Unknown source of gluten

[heatman]

For the past month I've been having gluten headaches, eczema and canker sores and cannot figure out where the hidden gluten is. I switched dish washer detergent (to Kirkland) but that is really the only thing I've changed. I've scoured my medications and bath/body products, looked at every food label, kept a food journal, don't eat out and still can't come up with the culprit. Does anyone have any detective tips to share? I've been gluten-free for about 3 years so I've done the big kitchen clean out and have been doing well up until recently. Thanks in advance for any help you can offer. 

[Ennis-TX]

Shampoo, nail polish, hand soap, hand lotion, perfume, lip stick, mascara, other cosmetics....if you touch it then touch your food you CC it.  Hmm condiment jars, spices are notorious for some to get CC in a batch, any medications perhaps the last lot you got was CCed?   Is thee any contruction near by? Some wall plasters are made with wheat flour in them. Try using some freezer paper for a clean prep surface and perhaps cooking your meals in some new microwave cook ware in case you CCed a pot or pan. Other thoughts some foods have common/random CC issues like mushrooms and strawberries have major CC issues in the industry due to growing practices.  My best guess with be something that is normally safe or gluten-free had a CC issue in packing or at the store.  Heck I once got CCed by fresh lettuce from a store in the next town...took me a while to realize it but the open bakery is right next to the air curtain fridge area for fresh produce and flour was floating over from the bakery to the produce.

[TexasJen]

What about sunscreen?  I put sunscreen on my kids all the time - and we use waterproof so it is impossible to wash your hands and get it off! I seem to always have a residue on my hands from sunscreen these days....... And some sunscreens use either wheat flour or oats in the mix.

[heatman]

I will look into sunscreen. My baby is sensitive to dairy and soy so for myself and the baby I use Badger and for my 4 year old I use Copertone babies. Badger should be okay but maybe CC in manufacturing is getting me. Thanks everyone for the help!

[flowerqueen]

Hi, I live in the UK and have not heard of this product, however, I have heard of gluten being in some washing-up liquids, so it is possible that dishwasher products could be effected too. The best thing to do, to eliminate (possibly) the product from your investigations, is to contact the manufacturers. 

[knitty kitty]

heatman, 

the symptoms you described may be due to vitamin deficiencies... 

Celiac Disease causes malabsorption which results in malnutrition.  Even on a gluten free diet malnutrition may occur.  

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Deficiencies of the B vitamins can manifest as skin problems, intestinal upsets, and headaches.  

https://www.celiac.com/articles/24658/1/A-IDifferential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

The nine B vitamins work together, so all should be supplemented if one is low.  

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Celiacs that supplement B vitamins do better.

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The B vitamins are water soluble and need to be replenished every day.  They are used up quickly when under stress.  

Fat soluble vitamins, A, D, E, and K, may need to be supplemented, too. 

You may want to consider discussing vitamin and mineral deficiencies with your doctor.  

I thought I was getting glutened somewhere, but after turning my house upside down, changing my shampoo five times, and lots of research, it turned out I had vitamin deficiencies.  After only a few days of supplementing my B vitamins, my skin began to clear up and I started feeling much better.  I hope my experience can help you on your journey to wellness.

 

 

[heatman]

Thank you! How very helpful. I will look into a B supplement. That makes good sense since I'm so very careful. Thanks for the links. 

[Ennis-TX]

On the B-Vitmins I find taking liquid health Stress & Energy and Neurological Support at 1 tbsp each 3 times a day before each main meal works best. The great thing about Liquid Health is that it is in liquid form that you measure out.  Highly absorb able, no pills, and mixes with tea or juice, I take it with a blend of aloe vera juice and green tea myself. You can order it on amazon or luckyvitamin.com normally has the best pricing. Let me get you a link to the website with info on the products. NOTE this same company makes other blends that might work better for you.

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[cristiana]

I've got low ferritin and when this happens I get itchy skin  and canker sores.  My consultant tells me I need to have my ferritin above 40 before I'll see any real improvement in my canker sores.   Just thought I'd throw another possible deficiency into the ring,  Hope you get some answers.  

[knitty kitty]

Christiana, 

Low ferritin (iron) is often accompanied by low vitamin B 12, folate (another B vitamin), vitamin C, calcium, and vitamin D.  

These vitamins and minerals all work together.  The B vitamins are water soluble and need to be replenished every day.  Malabsorption from Celiac disease can make getting enough nutrients difficult without supplementation.

Here's an article that may help.

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Be sure to discuss supplements and vitamins with your health care provider.  

Hope this helps!

[knitty kitty]

Here's another article on vitamin deficiencies that occur in a similar malabsorption disease.  

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[squirmingitch]

@Ennis_TX

Can you please provide links to info. on cc of strawberries please?

[Ennis-TX]

OK quote broken but we discussed it here https://www.celiac.com/forums/topic/117613-mushrooms-hit-and-miss/ 

Issues came down to 3 things with them, 1. Common practices for growing them include doing it in beds of straw...like wheat. 2. They use a whole like of sprayed pesticides with strawberries and this can react with some people. and 3. Strawberries are a very high histamine food and can irritate some people. These are what you need to consider if your having issues with strawberries. I moved to just suing sugar free straw berry preserves from smuckers or polaner and have not had any issues since with them. >.> I also use extracts and emulsions for strawberry in smoothies and my baking.

 

[squirmingitch]

Thanks, will take a look at it. I'm not sure but it seemed I was having some problems when I was eating fresh strawberries. We had some great fresh ones in our stores & fantastic prices too. I adore strawberries, I mean I'm bonkers over them, especially fresh but it ended up with them on my "possibly a problem" list so I quit them. Haven't re-tested yet. That's still to be done. I will say that I was washing them well with soap & water. 

I wonder why you can do the sugar free preserves????

[cyclinglady]

This is getting a bit off topic, but although there is a possibility of cc with strawberries grown in straw, the risk should be small.  Why?  I live in CA where commercially grown strawberries are grown in masses (I think we are the leading state in most produce).  Strawberries are surrounded by plastic.  Who has time to spread draw except little boutique farmers who must have time in their hands and an aversion to black plastic.  They lay down the plastic in big rows, and plant the berries (holes on plastic).  The plastic keeps in moisture and keeps out weeds.  Even tiny lots here use plastic.  

Anybody can react to the amount of pesticides on berries.  Google and you will find it is the dirtiest fruit I terms of pesticide contamination.  Best to get organic, if you can.  And Ennis is right too about histamines.  Overdose, and I hives....wait, I get hives doing nothing.....okay, my Dad get a rash from eating too many strawberries.  

[squirmingitch]

I don't really buy into the cc business on the strawberries. I live in FL where we grow a lot of strawberries. Since I was a teen & I'm 60 now, I have done plenty of U-Pick strawberries at small growers & have seen countless large commercial acreage plantings & all were on plastic. The only times in my life that I have seen strawberries growing on straw is in private gardens including my own many. many years ago. Plus I wash them individually with dish soap & water. I wash all fruits & veggies with soap & water (except head lettuce or cabbage which would be impossible but you take off the outer leaves so it's cool) because I have seen the pickers & even been employed myself picking fruit & people eat sammiches & then go right back to work. There are no hand washing facilities so gluten hands can be all over the produce. That is not to mention people at the grocery store who have stopped at a fast food joint & had a burger eaten with their hands & then proceed to the store where they pick over fruits & veggies.

I do know about all the pesticides, fungicides etc.... that are used on the dirty dozen of which strawberries are one. I do wonder if that could be the reason I might be having a problem with them. I've also considered they might just be higher in iodine content which could kick up the dh rash. Can't find any real info. on the iodine content of strawberries. I suppose it's also a possibility that eating the strawberries puts me "over the top" on the histamine scale. Still, I have to test them again.

I think Jane Anderson has some very good points & info. but also think (IMO) she goes off the charts at times. 

[Gemini]

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I don't really buy into the cc business on the strawberries

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I think Jane Anderson has some very good points & info. but also think (IMO) she goes off the charts at times. 

I would have to agree with these statements although I think Jane Anderson rarely has good points to make.  She who thinks everything is contaminated and gives people the impression Celiac's need to live in a bubble. 

[Ennis-TX]

>.> I like my bubble life, keeps me nice and safe. lol but I have mind fog from inhaled flours,.....and this bloody corn allergy, get a dang skin peeling blistering rash from having corn touch me. I have other reasons to like my bubble life.

[cyclinglady]

Well....I like Jane Anderson.  Sure, she is super conservative on her approach to gluten free, but she has DH.  If I had DH, I would be SUPER cautious.  Even now, I have had hives daily....all over my body...like even the soles of my feet and the palms of my hands.  The itching is intense.  However, I can get relief using antihistamines as prescribed by my allergist.    I CAN NOT IMAGINE itching and not getting relief!  I thank God for back scratchers (they can reach even the soles of your feet while in bed).  

I can say that my hives are diminishing.   My doctors (allergist, GI and PCP) think they are autoimmune.  They are not sure hives like mine are a separate AI issue or related to celiac disease or Hashi's.  I am beginning to think mine are celiac-related, because my hives appear typically after my gut starts to hurt and always in the late afternoon like clockwork (histamine being released in the gut is one theory).  This is my third bout since my diagnosis and each time they become progressively worse and last longer (2, 3 and now 5+ months).  I can just move forward or go crazy trying to determine a possible gluten source or even blame celiac disease.  Believe me, chronic hives that may last a lifetime weighs heavily in my mind.  

Maybe you will see me more in the Super Sensitive section.  Because, there is, honestly,  very little research about celiac disease after diagnosis.  Some of us do well and heal.  Others of us inherit another AI issue or whatever.  Some of us get sick again and again and we just about pull out our hair trying to figure it out.  I have had Hashi's for 20 years, yet the hives have only started after my first glutening that took me down three years ago (which is weird because I only had anemia when I was initially diagnosed).  

I must say that I feel too good to even consider refractory celiac disease.  So, I do not want to discourage anyone.  I seem to bounce back.  

What can I say?  Celiac disease is awful.    But we have lives to live and families to love.  Retro to the 70's, "Keep on Trucking!"

[heatman]

My detective hat is finally hung...after a feel-miserable-day I finally figured out the culprit--Jimmy Dean turkey links. I thought I had fully researched them in the past but decided to give it another go tonight. Mysterious "caramel coloring" maybe to blame. Frustrated with myself for not checking them closer yet very relieved there's something concrete to point to.

I started supplementing the B vitamins too. I felt great when I was on prenatals so I'm sure I'm a bit deficient, especially since I'm nursing. Great advise!

thank you, everyone, for your help!

[GFinDC]

Hmm, here is the list of ingredients for the pre-cooked turkey sausage links.  I am not sure if they are the really the problem, but I don't eat them myself, so who knows?  Carmel color is generally safe and is derived from corn in the USA at least.  Maybe it would be good to contact the company and see what they have to say.

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Ingredients

TURKEY, WATER, CONTAINS 2% OR LESS:  POTASSIUM LACTATE, SALT, SPICES, SODIUM PHOSPHATE, DEXTROSE, SUGAR, SODIUM PROPIONATE, SODIUM DIACETATE, BHT, CITRIC ACID, CARAMEL COLOR.

 

@strawberry-phobes;  I don't eat strawberries myself because they make me sick.  I don't think they are glutened, but they cause a problem some other wonderful way.

[Ennis-TX]

I never tried jimmey dean as they do not say gluten free, but I use another brand for cooking in my kitchen for others and I love using turkey sausage and bacon for making stocks and flavoring foods I eat (Meat digestion issues personally). Check out this link and browse more products look for the gluten-free label they have all kinds of sausage links etc. Open Original Shared Link

[Beverage]

About the hives ... When I do my annual skin prick allergy testing, fungus is always my worst thing.  The only time I've gotten hives is when I have had something else going on to do with fungus.  

One time Athlete's foot, thanks to a roomie bringing it home, and I had hives for 6 months every night until I could finally get rid of the problem. And it wasn't the really bad athlete's foot, it was not oozy, just itchy at night only, and the doc just wouldn't even give me a prescription for it cuz she was too lazy to do a skin sample.  Nothing worked on my own until I started soaking feet in vinegar every day and again in middle of the night.

Another time I got hives was recently, couldn't figure it out, no athlete's foot. But gosh I did have a little itchy and flaky scalp in one spot. Doc said it was seborrheic dermatitis (a yeast type fungus) and gave me prescription shampoo for it.  After only 1 use, the hives dramatically dropped off to almost nothing. However the shampoo was making my hair fall out, ugh. So I tapered off the nasty but effective shampoo and found that putting apple cider vinegar (keeping scalp acidic which the fungus do not like) on after every shampoo works to keep it off (let sit for a few minutes and rinse). The best part is no more hives. 

So what I'm saying is .... hives can be a sign of something more systemic. Could there be some other aggravation going on for you?  My Athlete's foot and dermatitis were very very very mild, hardly noticeable really, but since fungus is one of the things my body really does not like, they were enough to cause enough inflammation and histamine to trigger the hives.  

Also I have not been able to smell anything for years (almost burned down the house several times not knowing I'd set something in the oven on fire and couldn't smell it, got asphyxiated from exhaust and didn't know it, and on and on, not good).  You just have super bad allergies the docs said...well, when I kicked the dermatitis on my scalp a little miracle happened in about 3 days ...  I can now smell just fine!!!   My philosophy now is totally "it's all related!"

 

[Gemini]

I am sensitive also and take this diet very seriously but there are people like Jane Anderson who say things that no Celiac organization would back up. Just plain crazy stuff. Regardless of whether you have DH or are a sensitive Celiac, no one should put themselves into a bubble to live. Mental health is just as important as physical health.

As for the hives, I have the same hives problem although they do not cover my whole body. Do you have seasonal allergies or the dreaded mold allergies? Because that can play heavily into a hives problem.  Mine were not bad until I had 5 deaths in my family over 2 1/2 years.  Then they became really bad. I started sublingual allergy treatment about 2 years ago and now, the problem has dramatically improved.  It is the mold that does it and the emotional stress of grieving didn't help. On a humid day, I can watch the hives appear and then when the air dries out, they magically go away. But they are far less dramatic and I get only small patches of them now. The allergy treatment seems to be working even given the fact I have 4 AI diseases. Hives are horrible and like you, I was not content to hear that the docs have no idea and you may have to live with them.....I don't think so!  I think for many of us, it is a combination of factors that cause hives.  But it does take a while to figure it all out.

 

[Chrismark]

I had been gluten free for several years, and had headaches, dry eyes, and dry scalp.  I found that the supplements that I was taking were not being absorbed by my body.  Less than 50 % was being absorbed.  The amount of the vitamins that was not being absorbed was going into my liver.  When that happens, insufficient water went into my head, causing the side effects.  I started using supplements made by a company that specializes in over 90% absorption.  After I started on these vitamins the headaches and my dry eyes improved greatly.  I don't know if this is your problem, but it might be worth checking out.