Cross Reactivity Confusion

[Ennis-TX]

41 minutes ago, Fbmb said:

I can definitely deal with intolerances and allergies. They need to be dealt with. And I definitely think that people should stay away from foods that their bodies don't like, because why keep eating things that make you feel like crap? But the idea that drinking coffee could be causing my immune system to freak out and attack my intestine and do damage to me like gluten does was just mind blowing to me - and honestly, really upsetting. It makes me feel relieved to know that it doesn't work that way.

Yeah food sensitivities are random, and can go away with time as your gut heals. I used to react to sesame seeds/oil, pea protein, and a few others that THANKFULLY went away with time and healing. Coffee is one of those acidic foods, that can be a bit harsh, if you have damaged gut, it could cause inflammation for awhile and require a low acid, decaf version or to give it up for a few months at least. Some sensitivities/intolerance never went away but are better avoided anyway.

On a fun note I tried giving up coffee once and changed to a brewed cocoa bean beverage. Same concept as coffee, ground beans brewed in a french press.....I still use them as a topping for desserts, meals, sometimes just chew them like snuff. Crio Bru was the name...I still order the 5lb bags when they go on sale.

[Posterboy]

On 7/8/2018 at 9:47 PM, Martin Shipinkoski said:

Also apples cause me itching but I think that's due to the natural yeast that's on them. If I eat them peeled, then I don't have a reaction.

Martin,

You probably have an Oral Allergy Syndrome or OAS for short.

Because you peeled your apple you removed the Pollen on the outside.

See this Verywell article on OAS.

https://www.verywellhealth.com/melon-allergy-82834

Also see this American College of Allergy link about this topic.

https://acaai.org/allergies/types/food-allergies/types-food-allergy/oral-allergy-syndrome

Melons (especially) cantaloupes often are carries of E.Coli etc. because of their rough skins attract dirt in their crevices and apparently pollen too that can be hard to wash off and why when we cut into the melon small pollen grains can be carried inside the cantaloupe contaminating the flesh. And setting of your reaction to pollen you have just unwittingly consumed.

according to the verywell site this are common OAS correlated/connected allergies:

quoting

"Other common correlations include:

• Birch pollen: apple, almond, carrot, celery, cherry, hazelnut, kiwi, peach, pear, plum
• Grass pollen: celery, melons, oranges, peaches, tomato
• Ragweed pollen: banana, cucumber, melons, sunflower seeds, zucchini"

And this explains your symptoms very well (no pun intended).

I have an nephew who has this reaction to Pineapple.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

[Fbmb]

On 7/8/2018 at 8:46 AM, kareng said:

There is no science to this nonsense that our body sees coffee as gluten and reacts with an antibody response.  The company that first started this nonsense to sell “lab tests” actually admitted that they tested people using some instant coffee that was found to contain gluten.  But people love  a good conspiracy theory and to pretend to be experts on the internet and spread nonsense on forums.  

 

https://www.cureceliacdisease.org/faq/whats-with-all-the-talk-about-certain-types-of-food-causing-cross-reactivity/

 

kareng, do you think the same can be said for all of the foods on that list? Is cross reactivity an unfounded myth in general, or just when it comes to some things? What about corn and rice? Still no?

[kareng]

2 hours ago, Fbmb said:

kareng, do you think the same can be said for all of the foods on that list? Is cross reactivity an unfounded myth in general, or just when it comes to some things? What about corn and rice? Still no?

Read the link?  

[ch88]

I have done research on the topic.  I agree that the idea of cross reactivity is a myth. 

The vast majority of people with Celiac disease are able to heal their gut by by eliminating gluten from there diet. If they don't recover on a gluten free diet it is called refractory Celiac disease. My understanding though is that refractory Celiac disease is very rare. If other foods caused cross reaction it would be very common.

Other foods sensitivities can be serious though in some cases. There are autoimmune disorders that are linked to other food sensitivities besides gluten.  How the body and the immune system work is complex. Many things can cause digestive trouble. If food moves through the digestive system to quickly there is not enough time to absorb vitamin b12. I can see why other foods, besides gluten, might be a problem for some people for this reason and for other reasons. 

 

 

[Fbmb]

4 minutes ago, kareng said:

Read the link?  

Thanks.

[Fbmb]

From my gastroenterologist: 

 

"I am not familiar with this, but there are many theories out there about celiac. I am comfortable that continuing to eat corn, rice, millet, coffee, and dairy should not worsen celiac disease. The last two could be associated with abdominal symptoms, but not dangerous."

[knitty kitty]

Have you heard of Mast Cell Activation Syndrome?  The Patient Celiac wrote about it in her blog and explains it well.

https://www.ncbi.nlm.nih.gov/pubmed/27619824

Vitamin D helps tame mast cells.  Get your vitamin D level up!  Levels between 70 and 100 nmols are much better for you. 

https://www.ncbi.nlm.nih.gov/pubmed/29971262

Try a low histamine diet!  

Hope this helps! 

[knitty kitty]

Found this study that looked at Sjogren's syndrome and food sensitivities.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676776/#!po=28.2609

[Martin-0123]

On 7/11/2018 at 2:30 AM, Posterboy said:

Martin,

You probably have an Oral Allergy Syndrome or OAS for short.

Because you peeled your apple you removed the Pollen on the outside.

See this Verywell article on OAS.

https://www.verywellhealth.com/melon-allergy-82834

Also see this American College of Allergy link about this topic.

https://acaai.org/allergies/types/food-allergies/types-food-allergy/oral-allergy-syndrome

Melons (especially) cantaloupes often are carries of E.Coli etc. because of their rough skins attract dirt in their crevices and apparently pollen too that can be hard to wash off and why when we cut into the melon small pollen grains can be carried inside the cantaloupe contaminating the flesh. And setting of your reaction to pollen you have just unwittingly consumed.

according to the verywell site this are common OAS correlated/connected allergies:

quoting

"Other common correlations include:

• Birch pollen: apple, almond, carrot, celery, cherry, hazelnut, kiwi, peach, pear, plum
• Grass pollen: celery, melons, oranges, peaches, tomato
• Ragweed pollen: banana, cucumber, melons, sunflower seeds, zucchini"

And this explains your symptoms very well (no pun intended).

I have an nephew who has this reaction to Pineapple.

I hope this is helpful but it is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

Sir, I appreciate your help but my reaction to the ingested melon had nothing to do with my oral cavity. It simply caused overall itching. I appreciate your efforts in explaining but I'm not allergic to pollen either and have never had hay fever. 

Quoting the Bible is useless. It doesn't say anything on celiac disease, therefore it's irrelevant in today's time. You either save yourself or you die. I know I prayed to God when living undiagnosed and doctors dismissed everything (I live in a developing country) so if it hadn't been for my own research, I'd probably be in a worse state than now. God hates celiacs and celiacs aren't too fond of him either I think. All the best!

[Posterboy]

Martin,

I think you might be confusing the doctors for God.

Many on this site often (third world or not) have had to find out/research what the doctor's didn't know about Celiac disease.

I am lucky/was lucky enough to not be my doctor's first Celiac/NCGS patient.

The horror stories are many  . . . .too many to tell.

I was in my 30's before I received like you my NCGS diagnosis 'unofficially' through a blood test. . . because the "(g)old standard is by bisopy proven . . .which can almost kill you before you get an "official diagnosis"

But positive is positive! with our without biopsy in my mind.

see this dr. hyman article about it.

https://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

quoting

"We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease"

And I think most doctor's are so busy cataloging diseases that they often don't  consider the continuum (spectrum of disease) that is often related but diagnosed as separate diseases (too often) today.

Consider IBS it is a different "official diagnosis" but actually on the celiac/NCGS spectrum.

see this article about it.

https://www.celiac.com/celiac-disease/large-number-of-irritable-bowel-syndrome-patients-sensitive-to-gluten-r3442/

I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “

This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition.

Most/many on this forum think IBS means "I.Be.Stumped".

That said continuing on the GI spectrum of problems when I stoked up my digestive fires I found my digestion improved considerably.

Stresses in life drain/maim (surgeries, car accident, trauma etc.) us because we use up or energy reserves faster than our body can replenish them.

And our stomach acid often becomes low (in my opinion) lowering our ability to digest proteins anymore.

How do we know this or can we????

we know stress is common before a celiac diagnosis.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/stress-common-before-celiac-diagnosis-r2930/

treating my low stomach acid helped by replacing/treating my self with powdered stomach acid I could now digest (better) the proteins (lactose etc.) that were now setting off auto-immune reactions because my stomach acid had become too low causing heartburn, IBS, NCGS and probably in time my 'unoffical' celiac  diagnosis.

Can we know this . . .this is only an hypothesis on my part.  . .taking BetaineHCL makes  it a working theory if you try it and it works. . . for you the way it did for me to help my NCGS.

Remember I said NCGS and NOT Celiac disease.. .. and it might only be IBS you have since your diagnosis is not "official".

Here is my story.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

Maybe it will help and maybe it won't but you won't know unless you try  . .. and you can't do what you don't know and why I share.

Also see this thread that talks more about these issues . ... especially the cross connectivity part of this thread/issue/topic.

https://www.celiac.com/forums/topic/121915-the-way-it-really-is/?tab=comments#comment-993383

we know this is "the way it is really is" in my opinion because we have documented case studies where strong stomach acid  helps us control/low allerginic potentially of food proteins.

see this research entitled "The effect of gastric digestion on food allergy."

Note this research is 10+ years old and it  hasn't made it down the clinical/doctor's levels even in the US.

https://www.ncbi.nlm.nih.gov/pubmed/16670517

quoting

"Moreover, the importance of gastric digestion was also proven for food-allergic patients, as the allergenicity of allergens were reduced up to a 10,000-fold by gastric digestion."

And newer research confirms it in my mind.

See this medicalnewstoday article.

https://www.medicalnewstoday.com/articles/321624.php

quoting

"Baking soda "prompts" the stomach to produce more gastric acid, which allows it to digest food quicker and easier. But, in addition to this, it also seems to tell the mesothelial cells (microvilli) that line the spleen to "take it easy," because there is no threat."

In my words turning off the inflammation.

In their words.

"Their experiments tell a complex story about how this salt provides a signal to a special kind of cell called "mesothelial cells," telling them that the body is fine and not under attack, rendering an aggressive immune system unnecessary. Thus, harmful autoimmune responses are averted. . . . . .

Baking soda "prompts" the stomach to produce more gastric acid, which allows it to digest food quicker and easier. But, in addition to this, it also seems to tell the mesothelial cells that line the spleen to "take it easy," because there is no threat."

And why I think taking Powdered stomach acid BetaineHCL muted my immune response (I believe) because below a certain stomach pH the immune response to gluten and other proteins are turned into the as they say "take it easy" on your Villi. . . the gluten is not a Virus.

I hope this is helpful.

******let mes say specifically this is is not medical advice or the opinion of celiac.com it my opinion only and what has helped me.

Your experience might be different but it is worth researching it more to see if increasing your stomach acid (by lowering your pH) can help your GI related NCGS symptom's. 

I only know it did mine.  Praise bee to God! and not the doctor's.

I share because I had a similar experience and could easily be bitter. . . but it is sweetness when I am able to help other's the way the Lord being my help I was able to find help.

If betaineHCL is not available too you there are several natural digestive aids that can stoke up your digestive juices naturally.   Always drink plenty of water when taking BetaineHCL and always with a a meal . . because food naturally lowers  our stomach acid . . . ensuring you to do not take enough to scald your insides on an empty stomach.  You will get a "warm sensation" in your abdomen if/when you reach gastric tolerance.

Basically anything really spicy or peppery can stoke up our digestive juices naturally.

Triphala is a common digestive aid that is used to stoke up digestive fires. 

It is basically 3 Indian (Herbs/Peppers combination) that trigger stomach acid production naturally.  I  have used it before with good success.

https://www.healthline.com/health/triphala-benefits

You can also eat beets.  They are a natural source of Betaine.

See this livestrong article about it and them.

https://www.livestrong.com/article/455181-what-are-the-benefits-of-using-betaine-hcl/

Where they say (livestrong) has been shown to relieve Hypochlorhydria (in my opinion) when it is being misdiangosed as IBS or NCGS and if we believe the research 84% of NCGS are being diagnosed as IBS instead.

quoting

Relieves Hypochlorhydria

Hypochlorhydria is the low production of stomach acid, or decreased secretion of HCl. This state of low acid can negatively impact the proper digestion of food, and may allow bacteria into the gut that would have normally been killed by the acid. Betaine hydrochloride has been successfully used in conventional medicine to treat hypochlorhydria.

Fresh Cabbage juice is recommended for Ulcers.

Their is also Ginger a popular stomach soother. This is often why Ginger Ale settles the stomach.

Again, I hope this is helpful but this is not medical advice or endorsed by celiac.com only my opinion and what seemed to help me with my 'unoffical' NCGS diagnosis.

I only hope it helps you in the same way it did me.

Praise be to God if it does. . . and He does care for us all.  Celiac or no Celiac.

NCGS, IBS or Hypochlorhydria misdiagnosed.

2 Corinthians (KJV) 1:3,4  3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish), by the comfort wherewith we ourselves are comforted of God.”

see poem by Loren Eisley.

http://www.bing.com/images/search?view=detailV2&ccid=d%2BljEqqV&id=7CC638107856EFD43D216A46BEDD269C64348494&thid=OIP.d-ljEqqVNAfDJBjamolNDwHaK4&mediaurl=http%3A%2F%2Fmedia-cache-ak0.pinimg.com%2F736x%2Ffd%2F54%2F67%2Ffd54674600132cabae7d2b7cc4422bd1.webp&exph=741&expw=504&q=loren+eiseley+starfish&simid=608017683347017603&selectedindex=1&ajaxhist=0

I am that boy walking down the seashore trying to help the next starfish that washes up on the medical coast . . .stranded hoping someone will pick them up an throw them back into the the sea of humanity .. .which connects us all.

Posterboy by the Grace of God,

 

 

[kareng]

2 hours ago, Posterboy said:

Martin,

I think you might be confusing the doctors for God.

Many on this site often (third world or not) have had to find out/research what the doctor's didn't know about Celiac disease.

I am lucky/was lucky enough to not be my doctor's first Celiac/NCGS patient.

The horror stories are many  . . . .too many to tell.

I was in my 30's before I received like you my NCGS diagnosis 'unofficially' through a blood test. . . because the "(g)old standard is by bisopy proven . . .which can almost kill you before you get an "official diagnosis"

But positive is positive! with our without biopsy in my mind.

see this dr. hyman article about it.

https://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

quoting

"We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease"

And I think most doctor's are so busy cataloging diseases that they often don't  consider the continuum (spectrum of disease) that is often related but diagnosed as separate diseases (too often) today.

Consider IBS it is a different "official diagnosis" but actually on the celiac/NCGS spectrum.

see this article about it.

https://www.celiac.com/celiac-disease/large-number-of-irritable-bowel-syndrome-patients-sensitive-to-gluten-r3442/

I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “

This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition.

Most/many on this forum think IBS means "I.Be.Stumped".

That said continuing on the GI spectrum of problems when I stoked up my digestive fires I found my digestion improved considerably.

Stresses in life drain/maim (surgeries, car accident, trauma etc.) us because we use up or energy reserves faster than our body can replenish them.

And our stomach acid often becomes low (in my opinion) lowering our ability to digest proteins anymore.

How do we know this or can we????

we know stress is common before a celiac diagnosis.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/stress-common-before-celiac-diagnosis-r2930/

treating my low stomach acid helped by replacing/treating my self with powdered stomach acid I could now digest (better) the proteins (lactose etc.) that were now setting off auto-immune reactions because my stomach acid had become too low causing heartburn, IBS, NCGS and probably in time my 'unoffical' celiac  diagnosis.

Can we know this . . .this is only an hypothesis on my part.  . .taking BetaineHCL makes  it a working theory if you try it and it works. . . for you the way it did for me to help my NCGS.

Remember I said NCGS and NOT Celiac disease.. .. and it might only be IBS you have since your diagnosis is not "official".

Here is my story.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

Maybe it will help and maybe it won't but you won't know unless you try  . .. and you can't do what you don't know and why I share.

Also see this thread that talks more about these issues . ... especially the cross connectivity part of this thread/issue/topic.

https://www.celiac.com/forums/topic/121915-the-way-it-really-is/?tab=comments#comment-993383

we know this is "the way it is really is" in my opinion because we have documented case studies where strong stomach acid  helps us control/low allerginic potentially of food proteins.

see this research entitled "The effect of gastric digestion on food allergy."

Note this research is 10+ years old and it  hasn't made it down the clinical/doctor's levels even in the US.

https://www.ncbi.nlm.nih.gov/pubmed/16670517

quoting

"Moreover, the importance of gastric digestion was also proven for food-allergic patients, as the allergenicity of allergens were reduced up to a 10,000-fold by gastric digestion."

And newer research confirms it in my mind.

See this medicalnewstoday article.

https://www.medicalnewstoday.com/articles/321624.php

quoting

"Baking soda "prompts" the stomach to produce more gastric acid, which allows it to digest food quicker and easier. But, in addition to this, it also seems to tell the mesothelial cells (microvilli) that line the spleen to "take it easy," because there is no threat."

In my words turning off the inflammation.

In their words.

"Their experiments tell a complex story about how this salt provides a signal to a special kind of cell called "mesothelial cells," telling them that the body is fine and not under attack, rendering an aggressive immune system unnecessary. Thus, harmful autoimmune responses are averted. . . . . .

Baking soda "prompts" the stomach to produce more gastric acid, which allows it to digest food quicker and easier. But, in addition to this, it also seems to tell the mesothelial cells that line the spleen to "take it easy," because there is no threat."

And why I think taking Powdered stomach acid BetaineHCL muted my immune response (I believe) because below a certain stomach pH the immune response to gluten and other proteins are turned into the as they say "take it easy" on your Villi. . . the gluten is not a Virus.

I hope this is helpful.

******let mes say specifically this is is not medical advice or the opinion of celiac.com it my opinion only and what has helped me.

Your experience might be different but it is worth researching it more to see if increasing your stomach acid (by lowering your pH) can help your GI related NCGS symptom's. 

I only know it did mine.  Praise bee to God! and not the doctor's.

I share because I had a similar experience and could easily be bitter. . . but it is sweetness when I am able to help other's the way the Lord being my help I was able to find help.

If betaineHCL is not available too you there are several natural digestive aids that can stoke up your digestive juices naturally.   Always drink plenty of water when taking BetaineHCL and always with a a meal . . because food naturally lowers  our stomach acid . . . ensuring you to do not take enough to scald your insides on an empty stomach.  You will get a "warm sensation" in your abdomen if/when you reach gastric tolerance.

Basically anything really spicy or peppery can stoke up our digestive juices naturally.

Triphala is a common digestive aid that is used to stoke up digestive fires. 

It is basically 3 Indian (Herbs/Peppers combination) that trigger stomach acid production naturally.  I  have used it before with good success.

https://www.healthline.com/health/triphala-benefits

You can also eat beets.  They are a natural source of Betaine.

See this livestrong article about it and them.

https://www.livestrong.com/article/455181-what-are-the-benefits-of-using-betaine-hcl/

Where they say (livestrong) has been shown to relieve Hypochlorhydria (in my opinion) when it is being misdiangosed as IBS or NCGS and if we believe the research 84% of NCGS are being diagnosed as IBS instead.

quoting

Relieves Hypochlorhydria

Hypochlorhydria is the low production of stomach acid, or decreased secretion of HCl. This state of low acid can negatively impact the proper digestion of food, and may allow bacteria into the gut that would have normally been killed by the acid. Betaine hydrochloride has been successfully used in conventional medicine to treat hypochlorhydria.

Fresh Cabbage juice is recommended for Ulcers.

Their is also Ginger a popular stomach soother. This is often why Ginger Ale settles the stomach.

Again, I hope this is helpful but this is not medical advice or endorsed by celiac.com only my opinion and what seemed to help me with my 'unoffical' NCGS diagnosis.

I only hope it helps you in the same way it did me.

Praise be to God if it does. . . and He does care for us all.  Celiac or no Celiac.

NCGS, IBS or Hypochlorhydria misdiagnosed.

2 Corinthians (KJV) 1:3,4  3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish), by the comfort wherewith we ourselves are comforted of God.”

see poem by Loren Eisley.

http://www.bing.com/images/search?view=detailV2&ccid=d%2BljEqqV&id=7CC638107856EFD43D216A46BEDD269C64348494&thid=OIP.d-ljEqqVNAfDJBjamolNDwHaK4&mediaurl=http%3A%2F%2Fmedia-cache-ak0.pinimg.com%2F736x%2Ffd%2F54%2F67%2Ffd54674600132cabae7d2b7cc4422bd1.webp&exph=741&expw=504&q=loren+eiseley+starfish&simid=608017683347017603&selectedindex=1&ajaxhist=0

I am that boy walking down the seashore trying to help the next starfish that washes up on the medical coast . . .stranded hoping someone will pick them up an throw them back into the the sea of humanity .. .which connects us all.

Posterboy by the Grace of God,

 

 

That’s way too much for most of us to even read - much less follow all the links.  Maybe you could condense a bit and just give info on the exact topic? Skip your religious views and ideas on other topics?   I say this because I know you want to help people , but going off on multiple extra topics doesn’t get read by most people.  And then they miss the important parts that pertain to their issues.

Edited July 18, 2018 by kareng

[Martin-0123]

13 hours ago, Posterboy said:

Martin,

I think you might be confusing the doctors for God.

Many on this site often (third world or not) have had to find out/research what the doctor's didn't know about Celiac disease.

I am lucky/was lucky enough to not be my doctor's first Celiac/NCGS patient.

The horror stories are many  . . . .too many to tell.

I was in my 30's before I received like you my NCGS diagnosis 'unofficially' through a blood test. . . because the "(g)old standard is by bisopy proven . . .which can almost kill you before you get an "official diagnosis"

But positive is positive! with our without biopsy in my mind.

see this dr. hyman article about it.

https://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

quoting

"We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease"

And I think most doctor's are so busy cataloging diseases that they often don't  consider the continuum (spectrum of disease) that is often related but diagnosed as separate diseases (too often) today.

Consider IBS it is a different "official diagnosis" but actually on the celiac/NCGS spectrum.

see this article about it.

https://www.celiac.com/celiac-disease/large-number-of-irritable-bowel-syndrome-patients-sensitive-to-gluten-r3442/

I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “

This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition.

Most/many on this forum think IBS means "I.Be.Stumped".

That said continuing on the GI spectrum of problems when I stoked up my digestive fires I found my digestion improved considerably.

Stresses in life drain/maim (surgeries, car accident, trauma etc.) us because we use up or energy reserves faster than our body can replenish them.

And our stomach acid often becomes low (in my opinion) lowering our ability to digest proteins anymore.

How do we know this or can we????

we know stress is common before a celiac diagnosis.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/stress-common-before-celiac-diagnosis-r2930/

treating my low stomach acid helped by replacing/treating my self with powdered stomach acid I could now digest (better) the proteins (lactose etc.) that were now setting off auto-immune reactions because my stomach acid had become too low causing heartburn, IBS, NCGS and probably in time my 'unoffical' celiac  diagnosis.

Can we know this . . .this is only an hypothesis on my part.  . .taking BetaineHCL makes  it a working theory if you try it and it works. . . for you the way it did for me to help my NCGS.

Remember I said NCGS and NOT Celiac disease.. .. and it might only be IBS you have since your diagnosis is not "official".

Here is my story.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

Maybe it will help and maybe it won't but you won't know unless you try  . .. and you can't do what you don't know and why I share.

Also see this thread that talks more about these issues . ... especially the cross connectivity part of this thread/issue/topic.

https://www.celiac.com/forums/topic/121915-the-way-it-really-is/?tab=comments#comment-993383

we know this is "the way it is really is" in my opinion because we have documented case studies where strong stomach acid  helps us control/low allerginic potentially of food proteins.

see this research entitled "The effect of gastric digestion on food allergy."

Note this research is 10+ years old and it  hasn't made it down the clinical/doctor's levels even in the US.

https://www.ncbi.nlm.nih.gov/pubmed/16670517

quoting

"Moreover, the importance of gastric digestion was also proven for food-allergic patients, as the allergenicity of allergens were reduced up to a 10,000-fold by gastric digestion."

And newer research confirms it in my mind.

See this medicalnewstoday article.

https://www.medicalnewstoday.com/articles/321624.php

quoting

"Baking soda "prompts" the stomach to produce more gastric acid, which allows it to digest food quicker and easier. But, in addition to this, it also seems to tell the mesothelial cells (microvilli) that line the spleen to "take it easy," because there is no threat."

In my words turning off the inflammation.

In their words.

"Their experiments tell a complex story about how this salt provides a signal to a special kind of cell called "mesothelial cells," telling them that the body is fine and not under attack, rendering an aggressive immune system unnecessary. Thus, harmful autoimmune responses are averted. . . . . .

Baking soda "prompts" the stomach to produce more gastric acid, which allows it to digest food quicker and easier. But, in addition to this, it also seems to tell the mesothelial cells that line the spleen to "take it easy," because there is no threat."

And why I think taking Powdered stomach acid BetaineHCL muted my immune response (I believe) because below a certain stomach pH the immune response to gluten and other proteins are turned into the as they say "take it easy" on your Villi. . . the gluten is not a Virus.

I hope this is helpful.

******let mes say specifically this is is not medical advice or the opinion of celiac.com it my opinion only and what has helped me.

Your experience might be different but it is worth researching it more to see if increasing your stomach acid (by lowering your pH) can help your GI related NCGS symptom's. 

I only know it did mine.  Praise bee to God! and not the doctor's.

I share because I had a similar experience and could easily be bitter. . . but it is sweetness when I am able to help other's the way the Lord being my help I was able to find help.

If betaineHCL is not available too you there are several natural digestive aids that can stoke up your digestive juices naturally.   Always drink plenty of water when taking BetaineHCL and always with a a meal . . because food naturally lowers  our stomach acid . . . ensuring you to do not take enough to scald your insides on an empty stomach.  You will get a "warm sensation" in your abdomen if/when you reach gastric tolerance.

Basically anything really spicy or peppery can stoke up our digestive juices naturally.

Triphala is a common digestive aid that is used to stoke up digestive fires. 

It is basically 3 Indian (Herbs/Peppers combination) that trigger stomach acid production naturally.  I  have used it before with good success.

https://www.healthline.com/health/triphala-benefits

You can also eat beets.  They are a natural source of Betaine.

See this livestrong article about it and them.

https://www.livestrong.com/article/455181-what-are-the-benefits-of-using-betaine-hcl/

Where they say (livestrong) has been shown to relieve Hypochlorhydria (in my opinion) when it is being misdiangosed as IBS or NCGS and if we believe the research 84% of NCGS are being diagnosed as IBS instead.

quoting

Relieves Hypochlorhydria

Hypochlorhydria is the low production of stomach acid, or decreased secretion of HCl. This state of low acid can negatively impact the proper digestion of food, and may allow bacteria into the gut that would have normally been killed by the acid. Betaine hydrochloride has been successfully used in conventional medicine to treat hypochlorhydria.

Fresh Cabbage juice is recommended for Ulcers.

Their is also Ginger a popular stomach soother. This is often why Ginger Ale settles the stomach.

Again, I hope this is helpful but this is not medical advice or endorsed by celiac.com only my opinion and what seemed to help me with my 'unoffical' NCGS diagnosis.

I only hope it helps you in the same way it did me.

Praise be to God if it does. . . and He does care for us all.  Celiac or no Celiac.

NCGS, IBS or Hypochlorhydria misdiagnosed.

2 Corinthians (KJV) 1:3,4  3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish), by the comfort wherewith we ourselves are comforted of God.”

see poem by Loren Eisley.

http://www.bing.com/images/search?view=detailV2&ccid=d%2BljEqqV&id=7CC638107856EFD43D216A46BEDD269C64348494&thid=OIP.d-ljEqqVNAfDJBjamolNDwHaK4&mediaurl=http%3A%2F%2Fmedia-cache-ak0.pinimg.com%2F736x%2Ffd%2F54%2F67%2Ffd54674600132cabae7d2b7cc4422bd1.webp&exph=741&expw=504&q=loren+eiseley+starfish&simid=608017683347017603&selectedindex=1&ajaxhist=0

I am that boy walking down the seashore trying to help the next starfish that washes up on the medical coast . . .stranded hoping someone will pick them up an throw them back into the the sea of humanity .. .which connects us all.

Posterboy by the Grace of God,

 

 

Exactly, you said it yourself. You were simply lucky not to be your doctor's first patient with celiac. What about all those people that have had many health issues due to gluten but never got to the bottom of it and died in vain from various complications? People who couldn't pinpoint their symptoms to gluten and kept poisoning themselves without knowing they were doing that. I've read parts of the Bible and even they say that God is powerless when it comes to diseases and all. 

The reason I was able to get to the bottom of it was because I was diagnosed with mitral valve prolapse in 2016. My doctor told me not to worry about it, but I did. I joined a group on fb and I was able to trace my symptoms and connect the dots. I was just a normal person who's never been sick before and didn't even know a thing about medicine, apart from my dodgy knees. I took a year away from university, lost contact with everyone I knew to get to the root of this because I thought I was dying, only to find out I wasn't dying but I would have died if I kept on eating what I had been eating.

Where I live we don't even have gluten-free flour (the corn flour here contains soy, which I'm allergic to) so basically if I eat bread made from that I slowly kill myself. Hmm.. I wonder if that's considered a slow suicide and a sin warranting a trip to hell, since I'm aware I'm killing myself by ingesting it. What does the Bible say about that I wonder.. Tricky isn't it? 

The doctors in our capital city didn't believe me a word of what I said. Even when I showed them the food allergy test that states I should stop consuming wheat/soy/yeast/milk. They thought I had forged the results so I could get funds for gluten-free flour from the country?? I even recorded the doctor on voice note saying that despite my allergies, the symptoms were most likely psychological (basically called me insane or a hypochondriac).  In fact, they still said it's not a big deal, since my antibodies weren't that much elevated, rather than give me credit for preventing further damage. In fact, why would they? It's all a big sham so it's not in their interest for you to be healthy, right? Same with religion. I don't dismiss the idea of God or his existence, but the more you realise how the world works, the more you think that religion was just one, carefully crafted work by few men who wanted to control the people living at the time. I want to believe in God, and most likely still do.. but when I was having my symptoms there was another kid my age who died from cancer. I was lucky that mine was basically nothing compared to his case, but how can I credit a God for my lucky escape when someone else didn't have the same luck as I did. I was grateful, and still am, despite my struggles and the fact my life is over before it's even started but I don't have much to celebrate. I'm still slowly dying, as most celiacs are, especially not even being able to eat bread. You can't live on potatoes, rice, fish and salads all the time. I can't even go anywhere because the only meal I can eat is fruit. There's nothing I can eat on the go because everything contains wheat flour, if it doesn't contain that, it will contain soy.. If it doesn't contain gluten and soy, it will contain yeast extract, or lactose, or dextrose etc. etc. which means I'm limited to only eating few meals every day with nothing you can eat while away from your house. I've seen the post by that guy on here who said he'd rather just eat everything he wants and die young, rather than adhere to the diet and I completely understand him. Except in my case I am willing to live like this until I reach a breaking point.. I'm aware you have probably been through the same experience of having suicidal thoughts, especially when you get glutened hah.. It's like being controlled by someone and not really you. I'm sure in a few years time I will have mastered my situation, but for now there's no light at the end of the tunnel and there's nothing God or anyone else can do for me.
We're all humans, we've all got good hearts, and we are aware we're not bigger than God, but you have to understand that everyone's dealt with different kind of hardships, so shoving religion or Bible verses in their throat is the quickest way for people to roll their eyes at you. I understand you have the most sincere intentions but it's the last thing people need when they're faced with a question of life and death. As humans, our basic instinct is to try and survive in such situations. Bible verses don't help people cope with stuff the way they do for you, sir.

I had chicken pox for the first time in 2016 and I'm pretty sure that's what made my immune system shut down on me. I appreciate your story about that medicine (Betaine) but I'm pretty sure we don't have it here, and even if we did, no doctor would agree to that and send me home like I'm someone who's seeking drugs. You need to have a solid proof before you can go up to doctors and ask them for something like that. I know from first hand experience that the moment I mentioned 'leaky gut' to my doctor, using the English term for it, she just looked me dead in the eye, asking me if I had a life, apart from reading about these conditions. 

I use baking soda when making bread (from corn-soy flour) cause I can't use yeast or baking powder (contains gluten), so I guess it's okay. The doctors here didn't even want to know more about my condition. They don't even warn you about anything, or tell you what to eat, but then get butt-hurt when your knowledge is greater than theirs. They didn't even want to perform a biopsy on me to see how damage my intestines were. I basically had to force them to make me an appointment, and when they did, they told me they would do it without anesthesia cause everything was booked for up until March.. So there's no way I'd wait till March or ingest gluten on purpose a month prior to the biopsy so it could give accurate results. 

The betaine thing that you mention.. let's say that can help you to a certain degree, but you still wouldn't know the real reason why your stomach reacts the way it does to the proteins. What if continued use messes up your stomach even more or you become allergic to other foods? Just accept it, and move on. Even if the intensity of your symptoms drops, your body still reacts to the gluten so ingesting it still causes damage, except it's now hidden and covered up. There's one song that sings "What God broke here, won't go back together again" by a band called Editors. Their singer's an atheist on one of their albums and a believer on another. Basically we know nothing, we're just guinea pigs and we'll only have an explanation on why things had to happen they way they did when we die. That's what I believe. It's really cynical but then again, it's what life taught me. 

And I get it. God helped you so you want to repay him. I felt like that when my mitral valve prolapse diagnosis wasn't something worse like cardiac arrest, but my relief didn't last long, and that's when I knew I was dying, and when you're dying, you fight your battles alone. 

I tried to warn others whom I suspected were suffering with gluten intolerance but they either didn't want to change their lifestyle, or didn't want to believe such thing could happen to them as well. Don't force yourself with the 'spreading awareness' thing. People wouldn't know how it feels until it happens to them, so it's useless and you should let them be. 

I know cabbage juice is used for fighting the bacteria in your stomach but I have always eaten beets (preserved ones mostly) and the only thing they've helped me with was to have strong blood. 

I sound really cynical, which I am quite aware of, so I apologize for the tone of my voice. I really love the poem about the starfish. Most people don't even know what I've gone through but I try to be there for them and give them advice with something they need. I appreciate your effort and suggestions, btw. It's not an everyday thing to see someone reply so thoroughly. Thank you and God bless you of course! 

[Posterboy]

7 hours ago, Martin Shipinkoski said:

The doctors in our capital city didn't believe me a word of what I said. Even when I showed them the food allergy test that states I should stop consuming wheat/soy/yeast/milk

Martin,

I could say the same thing about any of my specialist's.

I have prediabetes and treat it with diet and exercise mostly but have found certain Vitamin and Minerals have also helped.

I took Chromium lowering my average A1C and the doctor specialist just shrugged it off!!!!!!!!!

They were content to let me go on insulin.  So far soo good  . ..no insulin and no medicine.

Back to the OP and your lament about various food allergens.

This was sent to me by another advanced member and hadn't seen this research (or at least that I remember) before.

Most long time celiac's know soy and milk are other common food allergens. . .but you mentioned yeast also.

Here is the research on it entitled "Computational Characterisation and Identification of Peptides for in silico Detection of Potentially Celiac-Toxic Proteins"

http://journals.sagepub.com/doi/abs/10.1177/1082013207077954

quoting

"Rich sources of celiac-disease-potentiating peptides were wheat gliadins, barley hordeins and rye secalins as well as low-molecular weight fractions of glutenin. In addition, amino acid sequences with a high degree of identity to the toxic peptides examined were detected in maize zein, oat avenin, protein of rice, yeast and chicken muscles, as well as β-casein and galanin."

I like to think the corn allergy is sign of Pellagra (though some would argue against that) and the corn allergy is recoverable from.

Here is the research about some celiac's who experience issues with corn.

https://www.ncbi.nlm.nih.gov/pubmed/24152750?dopt=Abstract

You can take this research to your doctor and tell them it is not all in your head.

But most specialist won't listen even you give them good research.

I am going to start another post/reply about the hive issue for you.

As always I hope this is helpful.

Posterboy by the grace of God,

 

[Posterboy]

On 7/17/2018 at 5:26 PM, Martin Shipinkoski said:

Sir, I appreciate your help but my reaction to the ingested melon had nothing to do with my oral cavity.

Martin,

The OAS was just a guess on my part.  I thought it was worth mentioning.

Following the Hives (and/or DH) issue a little deeper.

Low stomach acid has been shown (in older studies) though that does not make any less true or untrue.  Just old and new(er) researchers have gone in a different direction (Not necessarily better) direction.

11 hours ago, Martin Shipinkoski said:

The betaine thing that you mention.. let's say that can help you to a certain degree, but you still wouldn't know the real reason why your stomach reacts the way it does to the proteins. What if continued use messes up your stomach even more or you become allergic to other foods? Just accept it, and move on. Even if the intensity of your symptoms drops, your body still reacts to the gluten so ingesting it still causes damage, except it's now hidden and covered up.

Unless it is the cause of the reaction in the first place.

The difference between Casual and Causal is what we are discussing when talk about other proteins cross reacting. . . but in my mind/opinion it is  ALL Proteins and the point of my earlier post and long response.

When we look at the "common" symptom's of low or now stomach acid they are eerily similar.

See this heathline article about it.

https://www.healthline.com/health/hypochlorhydria#riskfactors

quoting their diagnosis section

Diagnosis

"To determine whether you have hypochlorhydria, your doctor will complete a physical exam and take a history of your health and symptoms. Based on this information, they may test the pH (or acidity) of your stomach.

Stomach secretions usually have a very low pH (1–2), which means they are highly acidic.

Your stomach pH may indicate the following:

Stomach pHDiagnosis

Less than 3Normal

3 to 5Hypochlorhydria

Greater than 5Achlorhydria

People with achlorhydria have almost no stomach acid."

What is not happening is the critical first step of testing "Based on this information, they may test the pH (or acidity) of your stomach."

to assume it is high when it is not creates all kinds of problems like protein digestion issues.

We know their is a link because older research bears this out.

See this thread were it was talked about in more detail especially detailing it connection to Celiac's who develop DH.

And yes I remember you said this was not a DH reaction.

In my earlier long post I mentioned a spectrum (continuum of disease) this applies here too!

Going a little farther back in time. Or in this case "looking back can help (us/you) plot the way forward.

This research is a good ripe 60+ years old and most would dismiss it but I hope you don't.  .  .. entitled "Achlorhydria — Associated Symptoms and Response to Hydrochloric Acid"

https://www.nejm.org/doi/full/10.1056/NEJM195505122521904

quoting the entire first 100 words these was even before abstracts apparently.

"CLINICAL entities that are at times associated with achlorhydria command the attention not only of the gastroenterologist but also of the internist, the hematologist and the dermatologist. Invariably present in pernicious anemia, gastric anacidity is encountered in gastritis of all types, as well as in gastric carcinoma and sprue. It has been reported a frequent finding in microcytic anemia,1 , 2 hyperthyroidism3 and chronic arthritis.4 For many years dilute hydrochloric acid has been employed in various dermatologic disorders, particularly acne rosacea, and more recently it has been recommended for urticaria.5 (Hives) The gastroenterologist occasionally encounters patients who have been taking dilute hydrochloric acid . . ."

So low and even NO stomach acid has long been forgotten as a cause of Hives.

And in my opinion (this is not medical advice) if it was true 50+ years ago.

It is still true today it has just been forgotten by this generation of doctor's who study more about medicine than nutrition unless you are a functional medicine doctor that focuses on restoring the bodies normal, healthy functions first.

I also recommend this article by a functional medicine doctor that explains why there is the "blindspot in medicine"  when we either don't diagnose low stomach acid or misdiagnosis (in my opinion) as IBS or NCGS.  See earlier post where 80+ percent of IBS patients could medically receive a NCGS diagnosis.

https://www.drmyattswellnessclub.com/WhatsBurningYou.htm

quoting dr. Myatt.

"Why The Blind Spot In Medicine?

From the 1800's up until the 1950's, hydrochloric acid (HCl) supplements (both with and without pepsin) were widely prescribed and used. Physicians simply considered replacement of digestive acid to be like replacement of thyroid hormone for a failing thyroid or hormone replacement for aging ovaries.

In the 1950's, some badly designed and misinterpreted "research" was used to convince physicians that HCl and pepsin replacement therapy is unnecessary. Besides, the "replacement" therapy – HCL and pepsin – are natural substances that are difficult to patent. Instead, drug companies focused on patentable drugs to treat "hyperchlorhydria" (excess stomach acid), and the highly profitable prescription and OTC acid blocking drug industry was born.

Once again I ask: if a doctor diagnosed you with excess stomach acid (IBS or NCGS or even Celiac disease my words), did he or she actually perform the Heidelberg test? If you diagnosed yourself, did you perform a gastric acid self-test? No? I rest my case."

The self test is did your (GI) digestion improve when you took BetaineHCL.

I should quite for now before this post/reply get's too long again (if it is not already).

As always I hope this is helpful and you will consider what I say.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

Know I would do anything I could to help you.

I only know it helped me.  And it helps many peoples GI symptom's that have not received an 'official' Celiac diagnosis because even in the US doctor's are NOT testing their patients Stomach acid strength first!

11 hours ago, Martin Shipinkoski said:

I had chicken pox for the first time in 2016 and I'm pretty sure that's what made my immune system shut down on me.

Almost forget as for the chicken pox you are probably more right than doctor's know.  Trust your gut and always bee your own advocate.

See this thread/research that connects virus infections before a celiac diagnosis to (a) possible linked subsequent Celiac diagnosis.

It shows (in my mind and trents see his comment) that he to thought a virus triggered  his Celiac diagnosis cross reacting (their words "Hijacking" our immune system) from then on confusing gluten (and if we can believe) the earlier linked research even other proteins like the yeast you mentioned your react too!

I gotta quit. If this doesn't answer all  your questions.  Start  a new thread or you can always PM and I will try to answer any remaining questions you have Lord willing. . . If I don't know I will tell you soo or try and find it if I can.

Good luck on your continued journey.

Edited July 19, 2018 by Posterboy
left out a key word changing meaning of sentence even doctors in the us are NOT testing their patients stomach acid first

[Posterboy]

Martin,

I can't ever get everything in one post.

Here is a cases study/report on the use of BetaineHCL.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/

Here is the shortened overview (timeline) of Fig. 1 by itself.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/figure/f1-49-53/?report=objectonly

Before BetaineHCL the patient suffered (under doctor supervision) with low stomach acid in 6 months of BetaineHCL supplementation their GI problems were in remission.

It should be noted this was was for an IBS patient and not a Celiac patient but for someone who has not received an "official" diagnosis and is only NCGS and we know IBS/NCGS patients symptom's in 80+ percent of the time are are interdependent (and indistinct) in a clinical setting.  I would definitely recommend your research it more for yourself.

Again I hope this is helpful but it is NOT medical advice.

It is always good to see where other's have similar problems like yourself and got better from them.  I hope it brings you hope to know many on this board know how you feel and like your self struggled with doctor's to receive our diagnosis'.

Posterboy,

[Martin-0123]

19 hours ago, Posterboy said:

Martin,

I can't ever get everything in one post.

Here is a cases study/report on the use of BetaineHCL.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/

Here is the shortened overview (timeline) of Fig. 1 by itself.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991651/figure/f1-49-53/?report=objectonly

Before BetaineHCL the patient suffered (under doctor supervision) with low stomach acid in 6 months of BetaineHCL supplementation their GI problems were in remission.

It should be noted this was was for an IBS patient and not a Celiac patient but for someone who has not received an "official" diagnosis and is only NCGS and we know IBS/NCGS patients symptom's in 80+ percent of the time are are interdependent (and indistinct) in a clinical setting.  I would definitely recommend your research it more for yourself.

Again I hope this is helpful but it is NOT medical advice.

It is always good to see where other's have similar problems like yourself and got better from them.  I hope it brings you hope to know many on this board know how you feel and like your self struggled with doctor's to receive our diagnosis'.

Posterboy,

The stomach acids can't remain low all the time so that you react to the gluten/soy etc. all the time. Something got broken and there's no way back. Also I forgot to mention that my antibodies for Crohn were elevated a bit (within the limit) compared to the other IgA antibodies so looks like that's my next auto-immune to deal with lol, I don't plan on sticking here for too long anyway, so I give up on trying to deal with this. Thanks for the info but you don't know doctors here. Plus the fact that we don't have gluten free flour here means I can't even eat bread anymore and probably lose weight sooner or later, not to mention not getting the proper nutrients. It's all part of God's plan so who am I to interfere, maybe God just wants me dead ha! 

A diagnosis (which I got it the hard way and paid my own money and time for it) was just a start. Figuring it out was a great relief at the time, but it was a Pyrrhic victory. There's nothing left I can do and I don't intend to. I've fallen way behind with life to care about what's gonna happen next. Besides it's not up to me anymore. Life is absurd and there's nothing we can do about it. 

Take care and thanks once again!

[Ennis-TX]

Early on I was told my diagnosis was a sign and a guiding light. For me to eat better, and use my love for cooking to start a new business selling gluten free baked goods and cooking for people gluten free. Each diagnosis of issues I got have guided me. Corn allergy and Uclerative Colitis made me go paleo with a keto emphasis with my baked goods....still do breads just with nut based flours.

Maybe you should just go to a veggie, potatoes, chick pea/garbanzo bean, meat diet and just give up grains....I have some simple recipes for flat breads using coconut flour and eggs if you wish, even a old garbanzo bean flour bread recipe I used to make....You can globally source Nutivia coconut flour on amazon now days, few others like Authentic Flours....Baking Powder..Use Heniz Feather Light again on Amazon or some other international distributor.

If you get too fed up with your government calling bull s$#& on your health....perhaps it is a sign to sell everything and move to a country more accommodating to your health need?

 

[Gary’sGirl]

I am so thrilled to have found this site.  I’ve had celiac disease for about 8 years now and am “just now” learning that even Lactaid Milk may be damaging?  Is there a specific test that I can ask my doctor to perform in order to see if this is the case with me?  Get this.....I had hives over just about my entire body for almost one full year and all they could say was that it was an autoimmune issue.  Wanted me to start chemotherapy drugs, I said NO!  New dermatologist has me on heavy doses of Allegra and Singulair.....hive free for almost 6 months!!!  Fibromyalgia, Raynaud’s, and complete internal damage from Levaquin (black box antibiotic) that a nut doctor gave to me FOR the celiac disease before I was properly dx.  Sorry.  Didn’t mean to ramble.

[cyclinglady]

58 minutes ago, Gary’sGirl said:

I am so thrilled to have found this site.  I’ve had celiac disease for about 8 years now and am “just now” learning that even Lactaid Milk may be damaging?  Is there a specific test that I can ask my doctor to perform in order to see if this is the case with me?  Get this.....I had hives over just about my entire body for almost one full year and all they could say was that it was an autoimmune issue.  Wanted me to start chemotherapy drugs, I said NO!  New dermatologist has me on heavy doses of Allegra and Singulair.....hive free for almost 6 months!!!  Fibromyalgia, Raynaud’s, and complete internal damage from Levaquin (black box antibiotic) that a nut doctor gave to me FOR the celiac disease before I was properly dx.  Sorry.  Didn’t mean to ramble.

Lactaid milk is NOT damaging to a celiac unless you are lactose intolerant.  Even then there is no intestinal damage.  Just bloating, gas, indigestion, etc which resolves when the milk leaves the body.  

Now, you could have a milk protein allergy (IgE).   That can damage intestinal villi.  

Have you had a follow-up endoscopy or re-checked your antibodies to help determine if your celiac disease is active?  

I had hives for six months.  I was told by my GI and allergist that it was probably due to autoimmune or perhaps Mast Cell Activation.  Treatment was daily courses of antihistamines.  This helped the itching but not the hives which appeared daily in the afternoon.  All over my body.  Even the soles of my feet!    My board certified allergist (MD) said autoimmune hives are becoming more common.  I personally think that they were activated after a glutening which set off the hives, and added another autoimmune disorder: Autoimmune Gastritis which was active (biopsies) but my small intestine had healed from celiac disease.  

So drink your milk, if you want.  I lose the ability to digest lactose if exposed to gluten, but eventually I get it back.

Edited June 23, 2019 by cyclinglady

[Gary’sGirl]

4 hours ago, cyclinglady said:

Lactaid milk is NOT damaging to a celiac unless you are lactose intolerant.  Even then there is no intestinal damage.  Just bloating, gas, indigestion, etc which resolves when the milk leaves the body.  

Now, you could have a milk protein allergy (IgE).   That can damage intestinal villi.  

Have you had a follow-up endoscopy or re-checked your antibodies to help determine if your celiac disease is active?  

I had hives for six months.  I was told by my GI and allergist that it was probably due to autoimmune or perhaps Mast Cell Activation.  Treatment was daily courses of antihistamines.  This helped the itching but not the hives which appeared daily in the afternoon.  All over my body.  Even the soles of my feet!    My board certified allergist (MD) said autoimmune hives are becoming more common.  I personally think that they were activated after a glutening which set off the hives, and added another autoimmune disorder: Autoimmune Gastritis which was active (biopsies) but my small intestine had healed from celiac disease.  

So drink your milk, if you want.  I lose the ability to digest lactose if exposed to gluten, but eventually I get it back.

I didn’t have Mast Cell per-say but was given triple the shots for it that didn’t help at all.  I had a blood test for the celiac disease and it came back 5 out of 5 markers for it.  I became deathly ill with it in Germany and ended up in the hospital for almost a week. It’s tough sometimes but we just gotta hang on, right?  Take care!!!!

[Posterboy]

On 6/23/2019 at 3:05 PM, Gary’sGirl said:

I am so thrilled to have found this site.  I’ve had celiac disease for about 8 years now and am “just now” learning that even Lactaid Milk may be damaging?  Is there a specific test that I can ask my doctor to perform in order to see if this is the case with me?  Get this.....I had hives over just about my entire body for almost one full year and all they could say was that it was an autoimmune issue.  Wanted me to start chemotherapy drugs, I said NO!  New dermatologist has me on heavy doses of Allegra and Singulair.....hive free for almost 6 months!!!  Fibromyalgia, Raynaud’s, and complete internal damage from Levaquin (black box antibiotic) that a nut doctor gave to me FOR the celiac disease before I was properly dx.  Sorry.  Didn’t mean to ramble.

Gary's Girl,

You might try taking some Vitamin D.

Vitamin D plays a role in modulating the immune system .....once we too get low it has been shown to be associated with hives.

Here is the research entitled "Vitamin D :modulator of the immune system."

https://www.ncbi.nlm.nih.gov/pubmed/20427238

A recent study bear this out entitled Vitamin "D provides relief for those with chronic hives, study shows".

https://www.sciencedaily.com/releases/2014/02/140217084804.htm

You might also have your stomach acid checked one or two studies have shown being low in stomach acid and subsequent treatment can help hives.

Here are a couple links about it.

https://nutritionandhealing.com/2011/05/16/itching-for-knowledge/

also see this University of Michigan health study notes and see section on hives.

https://www.uofmhealth.org/health-library/hn-2922005

Note: It only received one star ...that does not prove causation -- only association but there has been at least one or more studies where either replacement stomach acid aka Betaine HCL capsules and/or a B-complex supplemented helped those with hives.

I hope this is helpful but it is not medical advice.

Posterboy,

[kareng]

5 hours ago, Posterboy said:

Gary's Girl,

You might try taking some Vitamin D.

Vitamin D plays a role in modulating the immune system .....once we too get low it has been shown to be associated with hives.

Here is the research entitled "Vitamin D :modulator of the immune system."

https://www.ncbi.nlm.nih.gov/pubmed/20427238

A recent study bear this out entitled Vitamin "D provides relief for those with chronic hives, study shows".

https://www.sciencedaily.com/releases/2014/02/140217084804.htm

You might also have your stomach acid checked one or two studies have shown being low in stomach acid and subsequent treatment can help hives.

Here are a couple links about it.

https://nutritionandhealing.com/2011/05/16/itching-for-knowledge/

also see this University of Michigan health study notes and see section on hives.

https://www.uofmhealth.org/health-library/hn-2922005

Note: It only received one star ...that does not prove causation -- only association but there has been at least one or more studies where either replacement stomach acid aka Betaine HCL capsules and/or a B-complex supplemented helped those with hives.

I hope this is helpful but it is not medical advice.

Posterboy,

That is not what was asked here!