Tapioca Starch

[FayeBr]

Hi! 
I am relatively new to all this. Celiac for just over a year but suffered many years before that. It’s been a struggle and I have now eliminated gluten, dairy, soy, corn (the devil), oats and rice and now lectins. Starting to eventually feel better. In fact I’m mostly eating meat and vegetables. However, I have had ‘gluten’ symptoms for past few days that have floored me and I have narrowed it down to tapioca starch in a coconut yoghurt. New ingredient. Does anyone else have symptoms with tapioca starch at all? Worst I have felt for a while 😕

[Scott Adams]

Welcome to the forum! 

You're not alone, and others here have reported issues with tapioca as well, and here is a search of the forum for this topic:

https://www.celiac.com/search/?&q="tapioca"&type=forums_topic&search_and_or=and&sortby=relevancy

Can I ask how long you've been gluten-free, and has your diet been 100% gluten-free? I ask because have additional food intolerance issue at the time of a celiac diagnosis is quite common, and I had ~7-8 foods that I could not have for a few years. About 2-3 years after I started my gluten-free diet I slowly added those items back to my diet, and found that I could tolerate most of them again.

[FayeBr]

Just now, Scott Adams said:

Welcome to the forum! 

You're not alone, and others here have reported issues with tapioca as well, and here is a search of the forum for this topic:

https://www.celiac.com/search/?&q="tapioca"&type=forums_topic&search_and_or=and&sortby=relevancy

Can I ask how long you've been gluten-free, and has your diet been 100% gluten-free? I ask because have additional food intolerance issue at the time of a celiac diagnosis is quite common, and I had ~7-8 foods that I could not have for a few years. About 2-3 years after I started my gluten-free diet I slowly added those items back to my diet, and found that I could tolerate most of them again.

Many thanks for the welcome. 
I am in the UK. Diagnosed and been gluten free since February 21. So, early days for me. 
It has been hard with the early days being unable to function at all. Overwhelming fatigue, aches all over, neuro symptoms, tinnitus, brain fog, stomach problems,  etc etc. I have researched and researched and been on this site which has been a godsend. I eliminated all the others and only started feeling like myself(if I can remember what that was) after stopping lectins. Like it was the last piece of the puzzle. Until this tapioca malarkey. I eat very clean so can narrow it down to that. I’ve made so many mistakes and paid for them with week long to two weeks long symptoms. I’ve lost 3 stone but then I had put it on before diagnosis. I really hope I feel better for longer periods soon and would love a slice of cheese again 😊

[Scott Adams]

The articles we've run on lectins are a bit old, but are still interesting:

https://www.celiac.com/search/?q=lectins&quick=1&type=cms_records2&search_in=titles

[FayeBr]

34 minutes ago, Scott Adams said:

The articles we've run on lectins are a bit old, but are still interesting:

https://www.celiac.com/search/?q=lectins&quick=1&type=cms_records2&search_in=titles

Thanks for your help. It’s appreciated. I guess it’s just another week or two of the symptoms and then on the recovery road again 😊 

Another question I wanted to ask while here…. When you’ve had an accident like this or been ‘glutened’ somehow (which for me can be just a crumb) is it normal to have them in one area and. Then they move to another, then another? For instance, I will have numbness in my legs, which lasts hours and then It disappears and I get sore throat for hours and it goes on like that. The fatigue and brain fog seems to last forever. I guess this is all normal to everyone here. It has been good to read from people like yourself that it gets better and other foods can be reintroduced. Gives me hope 😊

[Rogol72]

2 hours ago, FayeBr said:

Thanks for your help. It’s appreciated. I guess it’s just another week or two of the symptoms and then on the recovery road again 😊 

Another question I wanted to ask while here…. When you’ve had an accident like this or been ‘glutened’ somehow (which for me can be just a crumb) is it normal to have them in one area and. Then they move to another, then another? For instance, I will have numbness in my legs, which lasts hours and then It disappears and I get sore throat for hours and it goes on like that. The fatigue and brain fog seems to last forever. I guess this is all normal to everyone here. It has been good to read from people like yourself that it gets better and other foods can be reintroduced. Gives me hope 😊

I react badly to soy and potato starch, both send me into a tailspin ... agitation for 5 or 6 hours and then I recover once it's passed through my system. I've got DH, so I get the telltale random pinpricks all over my skin when CC'd. I've removed all grains, nuts, seeds and anything in a packet basically. I stay away from anything that has starchy binders, fillers and thickeners or sounds "dodgy". The Autoimmune Paleo diet works best for me ... just meat, poultry, fish, veg and select fruits. Lectins are evil!!

I had a consultation with my Naturopath today, who is NCGS and siblings are Coeliac. She's got me on S. Boulardi, a probiotic with L. Rhamnosis and an Olive Leaf supplement to help seal the gut lining and proliferate the good gut bugs. Lots of polyphenols help increase Akkermansia in the gut which is said to seal the tight junctions of the intestines. Then maybe certified gluten-free Oats may be on the menu again from time to time. Here's an interesting article about it.

https://drhyman.com/blog/2021/07/26/akkermansia-muciniphila/

Just my thoughts, not advice.

[Scott Adams]

Unfortunately the symptoms of being glutened can vary greatly from person to person, from no symptoms to severe symptoms within minutes. Everyone seems to react a bit differently, and gluten can attach the gut, skin, and brain/nervous system, all to varying degrees depending on the person.

Be aware that gluten-free oats are fine for most celiacs, however, there are around 9% of celiacs who have a similar intolerance the avenin protein in oats as they do to regular gluten.

[Anniehall]

On 4/28/2022 at 11:16 AM, FayeBr said:

Hi! 
I am relatively new to all this. Celiac for just over a year but suffered many years before that. It’s been a struggle and I have now eliminated gluten, dairy, soy, corn (the devil), oats and rice and now lectins. Starting to eventually feel better. In fact I’m mostly eating meat and vegetables. However, I have had ‘gluten’ symptoms for past few days that have floored me and I have narrowed it down to tapioca starch in a coconut yoghurt. New ingredient. Does anyone else have symptoms with tapioca starch at all? Worst I have felt for a while 😕

I haven't noticed any issues with tapioca but I have cut out coconut because it seemed to be a possible symptom trigger. Maybe it's the coconut? 

[Rogol72]

3 hours ago, Anniehall said:

I haven't noticed any issues with tapioca but I have cut out coconut because it seemed to be a possible symptom trigger. Maybe it's the coconut? 

I think you may be on to something with the Coconut. Coconut oil affects me, it's subtle but I can tell ... Coeliacs with DH seem to be more sensitive that the average Coeliac.

Tilda make a gluten free steamed rice with desiccated coconut .. no good. I've also tried a gluten free coconut milk mixed in with home cooked basmati rice about a year ago, no good. So it just may be the coconut.

[Anniehall]

57 minutes ago, Rogol72 said:

I think you may be on to something with the Coconut. Coconut oil affects me, it's subtle but I can tell ... Coeliacs with DH seem to be more sensitive that the average Coeliac.

Tilda make a gluten free steamed rice with desiccated coconut .. no good. I've also tried a gluten free coconut milk mixed in with home cooked basmati rice about a year ago, no good. So it just may be the coconut.

I get some type of reaction from rice even but pretty much all grains give me some sort of reaction. Some of them it's just acne. Even quinoa I'm covered in mini pimples everywhere and it's a seed. Any plant based protein I would be suspect of. Tapioca is a root veggie in a totally different food family than grains so I seem to have no issues with it.  Although from what I just looked up if you're allergic to latex or rubber I guess tapioca is in the same family. I found this too. Maybe this will help you.  

"Some people with latex allergy have allergic reactions when eating particular foods, including avocado, banana, chestnut, kiwifruit, passionfruit, plum, strawberry and tomato. This is because some of the proteins in latex that cause latex allergy are also present in these fruits." 

Sounds like these are latex cross reactives.  Strange. A lot of the fruits mentioned here are also stone fruits which I have mild reactions to (acne) unless combined with other sensitivities.  I don't react to Banana or avocado though.  

Holy crap though That is probably why in another post a person was saying their rash is worse when elastic is touching their skin. I wonder if they have a latex allergy because rubber is related to latex ( same plant family)and elastic is made of latex. I probably can handle tapioca because I don't have a latex allergy. I thoughts tubers was a plant family but it's actually just any root veggie I guess. Not an actual plant family. Didn't realize the latex tapioca connection until now. Hopefully this helps. I gotta find that other post about the elastic bands. 

 I react  mildly to garlic and onion a bit but for some reason when I combine it with coconut it's been way worse in the past so I wonder if I just have mild reactions to both that go unnoticed when I consume one in the absence of the other. 

Just now, Anniehall said:

I get some type of reaction from rice even but pretty much all grains give me some sort of reaction. Some of them it's just acne. Even quinoa I'm covered in mini pimples everywhere and it's a seed. Any plant based protein I would be suspect of. Tapioca is a root veggie in a totally different food family than grains so I seem to have no issues with it.  Although from what I just looked up if you're allergic to latex or rubber I guess tapioca is in the same family. I found this too. Maybe this will help you.  

"Some people with latex allergy have allergic reactions when eating particular foods, including avocado, banana, chestnut, kiwifruit, passionfruit, plum, strawberry and tomato. This is because some of the proteins in latex that cause latex allergy are also present in these fruits." 

Sounds like these are latex cross reactives.  Strange. A lot of the fruits mentioned here are also stone fruits which I have mild reactions to (acne) unless combined with other sensitivities.  I don't react to Banana or avocado though.  

Holy crap though That is probably why in another post a person was saying their rash is worse when elastic is touching their skin. I wonder if they have a latex allergy because rubber is related to latex ( same plant family)and elastic is made of latex. I probably can handle tapioca because I don't have a latex allergy. I thoughts tubers was a plant family but it's actually just any root veggie I guess. Not an actual plant family. Didn't realize the latex tapioca connection until now. Hopefully this helps. I gotta find that other post about the elastic bands. 

 I react  mildly to garlic and onion a bit but for some reason when I combine it with coconut it's been way worse in the past so I wonder if I just have mild reactions to both that go unnoticed when I consume one in the absence of the other. 

https://www.encyclopedia.com/science/encyclopedias-almanacs-transcripts-and-maps/spurge-family-0#:~:text=of these plants.-,Economic products obtained from spurges,grown widely in the tropics.

[knitty kitty]

@Anniehall and all,

Dermatitis Herpetiformis is pressure sensitive.  DH blisters will form where there is pressure on the skin.  

DH will form under elastic due to the pressure on the skin. 

Latex allergy can be life-threatening, causing anaphylaxis (not being able to breathe), or can cause a reaction like contact dermatitis if an IgE mediated response, hives for example.

Sulfites can trigger DH outbreaks.  Sulfites are used in processing of some foods to keep them from turning brown. Sulfites are frequently used on coconut, tapioca starch, corn starch, potato starch, etc. 

Garlic and onion contain naturally occurring Sulfites. 

Your body may be able to cope with smaller amounts of an allergen, but if too much accumulates, your body can't cope and a reaction happens.

Like having a cup half full may be tolerable, but if more is added, the cup runs over and a reaction happens.

Molybdenum is helpful in removing Sulfites.  Molybdenum is a trace mineral of which we can get insufficient amounts. 

Knowledge is power!  

Keep learning!  Good job!

[Rogol72]

12 minutes ago, knitty kitty said:

@Anniehall and all,

Dermatitis Herpetiformis is pressure sensitive.  DH blisters will form where there is pressure on the skin.  

DH will form under elastic due to the pressure on the skin. 

Latex allergy can be life-threatening, causing anaphylaxis (not being able to breathe), or can cause a reaction like contact dermatitis if an IgE mediated response, hives for example.

Sulfites can trigger DH outbreaks.  Sulfites are used in processing of some foods to keep them from turning brown. Sulfites are frequently used on coconut, tapioca starch, corn starch, potato starch, etc. 

Garlic and onion contain naturally occurring Sulfites. 

Your body may be able to cope with smaller amounts of an allergen, but if too much accumulates, your body can't cope and a reaction happens.

Like having a cup half full may be tolerable, but if more is added, the cup runs over and a reaction happens.

Molybdenum is helpful in removing Sulfites.  Molybdenum is a trace mineral of which we can get insufficient amounts. 

Knowledge is power!  

Keep learning!  Good job!

I guess that's why it forms on the hips, from the pressure of clothing ... elbows and forearms if you're working at a desk all day long. I've got the scars!

[Anniehall]

On 4/30/2022 at 5:10 PM, knitty kitty said:

@Anniehall and all,

Dermatitis Herpetiformis is pressure sensitive.  DH blisters will form where there is pressure on the skin.  

DH will form under elastic due to the pressure on the skin. 

Latex allergy can be life-threatening, causing anaphylaxis (not being able to breathe), or can cause a reaction like contact dermatitis if an IgE mediated response, hives for example.

Sulfites can trigger DH outbreaks.  Sulfites are used in processing of some foods to keep them from turning brown. Sulfites are frequently used on coconut, tapioca starch, corn starch, potato starch, etc. 

Garlic and onion contain naturally occurring Sulfites. 

Your body may be able to cope with smaller amounts of an allergen, but if too much accumulates, your body can't cope and a reaction happens.

Like having a cup half full may be tolerable, but if more is added, the cup runs over and a reaction happens.

Molybdenum is helpful in removing Sulfites.  Molybdenum is a trace mineral of which we can get insufficient amounts. 

Knowledge is power!  

Keep learning!  Good job!

Yeah. I've spent most of this last year on a very limited diet and fasting a lot, plus testing foods one at a time to see what I reacted to. I had a 33 day fast after beginning to eat again and I kind of just lost it after. I didn't eat gluten but I ate a lot of other suspect reactors. I didn't react to them for about a month and a half and then bam. Skin was breaking out starting rushing and then hives and blisters trying to form. Guess I shouldn't have done that. Luckily the vitamin C and lysine makes the rash go away quickly. Right now it looks like little tiny pin pricks. About 17 of them on my butt. Feels like pins and needles but not intense itch. Hopefully will be gone tomorrow. 

[clarita]

On 4/28/2022 at 11:16 AM, FayeBr said:

Hi! 
I am relatively new to all this. Celiac for just over a year but suffered many years before that. It’s been a struggle and I have now eliminated gluten, dairy, soy, corn (the devil), oats and rice and now lectins. Starting to eventually feel better. In fact I’m mostly eating meat and vegetables. However, I have had ‘gluten’ symptoms for past few days that have floored me and I have narrowed it down to tapioca starch in a coconut yoghurt. New ingredient. Does anyone else have symptoms with tapioca starch at all? Worst I have felt for a while 😕

Yes. I was finally feeling fantastic after years of feeling exhausted because I fully eliminated wheat and corn. But yesterday I started feeling light-headed and awful, and this morning when I woke up my stomach was burning. I'm certain it's the tapioca starch in the gluten-free cookies I ate last night. I did have some issues with tapioca in the past when I tried an elimination diet, but was hoping that it wasn't true. It's true. The good news is arrowroot powder is a great substitute and is known to be easy on the digestive system (thus, the arrowroot baby cookies). It's such a shame that so many gluten-free flours are made with tapioca starch instead of arrowroot.