Gluten Ataxia - status of duodenal villi

[fbirder]

Been to see my neurologist today about my ataxia. We're sure that B12 and diabetes aren't the cause and he's now following the idea of it being Gluten Ataxia. I had high IgA in August and he ordered a full blood screen of the likely antibodies - but the path lab screwed up the samples. I had more taken today, but the results may not be back before I go up to London to see Dr Lunn at The National Hospital for Neurology and Neurosurgery in London.

I had a gastroscopy two weeks ago and I asked for duodenal biopsy samples to be taken. From my quick look-sees I've found conflicting reports on whether GA would result in changed villi. Does anybody here know for sure.

I've downloaded a couple of Marios Hadjivassiliou's papers for reading tomorrow. Are there any other scientific sources people could recommend?

TIA

[Galixie]

I can't offer anything as far as research to review. I just wanted to say good luck!

Since my tests never showed celiac, my gluten ataxia is the ncgs variety (the existence of which is still disputed). I didn't show signs of villi damage, so I would say it's possible to have gluten ataxia without it, but that's just my personal thinking.

I would bet the conflicting reports about the villi damage coincide with the groups that believe that ataxia only happens with celiac disease and not with ncgs.

[Penel]

Hi Fbirder

Perhaps have a look around the PubMed site? As Galixie has suggested, it appears possible that gluten ataxia could be viewed as NCGS, which means there may not be damage to the villi.

ncbi.nlm.nih.gov/pubmed/266...

Good luck at the hospital.

[Lalala]

Can I ask... does gluten ataxia mean constant problems with balance.

For years I've had short-lived episodes of suddenly losing my balance. I fall to one side or other - it's not constant which direction. But it's over quickly and I'm ok again. I've never seen about it.

I'm not coeliac, but am gluten intolerant

[Penel in reply to Lalala]

Losing balance can have different causes, often inner ear problems. I suffer from benign positional vertigo from time to time. Good idea to talk to your doctor about your symptoms.

[fbirder in reply to Penel]

Yup, I agree - see your doc. If necessary you can ask for a referral to a neurologist and get some nerve conduction and electromyography tests done.

[Lalala]

Thank you

[Frodo]

Just found this: jnnp.bmj.com/content/74/9/1...

Quote: "Our second aim was to provide further evidence, by studying patients with gluten ataxia but without enteropathy, that the nervous system can be the sole target organ of an immune mediated disease triggered and perpetuated by the ingestion of gluten."

Also interested in this personally as I have had intermittent balance/GI issues etc attributed to migraine, and so no referral or concern from Drs. Improvement after several years GF diet. Still sometimes lurch sideways slightly but not so that most people would notice. Further improved with B12.

*Just read the whole thing - OMG. Serious implications.

[fbirder in reply to Frodo]

Yes, serious implications if it's not treated. It's why I'm really hoping that my ataxia is caused by gluten as all (all!) I have to do is give up bread and beer (two of my most favouritest things) and stop eating out (apart from my local pub and Pizza Express).

I've been checking my genes and it turns out that I have HLA-DQ2.5 and HLA-DQ8 which means I'm more likely to be gluten sensitive.

[Frodo in reply to fbirder]

It is a big deal going gluten free so ideally it's good to have a definite diagnosis.

FYI re. bread (my favourite food) I've found that Schar Wholesome white loaf when toasted tastes closest to real bread, and better still they do frozen rolls which you heat in the oven and are very nice. You can also get gluten free beer now too. And Meridian do a yeast extract with salt which tastes better than marmite.

[mistydawnh in reply to Frodo]

Yes, Schar is the best bread so far. Hang in there.

[fbirder in reply to fbirder]

Fantastic news on the beer front - thehouseofperoni.com/en-gb/... - GF Peroni Nastro Azzzurro!

[Marz]

massgeneral.org/doctors/doc...

You may find the work of this guy in the above link of interest. Also Dr Datis Kharrazian. His last book - Why Isn't My Brain Working ? - is a good read and each chapter is well referenced for further research. On reading his book it was the push I needed to give up gluten in order to reduce thyroid anti-bodies - and yes it has worked - but is still a work in progress. I must point out that the book is not just about the Thyroid. However people with Hashimotos are more susceptible to brain issues - including ataxia. I googled Hashimotos and Ataxia PubMed - and several research papers appeared. Could be worth a read.

As we often read - one auto-immune condition may pre-dispose you to others. I remember you mentioning you had had your thyroid checked - but were not sure of the results. Could be worth considering in order to rule it out as a possible player in the ataxia issue. Diabetes is as you know also linked to auto-immunity. As few Docs seem able to interpret Thyroid results it may be worth posting them on Thyroid UK for those that do know to comment. A TSH in a healthy person is around 1.5 - The FT4 and FT3 needs to be in the upper quarter of the range. Anti-bodies - Anti-TPO and Anti-Tg would also need to be tested to eliminate Hashimotos - although like PA - having Zero or low anti-bodies can happen in the case of Hashimotos. Perhaps a Thyroid scan is needed ?

I have ataxia - is it B12 - Gluten - Hashimotos - ? Who knows - so I tackle all three to the best of my ability. There is an on-line Summit for Auto-Immune issues starting on Wednesday hosted by Dr Tom O'Bryan - who hosted the Gluten Summit a couple of years ago. Prof Yeheuda Schoenfeld is an expert in Auto-Immunity and will be speaking along with 80+ others. He is at the Mount Sinai Hospital.

Hope all went well with the Neurologist.

ncbi.nlm.nih.gov/pmc/articl...

[fbirder in reply to Marz]

Just finished with the neurologist at University College Hospital and he said he doesn't think gluten neuropathy is real.

[Marz in reply to fbirder]

Good news for you .... so maybe have a read of the book I suggested above. Or check out those Thyroid anti-bodies ..... Always good to eliminate things in order to discover the root cause ....

[AnnaP2016]

I think I have Gluten Ataxia. I am 30 and had a sudden onset of ataxia and dysarthria in August this year. My attacks are very episodic and are likely to be triggered by environmental factors. The symptoms are controlled when I am on very strict GF diet but flared up whenever I have snacks that do not have GF symbol or food from non-100% GF restaurants. Now I am very careful with what I eat and mostly bring my lunch box to work. Symptoms are worse at night when I've used up my brain power. I am tested positive for AGA IgA, but not tTG2, so I guess I am NCGS and not celiac. Had to do the blood tests privately as the doctors at the A&E did not investigate into the possibility of gluten ataxia. MRI is normal at the stage. If I ingest gluten from likely cross-contamination, I will lose my speech and motor coordination from 2 hrs to 12 hrs after eating the food. My ataxia came suddenly and I never had motor issues in the past. I understand a lot of people experience gradual deterioration of motor issues but that is not the case with me. At the moment I am still waiting to see a neurologist at UCLH although Adult Ataxia Centre seems to have messed up with my appointment now I am in a limbo as no one seems to know who is in charge of my case... I have sensitivity to sun light and movements sometimes. My symptoms are worse at night and in darkness. I find myself walking better with eyes closed in the dark than with eyes opened... Self generated speech can be terrible even if I know what I wanna say...Would love to know how others get on with their Gluten Ataxia and what I should expect in terms of progression of this disease... It'd be nice to have a separate community for Gluten Ataxia from the general Celiac. I have moderate gastro symptoms but the most debilitating symptom is ataxia.