Denial, Child with 3 weeks of symptoms...

[desirun]

I could use some encouragement on accepting that my 12 year old daughter may have Celiac Disease.  She has been a very healthy, athletic girl up until 3 weeks ago, with the exception of occasional headaches (maybe 1-2 a week).  Three weeks ago, at the end of a long day, she suddenly became very ill with nausea, abdominal cramps, tremors, racing heart, diarrhea, and was both hot and cold and sweaty. She did't have a temperature,  and after several bouts of diarrhea, she went to bed. The next morning, she woke up, ate breakfast and felt fine until late in the day when her belly started to ache. Ever since that day she has had on and off numbness in her hands and feet, abdominal cramps, diarrhea, and the feeling of weakness in her legs and a shaky feeling (low blood sugar type feeling). We saw our Pediatrician and a GI specialist. All of her inflammatory markers, blood counts, white blood cells, and electrolytes came back normal. Stool panels so far are negative. Yesterday the GI MD called and told me her TTG is 46.3, normal is less than 15.  She is recommending an endoscopy to confirm Celiac and said the TTG is 90% accurate in diagnosing Celiac Disease. 

I feel like this is a false positive. My kid has only been sick for 3 weeks. The GI said there aren't false positives and the TTG is only specific to Celiac Disease. 

Has anyone else had a child with sudden onset?

Completely in denial........

[Ennis-TX]

Celiac can be dormant for years, and suddenly come up. It is normally genetic, and if any others in your family have suffered from any of the symptoms in the past this could be a sign. There are over 200 different symptoms for this disease and it varys from person to person. I grew up with my symptoms slowly showing up, nothing major. In about Jr.High I started being very fatigued and tired all the time randomly throwing up developed lactose intolerance. I was having to live off energy drinks to try to stay awake and active in HS. Still vomiting on some meals, constipation set in and it was normal for me to go once every 5-11days (some develop C some D for the bowl issues). It was not until later when I did something stupid and shocked my immune system that my symptoms changed to neurological with gluten ataxia causing numbness, brain fog, confusion, that I started trying it figure it out. Took a while but we finally found out it was celiac disease and then all the little things sorta came together. 

We have many members here who had NO symptoms for years then something happened to shock the immune system or it was just spontaneous and came up. The gene again can be dormant for years and even stay dormant for a lifetime.

I would suggest talking to your doctor getting a FULL celiac panel before going gluten-free and if you want you can post the results here. A endoscope and multiple biopsy is the standard check for celiac where they look for villi damage in the small intestine caused by the disease. NOTE you have to be eating gluten daily for the testing to work, at least half a slice of bread a day is suggest. Some say now 1-2 slices of bread a day. You only mentioned the TTG but there are several others that are normally checked for diagnosis.

If she does have celiac then dealing with it is simple and she is lucky you caught it early on before other symptoms and food intolerance issues came up. Unlike other AI disease the trigger for celiac is gluten in even trace amounts and cross contamination. Removing gluten foods, condiments, products from the living environment and cooking all of ones meals in a gluten free environment leads to a healthy life, and disappearance of symptoms on a road to healing. This community here on the forums is very supportive and can give tons of tips on living life with this disease. If you want you can go ahead and read the newbie 101 section and I can post a list of gluten-free food options so you can see there are pretty much gluten-free versions of the normal staples, your just basically changing brands and having to be careful and read all ingredients.

For now stay on gluten til the testing is done.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

[tessa25]

 

... Yesterday the GI MD called and told me her TTG is 46.3, normal is less than 15.  She is recommending an endoscopy to confirm Celiac and said the TTG is 90% accurate in diagnosing Celiac Disease. 

I feel like this is a false positive. My kid has only been sick for 3 weeks. The GI said there aren't false positives and the TTG is only specific to Celiac Disease. 

Has anyone else had a child with sudden onset?

It only takes one positive on a celiac test to lead to an endoscopy/biopsies to verify a celiac diagnosis. That number is very high. Your GI is correct.

My only symptom was slight nausea for a few months. Would have known sooner if I'd made the appointment sooner.

[cyclinglady]

I am sorry that you are struggling with this possible diagnosis.  I have a 16 year old but she has tested negative so far even though she is symptom free.  Autoimmune diseases run rampant on both sides of  the family, so her risk is great.  

Celiac disease can be silent.  Symptoms can wax and wane.  The good news is that it is something that can be managed by a dietary change.  How lucky is that?  

Building strong bones is critical when hitting her teen years.  You have a chance to prevent so many issues outside of the GI tract that are impacted by celiac disease.  

Come back here for support for yourself and your daughter.  You are not alone!  We are here to help each other.  

Hugs! 

[desirun]

4 hours ago, Ennis_TX said:

 

 

[desirun]

4 hours ago, Ennis_TX said:

 

 

[desirun]

Ennis-TX-

Thank you! This is great information. It had to be horrible being so sick before your diagnosis. I just can't imagine.  I hope you are much better now.

I'm trying to figure out if I should suggest any other tests. So far she's had CBC, chemistries, thyroid, stool studies (c-diff, ova and parasites, and lactoferrin), sed rate, albumin, and CRP-all normal. Her IGA Quantitative was normal 238 (range 58-358). Her TTG IGA was high 46.3. We are going for HLA genetic typing today, partly because I am in denial, and also checking vitamin levels (Iron, Ferritin, TIBC, Vit. D, B12, Zinc, and Folate). Endoscopy is scheduled for next week Friday.

I can't wrap my head around the IgG and DGGL/Gliadin. From what I understand this gives more of a snapshot of chronic inflammation from celiac and length of disease and  perhaps not necessary if the TTG IGA is high, and the quantitative IGA normal?

Thank you!

Desiree

[desirun]

 

I am sorry that you are struggling with this possible diagnosis.  I have a 16 year old but she has tested negative so far even though she is symptom free.  Autoimmune diseases run rampant on both sides of  the family, so her risk is great.  

Celiac disease can be silent.  Symptoms can wax and wane.  The good news is that it is something that can be managed by a dietary change.  How lucky is that?  

Building strong bones is critical when hitting her teen years.  You have a chance to prevent so many issues outside of the GI tract that are impacted by celiac disease.  

Come back here for support for yourself and your daughter.  You are not alone!  We are here to help each other.  

Hugs! 

Thank you! And thank you for the air hug, I need it!