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):

Opinions on screening results

Tg1998

Recommended Posts

Tg1998 Newbie
Tg1998
Posted

I’m hoping you all can give me your opinions on my daughter’s screening results and symptoms. 

I took her to the pediatrician for yet another round of thyroid testing as she has “looked thyroid “ for years according to any doctor we see for whatever reason. Again, the numbers came back “normal” but I had also asked if we could test her for gluten problems.

Her symptoms that brought us in to the doctor are progressive joint and muscle pain, brain fog or as she calls it “empty brain”, constant hunger and weight gain. She has a diagnosis of ADD and I don’t doubt that diagnosis but ADD is not progressive and she has been having increasing problems with memory and processing. She also has vitiligo and is followed by a cardiologist for tachycardia. She has asthma as well.

The only number to come back positive on the celiac panel was her TTG IgG (it was 12 with the normal being under 5). She is not Iga deficient. The results also showed vitamin D deficiency (20 when above 30 is considered normal) Her ferritin was considered “normal” at 25 with 20-200 being considered normal so I think that number is a little close.

The doctor said she wasn’t sure of what to make of these results so she called a GI doctor. His response was,  based on the fact that there is no family history, she doesn’t have GI symptoms and she was only positive on the TTG IgG, she does not have celiac and does not need to see GI or go gluten free. Our pediatrician wants to send us to a rheumatologist for anti inflammatory medication (her ana and Rh factor were negative) and a neuropsychologist to look into adhd meds. She also suggested perhaps my daughter is just depressed. While she is frustrated with her symptoms, she’s actually very happy. The doctor also suggested we try a gluten free diet for two weeks to see how she feels.

Does anybody have any thoughts on this? Anyone have a similar experience, similar symptoms?

Thanks!

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
2 minutes ago, Tg1998 said:

I’m hoping you all can give me your opinions on my daughter’s screening results and symptoms. 

I took her to the pediatrician for yet another round of thyroid testing as she has “looked thyroid “ for years according to any doctor we see for whatever reason. Again, the numbers came back “normal” but I had also asked if we could test her for gluten problems.

Her symptoms that brought us in to the doctor are progressive joint and muscle pain, brain fog or as she calls it “empty brain”, constant hunger and weight gain. She has a diagnosis of ADD and I don’t doubt that diagnosis but ADD is not progressive and she has been having increasing problems with memory and processing. She also has vitiligo and is followed by a cardiologist for tachycardia. She has asthma as well.

The only number to come back positive on the celiac panel was her TTG IgG (it was 12 with the normal being under 5). She is not Iga deficient. The results also showed vitamin D deficiency (20 when above 30 is considered normal) Her ferritin was considered “normal” at 25 with 20-200 being considered normal so I think that number is a little close.

The doctor said she wasn’t sure of what to make of these results so she called a GI doctor. His response was,  based on the fact that there is no family history, she doesn’t have GI symptoms and she was only positive on the TTG IgG, she does not have celiac and does not need to see GI or go gluten free. Our pediatrician wants to send us to a rheumatologist for anti inflammatory medication (her ana and Rh factor were negative) and a neuropsychologist to look into adhd meds. She also suggested perhaps my daughter is just depressed. While she is frustrated with her symptoms, she’s actually very happy. The doctor also suggested we try a gluten free diet for two weeks to see how she feels.

Does anybody have any thoughts on this? Anyone have a similar experience, similar symptoms?

Thanks!

 

Welcome!

Did your doctor also order the DGP and EMA celiac tests?  Not all celiacs test positive on the TTG.  You get kids seem to do better with the DGP IgA.

Celiac disease should not be dismissed simply because she doesn’t have GI symptoms.  I did not.  Just anemia and I had some pretty severe damage.  

 

tessa25 Rising Star
tessa25
Posted

It only takes a positive on one celiac test to result in an endoscopy/biopsies being done by a GI. She has one positive so if it were me I'd find a GI to do an endoscopy/biopsies.

Tg1998 Newbie
Tg1998
Posted
  • Author
On 5/6/2018 at 4:21 PM, cyclinglady said:

Welcome!

Did your doctor also order the DGP and EMA celiac tests?  Not all celiacs test positive on the TTG.  You get kids seem to do better with the DGP IgA.

Celiac disease should not be dismissed simply because she doesn’t have GI symptoms.  I did not.  Just anemia and I had some pretty severe damage.  

 

The other tests were:

Gliadin IgA 2 Negative 

Gliadin IgG 1 Negative 

She’s on day 6 of a gluten free diet and is already saying her memory seems clearer. My husband and I can see it a little too, she can tell us more details about her day and can find things! I’m so hopeful that this will help her. I hope it will begin to ease her joint pain soon as well.

 

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...