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…

On 8/9/2024 at 12:24 AM, Mmar said:

Hello! I have been Celiac and following a strict gluten-free diet for over 20 years. I recently had an endoscopy/colonoscopy for chronic diarrhea that I’ve had for about 6 months. I was diagnosed with microscopic colitis. However, my doctor is also concerned that the endoscopy showed villous atrophy in my small intestine. This is confusing because my ttg-iga was 6.7 a few weeks ago! My doctor is sending me for more thorough labs, but I am wondering two things: 

1. is it possible that I am ingesting gluten with a ttg that low? I am very diligent, but the doctor implied that the finding was due to me ingesting gluten. 

2. Does anyone know of other things that can cause villous atrophy? I was under the impression that the ttg antibodies were what caused it, but if mine is low, what could be causing the atrophy? 
 

thank you!

Hi. Yes villous atrophy can be caused by something else. In children it is well known to be caused by milk protein and soy protein as well as gluten, in those susceptible. It can also be caused and temporary to a gut infection in some. In the context of celiac disease it’s possible you may be unknowingly ingesting gluten - and that’s always what doctors will first suspect, it only takes tiny amounts and depends on your individual sensitivity. If you eat any packaged gluten free food there was a study showing levels of gluten are present in them at varying amounts but most within the “gluten free” Codex allowance of 20 parts per million; but some above. Depending on sensitivity this may or may not be a problem for most celiacs. But for some that rely on packaged foods the dose can add up over time - think gluten-free cereal for breakfast, gluten-free sandwich for lunch, gluten-free pasta for dinner etc. Also if you’re a coffee drinker this could be a source of cross contamination of gluten - instant coffee, or coffee from an outlet depending on handling and what the machine has come in contact with. Alternative milks such as oat can be problematic in this situation. There’s cases in the UK of “glutening” because non gluten-free oat milk was used before on a machine 😳 .

If gluten free is strict and it’s not likely unknown ingestion, The other possibility is cross reactive foods. The body can recognise similar proteins/peptides similar to gluten. Casein in milk and dairy is known for this, approximately 50% of Celiacs are reported to react to milk like gluten. Then there are approximately 20% of celiacs that react to non-contaminated certified gluten free oat cereal as if gluten. There is also a study from Mexico showing maize / corn prolamins can be recognised by some celiacs as if gluten. It can be a bit of a rabbit hole and really depends on genetic susceptibility and ancestral history. The research shows different gluten peptides react with different genes (DQ2 for example is the highest risk and likely because there are far more reacting peptides than compared to DQ8 or rarer alleles).

Hopefully you are guided by your doctor to figure it out. If you consume dairy? There are a few case reports of celiac children reacting to milk as well as or instead of (milk intolerance) and villous atrophy remained until the dairy and or gluten was eliminated. Most were also asymptomatic on the gluten free diet and it was only because of repeat endoscopy and blood testing they investigated. 

On 8/8/2024 at 12:26 AM, Jordan Carlson said:

Hello everyone! I recently just had my endoscopy/colonoscopy to confirm my celiac diagnosis. I also was diagnosed with chronic gastritis. I believe it would be considered Lymphocytic Gastritis as  intraepithelial lymphocytes were present in my biopsy. But I am no doctor so please correct me if I am wrong! Anyways, looking for tips on how anyone else managed to get the gastritis under control as I am assuming that is the reason why some of my symptoms never went away even while being 100% gluten free. I have started pantoprazole 40mg daily and have been on it for about 2 weeks now. Works great at controlling my heartburn, but still get a burning sensation in my stomach after eating. Hoping someone has some advice for me. Thank you!

Sorry just getting a hang of how the forum works. My reply to Ann. is the same, and Hope is helpful to you! But should add gastrointestinal disorders EGIDs and for example chronic gastritis can benefit from figuring out the possible culprit food/s. In addition to avoiding irritating substances, spices, alcohol, tomatoes, citrus, vinegar, coffee, chocolate, milk, oil etc. keep a detailed food and drink diary and see if there are any patterns to your symptoms. The PPI meds may mask to begin but will help heal. But it’s important to do the course then slowly reduce and wean off. 

On 8/14/2024 at 8:02 PM, McNeill said:

I was diagnosed with Celiac Disease in 2007 the age of 59. I have had numerous issues with my intestines over that years since. I recently had a endoscopy that reveled that I also have esophagitis as well. Every time I eat, I had this terrible problem with my throat to where I can hardly speak clearly. I'm constantly clearing my throat.  Before I eat in the AM, my voice is fine, but as soon as I eat, I get this issue. Has anyone else had this problem? 

Thanks-Ann

Hi. I’m new to the forum. I posted on someone else’s yesterday about possible EGIDs esophagitis being the most common. I have family who sufferwith it. I too get the clogged throat but would say mildly and I manage by knowing certain things that set it off, and predominantly follow a restricted whole food diet in addition to gluten free. It can be antigen/allergen related. Keep a thorough food and drink diary and note your symptoms for at least a week if you can. It was the ENT specialist that told me this one. The gastroenterologist advised me strict gluten free diet because I was made so sick with possible coeliac disease but inconclusive as could not complete the gluten challenge for the biopsy diagnosis and I don’t have the standard high risk genes. Milk and dairy foods are the biggest culprit along with wheat. You’re gluten free so that eliminates the wheat. Avoid any possible wheat starch even if certified gluten free. It’s not suitable if sensitive to other components in wheat than gluten. Food needs to be completely wheat free not just gluten free if that makes sense? Do you eat gluten free oats? The culprit food (just one in the majority of patients sometimes two) is usually in the top six allergen groups (dairy, wheat (grains), eggs, nuts, soy, fish and shellfish), so figuring out which food is causal is the key. Keep the diary and then look for patterns. It’s well worth the effort.

Hi. Sorry to hear. I’m in the UK and have a bit of personal experience of the diagnosis of gastrointestinal disorders. Unfortunately there are many gastrointestinal disorders that can cause similar symptoms and really need to be ruled out under specialist gastroenterology care.

First of all did you have an endoscopy with the dx of reflux and nothing else? Have you been referred to a gastroenterologist/ speacialist? If not you should push for this. Most GP’s are not very knowledgeable of gastrointestinal disorders or coeliac disease. They carry out initial coeliac screening (blood test) if symptoms suggest and if the test is positive referral to hospital specialist. Alarm bells should ring when your symptoms have not gone away with PPI’s or acid reflux meds.

For example information and interest, There is a rare set of disorders called Eosinophilic gastrointestinal disorders (EGIDs). They are named based on the location of inflammation the most common one being eosinophilic esophagitis, then gastritis, then gastroenteritis and colitis. Unresponsive to meds acid reflux can be a signpost. It is usually antigen (allergic) disorder and studies show the common foods causal to be the top six allergens groups, milk, wheat, eggs, fish and seafood, nuts and soy in the majority of patients; and just one food sometimes two being culprits. Allergen testing can guide further dietary therapy if it doesn’t heal on avoidance of milk or wheat. BUT, Endoscopy and biopsies are the only way to diagnose by a knowledgeable gastroenterologist. Similar to having coeliac disease diagnosed. Get tested before cutting out foods and keep pushing for a proper diagnosis.

The website BadGut dot org covers EGIDs in detail for free info.

23 hours ago, Rageagainstthewheat said:

@Wends it sounds like you have tried everything! You must find it difficult to have a varied diet with all the food restrictions? Did you get your allergy test through your doctor? I haven’t considered an allergy funnily enough. I did an intolerance test through York Test last June which is why I gave up wheat when I did. Obviously there is no scientific evidence behind intolerance testing but after I eliminated dairy, wheat, eggs and yeast as advised my symptoms improved massively. I have not been able to reintroduce any of these foods without having issues though unfortunately. It did cross my mind that my c-section triggered celiac disease which is why I have the other intolerances now. My coeliac blood test was negative but I was told 4 slices of bread wasn’t enough to eat to get an accurate result. Before that I hadn’t had wheat for well over a year. I will have a look into the book you recommended and also look into the histamine diet as that is one I haven’t heard of. 

lol I’ve done a few elimination and reintroduction diets over a number of years!

Initially I did the York test for intolerance too, that showed milk, egg yolk and egg white, yeast and gluten. I was on a gluten free diet but not strict because of bloating and pain mostly. - I rarely had bread etc. but would eat round things so was really a low gluten diet at the time. I hadn’t been tested for Coeliac disease. I know the intolerance test can just measure exposure to foods and the IgG can go up and protect from igE allergy symptoms as shown in several studies on resolved and outgrown allergies. I was allergic to milk and eggs so very interesting to look at it that way. I did the York test for Allergies more recent, which showed wheat, rice, soya  and few others. Made sense might be why gluten free foods never really “agree” much. The GP agreed with test result. They did the allergen test available to them on the NHS - which is limited but included wheat and the pet allergens. I was meant to be referred for skin testing but not heard anything yet 🙄 . I don’t know whether I have true allergy or intolerance.

The low histamine diet really helped with my period pain and IBS a little, and there’s loads of free info available online. Dr Janice Joneja (researcher and dietitian) has the book call Histamine intolerance The complete guide.. and the Swiss Histamine interest group have guidance and a list of foods (SIGHI list available online). Foods matter dot com in the UK based have articles and free info on histamine sensitivity from Dr Joneja too. I think there’s an interview where she describes histamine sensitivity and how to test for it - the low histamine diet for one to two weeks gives quick improvement if it’s that. If not you return to normal diet. She emphasises importance of nutrient density and eating everything /variety on the allowed low histamine foods and says it’s a complete diet to follow. I take the digestive enzyme which helps too.

Keep us posted!

23 hours ago, John1 said:

Thanks for your sharing what you've learned so far, you have definitely gone deeper into the biological side of things than I have.

I emailed the company I'm looking into and they told me that they check for the following HLA alleles.

• HLA-DQA1
• HLA-DQB1
• HLA-DQ7
• HLA-DQB1
• HLA-DQ 2.2
• HLA-DQ 2.2

Any incite as to whether this is above or below what the average HLA typing checks for would very helpful.

Hi John,

yes they are the alleles currently known that are associated with risk of Coeliac disease. So a useful test to know your susceptibility, including the newer DQ7 rarer allele.

I’m personally interested in the newer HLA-DQ7, as wasn’t tested for that on the NHS; they test for the standard High Risk alleles - HLA-DQA1, HLA-DQB1 (DQ2.5 and DQ8, and the DQ2.2 which is technically half and lower risk than having two copies. I’m not a geneticist but that was my understanding of reading scientific papers on it. The higher risk is HLA-DQ2.5, followed by DQ8 alleles - as reported in Europe and the US. Hope that makes sense. I’m still learning about this myself and just starting to get my head round it so to speak. I was never satisfied with the unconfirmed diagnosis of less than 1% risk of it being coeliac disease when I was so ill on a gluten containing diet and gluten challenge. I have a science and research background and love reading journals so started to look into it. It’s quoted from a European review study that 0.7% of biopsy diagnosed coeliacs disease patients do not have the DQ2 and DQ8 high risk alleles. In an Italian study the newer DQ7 quoted to be associated in patients not having the standard alleles. In addition the DQ7 is associated with milk protein sensitivity. (Research shows about 50% of coeliacs react to milk the same as gluten. I’m waiting for more research to be done on that one!).

Good luck and hope you get answers you are looking for.

Thank you, rageagainstthewheat. Love the name by the way! I’m a lot better than I was touching wood. IBS flares still even though follow strict wheat/gluten free. I try to follow low histamine diet and carb restricted diet which seems best for me personally, but it’s taken years to figure out. There’s a lot of gluten free certified foods I cannot tolerate. I eat basic, plain, whole real food. I am better avoiding the nightshade vegetables. This was a tough one as they are prevalent as well as addictive foods - white potatoes, sweet peppers, tomatoes etc. tobacco is also related plant. I may or may not have allergy to grains and keep trialling elimination and reintroduction diets (milk, lactose, gluten free oats, egg yolk (egg and milk allergy as a child). Allergy testing did show antibodies to wheat and rice, but might be from childhood.

I hope you feel much better soon 🤗 . Sorry to hear it all started after the c section and birth. From what I’ve read of the scientific literature on autoimmune diseases the “trigger” can be the stress to the body of something like that. Did you test positive on the igA celiac blood test, after the partial gluten challenge, out of interest? As well as genetic susceptibility? If not done already it may be helpful to have an allergy blood test? True cereal allergies can cause gastrointestinal pain and IBS symptoms too as well as non-igE intolerance. My gastroenterologist said I could have wheat allergy and or non-coeliac gluten intolerance.

I can understand wanting a definite diagnosis. And I agree (especially as is the case with outgrown allergies) that foods can be reintroduced to test tolerance thresholds. I have some experience of this with egg and milk. But it’s tricky with wheat and the gluten grains because of possible autoimmune celiac disease. Then there is the case that some specialists advise against eliminating foods for too long as tolerance can be lost. This is the case with a histamine restricted diet. But there is definitely cases where allergic foods have been eliminated and successfully reintroduced (the gaps reported have been years to decades!). It can be so confusing. You need to consult your doctors and keep pushing for answers?

Out of interest the book by the late Elaine Gotschall called Intestinal Health through diet… was a great help to me personally. She was ahead of her time and went back to university in her 60s to study to find answers. She presents the specific carbohydrate diet. There are many many that have benefited from the diet including celiacs, crohns and ulcerative colitis patients. Might be worth a read if you can find a copy? I got a second hand book online.

Hi. I’m new on here too. It’s a tough one when you don’t have an absolute diagnosis. Having the gene doesnt diagnose you’re correct only points to susceptiblity So many gastrointestinal conditions can cause similar symptoms, unfortunately. It took over 15 years for my unconfirmed diagnosis, personally. I was gluten free for IBS and female health issues as recommended by nutritionist before I had heard of celiac disease. I started suffering IBS flares, and finally under the guidance of dietitian and gastroenterologist after reintroducing wheat following the low fodmap diet, many elimination diets of dairy, lactose, grains, potatoes, low histamine diet, they recommended gluten challenge to rule coeliac in or out. Couldn’t carry on with it after two weeks. Was made so sick. And lost too much weight. Horrendous IBS and fatigue, even the low fodmap version. I was given the choice to try and carry on gluten challenge before a biopsy could be done. I couldn’t do it. Had the standard gene typing rule it out, less than 1% chance of celiac disease. The gastroenterologist also a professor, still advised a strict gluten free diet because of symptoms, including low iron and folate anaemia. I was interested in the research on celiac disease having a science background, and tried to find info about the less than 1% chance. Only in the last few years have much rarer alleles associated been discovered. So the standard gene typing test is not 100%. Research is ongoing. Sorry for the long reply! Point is if you have one of the standard genes associated with celiac disease and you cannot tolerate wheat/gluten in your diet at all the gastroenterologist advice seems correct to follow. Unfortunately diagnosing celiac is not easy and straight forward most of the time - I know many coeliacs and also self dx gluten intolerants who go gluten free to be well, but many (myself included) see gluten as the tip of the iceberg, and other foods can be problematic in addition. At the end of the day it’s your choice. But consult your doctor to make sure all possibilities have been ruled out.

Hi John1.

My first reply was moderated because I mentioned a different company that test to the one you asked about. Not sure why. I’m newbie on here too! Anyway. And the one I was referring to is what lead me to research and read recent papers on Pubmed on the HLADQ7 allele, which is rarer. I’m awaiting results.

The markers are quoted from a different company, not the one you refer to (just so the first reply makes sense).

I only understand the celiac disease gene typing as referenced. And how the NHS hospital reported it. Sorry don’t know enough on how that relates to the genes beginning with rs… you list.

Hopefully you get some more replies on this one.

I’ve done quite a bit of research reading and the science is ongoing, there’s new genes associated with Coeliac being discovered. It may come down to genetic ancestry as recently HLADQ7 is a new one that is not tested for in the standard test. This may account for the less than 1% of coeliacs without DQ2 or DQ8 high risk alleles. It’s true most Northern European Coeliacs (90%) have the HLADQ2, and HLADQ8 (9%). Its fascinating research and it just reinforces the gold standard of a biopsy in diagnosis at present in the absence of the standard DQ2 and 8 typing as the less than 1% may be missed. 

According to this company, these are the full susceptible genes presently known and tested for in the extended test. They do the standard test of the 2 markers (same as NHS hospital testing, I’ve had this done) most common high risk genes, HLADQ2 and HLADQ8.

16 markers in addition to the standard ones.

DQA1*01, DQA1*02:01, DQA1*03, DQA1*05, DQA1*06, DQB1*02, DQB1*03:01, DQB1*03:02,
DQB1*03:03, DQB1*03:04, DQB1*03:05, DQB1*04, DRB1*03, DRB1*04, DRB1*07, DRB1*11

Hope that’s helpful!