Russ H

It is very common for adults to have neurological symptoms on diagnosis of coeliac disease. Most people show clinical improvement by a year, so be patient and adhere to a strict gluten-free diet. Take a good multivitamin for the first year at least.

Hi IanL,

Do you have coeliac disease, and is the bakery gluten-free?

That is interesting. UV is also used to treat psoriasis that won't respond to other treatments.

23 hours ago, lavranso4 said:

Hey, I got diagnosed with Celiac disease about some months ago. I am turning 19 and I weight like 62 kg.

 

I have what you call a «skinny fat» physique (large amount of fat on butt), I have been trying to build some muscle, I have been trying for like half a year but nothing ever grows although I am sure I eat in a calorie supplement.

 

Anyone else have a problem like this?

Hello lavranso4,

Your don't say what your sex is. It is common for men with untreated coeliac disease to experience androgen resistance where the body tissues stop responding to testosterone. Typically people will show raised blood levels of free testosterone but reduced levels of dihydrotestosterone (DHT). There may also be increased levels of luteinising hormone and hyperprolactinemia. This is reversible and goes into remission on a strict gluten-free diet. I experienced something of this nature and lost a lot of muscle, especially on my upper body. It is gradually improving for me. I was diagnosed 2 years ago but have only been strictly gluten free for 18 months.
 

Quote

The most striking endocrine findings in a study of 41 recently diagnosed men with celiac disease was increased plasma testosterone and free testosterone index, reduced dihydrotestosterone (testosterone’s potent peripheral metabolite), and raised serum lutenizing hormone, a pattern of abnormalities indicative of androgen resistance. As jejunal morphology improved, hormone levels returned to normal.

https://natural-fertility-info.com/wp-content/uploads/BastArticle.pdf

I suspect that women might also experience similar androgen resistance but because their natural testosterone levels are lower, the effect is less marked.

Maintain a strict gluten-free diet, I would take a good multivitamin for the first year at least, and make sure you are getting enough protein.

8 hours ago, unicornflakes said:

Interesting! I’ve never come across this as one of the perks going gluten-free  

It is quite common to experience neurological symptoms with coeliac disease, particularly anxiety and short term memory problems. I used to drink in the same way as it provides rapid relief from the symptom of anxiety.

11 hours ago, unicornflakes said:

Anyone here familiar or had an experience of celiac diagnosis relating to globulin / eosinophils level? It’s very challenging for me to be granted a celiac testing in my country, they only allow for a basic screening first. Is globulin of 43 and albumin of 42 normal? Is eosinophil 4.2 normal? Can any of this be an indicator of celiac?

How do you mean basic screening? The basic test for coeliac disease is a blood test for IgA tTG2 antibodies. If you have chronic gastrointestinal symptoms, that should be reason enough for a test. Without units and the lab reference range it is not possible to evaluate the results you have supplied. I assume it is grams per litre, so it is high normal for globulin, normal for albumin. Assuming eosinophils is x109/L, then that is significantly raised.

There is an association between coeliac disease and IgE mediated food allergy.

https://journals.lww.com/jpgn/Abstract/2023/01000/Celiac_Disease_Frequency_Is_Increased_in.9.aspx

It does not seem well understood currently. Have you looked at things like shower gel, shampoo and clothes washing detergent? I have become quite allergic to certain brands and come up in a rash if I use them.

4 hours ago, Scott Adams said:

@Peteymoz you are correct about the level of under 20ppm as the allowed limit, but most large companies in Europe, for example Schar, make their products in dedicated facilities and there would be zero or close to zero detectable gluten in their products. If they ever detected, for example, 18ppm, it would likely set off a panic where they would need to go through their entire supply chain to figure out how it happened, because if they go over 20ppm their products would be recalled because of safety concerns, which could cost them millions.

Is it possible that you are sensitive to xanthan gum, or other gums used in gluten-free products?

Yes, and this is a contributing factor to why gluten-free bread is so expensive - restricted supply chain, testing and small volumes. Apart from xanthan gum, some gluten-free breads use psyllium, and most use rice flour. It is more likely a reaction to one of these than gluten contamination.

On 5/1/2023 at 7:27 AM, theParaplegicCeliac said:

Hi y’all. 
This August I was diagnosed with celiacs disease after becoming paralyzed from the chest down from transverse myelitis. I was additionally severely malnourished due to lack of villi. I’m getting better, the GI team thinks celiacs was clearly the cause of the transverse myelitis because it was caused by an autoimmune process. The neurology team is full of imbeciles who don’t think celiacs is a big deal and still think my case is idiopathic. Are all non-GI doctors imbeciles who don’t think celiacs disease is a big deal? Or are there some non-imbecilic doctors? Idk what they teach in the doctor schools, but it’s mostly bias. I had pericarditis a year earlier and had abnormal autoimmune markers in my blood. And I went to a rheumatologist and told him my aunt had celiacs and he said “nope that couldn’t cause this” & sent me on my way. And now I’m paralyzed  so happy insurance/me had to pay for their wonderful services. 

I did a quick search and found a couple of cases of transverse myelitis associated with coeliac disease, so it is not unheard of. I had a heart arrhythmia that has gone since I was diagnosed. I also used to get bad chilblains, which are also associated with autoimmune antibodies. How are you getting on?

On 4/28/2023 at 6:35 PM, Moviegeek13 said:

My IGa came back slightly low, 

0.63     range 0.7 - 4.0

According to UK NICE guidelines for coeliac disease, IgA deficiency is defined as total IgA less than 0.07 g per litre. Yours are not low enough to affect the result by this guidance. What leads you to suspect that you may have coeliac disease?

Isolated IgG DGP antibodies are not very specific for coeliac disease. In people under the age of 18, has a positive predictive value (PPV) of about 3% The small study below estimates a PPV of between 2.3% and 51.8% in adults (the large uncertainty is due to the small size of the study).

https://celiacdiseasecenter.columbia.edu/wp-content/uploads/2018/12/Diagnostic-Yield-of-Isolated-Deamidated-Gliadin-Peptide-Antibody-Elevation-for-Celiac-Disease.pdf

Yes, but it isn't clear when the tests and diet were performed and how strict the diet was.

Just now, nutritionguy said:

Russ, you state " Rice makes me bloat and burp despite a strict gluten-free diet".  Out of curiosity, does that statement apply to white rice, brown rice, or both?

I only have brown rice in the cupboard.

On 3/3/2023 at 9:38 PM, bechari said:

Symptoms are ataxia, pins and needles all over body, also in face, slightly slurred speech, feeling of impending doom, being really tired,

There are 3 overlapping conditions with a similar aetiology: coeliac disease, dermatitis herpetiformis and gluten induced neuropathy (aka gluten ataxia). You can have them together or individually. They all involve making antibodies to a class of enzymes in the body called tissue transglutaminase (tTG). Classical coeliac disease involves making antibodies to tTG2, dermatitis herpetiformis involves making antibodies to tTG3, and gluten induced neuropathy to tTG6. You have symptoms of neuropathy and it is quite possible that you have antibodies only to tTG6 but not tTG2, and so you are not testing positive. You might also have what is called non-coeliac gluten sensitivity (NCGS), which also causes neurological signs & symptoms. Most tests revolve around tTG2 or deamidated gliadin (DGP) antibodies, so it is difficult to get tested for tTG6 outside specialist centres. This is not a diagnosis, but a possible explanation. I don't know about the rice. Gluten causes the gut to become permeable in susceptible individuals allowing otherwise tolerable proteins to cause problems. Rice makes me bloat and burp despite a strict gluten-free diet.

In the end, if you can't get diagnosed but a gluten-free diet helps your symptoms then stick with it.

Hi yiannis and welcome to the forum. I haven't visited Belgium for many years. I can recommend the app "Find Me Gluten Free" - it is available for Android and iPhone. It is free but you can pay a subscription to unlock extra features. For an example of places available in Ghent, have a look at this link. I must say, Belgium looks excellent for gluten-free food.

Find Me Gluten Free - Ghent, Belgium

41 minutes ago, Scott Adams said:

California grown rice has much less arsenic than rice grown in other areas of the US:

https://www.ewg.org/foodscores/content/arsenic-contamination-in-rice/#:~:text=Rice varieties grown in California,depending on the food type.

 

Soaking rice overnight and cooking in 5x volume of water removes 82% of the arsenic.

https://www.bbc.co.uk/programmes/articles/2F1MDzyW55pg97Tdpp7gqLN/should-i-be-concerned-about-arsenic-in-my-rice

Rice is the biggest source of arsenic in the human diet. There are some steps to mitigate the risk from arsenic in rice: choose Indian basmati rice rather than US grown rice (some of the US rice growing areas are heavily contaminated with arsenic from cotton growing days). Soak the rice over night, rinse and then cook 6x rice volume of water. However, this loses some of the water soluble vitamins. The arsenic is concentrated in the rice germ, so white rice has less arsenic than brown rice. The problem is, you can't do this with rice flour as you don't know where the rice came from and can't soak and rinse it. Therefore I try to limit my rice flour consumption as I eat so much of it.

So more likely to become hospitalised but no more likely to require or ICU. In the UK, people with coeliac are not considered an at-risk group. Earlier in the pandemic, they were considered immunocompromised due to the possibility of hyposplenia, but this is no longer the case.

It is the best gluten-free bread I have had in the UK. Maybe not as good as what you would get from a small bakery but better than cheap supermarket bread.

That recipe you referenced looks good. Also rice flour free. I am trying to moderate the amount of rice I eat due to arsenic.

That looks good, too. If you are a perfectionist, Heston Blumenthal's recipe is below. You can probably get the preparation time down to a few days if you work at it.

https://www.youtube.com/watch?v=Zr3Rrzrv8vU

1 hour ago, shadycharacter said:

According to this link, some flexibility is allowed in some EU countries because of the war. 

https://www.foodnavigator.com/Article/2022/06/06/Ukraine-war-food-reformulation-and-labelling-What-is-your-legal-status?utm_source=copyright&utm_medium=OnSite&utm_campaign=copyright

 

But only ingredients that won't harm the consumer. Allergens must be marked. I am unaware of the UK doing anything similar.

3 minutes ago, Emma84 said:

Okay well there should at least be some damage then even if it’s not extreme 

The amount to eat and for how long:

https://www.youtube.com/watch?v=byTYmgHUDEo

The Mayo clinic says 2 slices of bread a day for 6-8 weeks prior to blood test and just 2 weeks prior to endoscopy. It is probably enough. I have seen testing centres recommending from 4 weeks all the way up to 12 weeks prior to blood testing.

15 minutes ago, shadycharacter said:

 I’ve read elsewhere that because of the war in Ukraine, the food industry sometimes have to use alternative ingredients that don't necessarily show up on the list of ingredients on the packaging. 

That would be illegal.

https://www.food.gov.uk/business-guidance/packaging-and-labelling

It is quite possible to have coeliac disease with negative or equivocal blood results. Make sure you keep eating gluten up to the endoscopy. In the UK, NICE recommends eating at least one gluten containing meal a day for 6 weeks prior to the endoscopy although they don't recommend how much gluten.

Do you have other symptoms?