Russ H

There has been some success with creating a tTG2 inhibitor.

Quote

Here, we sought to assess the efficacy of ZED1227 in preventing gluten-induced mucosal damage at the transcriptomic level. Remarkably, a 100-mg daily dose of ZED1227 inhibited virtually all gluten-induced transcriptomic changes (Fig. 1b,c). Active celiac disease is accompanied by compromised enterocyte maturation, crypt hyperplasia due to the expansion of transit-amplifying cells41,42,43, immune cell infiltration44,45 and decreased expression of duodenal transporters13,46,47. GSZ23 scores based on published single-cell databases22 clearly indicated that TG2 inhibition efficiently blocked all aforementioned gluten-induced intestinal manifestations in individuals with celiac disease (Fig. 2d).

https://www.nature.com/articles/s41590-024-01867-0

It would be interesting to look at populations that have never been exposed to gluten.

Lactose-free milk is readily available in the UK.

https://www.tesco.com/groceries/en-GB/shop/fresh-food/milk-butter-and-eggs/milk/lactose-free-milk

I experienced memory problems, brain fog and anxiety. Gradually faded on a gluten free diet and came back with a vengeance when I resumed eating gluten for testing.

The paper is currently freely available:

Characterizations of a neutralizing antibody broadly reactive to multiple gluten peptide:HLA-DQ2.5 complexes in the context of celiac disease

It would normally be diagnosed by a combination of endoscopy and biopsy findings combined with blood tests for coeliac disease related antibodies.

Beers particularly for Sweden?

Speaking as someone who has lived in Sweden for several years on different occasions, Sweden is an absolute nightmare for people with coeliac disease. The whole of Scandinavia is bad but Sweden is the worst. It is just Lutheran culture - you are burden on society, and they don't care. Italy is fantastic, they worship food. France, Germany good. Amazingly, UK good because of food regulations. I haven't been to Ireland for some time but I think they would be good. Spain, not so sure - I found the food pretty primitive·

23 hours ago, cristiana said:

"Patients with iron deficiency anemia - Affects approximately 1 in 31 celiac disease patients"

When I asked a doctor recently if my father could be tested, I was told, words to the effect, 'no point' as he was not iron anaemic it was unlikely he had coeliac disease.  But this study would seem to indicate otherwise.

However, I am truly astounded this figure is so low, I really thought the figures would be higher.  I am sure all my coeliac friends were anaemic prior to diagnosis.

Yes, that sounds wrong. According to the UK's NICE it is estimated that 3% of men and 8% of women have iron deficiency anaemia.

Also, there are many other conditions caused by coeliac disease that they don't include: central and peripheral neuropathies, cardiac arrhythmia, chilblains, androgen resistance.

It can take several years to fully recover. It is also a very trying condition due to the dietary restrictions. I was diagnosed 2.5 years ago and am still recovering. I didn't realise how ill I had been and for how long. As I started to recover, it hit me and I felt really sorry for myself and grieved over the lost decades of quality life. For people who have been ill for decades, the recovery process and dietary and consequent social restrictions can be traumatic. Lots of people on this forum have been through it. It can be tough but you will get better.

Have you been followed up medically - to verify that your coeliac antibodies have returned to the standard range and also that you don't have any vitamin deficiencies?

On 10/16/2023 at 11:39 AM, cristiana said:

This is a very interesting article but I am afraid I don't understand some of the terminology.

For anyone who can, are they saying here that if a coeliac mother has a baby, the baby has a 11-14 per cent chance of having coeliac disease?   I've read so many differing statistics. 

The one that has been bandied about here in the UK is that there is a 1 in 10 chance of a coeliac parent having a child that develops coeliac disease - but I don't know if that still stands?

That study showed 7 of 62 children had coeliac disease, which is 11%. However, that is a small sample so there is considerable uncertainty in the figure. If I remember my stats, the standard deviation will be the square root of 7, so the actual value is likely between 7% and 15%.

Wheat allergy may involve an allergic reaction to gluten - the proteins present in wheat. It is absolutely possible to be allergic to gluten. Coeliac disease is not an allergic response to gluten, it involves a different immune response.

https://www.anaphylaxis.org.uk/fact-sheet/wheat-allergy/

2 minutes ago, Phyllis Stempinski said:

Thank you.. Helpful to mention B vitamins.  I will see to getting a micro and macro vitamin assay again.  Passed except for vitamin D level several years ago

I think it is worth taking a good multivitamin for coeliac disease.

2 hours ago, Phyllis Stempinski said:

Thanks for sharing.  I feel bad for your having IBS since childhood.  At least someone figured out your celiac issue.  So scary thinking how easily you can be served something at a restaurant that can get you so sick.  I don't know if I can do the severe diarrhea and vomiting at the same time for several hours and survive.  Had cardiac arrhythmia the last 2 times.  Fi gers crossed for both of us.

Symptoms vary greatly between people both in spectrum and severity. Some people seem to be able to tolerate very occasional ingestion of large amounts of gluten without symptoms, other people become very ill with even trace amounts. I had a cardiac arrhythmia and wore a 24 hour monitor several times to try to get to the bottom of it but it has disappeared since I was diagnosed and went gluten-free. I haven't had a follow-up ECG, but I don't have any symptoms. I used to get almost painful ectopic beats and occasional fluttering sensation.

15 minutes ago, Guest Allergy va not tolerated said:

First ingredient  on some Hidden Vally Ranch mix is 'maltodextrin'. It does not indicate if from corn or wheat, so not considered safe for gluten  intolerance. 

Maltodextrin is gluten-free:

https://www.coeliac.org.uk/frequently-asked-questions/can-i-eat-maltodextrin/

So if coeliac disease is a cause of migraines, it is not due to shared genetic predisposition but a consequence of coeliac disease itself - perhaps an indication of gluten-induced-neuropathy. I used to get several migraines a year but haven't had one in 2 years since my diagnosis.

It refers to data presented at https://ddw.org/ . Possibly a poster presentation although I can't find it anywhere. The author is interviewed in the link below and suspects that problems could be related to non-adherence to a strict gluten-free diet.

https://www.hcplive.com/view/jansson-knodell-treating-pregnant-women-celiac-disease

Isolated positive DGP-IgG has very poor predictive value for coeliac disease in adults. It is useful in infants.

I do the same thing. Mercifully, I don't go into anaphylaxis as some people do if exposed to allergens, but on the other hand don't know whether I have been exposed enough to provoke an immune response and all the sequelae that involves. Apart from a handful of local places that I know are safe, I don't eat out. I got badly glutened several times in Sweden and just don't risk it. Some countries are a nightmare due to the culture. Certainly, I would never trust an airline to provide safe food.

3 hours ago, Peteymoz said:

please show those studies then from fda cdc or nih. rfk may not be a scientist but that does not mean the things he says should be ignored or marginalized 90% of the people commenting on this site are not scientists but there comments and advice have helped countless people with celiac improve there illness and quality of life so not being a scientist but talking about science issues does not mean your wrong or conspiracy theorist. 🙄

People here a posting rigorous scientific consensus backed information. Kennedy is not.

On 6/22/2023 at 2:42 PM, Peteymoz said:

Robert F Kennedy jr said its probably caused by Glyphosate..... interesting that as i never read anything linking the two but a quick search finds a few articles on nih website this website and others, i said childhood vaccines as they do cause problems for most people and affect people differently so just my thought that they could cause a problem that over time if made worse through poor health/diet/lifestyle triggers celiac to start.

I doubt that very much. Robert F Kennedy jr. has no scientific or medical qualifications and promotes conspiracy theories and anti-vaccine propaganda. Childhood vaccines do not cause problems for most people - they are thoroughly tested and monitored and are very safe. It is not known what triggers coeliac disease.

The allegation that glyphosphate causes coeliac disease comes from a nonsensical publication in the journal Interdisciplinary Toxicology. One of the authors is an 'independent scientist', the other a computer scientist. No actual evidence is presented.

I got myself a bread machine and found a good recipe based upon gluten-free oat flour amongst other ingredients. It uses psyllium husk to replace the gluten and the result is just like wheat bread.

https://www.glutenfreealchemist.com/gluten-free-bread-machine-recipe-bread-maker/

Would be interesting to see whether vaccination against Strep. pneumoniae affects incidence of coeliac disease. In the UK, it has been given to infants since 2006 so I suppose any affect would have shown up by now.

I don't doubt your symptoms or reaction to gluten. It would be nice to have blood work to narrow it down as there is a whole spectrum of gluten related disorders.

You obviously had very bad symptoms and I am glad you are on the mend. You might not have coeliac disease though. You may have an inflammatory bowel condition that is antagonised by gluten. Gluten is highly immunogenic. Many people with active coeliac disease develop extreme intolerances to foods in addition to gluten. Milk is a common example. Milk used to make me extremely ill - much worse than gluten, but now I can consume it without problem. I think this is because my gut has healed. I am sceptical that hookworms can treat coeliac disease because of its mechanism. It is plausible that hookworms can treat inflammatory bowel conditions. Perhaps a hookworm infection has allowed the gut to repair permitting you to tolerate gluten? This is why it would be informative to see any change in your serology. I can understand your not wanting to resume eating gluten for an endoscopy. I refused but managed to get diagnosed on my symptoms and serology.