2 years post diagnosis and teen still exhausted

[Cjax]

My 16 year son has been eating gluten-free for close to 2 years.  When he began eating gluten-free he became more and more tired to the point where he cannot do any of his old activities and has trouble focusing.  We have seen every specialist and had every test imaginable, including an additional biopsy and colonoscopy.  Everything looks good. We have also tried antidepressants because depression can also play a role but we have had no improvement.  We are desperate to find a reason or diagnosis. He went from being a superstar kid to one who can’t focus and is chronically tired. Please offer any suggestions.

Edited July 1, 2019 by Cjax

[cyclinglady]

I am so sorry that your son is still ill.  It sounds like he has healed from celiac disease (repeat blood and biopsies).  Unfortunately, once you develop one autoimmune disorder, you can develop another.  Has something like Chronic Fatigue Syndrome been ruled out?  

We tend to forget as celiacs that not all things are related to celiac disease.  For example, I thought that my celiac disease was active and  that gluten was getting into my diet.  I also had a repeat biopsy and found that I had healed from celiac disease, but was diagnosed with Autoimmune Gastritis.  

I hope this helps.  Please keep advocating for your son!  

[GFinDC]

Hi Cjax,

First, make sure he is not eating any gluten.  That means no wheat, rye or barley.  It also means no oats, as a small percentage of celiac patients react to oat protein also.

I hope there is no cross contamination in the home?  No sharing of peanut butter jars, mayo jars etc?  No sharing of the toaster?  A good thing to do is keep all the gluten-free food on the top shelf of the refrig.  That way gluten crumbs can't fall on it.

I hope he is eating a mostly whole foods diet.  Not processed factory foods but real foods made from whole ingredients.

If he is doing everything right then it may be he has another food intolerance going on.  When our gut is irritated for a long time it can develop reactions to other foods besides gluten.  Any of the top 8 allergens are likely candidates for an additional food intolerance.

Some vitamins/minerals to be concerned about are vitamin D, calcium, boron, B-12, and selenium.  He can get selenium by eating brazil nuts.

You didn't say if he is still having digestive symptoms?  If he is try taking him off dairy and oats for a while.  Iodine is another gotcha if he doesn't eat iodized salt.  Sea salt and Himalayan salt are not iodized.

[Posterboy]

5 hours ago, Cjax said:

My 16 year son has been eating gluten-free for close to 2 years.  When he began eating gluten-free he became more and more tired to the point where he cannot do any of his old activities and has trouble focusing.  We have seen every specialist and had every test imaginable, including an additional biopsy and colonoscopy.  Everything looks good. We have also tried antidepressants because depression can also play a role but we have had no improvement.  We are desperate to find a reason or diagnosis. He went from being a superstar kid to one who can’t focus and is chronically tired. Please offer any suggestions.

Cjax,

I think you should check into SIBO. 

CFS and Brain Fogginess is common in those who develop SIBO.

Here is few links about how your gut biome can effect CFS symptom's and things like brain fogginess you describe for your son.

https://www.webmd.com/chronic-fatigue-syndrome/news/20160715/gut-bacteria-may-hold-clues-to-chronic-fatigue-syndrome#1

https://medicalxpress.com/news/2018-08-probiotic-link-brain-fogginess-severe.html

https://me-pedia.org/wiki/Small_intestinal_bacterial_overgrowth

Try taking some Magnesium for the fatigue.

Here is how Magnesium can help with CFS.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

Here is also a thread about how treating SIBO can help IBS symptom's.

https://www.sciencedirect.com/science/article/pii/S0002927000021614

Also read this current thread about a mother who is going through similar things with her son currently that has some nice information about the SIBO connection in Celiac's.

Try taking a co-enzyme B-Vitamin and Magnesium Glycinate and I think his energy levels will improve.

See this study about how B-Vitamins helps celiac's on a gluten free diet.

https://www.ncbi.nlm.nih.gov/pubmed/19154566

I hope this is helpful but it is not medical advise.

Posterboy,

ETA I forget this thread about another mother dealing with neurological issues with her kid that also might be helpful.

 

Edited July 1, 2019 by Posterboy
ETA left out link from a current thread from a mother dealing with neurological issues in their son

[Ennis-TX]

I am a bit of a extreme case and suffered some ataxia damage, but for me to work right I still have to take a full B-vitamin complex and neurological vitamin supplement, along with magnesium, vitamin D, CBD, and found I work best on a Paleo based diet with Keto macros. But I am addressing other AI issues, glucose/pancreas issues and hte fact my body runs best on fats instead of carbs.
More info on his diet/symtons would help, is he getting the right vitamins/minerals, what about fats?
 

[Sacha]

My daughter (14) had exactly the same problems and now is diagnosed with CFS. Are there studies known that link Celiac decease and CFS?

we are desperate...

 

[Ennis-TX]

6 hours ago, Sacha said:

My daughter (14) had exactly the same problems and now is diagnosed with CFS. Are there studies known that link Celiac decease and CFS?

we are desperate...

 

Unsure on studies but the bodies inability to get nutrients in the necessary quantities for repair and daily function results in very similar issues. If the body has immune reactions to foods like celiac or allergies and/or food sensitives or intolerance issues you can also see this as it is constantly working overdrive in the background.
There are many other issues that could lead to like how your body processes foods. Do you run better on fat for fuel low carb or carbs? How does your body process different forms of vitamins/minerals and the pathways. All which have a bit of a genetic and ancestry thing.
Few other random concepts like thyroid, hormones, pancreas which have their own factors.

[cyclinglady]

6 hours ago, Sacha said:

My daughter (14) had exactly the same problems and now is diagnosed with CFS. Are there studies known that link Celiac decease and CFS?

we are desperate...

 

It just seems that if you have one autoimmune disorder, you can develop more.  I have read a lot about Lyme Disease and CFS.  Any chance of her having Lyme?  

Does she have celiac disease like the original poster?  Had follow-up testing to determine healing?  

[pikakegirl]

It took a while before a Dr. Tested me for MTHFR and found I had one of the 2 genes. I had been 9 years militant gluten free ( no eating out either) but still exhausted. I now avoid folic acid foods and take 3000mg l-methylfolate daily. Boost of energy and outlook on life. Check out NIH library site and search depression and folate. Great study results for folate. Some bodies don't convert vitamins well, especially after damage to the GI. There are others like B6 as well that have a methyl alternative.  Keep looking, I know CFS is a real thing as well but boosting the bodies nutrients is always good.

[Posterboy]

On 8/11/2019 at 11:14 PM, pikakegirl said:

It took a while before a Dr. Tested me for MTHFR and found I had one of the 2 genes. I had been 9 years militant gluten free ( no eating out either) but still exhausted. I now avoid folic acid foods and take 3000mg l-methylfolate daily. Boost of energy and outlook on life. Check out NIH library site and search depression and folate. Great study results for folate. Some bodies don't convert vitamins well, especially after damage to the GI. There are others like B6 as well that have a methyl alternative.  Keep looking, I know CFS is a real thing as well but boosting the bodies nutrients is always good.

Pikakegirl,

You might try taking some B-6 in the  P5P form.

Also try taking some Thiamine it can help CFS.

Here is the research on it entitled "Thiamine and fatigue in inflammatory bowel diseases: an open-label pilot study."

https://www.ncbi.nlm.nih.gov/pubmed/23379830

You might want to research some on B-2 aka Riboflavin too it has been shown to be important in those who have a MTHFR gene variant.

It is a common cofactor that we often get low in ...especially in malnourished states that can happen in people with GI problems.

Here is an article about the B-2 connection/association.

https://chrismasterjohnphd.com/blog/2019/02/26/mthfr-just-riboflavin-deficiency/

And consider taking a Magnesium Citrate with meals or Magnesium Glycinate ....Magnesium is important to make energy.

Here is a article about Magnesium's connection/association with CFS.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

I hope this is helpful but it is not medical advise.

Posterboy,