Where can my son be getting gluten from?

[Momkaren]

I am new here, and apologize for this being so long!
 I need help! My son is 24. He has Down Syndrome, Autism and Moyamoya which is a brain disease. He was diagnosed many, many yrs ago with Celiac disease. It has been very hard to get him to a 100% gluten-free diet, but I believed I had accomplished it. My son also has had and still has tummy issues. Sometimes diarrhea, but the past 2 yrs has been constipation.

He is nonverbal and has a high tolerance for pain. Since last yr he will hold his belly and indicate it is bothering him at times. He is small for his age at 4ft 10” and 82lbs (he has lost weight , -4-5 lbs). He is in the bathroom quite often and he does have multiple bowel movements each week. 
 

A current X-ray shows he is moderate to severely backed up and probably has been for quite some time. Same thing happened last yr. Strangely the day after Christmas he had major diarrhea for over 14hrs and wound up in the emergency room with a stomach bug.  He lost 6lbs and nothing but clear liquid coming out of him. They gave him fluids and he seemed back to normal., but within 2 days he was holding his stomach again! 
 

He had blood work done this past week, Celiac panel. And his numbers are still indicating gluten. I am confused. Y all the different tests and have not spoken to his Dr yet. Here are the results.

 

Deamidated Gliadin Abs, IgA is 59 (normal should be 0-19)

Recombinant Tissue Transglutaminase AB, IGA is 7 (supposed weak positive)

t-Transglutaminase target IgA was 6 from other blood work last week. This has been 6 for the last 3 yrs

Endimysial Antibody IgA is and has been negative for the past 3 yrs.

My son does and always has had a very poor diet. I can not make him eat nutritious food, believe me we have been trying for years and years! He does not eat fruits nor veggies though I make him smoothies with fruit and it a hit or miss along with sneaking veggies in his mashed potatoes (also a hit or miss). He does eat chicken, ham and beef. 
 

Today I double checked every item of food, snacks, condiments, drinks even his toothpaste, shampoo, body wash and deodorant for gluten. I read the ingredients, i have 2 gluten-free scanner on my phone and looked up every item. 99%of packaging states item is gluten free except for his personal hygiene products. 
 

He is with me every day except Tuesday-Friday from 8:30am to 3:30 pm when he is at his day program. The staff is 100% fully aware he is not to have gluten. The program does not supply any food to participants. I pack my son’s lunch every day. 

What can I be doing wrong?? I am at a loss! 
 

Thanks for reading

 

[Scott Adams]

Welcome to the forum!

If he is getting gluten in his diet, and the evidence points that way, it seems like the most likely place would be at his day care program, but you did not mention whether or not your household is gluten-free. If there is regular gluten foods in your home, it's possible he could be sneaking some from time to time. When he's at his daycare does he eat with other kids who have gluten foods? If so, is it possible he trades foods with them?

In the past I had issues with my daughter who would cheat on her gluten-free diet so she could fit in with her high school and soccer friends. 

[Momkaren]

Hi Scott,

Thanks for replying. 
My son is in an adult day program for those with special needs. The program does not supply food. Everyone there is fully aware he is not allowed to have gluten. 
 

We are not a gluten free household. My son is the only one who eats gluten-free. He even has his own toaster, utensils, pots/pans, etc.

i know there is always a chance someone at his day program is giving him food with gluten. Though I have spoken to them many times about not doing so . I will be speaking to them again today when I pick him up.

I understand the possibility of him sneaking food at home. He  would have to be very quick about it since there is someone usually with him at all times at home due to him trying to open front door, not being aware of danger, etc.  If he is alone it is not for very long. He can be sneaky though! 
 

I will be putting locks or something similar on my cabinets except for the one that contains his food/snacks. I am waiting to hear from his Dr regarding his test results. 

[trents]

Is he consuming dairy? About 10% of celiacs react to the protein casein in dairy like they do the protein gluten in wheat/barley/rye. The structures are very similar.

[Momkaren]

Funny you should ask this. My son eats 2-4 slices of cheese which is gluten-free every day. He also drinks some Almond milk (about 8oz) a day. Every once in a while he will have a slice or 2 of gluten-free pizza. In prior years he would eat a whole personal size gluten-free pizza, but has not been wanting it for about 7 months now.

 

A friend of mine suggested a dairy allergy so I did stop dairy for a little over 4 weeks. At this point he had his appt with his GI Dr. I told her i took dairy away and she said she doesn’t believe he has a dairy allergy and I could give him back his cheese.  The apt was last week on the 4th.  I have not given him cheese yet, but his diet is very limited to begin with and he is not happy eating a sandwich without cheese, lol

[knitty kitty]

@Momkaren,

Welcome to the forum!

Antibody tests shouldn't be used to test for compliance to a gluten free diet.

Reliability of antitransglutaminase antibodies as predictors of gluten-free diet compliance in adult celiac disease

"Conclusions: In adult celiac disease patients on a GFD, IgA-tTG-ab are poor predictors of dietary transgressions. Their negativity is a falsely secure marker of strict diet compliance."

https://pubmed.ncbi.nlm.nih.gov/12809831/

 

Have you considered supplementing your son's diet with vitamins and minerals?  This would be invaluable since your son doesn't seem to be eating a nutritionally dense diet.

Has your son been checked for nutritional deficiencies?  

Constipation can be caused by deficiencies in Thiamine B1 and magnesium.  

 Thiamine has been shown to be helpful in Autism.

Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study

https://pubmed.ncbi.nlm.nih.gov/12195231/

 

The Rationale for Vitamin, Mineral, and Cofactor Treatment in the Precision Medical Care of Autism Spectrum Disorder

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9964499/

 

Relationship between Vitamin Deficiencies and Co-Occurring Symptoms in Autism Spectrum Disorder

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7279218/

Hope this helps!

[Momkaren]

Hi Knitty Kitty, 

Are you aware of tests that are run to check adherence to a gluten-free diet? My sons drs have always run the same blood tests.

My son takes a multivitamin for picket eaters. He drinks 1 Ensure High Protein drink each day. He takes an iron supplement because he was anemic in the past. 

He hasn’t been tested for vitamin deficiency in many years. 

[knitty kitty]

@Momkaren,

There's the fecal test for gluten immunogenic peptides (GIP). 

 Biomarkers to Monitor Gluten-Free Diet Compliance in Celiac Patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5295090/

A multivitamin is not sufficient in people with poor absorption.  More of the water soluble B vitamins are needed, especially if there's been diarrhea or constipation.  Supplementing with Thiamine helps.  Please be sure to read this article.

Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study

https://pubmed.ncbi.nlm.nih.gov/12195231/

 

Talk with a nutritionist or dietician who can explain a diet that includes plenty of essential vitamins and minerals.  

[Russ H]

6 hours ago, trents said:

Is he consuming dairy? About 10% of celiacs react to the protein casein in dairy like they do the protein gluten in wheat/barley/rye. The structures are very similar.

My understanding is that this is a cross-reaction - people with active coeliac disease generate antibodies that cross-react to milk proteins amongst other things. However, the cross-reaction does not drive coeliac disease, and when gluten is excluded and the antibodies fade out, the cross reaction disappears.

[trents]

2 hours ago, Russ H said:

My understanding is that this is a cross-reaction - people with active coeliac disease generate antibodies that cross-react to milk proteins amongst other things. However, the cross-reaction does not drive coeliac disease, and when gluten is excluded and the antibodies fade out, the cross reaction disappears.

That's not my understanding of what is meant by cross reaction but you could be correct. At any rate, in this person's case, there seems to be doubt as to whether he is truly eating gluten free.

[knitty kitty]

https://pubmed.ncbi.nlm.nih.gov/29555204/

Seems just the cows milk protein can stimulate tTg IgA antibody production even on a gluten free diet.  Removal of cows milk protein stops the production of tTg IgA antibodies.