I don't want to eat gluten to get tested

[Russ H]

Do you have a reference for this? All the advice I have seen suggests 10% or lower for first degree relatives.

[Wheatwacked]

The retrospective study, to be published in Mayo Clinic Proceedings in September, found that 44% of screened first-degree relatives had celiac disease. Of those patients, 94% had symptoms that were not classic or had no symptoms at all.  Mayo Clinic study calls for screening of family members of celiac disease patients August 22, 2019

[Russ H]

That was a retrospective study. They trawled the records looking for first degree relatives who were tested for coeliac. It found that 44% of first degree relatives who were tested for coeliac disease had the condition, not that 44 % of all first degree relatives had the condition. Most first degree relatives are not tested and there is a strong bias to test those who are symptomatic i.e. are more likely to have the condition. This is why the ratio is much higher than the generally accepted figure of 10%.

[trents]

1 hour ago, Russ H said:

That was a retrospective study. They trawled the records looking for first degree relatives who were tested for coeliac. It found that 44% of first degree relatives who were tested for coeliac disease had the condition, not that 44 % of all first degree relatives had the condition. Most first degree relatives are not tested and there is a strong bias to test those who are symptomatic i.e. are more likely to have the condition. This is why the ratio is much higher than the generally accepted figure of 10%.

Russ H, as I recall from that study, half of those first degree relatives who were tested were asymptomatic.

[Wheatwacked]

6 hours ago, Wheatwacked said:

44% of screened first-degree relatives had celiac disease. 94% had symptoms that were not classic or had no symptoms at all.

We could add to the mix that while only 1% of the population are diagnosed with Celiac Disease, 10% of the population are diagnosed with Non Celiac Gluten Sensitivity and the jury is still out whether NCGS is a precurser to Celiac. That raises the percentage to 11% that have serious problems with Gluten. And that doesn't include the people with Gluten Sensitivity who are misdiagnosed and die that way.

Edited January 30, 2023 by Wheatwacked

[Russ H]

9 hours ago, trents said:

Russ H, as I recall from that study, half of those first degree relatives who were tested were asymptomatic.

Yes, but some studies indicate that up to 90 % of coeliac cases are undiagnosed (rather than half), which suggests bias in the selection.

https://journals.lww.com/jpgn/Fulltext/2007/10000/Ninety_Percent_of_Celiac_Disease_Is_Being_Missed.23.aspx

 

[trents]

15 minutes ago, Russ H said:

Yes, but some studies indicate that up to 90 % of coeliac cases are undiagnosed (rather than half), which suggests bias in the selection.

https://journals.lww.com/jpgn/Fulltext/2007/10000/Ninety_Percent_of_Celiac_Disease_Is_Being_Missed.23.aspx

 

From the study you linked:

"Inasmuch as ALSPAC is an observational study based on analysis of anonymous samples, these children could not be individually identified and referred for confirmatory biopsy and treatment."

Huge difference here in methodology between the study you linked and the one Wheatwhacked and I refer to. The one WW and I refer to confirmed the presence of celiac disease in the core group and in their first degree relatives by biopsy.

[Russ H]

15 minutes ago, trents said:

From the study you linked:

"Inasmuch as ALSPAC is an observational study based on analysis of anonymous samples, these children could not be individually identified and referred for confirmatory biopsy and treatment."

Huge difference here in methodology between the study you linked and the one Wheatwhacked and I refer to. The one WW and I refer to confirmed the presence of celiac disease in the core group and in their first degree relatives by biopsy.

Other studies comparing serological prevalence with diagnostic prevalence suggest only 1 in 7 to 1 in 8 cases are diagnosed.

https://cks.nice.org.uk/topics/coeliac-disease/background-information/prevalence/

[trents]

When try that link, this is what I get:

CKS is only available in the UK

The NICE Clinical Knowledge Summaries (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories.

CKS content is produced by Clarity Informatics Ltd (trading as Agilio Software | Primary Care). It is available to users outside the UK via subscription from the Agilio | Prodigy website.

Older studies put the incidence of active celiac disease in first degree relatives at about 10%. From what I can tell, two large studies done in the past year and a half or so are pegging it much higher. I can remember when the estimate of celiac disease in the general population was 1 in 5000. But it has kept going up and up as knowledge has increased and diagnostic procedures have improved. Maybe we are seeing the same phenomenon in first degree relative incidence of celiac disease.

[Russ H]

7 minutes ago, trents said:

When try that link, this is what I get:

CKS is only available in the UK

The NICE Clinical Knowledge Summaries (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories.

CKS content is produced by Clarity Informatics Ltd (trading as Agilio Software | Primary Care). It is available to users outside the UK via subscription from the Agilio | Prodigy website.

Older studies put the incidence of active celiac disease in first degree relatives at about 10%. From what I can tell, two large studies done in the past year and a half or so are pegging it much higher. I can remember when the estimate of celiac disease in the general population was 1 in 5000. But it has kept going up and up as knowledge has increased and diagnostic procedures have improved. Maybe we are seeing the same phenomenon in first degree relative incidence of celiac disease.

Sorry, I didn't realise that. How ridiculous.

[Russ H]

This study in Norway suggests that 3 out of 4 people with coeliac disease are undiagnosed:

https://www.nature.com/articles/s41598-022-16705-2

[trents]

33 minutes ago, Russ H said:

This study in Norway suggests that 3 out of 4 people with coeliac disease are undiagnosed:

https://www.nature.com/articles/s41598-022-16705-2

That's no surprise - given the huge amount of ignorance surrounding celiac disease, even in the medical community. That's why it typically took a decade or longer for many of us participating in this forum to have gotten a diagnosis.

Edited January 31, 2023 by trents

[knitty kitty]

Free published peer reviewed papers are here...

https://pubmed.ncbi.nlm.nih.gov

[Russ H]

21 hours ago, knitty kitty said:

Free published peer reviewed papers are here...

https://pubmed.ncbi.nlm.nih.gov

Yes,  accessing research can be difficult, especially considering that most of it is publicly funded.

[Bill K]

On 1/28/2023 at 10:54 AM, Lynne Marie said:

Thanks Trent! 

You are right, I didn't really ask a question 😂

I thought about it for a moment, and I think my post is a mixture of self pity (because I want to get tests done but I don't want to eat gluten - which is not helpful) and hope (that maybe someone will tell me there is a great solution to this quandary -there probably isn't) 

I can see now that this isn't really the best use of resources and getting to a solution.

I think, if I could reframe my question I would ask: What would YOU do? I just don't know how important it is to find out what's going on vs. eating gluten. 

About the MCAS (Mast Cell Activation Syndrome) and histamine intolerance: oh my goodness! I think you might be onto something... 😳 It all sounds a bit familiar and currently very relevant. Thank you!

 

I have a very similar history.  I've been diagnosed celiac, but my new doctor wants to do a new gluten exposure test to confirm it's not just a sensitivity.  I will never willingly ingest gluten again.  The change in my health has been extraordinary since giving up gluten.  I was taking so many GI pills and still had breakthrough reflux.  I'm off all GI meds.  My neurological symptoms are getting better.  I still have additional non-gluten related food sensitivities.  I am type 2 diabetic and am now down to just metformin  as my A1C continues to drop after getting off gluten (more than 2 whole points).  I'm just about at the 2 year mark now.  In researching my food sensitivities, I came across an article on histamine foods.  I have Ehlers-Danlos Syndrome (aEDS, a genetic type confirmed by the lab) which often is associated with Mast Cell Activation and I note that many of the foods I avoid due to experience are on the high histamine scale, so I think MCAS is a possibility for many other food sensitivities.  I get some relief by taking benadryl every day and am searching for a specialist who understands MCAS.  Trying to find out what was wrong with me has been a life-long obsession.  I just wanted to understand why I felt so bad.  It's a journey.  Going gluten-free made a major difference for me.  I had been so depressed and was just waiting to die, but now I feel so much better.  Listen to your body and try avoiding high histamine foods and see if it makes a difference.  There are some I can tolerate.  But most of my food intolerances are on the high histamine list.  Good luck.  It's a journey.

[GfreeOH]

22 hours ago, Bill K said:

I have a very similar history.  I've been diagnosed celiac, but my new doctor wants to do a new gluten exposure test to confirm it's not just a sensitivity.  I will never willingly ingest gluten again.  The change in my health has been extraordinary since giving up gluten.  I was taking so many GI pills and still had breakthrough reflux.  I'm off all GI meds.  My neurological symptoms are getting better.  I still have additional non-gluten related food sensitivities.  I am type 2 diabetic and am now down to just metformin  as my A1C continues to drop after getting off gluten (more than 2 whole points).  I'm just about at the 2 year mark now.  In researching my food sensitivities, I came across an article on histamine foods.  I have Ehlers-Danlos Syndrome (aEDS, a genetic type confirmed by the lab) which often is associated with Mast Cell Activation and I note that many of the foods I avoid due to experience are on the high histamine scale, so I think MCAS is a possibility for many other food sensitivities.  I get some relief by taking benadryl every day and am searching for a specialist who understands MCAS.  Trying to find out what was wrong with me has been a life-long obsession.  I just wanted to understand why I felt so bad.  It's a journey.  Going gluten-free made a major difference for me.  I had been so depressed and was just waiting to die, but now I feel so much better.  Listen to your body and try avoiding high histamine foods and see if it makes a difference.  There are some I can tolerate.  But most of my food intolerances are on the high histamine list.  Good luck.  It's a journey.

Bill, your story sounds all too familiar to me! I have had multiple food allergies since I was 21 years old (I am 45 now). I was diagnosed with hEDS by a geneticist just this past November. I apparently had a Beighton Scale of 9/9 at 45 years old - and of course my Brother and his daughter also have hEDS. My Celiac diagnosis followed in late January of this year after I had the Celiac Gene pairs some back positive from Mayo Clinic, and the EGD confirmed Vili flattening. I know the allergist as of late has mentioned MCAS, but, we really haven't went any further with the diagnostic testing as I know it's quite intense. We are just monitoring Tryptase levels after bad "flare ups" at the moment. I was approved for the Xolair injection, but, I am too afraid to take it because I had a anaphylactic reaction to the in-office allergy shots years ago. Just wanted to hop on and say hello to another fellow Celiac Zebra:) Our health woes are definitely a lifetime journey of learning and adapting:) 

[knitty kitty]

Welcome to the forum, @Bill K!  Hello, @GfreeOH.

I've had Mast Cell Activation Syndrome and Histamine Intolerance.  

I supplemented with Thiamine Vitamin B 1 (and the rest of the eight B vitamins and minerals).  Thiamine helps keep Mast Cells from releasing their histamine (degranulation).  Vitamin C and B12 help the body clear histamine.  

Metformin is a drug known to cause Thiamine deficiency.  Metformin blocks the Thiamine transporters, special doorways which allow thiamine into the cells.  If Thiamine cannot get into the cells, the cells cannot function properly.  

I have Type Two Diabetes and was on Metformin and suffered with Thiamine deficiency.

Most diabetics are thiamine deficient.  In diabetes, more Thiamine is excreted by the kidneys.  The pancreas uses lots of Thiamine to make insulin.  Thiamine and Vitamin D helps the body become more sensitive to insulin (reduces insulin resistance).

I adopted the AutoImmune Protocol diet and chose low histamine foods.  

Supplementing with extra Thiamine and following the AIP diet has allowed me to control my diabetes with diet and I no longer need medication for high blood glucose.  

You may find this study interesting...

Mast cell interactions with the nervous system: relationship to mechanisms of disease

https://pubmed.ncbi.nlm.nih.gov/9184654/

Hope this helps!

[GfreeOH]

11 hours ago, knitty kitty said:

Welcome to the forum, @Bill K!  Hello, @GfreeOH.

I've had Mast Cell Activation Syndrome and Histamine Intolerance.  

I supplemented with Thiamine Vitamin B 1 (and the rest of the eight B vitamins and minerals).  Thiamine helps keep Mast Cells from releasing their histamine (degranulation).  Vitamin C and B12 help the body clear histamine.  

Metformin is a drug known to cause Thiamine deficiency.  Metformin blocks the Thiamine transporters, special doorways which allow thiamine into the cells.  If Thiamine cannot get into the cells, the cells cannot function properly.  

I have Type Two Diabetes and was on Metformin and suffered with Thiamine deficiency.

Most diabetics are thiamine deficient.  In diabetes, more Thiamine is excreted by the kidneys.  The pancreas uses lots of Thiamine to make insulin.  Thiamine and Vitamin D helps the body become more sensitive to insulin (reduces insulin resistance).

I adopted the AutoImmune Protocol diet and chose low histamine foods.  

Supplementing with extra Thiamine and following the AIP diet has allowed me to control my diabetes with diet and I no longer need medication for high blood glucose.  

You may find this study interesting...

Mast cell interactions with the nervous system: relationship to mechanisms of disease

https://pubmed.ncbi.nlm.nih.gov/9184654/

Hope this helps!

Very interesting Knitty. I will have to check into this:) I do not have Diabetes that I know of, but, my Grandfather died in his 70's from Adult-Onset Diabetes complications. I have always had low blood sugar episodes. Had a 5 hour fasting blood sugar test when I was 19 ish, and I just remember them cutting it off at hour 4 because my blood sugar was in the 40's. They set me up with a dietician who said eat protein every time you have sugar, and eat every two hours. No follow-up since. Gotta love the medical field:) I will specifically look into Thiamine, and the AIP diet. Sounds like it could be very beneficial! 

[Bill K]

On 2/9/2023 at 7:49 AM, GfreeOH said:

Bill, your story sounds all too familiar to me! I have had multiple food allergies since I was 21 years old (I am 45 now). I was diagnosed with hEDS by a geneticist just this past November. I apparently had a Beighton Scale of 9/9 at 45 years old - and of course my Brother and his daughter also have hEDS. My Celiac diagnosis followed in late January of this year after I had the Celiac Gene pairs some back positive from Mayo Clinic, and the EGD confirmed Vili flattening. I know the allergist as of late has mentioned MCAS, but, we really haven't went any further with the diagnostic testing as I know it's quite intense. We are just monitoring Tryptase levels after bad "flare ups" at the moment. I was approved for the Xolair injection, but, I am too afraid to take it because I had a anaphylactic reaction to the in-office allergy shots years ago. Just wanted to hop on and say hello to another fellow Celiac Zebra:) Our health woes are definitely a lifetime journey of learning and adapting:) 

Good to hear from you.  Yes, I go from one issue to another.  I'm in the sweet spot between flares right now, so I feel good, but having issues with my eyes.  But had a strong reaction to lactulose solution that they gave me for a breath test.  I was in bed for two days afterwards.  I was having symptoms when I left the office after the two hour test, but by the time I got home I went right to bed.  My stomach swelled up so much I looked pregnant.  It's always something.  I have had reactions to so many drugs.  So many drugs (pain killers and anesthesia, especially) don't work as intended.  I've woken up during surgery four times (2 endoscopies and 2 sinus surgeries), so I don't ever like to consider medical procedures.  Truly it's a journey.  Best of luck.

[Bill K]

On 2/9/2023 at 9:28 PM, knitty kitty said:

Welcome to the forum, @Bill K!  Hello, @GfreeOH.

I've had Mast Cell Activation Syndrome and Histamine Intolerance.  

I supplemented with Thiamine Vitamin B 1 (and the rest of the eight B vitamins and minerals).  Thiamine helps keep Mast Cells from releasing their histamine (degranulation).  Vitamin C and B12 help the body clear histamine.  

Metformin is a drug known to cause Thiamine deficiency.  Metformin blocks the Thiamine transporters, special doorways which allow thiamine into the cells.  If Thiamine cannot get into the cells, the cells cannot function properly.  

I have Type Two Diabetes and was on Metformin and suffered with Thiamine deficiency.

Most diabetics are thiamine deficient.  In diabetes, more Thiamine is excreted by the kidneys.  The pancreas uses lots of Thiamine to make insulin.  Thiamine and Vitamin D helps the body become more sensitive to insulin (reduces insulin resistance).

I adopted the AutoImmune Protocol diet and chose low histamine foods.  

Supplementing with extra Thiamine and following the AIP diet has allowed me to control my diabetes with diet and I no longer need medication for high blood glucose.  

You may find this study interesting...

Mast cell interactions with the nervous system: relationship to mechanisms of disease

https://pubmed.ncbi.nlm.nih.gov/9184654/

Hope this helps!

Thanks - Before my celiac diagnosis, I was on a lot of GI meds.  They didn't work.  I knew that metformin made it difficult to absorb vitamins and some meds, so I would take the metformin at different times to help my body absorb nutrients.  Well, going gluten-free fixed that.  I got off all the GI meds, got rid of my sleep ramp, and stopped having constant head and ear aches.  My problem was with B6 and B12 and D mostly.  I had sufficient thiamin.  But the high histamine foods are an issue, so I've been suspecting MACS, especially since I also have EDS and it is often present at the same time.  Thank you so much for your insight.  I was able to stop taking farxiga, and if I can get my blood sugar down a bit more, I'll be able to reduce the metformin.  Thank you again.  

[knitty kitty]

@Bill K 

I take Benfotiamine, a fat soluble form of Thiamine Vitamin B 1.  I'm Type Two Diabetic, too.  Most (up to 90%) diabetics are thiamine deficient.  In Diabetes, more thiamine is lost through the kidneys and urine than non-diabetics.  

The pancreas uses a great deal of thiamine to make insulin.  Thiamine helps make digestive enzymes.  Thiamine helps with gastroparesis, too.  Benfotiamine has been studied and shown to promote intestinal healing.  

Taking Benfotiamine has helped me keep my blood glucose levels stable and lowered my A1C to 4.9!    

Metformin blocks the Thiamine transporters through which thiamine enters the cells.  You can have "normal" blood levels of Thiamine, but still have a functional thiamine deficiency because the Thiamine cannot get into the cells with Metformin blocking the transporters.  An Erythrocyte Transketolase test will measure the functional activity of Thiamine containing enzymes and gives a better picture of how much Thiamine is actually being utilized. 

Benfotiamine is lipid based and can merge with the lipid layer of the cells' exteriors and get into the cells that way.  

I'd much rather take a vitamin, a "vital amine", what our bodies are designed to utilize, than a pharmaceutical with detrimental effects.  I had a horrible time on Metformin.  

Thiamine also helps keep Mast Cells from degranulating (releasing histamine).  Thiamine helps calm the immune system.  

Vitamin D at levels about 80 nmol/l  increases insulin sensitivity.  Vitamin D helps calm and regulate the immune system.

Vitamin B 12, pyridoxine, riboflavin and Vitamin C work together to clear histamine.  

Keep us posted on your progress!

Glad to help!

[Bill K]

20 hours ago, knitty kitty said:

@Bill K 

I take Benfotiamine, a fat soluble form of Thiamine Vitamin B 1.  I'm Type Two Diabetic, too.  Most (up to 90%) diabetics are thiamine deficient.  In Diabetes, more thiamine is lost through the kidneys and urine than non-diabetics.  

The pancreas uses a great deal of thiamine to make insulin.  Thiamine helps make digestive enzymes.  Thiamine helps with gastroparesis, too.  Benfotiamine has been studied and shown to promote intestinal healing.  

Taking Benfotiamine has helped me keep my blood glucose levels stable and lowered my A1C to 4.9!    

Metformin blocks the Thiamine transporters through which thiamine enters the cells.  You can have "normal" blood levels of Thiamine, but still have a functional thiamine deficiency because the Thiamine cannot get into the cells with Metformin blocking the transporters.  An Erythrocyte Transketolase test will measure the functional activity of Thiamine containing enzymes and gives a better picture of how much Thiamine is actually being utilized. 

Benfotiamine is lipid based and can merge with the lipid layer of the cells' exteriors and get into the cells that way.  

I'd much rather take a vitamin, a "vital amine", what our bodies are designed to utilize, than a pharmaceutical with detrimental effects.  I had a horrible time on Metformin.  

Thiamine also helps keep Mast Cells from degranulating (releasing histamine).  Thiamine helps calm the immune system.  

Vitamin D at levels about 80 nmol/l  increases insulin sensitivity.  Vitamin D helps calm and regulate the immune system.

Vitamin B 12, pyridoxine, riboflavin and Vitamin C work together to clear histamine.  

Keep us posted on your progress!

Glad to help!

I am taking this to my endocrinologist who I see tomorrow.  Very helpful.  Thank you!

[Rick Sanchez]

On 1/30/2023 at 8:32 PM, trents said:

When try that link, this is what I get:

CKS is only available in the UK

The NICE Clinical Knowledge Summaries (CKS) site is only available to users in the UK, Crown Dependencies and British Overseas Territories.

CKS content is produced by Clarity Informatics Ltd (trading as Agilio Software | Primary Care). It is available to users outside the UK via subscription from the Agilio | Prodigy website.

Older studies put the incidence of active celiac disease in first degree relatives at about 10%. From what I can tell, two large studies done in the past year and a half or so are pegging it much higher. I can remember when the estimate of celiac disease in the general population was 1 in 5000. But it has kept going up and up as knowledge has increased and diagnostic procedures have improved. Maybe we are seeing the same phenomenon in first degree relative incidence of celiac disease.

Get a VPN   They're just still mad because we threw out all that good tea.