Post diagnosis

[Kathleey]

My son was diagnosed at 11 years old.  He basically fell off the growth chart and that is what brought about the diagnosis. He also had a endoscopy and blood work which confirmed the celiac.  He saw an Endocrinologist after his diagnosis and he flourished. He went from 4 feet and barely 85 pounds to 6'2" and around 130 lbs.  He had continuous blood work done and his numbers were great.  He has followed a gluten free diet for the past 11 years.  He has struggled to gain more weight.  He also started to have stomach and bowel issues.  He recently had an endoscopy ( the first since his original one for the diagnosis) and the results are not good.  The gastro dr. advised that his intestines are damaged.  She is concerned that it is refractory celiac.  My question is how could he have been thriving and growing all this time and now the endoscopy shows damaged intestines.   I understand that there is no way to tell if having even a small amount of gluten could do serious harm.  I will say that he is very vigilant about not having anything that is not gluten free.  Very worried mom here and I would appreciate any insight or suggestions.  Thank you, Kathy 

[trents]

Welcome to the forum, @Kathleey!

Does your son consume dairy? A certain percentage of celiacs experience villous atrophy from CMP (Cow's Milk Protein). 

 

[Kathleey]

He does have dairy.   I didn’t realize this could be an issue. Would lactose free be better or no dairy at all? 

[Scott Adams]

Dairy-free is not the same as lactose-free, and he would need to eliminate all dairy, however, to me it might be more likely that his diet is not 100% gluten-free, so I would start there first.

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]

Lactose is the sugar component in milk, not the protein component. Many celiacs are lactose intolerant and this causes GI distress but would not damage the mucosal lining of the small bowel. I would like to echo what Scott is saying about the likelihood of some unexpected source of gluten having entered into your son's diet. Please read the article he linked. Also realize that food companies can and do change their formulations from time to time such that what was once gluten free no longer is. So, it's a good idea to recheck everything in the pantry from time to time.

[Wheatwacked]

Hi Kathleey.  How old is your son, now?  How long was he doing well before this?

     If he is not getting enough eggs, milk, beef, or liver in his diet he will be deficient in choline.  Choline is an essential nutrient that can cause gall bladder type symptoms.  90% of the doctors do not know what choline is and 90% of the western population do not get even the minimum RDA of 500 mg a day.  The equivalent of 4 eggs a day or more. Low choline has been proven to cause Non Alcoholic Fatty Liver Disease.  It is a basic building block of cell and mitochondria membranes.  Deficiency can increase brain fog.

  Supplementing 500 mg or more (safe range is up to 3500 mg a day) will help with his discomfort.

Thiamin deficiency can cause beri-beri, a disease our western medicine insists is not a problem in our culture and so it is ignored.  In addition to insufficient intakes of thiamin from the diet, the causes of thiamin deficiency include lower absorption or higher excretion rates than normal due, for example, to certain conditions like Celiac Disease.  A third form of beriberi has been described with gastrointestinal symptoms. In the 1940s, a study of induced thiamine deficiency demonstrated the onset of gastrointestinal symptoms such as nausea, vomiting, and abdominal pain.

Thiamin Fact Sheet for Health Professionals

"Although beriberi is rare in the United States and other developed countries, people in these countries do occasionally develop the condition. Administration of supplemental thiamin, often parenterally, quickly cures beriberi... Humans store thiamin primarily in the liver but in very small amounts. The vitamin has a short half-life, so people require a continuous supply of it from the diet."  "Because of the lack of reports of adverse effects from high thiamin intakes (50 mg/day or more) from food or supplements, the FNB did not establish ULs for thiamin"

Consider supplementing 100 mg a day or the fat soluable version Benfothiamine.  Larger doses will have quicker recovery. The RDA for Thiamine is 1.2 mg a day and there are no side effects from higher amounts but deficiency can be debilitating.

Choline Fact Sheet for Health Professionals

The main dietary sources of choline in the United States are animal-based products that are particularly rich in choline—meat, poultry, fish, dairy products, and eggs.

The 2013–2014 National Health and Nutrition Examination Survey (NHANES) found that the average daily choline intake from foods and beverages among children and teens is 256 mg for ages 2–19.  The RDA is 550 mg a day.

It is essential in digesting fats.  80% of the bile salts are choline.

 

[Scott Adams]

While I agree with most of the info in your post, I doubt this part of it is true: "90% of the doctors do not know what choline is...".  I think it would be more accurate to say: "Many doctors do not know what choline is..."

[Kathleey]

Thank you all.  
 

My son is 22 and had been gluten free since diagnosed at 11.  He did not have any stomach issues.  He had growth issues. I’ve in the diet he grew in both Height and weight.  He has consistently had NO vitamin deficiencies.   He does not drink milk, eat eggs and have yogurts and cheeses. 
 

 

[trents]

16 minutes ago, Kathleey said:

Thank you all.  
 

My son is 22 and had been gluten free since diagnosed at 11.  He did not have any stomach issues.  He had growth issues. I’ve in the diet he grew in both Height and weight.  He has consistently had NO vitamin deficiencies.   He does not drink milk, eat eggs and have yogurts and cheeses. 
 

 

This conflicts with what you said above in your second post when you said he does have dairy. Yogurts and cheeses are dairy products.

[Scott Adams]

24 minutes ago, Kathleey said:

Thank you all.  
 

My son is 22 and had been gluten free since diagnosed at 11.  He did not have any stomach issues.  He had growth issues. I’ve in the diet he grew in both Height and weight.  He has consistently had NO vitamin deficiencies.   He does not drink milk, eat eggs and have yogurts and cheeses. 
 

 

Has he had his thyroid function checked? Many people with celiac disease also have thyroid issues.