Jump to content
  • 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):

Can You Self Test With Iodine?


BarbaQ

Recommended Posts

BarbaQ Rookie

My 23 month old son recently had a positive gluten stool test from enterolab, however, when we took it to our family doctor, she had never heard of such a test. It seems our medical world does not accept this result and we are waiting for an appointment (5 months) with a gastroenterologist. There seems to be a lot of doubt in the mainstream medical model regarding the accuracy and validity of this test. Unfortunately, this leaves us in limbo.

He has had facial eczema (or possibly DH), for the last 11 to 12 months. This is his only symptom. Really, he is too young to tell us anything. He basically has not slept consistently through the night and we suspect that it may be due to stomach upset. The eczema is only around his mouth. It does not go away even with cortisone. We have been gluten free for about 2 months. The doctor would like us to reintroduce gluten prior to the specialist appointment in January so that the blood work can be accurate. In the meantime, I was wondering if I could just test him myself with iodine? If the test is positive, then I may choose not to reintroduce the gluten, and instead request a skin biopsy.

Has anyone ever tried self testing with iodine? What is the procedure? Is it safe?

Any advice is apprecaited.

Thanks

Barb :unsure:


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

I'm not sure why you would think testing for iodine deficiency would mean your child has celiac disease. I thought that test was for hypothyrodism. I don't know if it's a safe test for a child. You dab a 2" circle of iodine on soft skin, such as the inside of your leg, or your upper arm, and if the iodine is absorbed in less then an hour, then you are iodine deficient. Some doctors do not believe this is a true test though. Iodine always disappears quickly on me, but they say there is no problem with my thyroid, and I have double DQ1 genes, so some doctors do not believe I am celiac either.

I truly do not think this test will help you. Sorry.

BarbaQ Rookie

Hello again

My understanding is that testing with iodine causes a DH blister to form. This is done so that doctors can bring on a blister when looking to take a biopsy. If the blister forms, then more than likely, it is DH. Do I have this all wrong? :unsure:

Maybe I'm jumping the gun. I am assuming that the blood and small intestine biopsy will be negative given my son's young age (22 months) and this being his only symptom. (blisters on the face / eczema). I have read that it is more likely for people with DH to have negative blood and biopsy results.

Thanks. Any advice? Anyone ever try this?

Barb

Tara Lynn Newbie

I don't know about the iodine test, but I know it took more than 2 months of being gluten-free before my rash completely went away. I found that I was inadvertently eating things that were processed in contaminated facilities and had to eliminate those. I also had to get very nitpicky about avoiding possible cross-contamination on things like countertops and peanut butter jars. But after about 4 months, my rash (which I'd had for THIRTEEN years and which had also been misdiagnosed as eczema) finally disappeared. It has stayed gone as long as I stay off gluten.

ravenwoodglass Mentor
Hello again

My understanding is that testing with iodine causes a DH blister to form. This is done so that doctors can bring on a blister when looking to take a biopsy. If the blister forms, then more than likely, it is DH. Do I have this all wrong? :unsure:

Maybe I'm jumping the gun. I am assuming that the blood and small intestine biopsy will be negative given my son's young age (22 months) and this being his only symptom. (blisters on the face / eczema). I have read that it is more likely for people with DH to have negative blood and biopsy results.

Thanks. Any advice? Anyone ever try this?

Barb

Your right if he has DH. There are many skin problems associated with celiac that aren't. The fact that his skin issues have resolved is significant whether it is DH or another issue. You are right to be concerned about a false negative on a child his age. They are even more common than with adults.

The truest test for the need of the diet is the diet itself. I do understand your wanting a doctor verified diagnosis on a child as young as he is, it makes things easier in school. Did your doctor make note that his skin issues cleared? Could he also note that they came back when gluten was introduced? Some doctors will give a diagnosis of gluten intolerance with dietary response and that should be enough to satisfy 'proof' for schools and day care.

Archived

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

  • 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. - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      5

      Celiac flare years after diagnosis

    2. - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
      2

      Skin issues

    3. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      5

      Celiac flare years after diagnosis

    4. - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      5

      Celiac flare years after diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,048
    • Most Online (within 30 mins)
      10,442

    nvdw
    Newest Member
    nvdw
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
×
×
  • Create New...