Daughter waiting for appointment

[jjiillee]

My daughter,17 was getting stomach pains off and on for months. Went to pediatrician, bloodwork came back showing TTG-IGA 5.3 weak positive. Told to follow up with gastroenterology, continue to eat gluten. Can’t get appoint until end of Jan (we are on waitlist also), called back because she was still getting pains and nurse said to let her try to go gluten free for a few weeks and see if she feels better. She does feel better. My question is should I let her stay gluten free until the end of January and see what the Gastro says? I know she will have to be eating gluten before she has any further testing, but that is likely months away at this point.

 

[Scott Adams]

It is fine to keep her gluten-free at this point, and she can do a gluten challenge if you decide to get a formal diagnosis and do the endoscopy. You did not mention the reference range for her test result, as they differ depending on the lab, but the fact that she had a positive test AND feel better when avoiding gluten, make it very likely that she has celiac disease.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

  

 

[trents]

To be certain that the "gluten challenge" results in valid testing down the road, I would plan on having your daughter restart gluten consumption four weeks prior to the blood draw or the endoscopy/biopsy (whichever the GI doc wants to go for first) to the tune of 4-6 slices of wheat bread (approximately 10g of gluten) daily. But be aware that once you withdraw gluten from the diet for a significant period of time, going back on it may produce more sever symptoms. We tend to lose whatever tolerance to gluten we may have had while consuming it regularly.

[Wheatwacked]

Hi @jjiillee,

Call the doctors office and tell them about the improvement with gluten free diet.

Diagnosing Celiac Disease is as much an art as it is a science.  Many go 10 years of suffering various symptoms before finally being diagnosed.Most celiacs have vitamin deficiency, it is part of the diagnosis.  Especially vitamin D.  Ask for her to be checked.

In the long run, showing such improvement she would do best eating gluten free regardless.  She has positive blood and responds well to gluten free.  At the same time you and your family should consider GFD, even if you don't think you have symptoms.  About 40% if first degree relatives of a diagnosed celiac have undiagnosed celiac.  There are 200 non classical symptoms other than gastrointestinal.  In 1976 my son was diagnosed when he was weaned and his doctor recommended we all try.  In 2014 I was very sick and finally started GFD.  Improvement was quick, many lifelong symptoms I had been told were normal went away and I've spent the last 10 years undoing the damage.  Shouda, Coulda, Woulda.  

Are You Confused About Your Celiac Disease Lab Results?

 

 

[jjiillee]

Thanks for the replies. They had a cancellation and now she can se the gastroenterologist tomorrow! 

[trents]

Fantastic! Be sure to ask about continuing gluten until the procedure should the GI doc want to do an endoscopy/biopsy. He/she may also want to repeat antibody testing.

[Scott Adams]

15 hours ago, jjiillee said:

Thanks for the replies. They had a cancellation and now she can se the gastroenterologist tomorrow! 

Let us know how things go.

[jjiillee]

Her appointment ended up getting canceled for today. So now we have to wait until Dec 3.

[jjiillee]

She finally has her appointment today. They said in their opinion it’s likely celiac. But repeated the bloodwork today. Her frost bloodwork was weak positive 5.3 (4-10 is a weak positive) Dr wanted her own labs.
And they will be calling us to schedule the endoscopy. 
They told her to keep Eating gluten. She has been eating is again for the last couple weeks. 

[Scott Adams]

Yes, she should be eating lots of gluten daily...4 slices of wheat bread would be ideal for the screenings.

[jjiillee]

My daughter had her endoscopy today. The Dr said it looked normal but she has two small ulcers. The Dr took 16 biopsies, ahold have the results in a few days. She told her to keep eating gluten until we get the biopsy results unless it’s bothering her stomach too much. 
has anyone else had ulcers with celiac? 

[Scott Adams]

I had what was termed "lesions," and normally ulcers are in the stomach, rather than the small intestines. I'm not sure why they would want you to have her continue to eat gluten, since she had a positive blood test, but as her doctor said, if she is uncomfortable and having symptoms why not have her go gluten-free at this point? If her symptoms improve, it would be another indicator that she has celiac disease and/or gluten sensitivity.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[trents]

Duodenal ulcers are not uncommon either and often result from H.Pylori infections.

https://www.healthdirect.gov.au/duodenal-ulcer

[jjiillee]

The ulcers are prepyloric ulcers. Not sure if that makes any difference. 

[jjiillee]

I got her results in the app but waiting for call from her doctor. Not sure what it means but maybe not celiac since villi are normal?? 

FINAL DIAGNOSIS: Duodenal biopsy (#1): DUODENAL MUCOSA WITH NO SIGNIFICANT ABNORMALITY. NO SIGNIFICANT VILLUS BLUNTING NOR INCREASED INTRAEPITHELIAL LYMPHOCYTES. Duodenal bulb biopsy (#2): MILD ACUTE DUODENITIS WITH FOCAL FOVEOLAR METAPLASIA. NO SIGNIFICANT VILLUS BLUNTING NOR INCREASED INTRAEPITHELIAL LYMPHOCYTES Gastric antral biopsy (#3): MILD CHRONIC FOCALLY ACTIVE GASTRITIS. PENDING IMMUNOSTAIN FOR HELICOBACTER ORGANSIMS (TO BE REORTED IN AN ADDENDUM). Gastric body biopsy (#4): GASTRIC OXYNTIC MUCOSA WITH NO SIGNIFICANT ABNORMALITY. Esophageal biopsy, distal (#5): SQUAMOUS MUCOSA WITH NO SIGNIFICANT ABNORMALITY. Esophageal biopsy, mid (#6): SQUAMOUS MUCOSA WITH NO SIGNIFICANT ABNORMALITY

[trents]

Probably NCGS then and there is also the possibility of an H. Pylori infection.

[Scott Adams]

Given that she had a weak positive tTg-IgA blood test for celiac disease, and she gets symptom relief from a gluten-free diet, she could be in a pre-celiac disease stage, and might develop full blown celiac disease (villi damage) if she continues to eat gluten. At this point, even though her biopsy is negative, she may want to stay gluten-free. As @trents mentioned, she likely has NCGS. 

[jjiillee]

Her Dr gave her meds for the ulcers and recommend the genetic blood test to rule out celiac. Got those results and the hla-dq2 is positive the hla-dq8 is negative. So I’m not sure what this all means. Waiting to hear from the Dr again. She has been eating gluten and did say she got bad stomach pain again the other day but it hasn’t happened in a few weeks so I’m not sure if it’s from gluten or the ulcers.

[trents]

She carries one of the two primary genes that indicate the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. So, the gene test cannot be used to diagnose celiac disease but it can be used as a rule out measure. Having either one of the genes provides the potential for developing celiac disease with the HLADQ2, in my understanding, providing the strongest potential of the two while having both genes provides an even stronger potential.

What meds did the physician put her on for the ulcers?

Edited January 11, 2025 by trents