive 6-9

Positive 9+

Again, thanks a million!

Archived

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

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


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    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

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • 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.   
×
×
  • 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.