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

Symptoms And Negative Tests


alexx6520

Recommended Posts

alexx6520 Newbie

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG (this is a newer test)

Can all of this be in a normal range but still have celiac? His most recent test was the deamidated gliadin which I think was 7. I have a very constipated 4 year old with lots of celiac symptoms including a positive hla dq2 and family history. Gi has pretty much ruled out celiac but I'm still wondering. Considering having his random rashes checked. What is the normal pattern for dh? Does it come and go? What are the triggers if you're still eating gluten? Thanks.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Yes, as I understand it, DH can come and go, but when it goes it normally leaves some scarring (altough I guess there are some kinds that don't - the patterns vary). Iodine is a huge trigger for DH, both in iodized salt, shellfish,and whatever other foods it occurs in naturally.

Yes, if his tests are negative, they do rule out celiac (except for the false negative 20% rate :o ) There is also more commonly coming to be accepted that there is such a diagnosis as non-celiac gluten intolerant - which merely means that you don't tolerate gluten either, but they haven't devised a test for it. Most doctors don't accept this diagnosis because if you can't test for it, how can you define it? But the problem is, they haven't figured out the nature of this non-celiac gluten intolerance, so how can they devise a test for it. This kind of gluten intolerance tends (from my observations only and certainly by no means exclusively)to involve the less commonly accepted symptoms of gluten intolerance, such as migraines, gluten ataxia, MS-type symptoms. DH, and gluten intolerance which has already produced other autoimmune diseases.

All that being said, testing is notoriously unreliable in children under five, so it doesn't really mean much. Tell us more about his rashes. :)

Edited by Mushroom today to add:

See this study just reported today from Australia: https://www.celiac.com/articles/22430/1/Study-Shows-Gluten-Intolerance-Without-Celiac-Disease/Page1.html

ravenwoodglass Mentor

Yes things can be negative and he can still have an issue with gluten. Have you gotten your hands on the actual test results? Some doctors will call a low positive a negative. Regardless if he is done with testing give the diet a try. It won't hurt anything and it may help.

alexx6520 Newbie

Iodine is a huge trigger for DH, both in iodized salt, shellfish,and whatever other foods it occurs in naturally.

Funny because I just switched to iodized salt because I was concerned about his thyroid due to our family history. He has eczema, but he also gets sores on his face and neck that look blistery and are terribly itchy. He's had 3 or 4 of these patches over the last few months. He scratches them raw and then they get oozy and gross. He also just started getting little sores mostly on his back that look like little bites. There are a few on his legs too. Last year while on omnicef he broke out in blisters all over his body including his lips. We think it was an ellergic reaction to the omnicef.

I was concerned that the deamiated(SP?)gliadin was 7 and not 0 but someone commented the other day that it can bind or react to other things.

We are going for a brain and lower spine mri on monday to try and figure out the constipation, fatigue, and arm & leg pain.

mushroom Proficient

What does his doctor say about the sores/rash? If he were to biopsy the skin next to one of these active sores (preerably not one on the face :o ) and it were positive, that would represent a diagnosis of celiac disease. It is not uncommon for DH celiacs to test negative on the ordinary blood work or even intestinal biopsy.

Marlie Apprentice

Have you seen the DGP test results. I think the 7 is out of range (at least on the one we had done) and was considered a positive. You might want to look at the ranges and double check.

alexx6520 Newbie

According to Quest anything under 20 is negative but I've seen other stuff online that says 7-10 is suspicious. I dont know enough about it to even know if it's the same test. I also don't know if age is a factor. Who tests the rashes? Dermatologist, Gi, Allergist?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Usually a dermatologist, although many do not recognize the rash or know how to test for it :unsure: You have to take the biopsy sample from the skin immediately adjacent to the lesion, not of the lesion itself, because the antibodies are in the skin, not in the lesion. And you have to do a special celiac stain for it.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • 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):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • AlwaysLearning
      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
      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
      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
      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
      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.