Extreme fatigue

[Reneemb]

I found out I had gluten intolerance many years back and suspected my son had it as a young boy.  Skip to now he is 16 years old.  He started to feel completely fatigued about 2 months ago.  He cannot go to school and really never wakes up unless Im forcing him to eat.  He was a physically fit boy who played football.  After the doc tested him for mono etc and an ultrasound of his abdomen, he agrees we need to explore celiac disease.  What test needs to be done?  It has been so long since I have gone down the avenue of testing.  I do remember it being completely frustration and I just went on the diet and felt so much better.  I also had fatigue as a teen.  Can anyone shed insight on this???

 

Thank you,

Worried mom

[trents]

Welcome to the forum, Reneemb!

Were you, yourself, officially diagnosed with celiac disease or NCGS (Non Celiac Gluten Sensitivity)?

Concerning your son, realize that non adults, even teens, may have immune systems that are not completely mature and so may respond differently to antibody tests than do adults. Commonly, general practitioners will only run one antibody test, the tTG-IGA. Ideally, everyone should get more than that one test done but medical cost containment protocols being what they are that usually doesn't happen.

For your son, I would push for: Total IGA, tTG-IGA and Deamidated gliadin peptide (DGP IgA and IgG).

Here is a primer for celiac antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

If the antibody testing produces any positives, the physician may refer you to a GI doc for an endoscopy with biopsy to check for damage to the villous lining of the small bowel, the hallmark of celiac disease.

Edited April 5, 2023 by trents

[Reneemb]

Yes, I was diagnosed with NCGS.  It took me months to see a doctor at the Celiac Center at UIC in Chicago.  By then I had been on the diet for several months.  Anyhow, thank you for the info.  I will talk to his doctor on Thursday and try to get him tested right away since I'm trying the gluten-free diet on him now to get him to wake up.  This is so scary.  Thanks again. 🥲

[trents]

Did you know that beginning the gluten free diet ahead of being tested will invalidate the testing? Celiac disease causes inflammation of the lining of the small bowel when gluten is consumed. If gluten is discontinued, the inflammation goes away and no antibodies will be produced to detect. From what you report about your own experience that makes me wonder if you testing was negative because you had already started on the gluten free diet.

[Reneemb]

1 minute ago, trents said:

Did you know that beginning the gluten free diet ahead of being tested will invalidate the testing? Celiac disease causes inflammation of the lining of the small bowel when gluten is consumed. If gluten is discontinued, the inflammation goes away and no antibodies will be produced to detect. From what you report about your own experience that makes me wonder if you testing was negative because you had already started on the gluten free diet.

Yes.  I agree. He gets tested on Thursday so I'm wondering if I should wait for him to go completely gluten free until after.  We just started today. 

[trents]

I would wait. The reason I say that is if the test numbers are borderline, it may make a difference. Besides, you only have two more days before the blood draw to put up with the symptoms.

"Completely gluten free"? Have you already been cutting him back on gluten?

Keep us posted.

Edited April 5, 2023 by trents

[Reneemb]

It's going to kill me to give him gluten tomorrow but but I will. Uggg!  It's so much worse then it's your kid then yourself.  I put up with it for 30 plus years before finding out.  The Mayo told me it was CFS and fibromyalgia.  I guess I'm glad to understand it and be able to help my son because I have first hand knowledge.  It's just so hard because really no one understands it. I have friends who keep asking me," what will happen if you eat this piece of bread?"  I feel like they want me to give them something exciting as a response.... I usually say, you won't want me in your bathroom tomorrow.  It's so much more but that usually works to shut them up.  Thanks for the advice.  Regardless of his results I'm going to need to find a good gastroenterologist that understands it.  Unfortunately the UIC in Chicago is probably my best bet for him.  It just takes months to see them and hate that city now.  Thanks for listening.  

[trents]

Speaking of the Mayo Clinic, they have guidelines for a "pretest gluten challenge" for those who have been eating gluten free or cutting back on gluten but then want to get tested. With regard to antibody testing for celiac disease, the Mayo recommends the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks leading up to the day of testing. For the endoscopy/biopsy they recommend the daily consumption of the gluten equivalent of two slices of wheat bread for two weeks leading up to the day of testing. You may also benefit at some point from knowing that once gluten has been withdrawn from the diet for a significant period of time and then reintroduced, it typically results in more vigorous reactions. Any tolerance one might have had when consuming it daily is now gone.

[Reneemb]

49 minutes ago, trents said:

Speaking of the Mayo Clinic, they have guidelines for a "pretest gluten challenge" for those who have been eating gluten free or cutting back on gluten but then want to get tested. With regard to antibody testing for celiac disease, the Mayo recommends the daily consumption of an amount of gluten equivalent to two slices of wheat bread for 6-8 weeks leading up to the day of testing. For the endoscopy/biopsy they recommend the daily consumption of the gluten equivalent of two slices of wheat bread for two weeks leading up to the day of testing. You may also benefit at some point from knowing that once gluten has been withdrawn from the diet for a significant period of time and then reintroduced, it typically results in more vigorous reactions. Any tolerance one might have had when consuming it daily is now gone.

Oh wow.  That is interesting. When I went to the Mayo it was 1996.  I don't think they even knew about it then because I really didn't fit the fibromyalgia diagnosis.  I never had the 12 trigger spots.  It was gluten all along causing inflammation in my body. 

[Wheatwacked]

9 hours ago, Reneemb said:

I usually say, you won't want me in your bathroom tomorrow.

I love that answer.

If you can, get him tested for vitamin D and homocysteine and Thiamine deficiency. Vitamin D among other things controls the autoimmune system. High homocysteine indicates inflammation and can be caused by low absorption of Choline, B6, B12, Folate, and or Taurine. 

thiamine deficiency:

12 hours ago, Reneemb said:

He started to feel completely fatigued about 2 months ago.  He cannot go to school and really never wakes up unless Im forcing him to eat.

"This is more evident during rapid growth (i.e., perinatal periods and children) in which thiamine deficiency is commonly associated with either malnutrition or genetic defects. Thiamine deficiency contributes to a number of conditions spanning from mild neurological and psychiatric symptoms (confusion, reduced memory, and sleep disturbances) to severe encephalopathy, ataxia, congestive heart failure, muscle atrophy, and even death."  Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

[JenniK]

I’m worried about your son too! very scary that he cannot really wake. Did you get any answers or test results yet? I pray that he is improving.

[Reneemb]

The fatigue is still terrible.  I'm trying to get him to the Mayo for more answers.  gluten-free diet s need to help a little.  It worked on me in 3 days but not quite the case for him. Thank you for your concern.