How to diagnose NCGS / false positive Celiac / extreme fatigue, night terrors

[jayjays]

Hi Celiac Forum,

I am new here, and hope this is the right place to post my question and find some orientation.

I am looking for ways to diagnose what the hell is wrong with me. I tested negative for Celiac (I think it was a tTG-IgA) but have bizarre symptoms when eating gluten.

Here is my story in a nutshell:

• throughout my 30s (now almost 40 yo), I had extreme fatigue, frequent night terrors (waking up and thinking there are people in the room), and often memory problems - all of which I put down to work stress
• this year, building up over two months, I exprienced debilitating brain fog, up until I developed continuous migraine for a few weeks, severe cognitive problems (lack of concentration, memory problems, inability to think clearly) alongside terrifying emotional problems (anxiety, panic attacks, depressive episodes, psychotic night terrors and hallucincations at night) - a truly awful time that made me doubt myself at times and felt like I am decending into madness
• all tests that were conducted came back negative (CT, MRI, blood tests, viral brain infection)
• on a side note one GP suggested to look into gluten and - while sceptical - I just went on a gluten free diet to try it out
• within days on a gluten free diet the most severe symptoms disappeared, over multiple months the migraines, cognitive and emotional problems subsided slowly
• gastro tested negative for celiac
• neurologist didn't quite know what to do with me and diagnosed "chronic migraine" - he wanted to put me on hefty migraine treatment over months, which I refused
• now when (accidentally) eating food with gluten, I consistently develop a migraine after about 4 hours, night terrors/hallucinations at night, and sometimes back to the extreme exhaustion for a day or two
• I started to read about gluten, ncgs, celiac, at the moment ncgs is my leading theory, staying off gluten seems to help

I am absolutely terrified about this recent time, in particular the emotional and psychotic symptoms, and still scared what the previous years of night terrors and extreme fatigue did to my body and brain. However, I am equally thankful to have discovered that a gluten free diet seems to help. It makes me shudder to think about how many similar cases might suffer from such symptoms - lacking a GP that points them towards trying a gluten free diet, or worse, disregaring it as a fad.

Having tested negative for coeliac disease, I am searching for other ways for diagnosis. My gastro proposed a biopsy, which requires eating gluten for two weeks. I don't want to undergo the above mentioned symptoms however. As mentioned above the neurologist doesnt quite know what to do with me.

Feeling a bit left alone, I was wondering whether others had a similar experience, or have suggestions about further tests or doctors that might be able to help (I'm based in London, UK)?

[trents]

Welcome to the forum, @jayjays!

Was the tTG-IGA the only celiac antibody test done? A more complete panel should have been ordered. Had you been eating gluten free or reduced gluten at the time of the blood draw?

Your symptoms all scream of celiac disease but in order to get confirmation indeed, you would need to return to a gluten rich diet (4-6 pieces of bread daily or the gluten equivalent, i.e., 10g.) for several weeks before testing. This is true for both the blood antibody testing and the endoscopy with biopsy.

Unfortunately, the UK health care system seems to be very inflexible so I'm not sure how much leverage you have in getting more complete antibody testing done.

Another option would be to get your genetics checked to see if you have the potential for celiac disease. If you don't, you would need to be looking in a different direction to explain your symptoms.

 

 

 

 

 

Edited September 7, 2024 by trents

[plumbago]

I was drafting a reply when trents' reply came in, and I concur with everything he says. I was going to say, @jayjays that, based on what you wrote, it seems that the sequence of testing events was not correct. You need to still be eating gluten even for the blood tests.

If your goal is to find out if you have Celiac, then that is what you need to do. Myself, I like knowing a diagnosis as precisely as possible. If on the other hand, you just want the misery to end in the short and medium-term, then it seems you know what to do. But after that, should any symptom return, you might not have as good an idea of what's going on as you would if you had ruled in or ruled out Celiac.

[trents]

In a person with celiac disease, the consumption of gluten causes an inflammatory response in the villous lining of the small intestine. This inflammatory response produces antibodies that can be detected by blood tests. When you withdraw gluten from the diet, the inflammation subsides and the antibodies in the blood begin to disappear and after a certain period of time they will drop below levels that can be detected by the tests. Same with biopsy. The inflammation caused by gluten consumption wears down the villous lining and damages it. When you withdraw gluten the inflammation ceases and the lining begins to heal. If enough time passes and healing is significant, there is no damage to see from the biopsy.

[cristiana]

Hi @jayjays

Reading your post something really struck me: you mention night terrors/hallucinations.  I know how scary this can be. 

Before I go any further, I must tell you that I am not a doctor or qualified to give medical advice, but I would like to share my own experience in case it helps.

I suffered with hallucinations for about ten years before my diagnosis, which scared me a lot.    My hallucinations were chiefly on waking, or when I was in a state of semi-awakeness (is that even a word?!)  They started off when I was expecting my first child.  I would wake up and see the strangest things, pretty fairy lights, rows of bunny rabbits, geometric shapes.   I know - odd!   Strangely they didn't bother me so much when I saw them, but the following day I'd remember the hallucinations and they would freak me out.  I thought I was going completely doolally. 

I have never taken LSD or any recreational drugs but I wondered if I was suffering from  similar effects.  It made me wonder why on earth people would want to take 'recreational' drugs to see this kind of thing!

As I was pregnant I was sent to see a neurologist who told me once I'd had my child I ought to have an MRI.  He had never seen anyone with my symptoms before.  A few months later they did the scan, completely normal apart from a cyst which they felt was of no clinical importance and  something I was born with.   A repeat scan confirmed this.   Interestingly, the symptoms got less severe over time and almost disappeared but started up again with a vengeance when I was expecting my second child. 

By this time I was less scared by them because after spending hours and hours on the internet I'd found accounts from other sufferers.  It appeared I was suffering from hypnopompic hallucinations and although they can be linked with various conditions, some people just get them.   I then saw another neurologist who confirmed my self-diagnosis, and he said that as I was seeing them as I was waking up he wasn't worried about them.

I understand that migraine sufferers can be prone to them.  LIke you I was a sufferer, and during that time I developed not just pain but aura migraines  with flashing lights etc.   (Also, it is worth noting hallucinations are common among the sleep-deprived).

But here's the thing:  when I was diagnosed with coeliac disease they got particularly bad again.  I was also suffering from clinical anxiety at the time (something I'd not had before) and the hallucinations made me even more anxious.    At the time my blood revealed low blood iron and borderline B12 levels.  Whether it was giving up gluten, or those levels getting better I will never know, but my aura migraines and the hallucinations have all but disappeared.

I ought to add that my sister who is a picture of health suffers from them occasionally, and also gets migraines occasionally.  She finds they hit her when she eats too rich food before going to sleep.  One other thing to consider:  Are you taking  medication before you go to bed?  If so, do see if it might be causing vivid dreams and hallucinations. I once took a proton-pump inhibitor (PPI) for gastric issues too close to bedtime and I had the most terrifying dream, and when I googled the medication I discovered that it can cause nightmares and hallucinations.  Just a thought.

Cristiana

 

  

Edited September 7, 2024 by cristiana

[SunshineFace]

4 hours ago, trents said:

In a person with celiac disease, the consumption of gluten causes an inflammatory response in the villous lining of the small intestine. This inflammatory response produces antibodies that can be detected by blood tests. When you withdraw gluten from the diet, the inflammation subsides and the antibodies in the blood begin to disappear and after a certain period of time they will drop below levels that can be detected by the tests. Same with biopsy. The inflammation caused by gluten consumption wears down the villous lining and damages it. When you withdraw gluten the inflammation ceases and the lining begins to heal. If enough time passes and healing is significant, there is no damage to see from the biopsy.

Hello @trents! May I ask the question in reverse? If I present at EGD with zero villous atrophy confirmed with multiple biopsies, that means I am either presenting as a non-Celiac OR I've eaten well enough for long enough to heal all remnants of Celiac-induced atrophy? Is that the goal of a Celiac eating a gluten-free diet? To be indistinguishable from a non-Celiac during an EGD?

 

[plumbago]

That is the goal of a gluten-free diet, @SunshineFace.

24 minutes ago, SunshineFace said:

o be indistinguishable from a non-Celiac during an EGD?

But there is another possibility that you did not list, which is that no damage has occurred yet, and it may be a matter of time. However, if in your scenario, the EGD you reference occurred in someone previously diagnosed with celiac disease who had been eating gluten-free for some time, then, yes it likely does mean that healing has taken place.

 

[trents]

37 minutes ago, SunshineFace said:

Hello @trents! May I ask the question in reverse? If I present at EGD with zero villous atrophy confirmed with multiple biopsies, that means I am either presenting as a non-Celiac OR I've eaten well enough for long enough to heal all remnants of Celiac-induced atrophy? Is that the goal of a Celiac eating a gluten-free diet? To be indistinguishable from a non-Celiac during an EGD?

 

Yes, that is the goal. Although, appearances can be deceiving. There are studies that show some dimensions of villous mucosa healing may forever evade the celiac. Somethig thath has been termed "gene scaring".: https://www.beyondceliac.org/research-news/potential-drug-to-treat-celiac-disease-prevents-damage-caused-by-gluten-in-recent-study-of-molecular-action/

[SunshineFace]

Yes @plumbago! You're right! I hadn't thought of that... Celiac may show up in the future! So if there is no confirmation of Celiac with current EGD, it could serve as a baseline for future testing.  

 

[SunshineFace]

Thank you for the insights/link, @trents! I'm glad you mentioned it; the article clarified some of the questions I had after watching a researcher interview on BeyondCeliac, talking about 'long-term immune T-cell scarring'. Exciting times for research though, with implications for related autoimmune conditions! And maybe making EGD testing in the future unnecessary?  

Here's the interview: 

 

[plumbago]

What I really liked about this video - and thank you so much for posting it - is that he/they talked about what happens to someone vis a vis their celiac disease who is on a gluten-free diet, also active vs inactive celiac disease, and potential celiac disease. These are things that I've been very much wanting to discuss forever.

I have many other questions - but when they talked about other biomarkers, I thought of lipase. Scary pancreatic enzyme if high. One time, I ordered this test for myself and lo and behold, it came back high. I panicked. So I messaged the GI, who told me not to order my own tests (!) in addition to some other things, and so a few years passed. Then I was having some GI issues recently potentially related to a hiatal hernia, potentially related to taking NAC (which I've since stopped), so I went in to see him again. I mentioned the lipase test I ordered on myself a couple of years ago. He looked it up on some doctor site or other that no doubt we all have access to, and one result came back: celiac disease. But that begs the question: controlled celiac disease or uncontrolled? (Anyway, for those interested, he ordered an abd ultrasound, which came back fine.) Understanding the difference between controlled celiac and uncontrolled is something I never cease being very interested in.

I also liked how in the video, Dr Han talked about autoimmunity in general. It's so sad that celiac disease and autoimmunity are not investigated vigorously, especially among Medicaid and Medicare patients. With Medicaid, if someone may have Celiac, forget it. It's almost like it doesn't exist for them.

Edited September 9, 2024 by plumbago

[Wheatwacked]

During this entire discusssion of the immune system there was no refefernce to the fact that vitamim D regulates T cells 

Quote

Vitamin D3 may induce tolerogenic dendritic cells that may in turn stimulate IL-10 producing CD4+ T-cells and antigen-specific Tregs [12]. High levels of 1,25(OH)2D can induce the lineage-specific FOXP3 transcription factor involved in the development and function of Tregs [13, 14] and so enhance the number and/or function of circulating CD4+ Tregs that have a number of anti-inflammatory functions [12, 15–17]. High levels of 1,25(OH)2D have been associated with anti-inflammatory lymphoid polarisation including a high proportion of Tregs [18]. Tregs induced or stimulated by vitamin D3 may play a role in controlling allo- and auto- immune T cell responses by releasing or expressing inhibitory cytokines such as IL-10 [19, 20] and TGF-beta [21], through release of granzymes and perforin [21] or via expression of inhibitory co-receptors such as CTLA-4 to prevent antigen presentation and initiation of the pro-inflammatory response [14]. There is therefore considerable animal or in vitro experimental evidence the vitamin D3 may indirectly or indirectly increase the numbers or function of Tregs.  The role of vitamin D in increasing circulating T regulatory cell numbers and modulating T regulatory cell phenotypes in patients with inflammatory disease or in healthy volunteers: A systematic review

Quote

Vitamin D can modulate the innate and adaptive immune responses. Deficiency in vitamin D is associated with increased autoimmunity as well as an increased susceptibility to infection. As immune cells in autoimmune diseases are responsive to the ameliorative effects of vitamin D, the beneficial effects of supplementing vitamin D deficient individuals with autoimmune disease may extend beyond the effects on bone and calcium homeostasis. Vitamin D and the Immune System

 

[plumbago]

There were a lot of things left out, necessarily, of a one hour discussion. I bet he'd have addressed it had one of their participants asked. It was still a worthwhile discussion.

Plumbago

[knitty kitty]

I agree with @Wheatwacked.  More nutritional factors need to be looked at in Celiac Disease.  

Dr. Han only mentioned checking vitamin levels once in passing.    Doctors need to acknowledge the importance of nutritional factors in Celiac Disease.

Not only does Vitamin D help regulate the immune system, other vitamins like Thiamine and the rest of the B vitamins are integral to the immune system responses.

Vitamin B1 Supports the Differentiation of T Cells through TGF-β Superfamily Production in Thymic Stromal Cells

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7452312/

B Vitamins and Their Role in Immune Regulation and Cancer

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7693142/

Diet-mediated constitutive induction of novel IL-4+ ILC2 cells maintains intestinal homeostasis in mice

https://pubmed.ncbi.nlm.nih.gov/37163450/

[Wends]

Hi from the UK also (up north).

Have you heard of the Coeliac and gluten-related disorders ( neurological) researchers / specialists at NHS Sheffield Hospital and Uni of Sheffield? They are leading the way on the blood test for TTG6 (TTG2 is related to Coeliac disease). TTG6 is specific for neurological and gluten ataxia. These patients may or may not test positive for Celiac Disease.

If you could get a referral there it may be helpful? But not sure how easy it would be to get referred! but you could ask your GP? Or your Neurologist whether they are familiar with gluten-associated neurological disorders and the antibody testing of TTG6 developed by the team (available for research but trying to get it available). There’s presentations online free to watch also.

Search for Professor Marios Hadjivassiliou , Prof David Sanders…

 

[Wheatwacked]

To @jayjays,

Take vitamin D for the night terrors, Thiamine for the neuralogic, and Choline for the gut dybiosis and brain fog, Red Bull for the energy.  

I do think his recearch is important,  he is looking for a non Gluten Challange way to diagnose Celiac Disease.

Wonder where this research went:

 

[MIsailR]

On 9/7/2024 at 9:53 AM, jayjays said:

Hi Celiac Forum,

I am new here, and hope this is the right place to post my question and find some orientation.

I am looking for ways to diagnose what the hell is wrong with me. I tested negative for Celiac (I think it was a tTG-IgA) but have bizarre symptoms when eating gluten.

Here is my story in a nutshell:

• throughout my 30s (now almost 40 yo), I had extreme fatigue, frequent night terrors (waking up and thinking there are people in the room), and often memory problems - all of which I put down to work stress
• this year, building up over two months, I exprienced debilitating brain fog, up until I developed continuous migraine for a few weeks, severe cognitive problems (lack of concentration, memory problems, inability to think clearly) alongside terrifying emotional problems (anxiety, panic attacks, depressive episodes, psychotic night terrors and hallucincations at night) - a truly awful time that made me doubt myself at times and felt like I am decending into madness
• all tests that were conducted came back negative (CT, MRI, blood tests, viral brain infection)
• on a side note one GP suggested to look into gluten and - while sceptical - I just went on a gluten free diet to try it out
• within days on a gluten free diet the most severe symptoms disappeared, over multiple months the migraines, cognitive and emotional problems subsided slowly
• gastro tested negative for celiac
• neurologist didn't quite know what to do with me and diagnosed "chronic migraine" - he wanted to put me on hefty migraine treatment over months, which I refused
• now when (accidentally) eating food with gluten, I consistently develop a migraine after about 4 hours, night terrors/hallucinations at night, and sometimes back to the extreme exhaustion for a day or two
• I started to read about gluten, ncgs, celiac, at the moment ncgs is my leading theory, staying off gluten seems to help

I am absolutely terrified about this recent time, in particular the emotional and psychotic symptoms, and still scared what the previous years of night terrors and extreme fatigue did to my body and brain. However, I am equally thankful to have discovered that a gluten free diet seems to help. It makes me shudder to think about how many similar cases might suffer from such symptoms - lacking a GP that points them towards trying a gluten free diet, or worse, disregaring it as a fad.

Having tested negative for coeliac disease, I am searching for other ways for diagnosis. My gastro proposed a biopsy, which requires eating gluten for two weeks. I don't want to undergo the above mentioned symptoms however. As mentioned above the neurologist doesnt quite know what to do with me.

Feeling a bit left alone, I was wondering whether others had a similar experience, or have suggestions about further tests or doctors that might be able to help (I'm based in London, UK)?

Your symptoms, especially the neurological ones, are really concerning. NCGS does seem like a possibility. Have you considered talking to your doc about a gluten challenge or exploring other potential causes? Also, keeping a food and symptom diary might help track patterns.

[Viviane Cooper]

Hi. I think you have Non-celiac gluten sensitivity. Your body already tells you gluten is a problem. I also don't have celiac disease, but suffer from eating gluten - headaches, extreme fatigue and irritation - all neurological symptoms. I've been gluten-free for 8 years, and the few instances I ate gluten by accident, all the symptoms came back. In my opinion you don't need to look for a formal diagnosis for the gluten intolerance. Just keep avoiding gluten.