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DJCBFM

newbie diagnosed mom - testing 8 yr old now

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hi, I was diagnosed with celiac on june 9th, through a positive blood test.  I got the news as I was packing to go out of town for a trade show. We then had a death in family so I am just now wrapping my head around this life changing event for myself. My sister stumbled into the celiac diagnosis days before i did. We were both seeing doctors for different celiac symptoms unaware of the other's path. Our cousin is celiac. Once my sister and I came back positive, our mother was blood tested and she is positive as well. My mother and sister have scopes later this summer. 

 

I am now 6 days into my new gluten-free life. As soon as I tested positive I brought my eldest daughter in for testing. She has complained about an upset tummy for years, we have tried lactose elimination diet in her last summer. The signs she shows: diarrhea, tummy aches, rash (small and doesn't look like some i've seen online), low energy. Her natural food preferences have always avoided sandwiches, fast food, cow's milk, not really a fan of cereal, etc etc. Does any of this sound familiar to other parents? I looked at her blood test results friday and we have the follow up with our doctor today. I can tell she isn't positive on the blood test. Her tissue transglutaminase AB IGA was only a 1 (greater than 4 is a positive). Any advice? Of course I'll know what my awesome doctor says later this afternoon but I would love to hear from seasoned parents. 

 

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Before going gluten-free I would opt for the biopsy, for both of you. Your daughter may look good on the blood test, but still might be celiac. Tissue Transglutaminase test is merely an indication - not proof of anything, especially if it shows a low number. Biopsy is the only definitive test, and you need to be consuming gluten for at least 6 weeks prior to a biopsy for them to get a good diagnosis. At least that is what I have read. If you have been gluten-free you may not show any damage in the biopsy. This often leads people to think they don't have celiac, or that they have been "cured" or they no longer have celiac. This could not be further from the truth.

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Not all Celiacs tests positive to the TTg (like me) even on follow-up testing.  You might consider asking for a complete celiac panel, especially with your family history and the fact that she is a kid.  Often the DGP tests are better for small children (Google it).  Make sure her diet is full of gluten.  At least 1 to slices of bread.  It sounds like she has been gluten light and that can affect the tests. 

My kid is 15.  She'll be tested (full panel) every few years even if she is not displaying any symptoms.  So far, she does not have celiac disease.  Remember, celiac disease can develop at anytime.  

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I didn't know I had replies! I thought I'd get  notifications. After our appointment on Monday my doctor said to just have her go gluten-free and see how she feels in a month. ? I emailed him and called his clinic this AM (we live in a small town so I know him. Our daughters are same age) . I want more testing done. I want to know FOR SURE. This is the rest of her life, so I want her to have the security of knowing the degree of her diagnosis. She has enamel issues, which I just read about yesterday, and has presented rashes recently. I saw a new rash on her shoulders yesterday. My mother's instinct is telling me she is celiac and I want to confirm that through science. Googling DGP right now....

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2 hours ago, DJCBFM said:

I didn't know I had replies! I thought I'd get  notifications. After our appointment on Monday my doctor said to just have her go gluten-free and see how she feels in a month. ? I emailed him and called his clinic this AM (we live in a small town so I know him. Our daughters are same age) . I want more testing done. I want to know FOR SURE. This is the rest of her life, so I want her to have the security of knowing the degree of her diagnosis. She has enamel issues, which I just read about yesterday, and has presented rashes recently. I saw a new rash on her shoulders yesterday. My mother's instinct is telling me she is celiac and I want to confirm that through science. Googling DGP right now....

I think you need to go to your profile and enable the notifications.

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This is the full serum panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

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Thank you. I am overwhelmed with information. Between figuring out this new life for me and working to diagnose my kid, I'm a little saturated with information. I appreciate this list and I'll take it to my doc next week to re-test my kid. 

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18 hours ago, kareng said:

I think you need to go to your profile and enable the notifications.

Thanks. I had notifications on but didn't have "email notification" enabled. I need that level of notification. Until I become a celiac forum troll, which I could see happening. ?

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4 hours ago, DJCBFM said:

Thank you. I am overwhelmed with information. Between figuring out this new life for me and working to diagnose my kid, I'm a little saturated with information. I appreciate this list and I'll take it to my doc next week to re-test my kid. 

You're welcome! I know you're overwhelmed right now. I don't think there's a single one of us who wasn't in the beginning. I recall all out panic and a plethora of information muddling up my mind not to mention the brain fogged mind and unbelievable fatigue that existed from gluten. I can promise you it gets better!!!! LOTS better, but it does take time.

We're here to help. Ask away. If you're too overwhelmed to process info. then just say so & ask us to help you out by spelling it out in terms you can understand. I remember times I just couldn't seem to understand something very simple and the good people here would explain it so I could understand.

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On 6/20/2016 at 3:40 PM, scdurs said:

Before going gluten-free I would opt for the biopsy, for both of you. Your daughter may look good on the blood test, but still might be celiac. Tissue Transglutaminase test is merely an indication - not proof of anything, especially if it shows a low number. Biopsy is the only definitive test, and you need to be consuming gluten for at least 6 weeks prior to a biopsy for them to get a good diagnosis. At least that is what I have read. If you have been gluten-free you may not show any damage in the biopsy. This often leads people to think they don't have celiac, or that they have been "cured" or they no longer have celiac. This could not be further from the truth.

Actually, for adults, this is not true.  If you have a full blood panel and test positive on the IgA/tTg and the EMA, that is a slam dunk for Celiac and no biopsy is needed....unless you want to have one.  There is also the criteria that is used in adults if biopsy is not possible or wanted.

http://www.ncbi.nlm.nih.gov/pubmed/20670718

This rule does not apply to children, although in future, common sense may prevail and they will be included also. Or, they will come up with even better ways to test accurately and the biopsy will not be needed in the vast majority of cases.

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On June 23, 2016 at 1:25 PM, Gemini said:

Actually, for adults, this is not true.  If you have a full blood panel and test positive on the IgA/tTg and the EMA, that is a slam dunk for Celiac and no biopsy is needed....unless you want to have one.  There is also the criteria that is used in adults if biopsy is not possible or wanted.

http://www.ncbi.nlm.nih.gov/pubmed/20670718

This rule does not apply to children, although in future, common sense may prevail and they will be included also. Or, they will come up with even better ways to test accurately and the biopsy will not be needed in the vast majority of cases.

good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 

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No judgement here on your situation. Unfortunately it's not uncommon (sadly).  

A full blood panel isn't the only step for diagnosis in kids. For a variety of reasons there really should be a biopsy should the blood work warrant it. While NO procedure on your kiddo is "minor", an upper GI is relatively easy for the kiddo (I think all the waiting for the parents was the hardest for us!)  There is no open wound, minimal risk of infection and so on.  DS was 3 1/2 when he had his last endo and again, harder for me. 

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