What to eat

[ISAG]

Hi there,

I am wondering if there are other people as ultra-sensitive to gluten as me here.

I cannot eat any "gluten-free" product because I react to almost all manufactured products, 7 ppm is enough to make me react big time...

But if I make my plantain flour and tapioca I am fine - to avoid cross-contamination fom the skin, I soak the fruit/bulbs in soda ash before prepping them.

I cannot find onions that are "clean" enough, as for the garlic and ginger it's difficult. I just started planting my own, hoping the biodegradation of gluten on the starter bulbs will be fast enough.

I found an olive oil I can have, but it was difficult. I tried maybe 20 different brands, but refused to give up since I need fat.

As for meat, that's also an issue. Even beefsteaks of a brand indicated gluten-free makes me react. 

Water is also an issue because it's filtered through unclean activated charcoal... I have to drink water imported from Europe. Or water from the tap filtered through the carafe of the market leader (tx god it works).

Last, I can take no medicine orally (except for injectable products, because as my primary care provider indicated, all that is injectable can be eaten).

I have moved from France one year ago. Veggies and fruit were definitely cleaner there, I did have issues at times, but not as often. And no issue with meat, sometimes issues with chicken.

Also, I cannot find my remedy here: water kefir. None is clean enough. I had found one that was amazing, I had no bad reaction at all, but they are located in NC and no longer ship to California.

I would try making my own if I could find a source of clean sugar, but I have not so far, and without the kefir in my life, testing possibly contaminated product is challenging.

So I work out strenuously, that's my only option to pick me up when I am down. Even when exhausted, I do it and feel better.

Thanks for your help!

PS: I do not know whether I have celiac disease or "mere" sensitivity, as I refused the gluten challenge that comes with the testing after the eviction test that made me completely healthy in 3 days 10 years ago (unfortunately a few months later I started reacting to gluten traces, then to even less than that). A young gastro educated in a top university recently agreed with me, saying it does not matter really to determine whether it's sensitivity or intolerance since it's all on the same spectrum. But another gastro in a very reputable hospital, old school, told me it's a totally different disease!!!!! 

Isabelle

[trents]

30 minutes ago, ISAG said:

Hi there,

I am wondering if there are other people as ultra-sensitive to gluten as me here.

I cannot eat any "gluten-free" product because I react to almost all manufactured products, 7 ppm is enough to make me react big time...

But if I make my plantain flour and tapioca I am fine - to avoid cross-contamination fom the skin, I soak the fruit/bulbs in soda ash before prepping them.

I cannot find onions that are "clean" enough, as for the garlic and ginger it's difficult. I just started planting my own, hoping the biodegradation of gluten on the starter bulbs will be fast enough.

I found an olive oil I can have, but it was difficult. I tried maybe 20 different brands, but refused to give up since I need fat.

As for meat, that's also an issue. Even beefsteaks of a brand indicated gluten-free makes me react. 

Water is also an issue because it's filtered through unclean activated charcoal... I have to drink water imported from Europe. Or water from the tap filtered through the carafe of the market leader (tx god it works).

Last, I can take no medicine orally (except for injectable products, because as my primary care provider indicated, all that is injectable can be eaten).

I have moved from France one year ago. Veggies and fruit were definitely cleaner there, I did have issues at times, but not as often. And no issue with meat, sometimes issues with chicken.

Also, I cannot find my remedy here: water kefir. None is clean enough. I had found one that was amazing, I had no bad reaction at all, but they are located in NC and no longer ship to California.

I would try making my own if I could find a source of clean sugar, but I have not so far, and without the kefir in my life, testing possibly contaminated product is challenging.

So I work out strenuously, that's my only option to pick me up when I am down. Even when exhausted, I do it and feel better.

Thanks for your help!

PS: I do not know whether I have celiac disease or "mere" sensitivity, as I refused the gluten challenge that comes with the testing after the eviction test that made me completely healthy in 3 days 10 years ago (unfortunately a few months later I started reacting to gluten traces, then to even less than that). A young gastro educated in a top university recently agreed with me, saying it does not matter really to determine whether it's sensitivity or intolerance since it's all on the same spectrum. But another gastro in a very reputable hospital, old school, told me it's a totally different disease!!!!! 

Isabelle

"eviction test"?

[ISAG]

The eviction test is the testing of gluten sensitivity through removal of gluten in the diet. Pragmatic approach indicated by an allergist when I told her that because of poor immunity I did not wish to have biopsy.

The recommended duration of the test is 3 weeks usually. Then people try reintroducing gluten. If they cannot put up with reintroduction, then there is sensitivity. 

I did not even need to go through the reintroduction phase since I became immediately healthy after 3 days off gluten, until the sensitivity increased...

[trents]

Okay. Just never heard that term used in that context. We usually just talk about, "trialing a gluten free diet".

[ISAG]

Tx for the info. I do not know all the terms yet, so I was doing a direct translation from French

[Scott Adams]

It is doubtful that water or olive oil would contain any gluten. Activated charcoal is gluten-free, but I do know that very sensitive people seem to have reactions to many different things.

[trents]

I see. Do you live in a French speaking country?

Also, have you considered that you may have other food intolerances/sensitivities not related to gluten?

[ISAG]

1 hour ago, Scott Adams said:

It is doubtful that water or olive oil would contain any gluten. Activated charcoal is gluten-free, but I do know that very sensitive people seem to have reactions to many different things.

I discovered wheat flour is used as an organic insecticide around olive trees in France, which can be an explanation. 

I mentioned the olive oil because it's the only oil I take, but most of the organic oils I tried are actually an issue - probably because they transit through shared facilities, and heaven knows what happens in shared facilities. How well are the machines cleaned, where do the staff eat their sandwiches, etc...

The only sesame oil I can have are the cheap Asian ones, produced large scale - because the facilities are mono-product I suppose and stricter rules apply to larger scale production.

Activated charcoal can be free from cross-contamination, I have found a few samples over 10 years for water purification. But in my experience charcoal is more often cross-contaminated than not.  

Currently, I am blessed to have found here in the USA an activated charcoal I can take orally (though not indicated gluten free). I had never found a clean enough powder to take orally in France, even the most reputable brands did not work. 

As a very sensitive person, I indeed react to different things (like rice, even clean Asian rice coming from a mono product facility). Or dairies. But they are much milder reactions.

A gluten reaction is very specific in its intensity and cannot be confused with any other. 

 

[ISAG]

1 hour ago, trents said:

I see. Do you live in a French speaking country?

Also, have you considered that you may have other food intolerances/sensitivities not related to gluten?

I live in CA, my husband is Californian. We met in France 10 years ago.

I do have sensitivity to rice and dairy, but it's mild, even a whole plate of those is not as bad as a simple of gluten, which immediately triggers a tsunami of reactions.

Why I do not believe it could be other food intolerances causing those reactions:

- When I removed gluten 10 years ago, all my issues were gone in 3 days after 20 years of health problems of all sorts. That is a strong indication gluten is the primary cause of my reactions. Unfortunately, my sensitivity kept increasing upon the removal of gluten. I was told by a physician that it often happens.

- Also if I had other strong sensitivities, they would always occur when I eat the same product, which is not the case. Sometimes ginger is ok, and the same days another ginger from another batch will make me react. Same with garlic.

- Last, gluten is known for causing dramatic immune reactions in the smallest amount, nothing else. 

 

[Scott Adams]

I couldn't find any specific information to support the claim that wheat flour is used as an organic insecticide around olive trees in France. While there are various organic and natural methods used in agriculture for pest control, including the use of plant-based substances, such as neem oil or diatomaceous earth, the specific use of wheat flour as an insecticide around olive trees in France is not widely documented or recognized. Do you have a link to any information that supports this? I ask because I do not want posts in this forum to spread any incorrect information that might scare celiacs from olive oil, which has been considered to be gluten-free and safe by every celiac organization that I know of.

California makes excellent olive oil, so if you have concerns about French olive oil perhaps switch to CA ones.

[ISAG]

I ordered organic olives to make my own olive oil - because I did not react to homemade olive oil by a friend of a friend. The olives arrived, and I reacted. I called the seller, and he informed me of the practice of flour spreading. That was around 5 years ago. I don't know where you did your research, probably on the web, well not everything is on the web.

Moreover, if you read me carefully, I explained that I have issues with all oils and that the problem of the flour spreading can be an explanation, not that it is the explanation.

I know my case is rare, that is why I was referred to the Mayo Clinic. I did not come here to convince you of my supersensitivity - you are not a doctor - but to see if others are in the same situation.

Be careful of the qualifications you are using, sharing thoughts and experiences is not spreading rumors. But saying I spread rumors is defamatory. 

[trents]

46 minutes ago, ISAG said:

I ordered organic olives to make my own olive oil - because I did not react to homemade olive oil by a friend of a friend. The olives arrived, and I reacted. I called the seller, and he informed me of the practice of flour spreading. That was around 5 years ago. I don't know where you did your research, probably on the web, well not everything is on the web.

Moreover, if you read me carefully, I explained that I have issues with all oils and that the problem of the flour spreading can be an explanation, not that it is the explanation.

I know my case is rare, that is why I was referred to the Mayo Clinic. I did not come here to convince you of my supersensitivity - you are not a doctor - but to see if others are in the same situation.

Be careful of the qualifications you are using, sharing thoughts and experiences is not spreading rumors. But saying I spread rumors is defamatory. 

Scott never accused you of spreading "rumors". He did not accuse you personally of anything, actually. In general terms he explained that he guards against the dissemination of "incorrect information" on this forum. You seemed to have taken it personally as an accusation. When you said, "I discovered wheat flour is used as an organic insecticide around olive trees in France, which can be an explanation", it would have been better to explain that you were told this by a seller as you shared in a later post. As it was, "I discovered . . ." sounds authoritative.

[Scott Adams]

23 hours ago, ISAG said:

I ordered organic olives to make my own olive oil - because I did not react to homemade olive oil by a friend of a friend. The olives arrived, and I reacted. I called the seller, and he informed me of the practice of flour spreading. That was around 5 years ago. I don't know where you did your research, probably on the web, well not everything is on the web.

Moreover, if you read me carefully, I explained that I have issues with all oils and that the problem of the flour spreading can be an explanation, not that it is the explanation.

I know my case is rare, that is why I was referred to the Mayo Clinic. I did not come here to convince you of my supersensitivity - you are not a doctor - but to see if others are in the same situation.

Be careful of the qualifications you are using, sharing thoughts and experiences is not spreading rumors. But saying I spread rumors is defamatory. 

I would like to mention that if the practice of using wheat flour as an "organic pesticide" were common, there would definitely be information about it on the internet. Why would those interested in such an environmentally friendly practice which might reduce pesticide usage not want to share such information on the internet so that others could do the same thing? I could not find any info at all about this, which is why I asked you about the source of your claim. I did not make this claim, I am simply trying to find out more information about it to determine what level of concern those with celiac disease need to have with regard to using olive oil.

[trents]

I could not find any information about it either.

[knitty kitty]

On 5/30/2023 at 1:04 PM, ISAG said:

Hi there,
Welcome to the forum!
I am wondering if there are other people as ultra-sensitive to gluten as me here.

I'm very sensitive, too.  I learned that other things happening in the body as part of the autoimmune response can make one feel as ill as though glutened.

Mast cell activation syndrome and sulfite hypersensitivity are two possible downstream consequences of Celiac Disease.  Mast cells release histamine as part of the immune response.  Histamine is found in foods, too.  Our bodies can cope with a certain amount of histamine, but once our cups runneth over, our bodies began to feel ill.  Sulfites in food and medications can trigger mast cells to degranulate (release histamine).  

I cannot eat any "gluten-free" product because I react to almost all manufactured products, 7 ppm is enough to make me react big time...

But if I make my plantain flour and tapioca I am fine - to avoid cross-contamination fom the skin, I soak the fruit/bulbs in soda ash before prepping them.

Some gluten free processed foods use Sulfites in processing, often in bleaching gluten free flours from "safe" alternatives like cassava, corn and nuts.  

I cannot find onions that are "clean" enough, as for the garlic and ginger it's difficult. I just started planting my own, hoping the biodegradation of gluten on the starter bulbs will be fast enough.

Sulfites are good and necessary for our bodies to function, but too much and not having the tools to process them causes problems.  Sulfites occur naturally in many common foods.  Ginger and garlic contain lots of sulfites.  Broccoli, cabbage, cauliflower and kale all contain high levels of sulfites. 

I found an olive oil I can have, but it was difficult. I tried maybe 20 different brands, but refused to give up since I need fat.

Olives also contain sulfites.  Different varieties and soil conditions can affect sulfite levels in plants.     

As for meat, that's also an issue. Even beefsteaks of a brand indicated gluten-free makes me react. 

That absorptive pad under cuts of meat contains Sulfites.  

Water is also an issue because it's filtered through unclean activated charcoal... I have to drink water imported from Europe. Or water from the tap filtered through the carafe of the market leader (tx god it works).

Sulfites occur naturally in activated charcoal.

Last, I can take no medicine orally (except for injectable products, because as my primary care provider indicated, all that is injectable can be eaten).

Medications can contain Sulfites as part of the chemical make-up of the drug itself and Sulfites can be added to medications as preservatives.

I have moved from France one year ago. Veggies and fruit were definitely cleaner there, I did have issues at times, but not as often. And no issue with meat, sometimes issues with chicken.

Also, I cannot find my remedy here: water kefir. None is clean enough. I had found one that was amazing, I had no bad reaction at all, but they are located in NC and no longer ship to California.

Certain bacteria in starter cultures and probiotics naturally produce Sulfites or sulfite gas (rotten egg f*rts) as they ferment the food in our intestines.

I would try making my own if I could find a source of clean sugar, but I have not so far, and without the kefir in my life, testing possibly contaminated product is challenging.

Sugar is bleached to whiteness by Sulfites.

So I work out strenuously, that's my only option to pick me up when I am down. Even when exhausted, I do it and feel better.

Too many Sulfites can be destructive.  Sulfites will break apart Thiamine Vitamin B 1  making it useless.  An excess of Sulfites in the body can precipitate a Thiamine deficiency. 

We need thiamine to provide energy for exercise and brain function.  We need extra thiamine in periods of physical stress like fighting a cold or having a chronic medical condition like diabetes or celiac.  We need more thiamine if we are physically active or are outside in hot weather.  We also need extra Thiamine in periods of emotional stress like a trans-Atlantic move or dealing with a chronic medical condition.  We also need more Thiamine if we eat lots of sugar and carbohydrates.  

Our brains use more thiamine thinking at a desk job than our muscles use running a marathon.

Nutritional deficiencies can occur because of a limited diet.  We may not get enough of the vitamins and minerals that help our bodies deal with histamine and Sulfites.  

Thiamine and molybdenum are needed to process Sulfites.  B12 Cobalamine, Vitamin C and the rest of the eight essential B vitamins are needed to process excess histamine.

Thanks for your help!

I followed the Autoimmune Protocol Diet, but I did not include fermented foods nor bone broth as these are both high histamine foods and I would become ill.  I chose low histamine foods and low sulfite containing foods.  This is explained in the book The Paleo Approach by Dr. Sarah Ballantyne, a Celiac mom, who designed the diet for herself and her Celiac kids.  The AIP diet has been scientifically shown to improve intestinal healing and to calm a wide range of autoimmune diseases.

PS: I do not know whether I have celiac disease or "mere" sensitivity, as I refused the gluten challenge that comes with the testing after the eviction test that made me completely healthy in 3 days 10 years ago (unfortunately a few months later I started reacting to gluten traces, then to even less than that). A young gastro educated in a top university recently agreed with me, saying it does not matter really to determine whether it's sensitivity or intolerance since it's all on the same spectrum. But another gastro in a very reputable hospital, old school, told me it's a totally different disease!!!!! 

  I suggest getting a DNA test for common Celiac genes.  I couldn't complete a gluten challenge either.  But I have two Celiac genes!  

Isabelle

Hope this helps!

[soellis]

What brand of olive oil was safe? I’m also navigating the ultra sensitivity waters and it’s the only thing left that could possibly be triggering me

[plumbago]

I've never heard of gluten being in olive oil.

[soellis]

I am reacting on the gluten trace elimination diet and it seems the most likely contender. I don't think ultrasensitivity issues are applicable to the typical celiac

[Scott Adams]

I'm not sure if you can find one that would be labelled gluten-free, as olive oil is naturally gluten-free and safe for celiacs. 

[soellis]

Tell that to my TTG and immediate symptoms 

[knitty kitty]

@soellis,

What are the other contenders? 

Are you consuming any dairy products?

 

[soellis]

No dairy, phase 1 gluten free contamination diet 

This is the food I ate that has caused the most recent symptoms: chicken breast, organic apples, organic asparagus, sweet potato, salt, black pepper, and olive oil in a gluten-free home

[knitty kitty]

@soellis,

How long have you been on the gluten free contamination diet?

I found the Autoimmune Protocol Diet worked best for me.  It allows time for healing before adding foods back in.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6892563/

What was your tTg?  What are your immediate symptoms?  Did you eat the apple peel?

[soellis]

Been strict gluten-free since diagnosis Nov 2022. Things got worse after going gluten-free despite strict lifestyle though I relied a lot on certified gluten free meals (primarily saffron kitchen) with homemade meals when I could manage. Started phasing in the Fasano diet the last 1-2 months and have been strict for 1.5 weeks. As of last labs prior to official Fasano diet start, TTG remains off my labs chart (250, don’t remember the units) with anemia and b12 deficiency quickly progressing. I ended up getting diagnosed with acquired adrenal insufficiency Dec 2023 and it seems to have been caused by the celiac. 

I am pretty confident it is the olive oil because the last massive reaction I had was to safflower oil on top of my symptoms being primarily neurological. I have looked into the AIP before but it doesn’t seem like a good fit, my celiac specialized nutritionist I got via my GI is working with me
 

 

[knitty kitty]

@soellis,

Have you been boosting your absorption of essential nutrients by supplementing with vitamins and minerals?  The anemia and B12 deficiency needs to be addressed.  Adrenal insufficiency is linked to Thiamine deficiency.  Which supplements are you taking?

A Gluten free diet can be nutritionally insufficient.  

 

Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/

Nutritional Deficiencies in Celiac Disease: Current Perspectives

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703793/

The Gluten-Free Diet for Celiac Disease: Critical Insights to Better Understand Clinical Outcomes

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10537989/