Diagnosed only 3 days ago with coeliac disease :-( Gliodan antibodies high and duodenal biopsies showed ‘subtotal villous atrophy’. Have done abrupt withdrawal from gluten and I honestly feel worse now off gluten than I did on it :-(

[Ailish]

Diagnosed 3 days ago. Glioden antibodies high and duodenal biopsies showed ‘ subtotal villous atrophy’ 😞 did abrupt withdrawal from gluten and honestly feel worse off it than I did on it. Tummy swollen and sore 😞 feel overwhelmed trying to decide on gluten free food at every meal! Any advice for a newbie? 

[trents]

Welcome to the forum, Ailish!

Some of our forum members have reported "gluten withdrawal" symptoms when first quitting gluten. Also, it can take quite a while to catch on to the many places gluten can be found, not only in the food supply but in medications and supplements. Recent studies have shown that most people who believe they are eating gluten free are actually practicing a  lower gluten diet than before. They have cut out major sources of gluten such as bread and pasta but are getting glutened by cross contamination or through unexpected sources. Would you expect wheat to be in canned tomato soup? It is. In soy sauce? In most brands it is. In chocolate syrup? In some brands it is. In pills? It sometimes is. And eating in restaurants is a minefield for celiacs since the kitchen staff handles, stirs, cuts the gluten free foods with hands and utensils that are also being used on things with wheat. They may boils those gluten free noodles in the same pot of water they just boiled regular wheat noodles. Stuff like that.

[cristiana]

I agree, Trents. 

Hello Ailish!

I too felt quite unwell and continued to do so post coming off gluten - but things did improve when I got the hang of the diet etc.   Before I ask you a few questions, here's a great link which I believe will help you.

Are you still eating dairy products?  If so, this may be contributing to the bloating and pain as your villi will be damaged and therefore you will be less able to digest lactose, as lactase, which breaks it down, is found in the tips of the villi.   Try going dairy free for a few weeks to see if that helps.  As your gut heals, you should be able to reintroduce dairy little by little.  However, that said, you may find that you can eat hard cheeses during this time as they are low in lactose.

Are you still eating oats?  Oats contain a protein called avenine which about ten percent of coeliacs cannot tolerate,  giving us similar symptoms to those we get when we consume gluten, although thankfully the majority of us can consume them.  To find out if you are one of the minority, you may wish to follow the advice we are given in the UK:  coeliacs are advised to give up oats completely for the first six months of going gluten free then reintroduce them to see if we have any symptoms.  Importantly, however, whether you do this or not, from now on you must only buy pure oats, which are oats grown and processed in an environment which is free of other gluten containing grains.   

I would recommend keeping a food diary and you should soon begin to identify a pattern emerging of foods that don't sit well with you at the moment.   I was in a lot of pain like you for a while after going gluten free.   I drastically reduced yoghurt, milk and soft cheese for a while (high in lactase), gave up oats (which ironically never hurt before I went gluten free) and I gave up lentils and soya products, which hurt my stomach.   Out of all these foodstuffs oats are the only ones I still cannot eat.

I hope some of this helps.

 

Edited September 4, 2021 by cristiana

[Ailish]

38 minutes ago, trents said:

Welcome to the forum, Ailish!

Some of our forum members have reported "gluten withdrawal" symptoms when first quitting gluten. Also, it can take quite a while to catch on to the many places gluten can be found, not only in the food supply but in medications and supplements. Recent studies have shown that most people who believe they are eating gluten free are actually practicing a  lower gluten diet than before. They have cut out major sources of gluten such as bread and pasta but are getting glutened by cross contamination or through unexpected sources. Would you expect wheat to be in canned tomato soup? It is. In soy sauce? In most brands it is. In chocolate syrup? In some brands it is. In pills? It sometimes is. And eating in restaurants is a minefield for celiacs since the kitchen staff handles, stirs, cuts the gluten free foods with hands and utensils that are also being used on things with wheat. They may boils those gluten free noodles in the same pot of water they just boiled regular wheat noodles. Stuff like that.

Thanks Trents, I have cut out all obvious gluten abruptly like bread, pasta etc. I haven’t braved eating out yet. I hadn’t thought about the cross contamination in restaurants in as much detail but will from now on. I’m hoping my tummy symptoms will calm down soon 

[trents]

The studies that I referred to above also concluded that most of the subjects who claimed to be gluten free but were not were still dining out. Eateries appear to be the biggest threat to otherwise conscientious celiacs.

[Ailish]

39 minutes ago, cristiana said:

I agree, Trents. 

Hello Ailish!

I too felt quite unwell and continued to do so post coming off gluten - but things did improve when I got the hang of the diet etc.   Before I ask you a few questions, here's a great link which I believe will help you.

Are you still eating dairy products?  If so, this may be contributing to the bloating and pain as your villi will be damaged and therefore you will be less able to digest lactose, as lactase, which breaks it down, is found in the tips of the villi.   Try going dairy free for a few weeks to see if that helps.  As your gut heals, you should be able to reintroduce dairy little by little.  However, that said, you may find that you can eat hard cheeses during this time as they are low in lactose.

Are you still eating oats?  Oats contain a protein called avenine which about ten percent of coeliacs cannot tolerate,  giving us similar symptoms to those we get when we consume gluten, although thankfully the majority of us can consume them.  To find out if you are one of the minority, you may wish to follow the advice we are given in the UK:  coeliacs are advised to give up oats completely for the first six months of going gluten free then reintroduce them to see if we have any symptoms.  Importantly, however, whether you do this or not, from now on you must only buy pure oats, which are oats grown and processed in an environment which is free of other gluten containing grains.   

I would recommend keeping a food diary and you should soon begin to identify a pattern emerging of foods that don't sit well with you at the moment.   I was in a lot of pain like you for a while after going gluten free.   I drastically reduced yoghurt, milk and soft cheese for a while (high in lactase), gave up oats (which ironically never hurt before I went gluten free) and I gave up lentils and soya products, which hurt my stomach.   Out of all these foodstuffs oats are the only ones I still cannot eat.

I hope some of this helps.

 

Thanks Cristiana,

I had yoghurt with gluten free granola for breakfast and sour cream in guacamole at lunchtime- so maybe it is the lactose causing havoc. I’m also vegetarian which makes my diet even more restricted. I’m not eating oats due the risk involved for coeliac disease. Would you advise OTC digestive enzymes to aid in the transition? Wondering how long before abdominal distension eases? Thanks in advance:-) A

2 minutes ago, trents said:

The studies that I referred to above also concluded that most of the subjects who claimed to be gluten free but were not were still dining out. Eateries appear to be the biggest threat to otherwise conscientious celiacs.

Will definitely keep that in mind. Thank you 

[trents]

It usually isn't the lactose that's the issue with dairy for celiacs. It's the protein casein found in dairy products. For some people, it can cause villi blunting like gluten does. Digestive enzymes are generally not helpful for celiacs. A good substitute for oats is buckwheat. Highly nutritious and delicious, IMO. Buckwheat is related to rhubarb and is not related to wheat.

https://smile.amazon.com/dp/B00QKXVAN2?ref=nb_sb_ss_w_as-ypp-rep_ypp_rep_k2_1_7&crid=113244XHLKAWR&sprefix=anthony

 

Also, because of villi blunting, you may be experiencing vitamin and mineral deficiencies. That is especially likely if you are a vegetarian. I would suggest investing in a gluten-free high potency multivitamin and a high potency B-complex. Costco's Nature Made brand is a good choice. I would look at adding to that some D3 and magnesium.

Edited September 4, 2021 by trents

[cristiana]

1 hour ago, trents said:

It usually isn't the lactose that's the issue with dairy for celiacs. It's the protein casein found in dairy products. For some people, it can cause villi blunting like gluten does. Digestive enzymes are generally not helpful for celiacs. A good substitute for oats is buckwheat. Highly nutritious and delicious, IMO. Buckwheat is related to rhubarb and is not related to wheat.

 

 

 

That's really interesting, Trents, I didn't know that.  Mind you, for some reason I could tolerate casein but milk, yoghurt etc went right through me.  (Sorry - TMI!)  Maybe my casein consumption explains why I have taken longer to heal than I'd expected.

[trents]

Whoops, typo. Let me correct it: 

"The studies that I referred to above also concluded that most of the subjects who claimed to be gluten free but were not were still dining out. Eateries appear to be the biggest threat to otherwise conscientious celiacs.

Edited September 4, 2021 by trents

[trents]

9 minutes ago, cristiana said:

That's really interesting, Trents, I didn't know that.  Mind you, for some reason I could tolerate casein but milk, yoghurt etc went right through me.  (Sorry - TMI!)  Maybe my casein consumption explains why I have taken longer to heal than I'd expected.

Casein is the primary protein in dairy so I'm not sure what you are saying here. Whey is another protein found in dairy but seems not to cause problems like casein does for some people.

[fllstuart77]

does Lactose free cheese have Casein?

[cristiana]

Sorry Trents, I misunderstood what you said.

Just for clarity fflstuart77, here's a helpful post about temporary lactose intolerance from Coeliac UK. 

https://www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/lactose-intolerance/

[trents]

"does Lactose free cheese have Casein?"

Lactose is the sugar component in dairy. Casein is the largest protein fraction in dairy. Removing the lactose does not affect the protein.

Just for the sake of clarity, celiacs can be lactose intolerant but what I am saying is don't assume that is the issue. It could also be casein intolerance. If you use lactose free dairy products and your symptoms improve then I would conclude it was the lactose causing problems.

Edited September 4, 2021 by trents

[Oldturdle]

5 hours ago, Ailish said:

Thanks Cristiana,

I had yoghurt with gluten free granola for breakfast and sour cream in guacamole at lunchtime- so maybe it is the lactose causing havoc. I’m also vegetarian which makes my diet even more restricted. I’m not eating oats due the risk involved for coeliac disease. Would you advise OTC digestive enzymes to aid in the transition? Wondering how long before abdominal distension eases? Thanks in advance:-) A

Will definitely keep that in mind. Thank you 

Ailish, welcome to this wonderful, informative website!  Most everything you will ever want to know about celiac disease and the gluten free diet can be found by researching right here.  I just want to say, that as a fairly new diagnosed celiac,  I have had great results with the Gliadenx enzymes that are available from a vendor who advertises on this site.  As I understand it, each Gliadinx capsule will neutralize gluten equivalent to the amount contained in 1/4 slice of bread.  This enzyme capsule is used when there is a possibility of cross contamination.  I take one or two with my meal when eating gluten free choices in restaurants, and have never had a problem.

[Oldturdle]

26 minutes ago, Oldturdle said:

Ailish, welcome to this wonderful, informative website!  Most everything you will ever want to know about celiac disease and the gluten free diet can be found by researching right here.  I just want to say, that as a fairly new diagnosed celiac,  I have had great results with the Gliadenx enzymes that are available from a vendor who advertises on this site.  As I understand it, each Gliadinx capsule will neutralize gluten equivalent to the amount contained in 1/4 slice of bread.  This enzyme capsule is used when there is a possibility of cross contamination.  I take one or two with my meal when eating gluten free choices in restaurants, and have never had a problem.

My mistake!  Gliadinx claims one capsule will neutralize the glutin equivalent to 1/8 of a slice of bread.

[GodsGal]

9 hours ago, Ailish said:

Diagnosed 3 days ago. Glioden antibodies high and duodenal biopsies showed ‘ subtotal villous atrophy’ 😞 did abrupt withdrawal from gluten and honestly feel worse off it than I did on it. Tummy swollen and sore 😞 feel overwhelmed trying to decide on gluten free food at every meal! Any advice for a newbie? 

Hi Ailish!

I remember how overwhelmed I felt when I first started out. It does get easier. There is a lot of good advice in these replies! 

Have you been able to find any support groups in your area? Do you know anyone else who has celiac disease that you can talk to? Are you able to talk to a counselor? Talking to other people who have celiac and a counselor has really helped me as I have adjusted to my new way of living. I'm 18 months into my diagnosis. And I am still learning. 

It also really helped my skin when I started using gluten free soaps, detergents, shampoos, and conditioners. Gluten can also be found in cosmetics and pet foods.

Shared kitchen items (i.e. pots, pans, dishes, utensils, cutting boards, toasters) can be a major source of gluten contamination. Also, have you changed your toothbrush?

Be gracious with yourself and the people around you. It is an adjustment for everyone. There will be times when you will make mistakes. Going gluten free is a huge learning curve. Sometimes I still get a little panicked. I think that is pretty common. So, take a moment to breathe. Cry if you need too. Believe me, I've shed a few tears myself.

Another thing that has really helped me has been this website. Sharing my experiences and reading about other people's experiences is a bit therapeutic. And the information is amazing.

You can do this, my friend! Keep us posted!

 

[Ailish]

19 hours ago, Oldturdle said:

Ailish, welcome to this wonderful, informative website!  Most everything you will ever want to know about celiac disease and the gluten free diet can be found by researching right here.  I just want to say, that as a fairly new diagnosed celiac,  I have had great results with the Gliadenx enzymes that are available from a vendor who advertises on this site.  As I understand it, each Gliadinx capsule will neutralize gluten equivalent to the amount contained in 1/4 slice of bread.  This enzyme capsule is used when there is a possibility of cross contamination.  I take one or two with my meal when eating gluten free choices in restaurants, and have never had a problem.

I’ve ordered them online too 🙂

[docaz]

Hi,

I have become aware of this thread and I am actually the one who developed the GliadinX formulation because two of my children are celiac. 

I am in the biotech field and when my children were diagnosed, I did an extensive literature search and found the preliminary studies with AN-PEP and met with Luppo Edens who developed AN-PEP and with Frits Koning at Leiden University who did the preliminary work. Please feel free to go on Google Scholar and you will find many publications.

Here is one of the initial studies comparing various enzymes. Many do not break down gliadin in small enough segments to detoxify gluten. AN-PEP has shown to break down the proline bindings of gliadin in segments of less than 9 amino acids and thus being very effective.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452362/

 

This is by the way the publication from the University of Chicago that suggests that GliadinX can detoxify 1/8 of a slice of bread (which is actually quite a big amount).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6024684/

There is also an ongoing double blind placebo study in Argentina evaluating the effect of GliadinX. Unfortunately, Covid is slowing down the study.

https://clinicaltrials.gov/ct2/show/NCT04788797

Unfortunately, many GI and celiac specialists are completely unaware of the work with AN-PEP and out of ignorance do not recommend it for their patients to address contamination. It is all available for everybody to read. This is not to allow to eat gluten or to heal celiac disease  but is only a "crutch" because there is nothing else on the market that has as many studies as AN-PEP. There are few other enzymes such a Latiglutenase (at the Mayo Clinic), KumaMax and a Gluteguard that are being actively studied but none of them is available yet. Once a cure will be found, all these are going to be obsolete but until then, these can help with the constant anxiety when eating out or eating at homes of friends and family.

 

[cristiana]

13 minutes ago, docaz said:

Hi,

I have become aware of this thread and I am actually the one who developed the GliadinX formulation because two of my children are celiac. 

I am in the biotech field and when my children were diagnosed, I did an extensive literature search and found the preliminary studies with AN-PEP and met with Luppo Edens who developed AN-PEP and with Frits Koning at Leiden University who did the preliminary work. Please feel free to go on Google Scholar and you will find many publications.

Here is one of the initial studies comparing various enzymes. Many do not break down gliadin in small enough segments to detoxify gluten. AN-PEP has shown to break down the proline bindings of gliadin in segments of less than 9 amino acids and thus being very effective.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4452362/

 

This is by the way the publication from the University of Chicago that suggests that GliadinX can detoxify 1/8 of a slice of bread (which is actually quite a big amount).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6024684/

There is also an ongoing double blind placebo study in Argentina evaluating the effect of GliadinX. Unfortunately, Covid is slowing down the study.

https://clinicaltrials.gov/ct2/show/NCT04788797

Unfortunately, many GI and celiac specialists are completely unaware of the work with AN-PEP and out of ignorance do not recommend it for their patients to address contamination. It is all available for everybody to read. This is not to allow to eat gluten or to heal celiac disease  but is only a "crutch" because there is nothing else on the market that has as many studies as AN-PEP. There are few other enzymes such a Latiglutenase (at the Mayo Clinic), KumaMax and a Gluteguard that are being actively studied but none of them is available yet. Once a cure will be found, all these are going to be obsolete but until then, these can help with the constant anxiety when eating out or eating at homes of friends and family.

 

Hi Docaz

Is it possible to buy this in the UK, and if so, can you give me the UK supplier details?

Cristiana

[docaz]

4 minutes ago, cristiana said:

Hi Docaz

Is it possible to buy this in the UK, and if so, can you give me the UK supplier details?

Cristiana

At this time, there are no UK distributors and GliadinX can be shipped from the US to the UK. Unfortunately, the shipping costs are a bit expensive ($9) and the shipping time is about 3 weeks. 

Kind Regards

[fllstuart77]

I doubt there will ever be a cure if there isn't even medication over the last 80 years

nobody cares because there's no money in curing something that is treatable with gluten free

[docaz]

23 minutes ago, fllstuart77 said:

I doubt there will ever be a cure if there isn't even medication over the last 80 years

nobody cares because there's no money in curing something that is treatable with gluten free

There might be hope because there is active research. For example, there was a quite extensive and expensive vaccine trial (Nexvax2) but unfortunately, it did not work. There is also a study with monoclonal antibodies that was just recently posted on this site-see below.

One of the obstacles to finding a cure is the fact that success and failure take a very long time to be determined because of the slow response of the body to gluten and gluten free diet. It takes weeks and even months to see if something is successful or not and it is very hard to completely control the diet for such a long time or to subject a volunteer for such a long time to a gluten-challenge. Fortunately, it appears that certain interleukins are much earlier detected during a gluten challenge and these could help finding a cure much faster than just by evaluating the standard celiac panel or intestinal biopsies. 

Many people think that research is all about money and indeed, to some extent it is true but there are plenty of clinicians who are truly interested finding a cure either because they happen to be very attached to their profession or even just to get their name recognized. Obviously, there is need for funding and the NIH provides grants for promising work and so does the private sector. 

 

 

 

[cristiana]

1 hour ago, docaz said:

At this time, there are no UK distributors and GliadinX can be shipped from the US to the UK. Unfortunately, the shipping costs are a bit expensive ($9) and the shipping time is about 3 weeks. 

Kind Regards

Thank you for letting me know.  It is quite appealing nonetheless as currently I hardly dare eat out...  I used to get glutened so often and now my symptoms are so bad I feel it isn't worth it.  This could be a wonderful way of getting some freedom back.

[fllstuart77]

9 bucks isn't expensive!

 

eating out isnt an option.. unless its a dedicated gluten free place..    you will get gluten if you eat from gluten free menus often

[docaz]

35 minutes ago, fllstuart77 said:

 

eating out isnt an option.. unless its a dedicated gluten free place..    you will get gluten if you eat from gluten free menus often

This is exactly the problem. The moment you go to place that has also gluten, your chance of being exposed to gluten is quite high and every study has confirmed this.

If you have a family with kids who want to have a social life and spend time with other kids or you have to go to a business meeting or just eating at grandmother's house for a holiday, you are risking to be exposed to gluten.  Avoiding these situations puts you and your family complete social isolation and that can be pretty tough and maybe even more challenging than celiac disease itself. 

Also, if you are in a more rural area or in a country that does not have adequate resources, you might not have a dedicated gluten-free restaurant or bakery. 

For this reason, experts are actually looking into calling it "gluten-restriction" rather than "gluten-free" diet since they recognize that only very few people can live a life without any risk of exposure. It appears that if the exposure is rare enough, the effects are manageable but since we do not know how often is "rare enough" one should be cautious.

https://www.glutenfreeliving.com/gluten-free-foods/diet/is-a-truly-gluten-free-diet-possible/

This is the reason, why I worked on GliadinX to help maintaining a gluten-free diet and I know for sure that my kids have been exposed to gluten but their blood levels have stayed within the normal range for 8 years. For disclosure, they did not have a follow up endoscopy and some clinicians suggest that this would be a more adequate test but they are completely asymptomatic.  Of course, a sample of two is not enough information to extrapolate for everybody but hopefully the ongoing study with 80 volunteers will shed more light on the efficacy of GliadinX.