Neurologist says deficiencies are caused by some malabsorption

[VioletM]

Hi, I'm writing here to help my boyfriend who is struggling with doctors and exams that didn't go anywhere. 

Frustration led me to write symptoms and results from different exams to AI (since I saw the debate about AI as an assistant to diagnosis is wide open) and it said that celiac is the most probable cause of all his symptoms. But I need now opinions from actual people.

However, he doesn't show evident GI symptoms, it happens that he feels nauseous and has some bloating but those could be correlated to his mental health.

He is now almost 24 and first symptons showed up at 17 with persistent hand tremors, almost as he is always cold, even when that's not true. He is also irritable and has troubles focusing and with short-term memory (often forgets what he was going to say, doens't remember where henleft keys etc..). There are other symptoms that come and go. For several days (from 1 or 5) symptoms described earlier are much more pronounced. Tremors affect other body parts as teeth start chattering, he has spasms with his head and his arms some of them being directed to specific targets and mimic voluntary actions (like slapping the nearest person, punching a door and throwing things). Other symptoms occurring in these episodes are shouting as he is feeling pain and has troubles speaking.

He did some tests thinking it could be Wilson disease due to ceruloplasmin being low, but both urinary and blood copper was low (it was supposed to be high for Wilson). Zinc is also low, excluding the possibility of excessive zinc intake being the cause of low copper. Other low values were folate and alkline phosphatasis.

He was diagnosed with an abnormal bipolarism disorder, treated with valproate but it just limited the frequency of those acute episodes.

I hope we find an answer soon

[cristiana]

Hello @VioletM and welcome to the forum.

I am sorry to hear of your boyfriend's problems, but I am so glad he has someone helping him look into things.

When I was diagnosed and I had a few albeit mild neurological issues (migraines, hallucinations, tingling and buzzing in my extremities and mild facial twitching) and some started long before I had any gastric symptoms.

I was worried about the neurological issues and mentioned them to my nutritionist and she said to me "Coeliac Disease is known as the Great Mimicker".   I think other diseases are given that title too, but it is very true that Coeliacs can have all sorts of weird and wonderful non-gastric symptoms which often resolve after adopting a gluten free diet, and addressing any deficiencies.

I am not sure where you are posting from so I am not sure what the system is with pursuing a coeliac diagnosis where you live? I am in the UK and the first step is most often approaching a GP.  Has he spoken yet to a doctor about getting tested?

Cristiana

Edited 8 hours ago by cristiana

[plumbago]

Hello @VioletM

Has your boyfriend circled back to his doctor to work with him or her on managing the levels of valproic acid / Depakote (as we call it in the US)? This is a medication that has hand tremor as a side effect, in addition to other effects, including neurological, and it requires regular blood level monitoring to make sure he is in the therapeutic range. Otherwise, if you are looking to test for celiac, there are numerous resources on this site regarding which tests to have ordered. It may be worth it to look into this.

Please stay in touch.

Plumbago

[VioletM]

4 minutes ago, cristiana said:

Hello @VioletM and welcome to the forum.

I am sorry to hear of your boyfriend's problems, but I am so glad he has someone helping him look into things.

When I was diagnosed and I had a few albeit mild neurological issues (migraines, hallucinations, tingling and buzzing in my extremities and mild facial twitching) and some started long before I had any gastric symptoms.

I was worried about the neurological issues and mentioned them to my nutritionist and she said to me "Coeliac Disease is known as the Great Mimicker".   I think other diseases are given that title too, but it is very true that Coeliacs can have all sorts of weird and wonderful non-gastric symptoms which often resolve after adopting a gluten free diet, and addressing any deficiencies.

I am not sure where you are posting from so I am not sure what the system is with pursuing a coeliac diagnosis where you live? I am in the UK and the first step is most often approaching a GP.  Has he spoken yet to a doctor about getting tested?

Cristiana

Hi Cristiana, thank you for your reply. 

I'm posting from Italy. He has spoken about this tests to his neurologist who said that there's some malabsorbtion. Now he is speaking about this with a new psychiatrist who is considering a higher does of valproate. Before doing that he is seeing his endocrinologist in a few days. 

Violet

[VioletM]

3 minutes ago, plumbago said:

Hello @VioletM

Has your boyfriend circled back to his doctor to work with him or her on managing the levels of valproic acid / Depakote (as we call it in the US)? This is a medication that has hand tremor as a side effect, in addition to other effects, including neurological, and it requires regular blood level monitoring to make sure he is in the therapeutic range. Otherwise, if you are looking to test for celiac, there are numerous resources on this site regarding which tests to have ordered. It may be worth it to look into this.

Please stay in touch.

Plumbago

Hi @plumbago

All of the symptoms existed before valproate prescription. He also checked blood values and valrpoate is in sub-therapeutic range, for which the psychiatrist is considering an higher dose.

Thank you for your reply,

Violet

[cristiana]

Hello Violet

The fact that you are posting from Italy is good - we coeliacs on this forum hear a lot of good stories about Italy being ahead of the game, testing all  children at 6 years of age, I seem to recall?  Also, Italian doctors should be aware of the work of Dr Alessio Fasano, and his work on gluten and coeliac disease, including neurological issues.

Is your boyfriend actually consuming gluten?  He will need to be if he is to be tested.

Cristiana

Edited 7 hours ago by cristiana

[VioletM]

24 minutes ago, cristiana said:

Hello Violet

The fact that you are posting from Italy is good - we coeliacs on this forum hear a lot of good stories about Italy being ahead of the game, testing all  children at 6 years of age, I seem to recall?  Also, Italian doctors should be aware of the work of Dr Alessio Fasano, and his work on gluten and coeliac disease, including neurological issues.

Is your boyfriend actually consuming gluten?  He will need to be if he is to be tested.

Cristiana

Hi Cristiana

He says he was tested when he was very young and was negative, but I heard that celiac can just "activate" at any age, is that true? 

He is consuming gluten, thanks for telling me that.

Violet

[cristiana]

1 hour ago, VioletM said:

Hi Cristiana

He says he was tested when he was very young and was negative, but I heard that celiac can just "activate" at any age, is that true? 

He is consuming gluten, thanks for telling me that.

Violet

Hi Violet

That's great that he is consuming gluten.  When I was tested a few years ago we were told to to include "gluten in more than one meal a day for at least six weeks before testing."   @Scott Adams or another Mod might update this, as I believe the thinking is changing on this.

Re: Coeliac screening.  Yes, the fact that your boyfriend was negative all those years ago does not mean that he does not have it now.  He might have developed it since.  My nephew is diabetic, Type I, and in fact he has to be routinely tested every three years because Type I diabetics can be prone to developing it.  That just goes to show it can develop at any time.  My own children have already been tested twice, when they encountered gastric problems at different times.

I hope that helps.

Cristiana

 

 

 

[VioletM]

24 minutes ago, cristiana said:

Hi Violet

That's great that he is consuming gluten.  When I was tested a few years ago we were told to to include "gluten in more than one meal a day for at least six weeks before testing."   @Scott Adams or another Mod might update this, as I believe the thinking is changing on this.

Re: Coeliac screening.  Yes, the fact that your boyfriend was negative all those years ago does not mean that he does not have it now.  He might have developed it since.  My nephew is diabetic, Type I, and in fact he has to be routinely tested every three years because Type I diabetics can be prone to developing it.  That just goes to show it can develop at any time.  My own children have already been tested twice, when they encountered gastric problems at different times.

I hope that helps.

Cristiana

 

 

 

Hi Cristiana,

we're italians, we eat pasta everyday so I guess consuming gluten won't be a problem.

Thanks for the help

Violet

[trents]

The nausea and bloating are classic GI celiac symptoms and so are vitamin and mineral deficiencies. There are antibody blood tests specific to celiac disease that can be ordered. I would suggest you specifically request this be done for your boy friend. Make sure that at the minimum these two tests are ordered: total IGA and TTG-IGA. In addition to being tested for mineral deficiencies, has your boyfriend been tested for vitamin deficiencies, particularly B12, niacin and thiamin and D3? I would also ask for a thyroid panel. In addition, some of the behaviors you describe suggest Tourette Syndrome to me.

Edited 4 hours ago by trents