11yo tested "mild positive" for Celiac...

[pandapotato]

Hi All, my 11yo daughter has had ongoing stomach issues her whole life. When she was younger/in day care, I'd sometimes get 2 or 3 calls in a month that she had just randomly thrown up. She had pretty consistent constipation (which appeared to be causing the nausea). It got to where whenever we were out to eat we'd joke that she was doing her usual "tour of the bathroom" because she'd disappear for awhile with an upset stomach/constipated feeling. Several vacations have gone awry when she was feeling nauseous or constipated. At one point she did get an X-ray of her intenstines/stomach and it confirmed she was "backed up" so to speak. In hindsight, I'm pretty irritated that the doctors always blew off my concerns, or "prescribed" Maalox and sent us on our way. At her 11yo check-up, I insisted on bloodwork, and just got a call that she tested "mild positive" for celiac. We'll have a follow up with a pediatric GI doctor, but I'm wondering... has anyone else had a test show as "mild?"  That's the part that is throwing me off.... I'm not afraid to go full blown gluten-free, and in fact a diagnosis would actually come as a relief because it sucks seeing her discomfort. I'd rather DO something about it. 

[cyclinglady]

I do not know why they use the word “mild”. A positive is a positive.  It is like saying you are mildly pregnant!  You are either pregnant or not.  

I receive a “mild” positive because I had only one positive on the entire celiac panel.  Yet, my biopsies revealed some pretty severe damage.  A low result does not necessarily indicate low damage and a high result does not necessarily mean high damage.  It is one of the reasons a biopsy is still the “gold standard” in diagnosing celiac disease.    Also, a mild TTG result could mean another illness and the endoscopy/biopsies can reveal other issues or even concurrent issues.  

She must continue to eat gluten daily or else the biopsies might be negative.  ALL celiac testing (except genetic) requires the patient to be on a normal gluten diet.  

I am sorry that she is unwell.  Constipation is common with celiacs.  Hard to move things along when your villi is damaged.  

[Posterboy]

  On 8/16/2018 at 7:01 PM, pandapotato said:

Hi All, my 11yo daughter has had ongoing stomach issues her whole life. When she was younger/in day care, I'd sometimes get 2 or 3 calls in a month that she had just randomly thrown up. She had pretty consistent constipation (which appeared to be causing the nausea). It got to where whenever we were out to eat we'd joke that she was doing her usual "tour of the bathroom" because she'd disappear for awhile with an upset stomach/constipated feeling. Several vacations have gone awry when she was feeling nauseous or constipated. At one point she did get an X-ray of her intenstines/stomach and it confirmed she was "backed up" so to speak. In hindsight, I'm pretty irritated that the doctors always blew off my concerns, or "prescribed" Maalox and sent us on our way. At her 11yo check-up, I insisted on bloodwork, and just got a call that she tested "mild positive" for celiac. We'll have a follow up with a pediatric GI doctor, but I'm wondering... has anyone else had a test show as "mild?"  That's the part that is throwing me off.... I'm not afraid to go full blown gluten-free, and in fact a diagnosis would actually come as a relief because it sucks seeing her discomfort. I'd rather DO something about it. 

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Panda,

I had many of the same problems as a kid.

You might want to change over to Magnesium Citrate for the Constipation Maalox might be making it worse.

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For interrupting your full test results when you get them use this link research from the IJCD that talks about how to interrupt Tg2 antibody test results.

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As for the nausea/constipation they can be a sign of low stomach acid and a slow bowel transit.

You see if they are related by noting how well formed her stool is.

see this bing image comparing how firm the stool is (fiber works too) to bowel transit time.

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Here is a good  article on bowel transit times and how to test this constipation bowel transit issue at home in a self timed test.

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Also if bloating is common with the nausea trying observing how she does on CARBS.. . it is a common trigger for bloating.

See this thread that talks about bloating (and it has a lot of good links) about how to self test for low stomach acid.

I hope this is helpful.  There is more that I could say but this will get you started in the right direction if your daughter is struggling with low stomach acid and the doctors are not now looking at her stomach to see  how they are related to her lower GI problems.

In short digestion is a north/south process and what effects the stomach will also effect the small intestine soon enough.

Here is a quick google search that explains well digestion being a north south process.

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I like to thank of it this way.  I use analogies often to help others understand.

The stomach is the locomotive of this digestion (train) system we have running through our bodies and when the locomotive (stomach) jumps the track the other parts of the train (box cars, engine set, cargo, caboose) etc. get off track and even jump the track when a train wreck occurs but the locomotive (digestive engine) aka stomach jumped the track first or at least did in my case.

I had low stomach acid for years and years. .... see my celiac.com post about my experience with low stomach being undiagnosed/misidiagnosed for years and yearss.

And getting the locomotive (stomach) back on the tracks help the other parts fo the digestives system (lower GI and colon) get back on track too!

I must quit for now but  I hope this is helpful.

Good luck on your continued journey!  And I hope your daughter's digestion system gets back on the track to a healthy life soon!  And she can spend more time touring stops along the way in life.. . .and not just the rest stops of life.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Awol cast iron stomach]

Oh goodness- me. Yes, Yes, Yes as poster above said these are symptoms many of us had as kids. I lived in state of constipation that was suppose to be" just me" "normal". I finally found out what normal is over 38 years later.  2 weeks after starting a gluten-free diet I began to feel "normal" is. It was night and day. Oh the memories are never ending and sometimes the anger. Nausea, dizziness, constant light headedness etc. decades long. Now I know its called brain fog. I have vivid memories of throwing up long spaghetti noodles whole and undigested in my middle school years. 

"In hindsight, I'm pretty irritated that the doctors always blew off my concerns, or "prescribed" Maalox and sent us on our way" I understand completely I was given ex lax,  Metamucil, Miralax changed based on decade. My husband just reminded me I have to let all the past wrongs go. I am still angry. 

I am glad they tested her. As Cycling lady said consider her Celiac despite the "mild".  I was misdiagnosed IBS for decades, I am currently labeled NCGS, but I got CC in early July (fish from trusted store) and here I sit with DH still. (Now you see why I am so angry at this moment and time- yes I get DH and GI symptoms and then some.  DH has a mind of it's own. I have no idea why DH didn't show up during my challenge, but alas regardless of my various labels. My body has made it very clear not to eat gluten.

I am glad you got her the help she needs. It's ok to be angry. Let those feelings flow tears, journal, whatever you need. Her GI tract with healing and in time will be more "normal" than she ever knew. 

Best wishes. 

[Rebecca Kay]

The "mild" positive just means her numbers came back positive, but not outrageously high or as high as possible. Assuming she had the appropriate Celiac panel, her positive means she HAS Celiac disease. (I am a licensed laboratory technologist and also a mom to a son with Celiac). I also was quite relieved to have a clear diagnosis; my son's labs were strongly positive and his endoscopy was as well. We were really confused by his symptoms for a long time and then he lost 10 lbs in two months; he was experiencing delayed puberty. A trip to the endocrinologist led to the gastro and here we are today. A diagnosis is so much better than the unknown. He is doing much better, but understand it will take TIME. He felt better right away, but had total deficiencies in all enzymes that digest any starches (secondary to the Celiac). He got to the point where he felt sick no matter what he ate; that is NORMAL until the body starts making its own enzymes again. For a child that might take a year; adults often, longer. In the meantime, I got him some enzyme supplements to try and they have been very helpful. He is 6 mos, post-diagnosis, and has gained a few pounds. Most importantly, he is HUNGRY again, and able to eat. Still has reflux every now and again, but not losing weight anymore; you should request that her zinc, Vit D, B12, and ferritin levels be checked. We have been ever vigilant about cross-contamination, rarely eating out, getting him his own toaster at home, etc. Yes, I am tired, but trying to learn and keep up. lol  Enzymedica DigestSpectrum, papaya tablets, ginger mints from T Joe's, ginger tea are all in his tool bag.

[pandapotato]

Just wanted to say thank you to everyone. The dr did a second blood test a week later and scheduled the endoscopy/biopsy. Second blood test came in clearly higher than the first, and the biopsy confirmed celiac. 

[cyclinglady]

Wow!  I am glad you have a diagnosis.  Now, she can look forward to improved health.  

Consider a 504 plan to keep her safe at school.  Browse through the forum for advice.  Our Newbie thread located at the top of the “Coping” section is a good place to start.