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Pre-Diagnoses Questions

My3LittleEs

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My3LittleEs Newbie
My3LittleEs
Posted

Hi, My name is Lori and I am trying to figure out what is going on with my 3yr old daughter, and I am of course driving myself nuts researching while I wait for her test results. I am going to write up a list of her symptoms and see if any of this sounds familiar to anyone. I was led here by multiple internet searches that keep steering me towards Celiac disease. Thank you in advance for your help. Even if this does not sound like Celiac can anyone point me in another direction?

 

 >The main symptom that triggered the concern has been the loss of 4 baby teeth with 2 more that are currently loose. She will not be 4 until almost June and she has lost all of them since Sept 2013. The teeth do not show any signs of decay. They just get loose and fall out. She lost all 4 of them with in 5 months. 

 

>2nd symptom is chronic stomach pain. She complains of stomach main every day and has for a couple of months. She is currently taking Zantac to see if that helps but so far it is not. She has occasional diarrhea but nothing that was causing me real concern.  

>She has asthma. She was diagnosed over a year ago and other than a couple of months here and there she is never really under control. She has had basic allergy testing which came back positive for dogs, dust mites and mold. 

>She has not gained hardly any weight in close to 2 years. On the other hand she is tall for her age but very skinny. Just no weight gain to speak of. 

>She is very clumsy. She can fall down leaning against a wall. She has always been accident prone. 

That is everything I can think of for now. I feel like I am missing something, I will add anything I think of. We are currently waiting on her blood work, urinalysis etc. We are also being told to see a Hematologist.

The reason I am here is because when I search for early tooth loss and other combinations of symptoms Celiac keeps popping up. 

Last Friday her pediatrician ordered the following tests:

Complete Blood Count with Diff

Comprehensive Metabolic Panel

Thyroid Stimulating Hormone

Urinalysis Microscopic if Indicated

Vitamin D, 25 Hydroxy Total

XRay Bone Age Study (Xray of her Left hand)

Calcium/ Creatinine Ratio Random

Do any of these symptoms really fit with Celiac Disease? Does any of this sound familiar. Thank you in advance for your help. :)

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GottaSki Mentor
GottaSki
Posted

Welcome Lori and little one!

 

Yes, all of those symptoms can be associated with Celiac Disease and she should have a complete celiac antibody panel.

 

Request written copies of all her labs.

 

If gluten is an issue you may see low nutrients in the CMP, Calcium or D panels.  Sometimes there are indicators on the CBC as well...but not always.

 

Hang in there Mom and keep asking questions!

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Welcome to the Forum!

 

I agree with GottaSki that your daughter's symptoms defininitely fit Celiac and she should have the full panel of blood work done.  And while I don't have kids myself, I just wanted to add that I believe testing in young children can be trickier than it is in adults because they may not be old enough to have produced enough antibodies for them to show up on the tests in the numbers that would appear for an adult.  So even if the tests come back "inconclusive" or a "weak positive", you may want to ask that the doctor do the endoscopy to check for villi damage just to be sure.

 

Good  luck and let us know how you make out.

My3LittleEs Newbie
My3LittleEs
Posted
  • Author

Thank you both. I also want to add that she has had a red rash on her buttocks all winter that I thought was dry skin. Now I see that is another symptom. I will be glad to be on the other side of this testing so that we can get started on whatever needs to be done. 

bartfull Rising Star
bartfull
Posted

These are the tests you should ask for:

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

 

There are also tests for the genes involved, although not everyone who has the genes gets celiac, and some people WITHOUT the genes do.

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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
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      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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