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Celiac Suspicion

Carlinag123
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Carlinag123 Newbie
Carlinag123
Posted

Hi!

I have suspected my daughter had celiac since she was very young. She would get frequent diarrhea around 1-2 years old so I put her on a gluten free diet ( I was already gluten free because my neurologist recommended it and it helped me enormously) I had my daughter tested for celiac and it came back negative so she went back to eating gluten. I did not know back then that being gluten free could skew the results. She is now 6 years old and has been complaining about nearly constant stomach pain for quite some time.  She also complains of itchy skin all the time and is constipated frequently. Has anyone else had a similar experience with a negative blood test but seemingly related symptoms?

 Thank you!

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cyclinglady Grand Master
cyclinglady
Posted

She might have been gluten light or she might have been too young to have developed antibodies.  Testing kids under three is tricky.  Often the DGP tests are better compared to the TTG when dealing with kids.   Was her Immunoglobulin A results in the normal range?  If she is Immunoglobulin A (IgA) deficient, any IgA related celiac tests were be invalid.  

How much gluten does she consume daily now?  

I had my kid tested twice.  Each time it was after summer in order to insure she would have antibodies since our house is gluten free and less disruption to her school schedule (she was much older).   She consumed gluten daily for three months and I insisted on the complete panel as I test positive to only the DGP IgA.  I was also not going to make the effort and not get every single celiac blood test!  

Know that some celiacs do not test positive on the celiac blood panel.  If negative, your daughter should be evaluated by a GI.  I could have sworn my niece had celiac disease.  At age 17, she was diagnosed with Crohn’s.  Celiac disease was firmly rule out (blood tests and scopes).  

Learn about a gluten challenge: 

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

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    • trents
      symptoms.

      By trents · Posted

      You might look into wearing an N95 mask when others are creating baked goods with wheat flour in your environment.
    • Rebeccaj
      symptoms.

      By Rebeccaj · Posted

      @trents thank you for that information. My parents feel that cooking flour in toaster isn't a thing as its already cooked product before made? but Airbourne particles is my fear. Like I have had symptoms from 6 meters away had to leave massive migraine. 
    • knitty kitty
      symptoms.

      By knitty kitty · Posted

      Yes, except for the most sensitive, cross contamination from airborne gluten should be minimal. Highly sensitive people may have nutritional deficiencies.  Many times their bodies are in a highly inflamed state from Celiac, with high levels of histamine and homocysteine.  Vitamins are needed to break down histamine released from immune cells like mast cells that get over stimulated and produce histamine at the least provocation as part of the immune response to gluten. This can last even after gluten exposure is ended.  Thiamine supplementation helps calm the mast cells.  Vitamin D helps calm the immune system.  Other B vitamins and minerals are needed to correct the nutritional deficiencies that developed while the villi were damaged and not able to absorb nutrients.  The villi need vitamins and minerals to repair themselves and grow new villi. Focus on eating a nutritional dense, low inflammation diet, like the Autoimmune Protocol Diet, and supplementing to correct dietary deficiencies.  Once your body has the vitamins and minerals needed, the body can begin healing itself.  You can have nutritional deficiencies even if blood tests say you have "normal" blood levels of vitamins.  Blood is a transport system carrying vitamins from the digestive system to organs and tissues.  Vitamins are used inside cells where they cannot be measured.   Please discuss with your doctor and dietician supplementing vitamins and minerals while trying to heal.  
    • trents
      symptoms.

      By trents · Posted

      Should not be a problem except for the most sensitive celiacs. The amount of gluten that would get in the air from cooking alone has got to be miniscule. I would be more concerned about cross contamination happening in other ways in a living environment where others are preparing and consuming gluten-containing foods. Thinks like shared cooking surfaces and countertops. And what about that toaster you mentioned?
    • knitty kitty
      Newly Diagnosed

      By knitty kitty · Posted

      Hello, @NCalvo822, Blood tests for Celiac Disease test for antibodies our bodies make in response to gluten exposure.  These Tg IgA 2 antibodies mistakenly attack our own bodies, causing problems in organs and tissues other than just the digestive tract.  Joints can ache, thyroid problems or the pancreas can develop.  Ataxia is just one of over two hundred symptoms of Celiac Disease. Some people with Celiac Disease also make tTg IgA 6 antibodies in response to gluten exposure.  The tTg IgA 6 antibodies attack the brain, causing ataxia.  These tTg IgA 6 antibodies are also found in people with Parkinson's disease, though they may not have Celiac Disease.  First degree relatives (parents, siblings, children) of those diagnosed with Celiac should be tested as well.  Celiac is genetic.  Your mom and sister should be tested for Celiac, too!   Definitely a good idea to keep to a gluten free diet.  
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