Celiac Rash Response to Krusteaz Gluten Free Cookie Mix

[Wendy Darling]

I’m experiencing a strange phenomenon and hoping to find answers. I was diagnosed with celiac two years ago. I experience the iconic celiac rash which has a strict history of flaring to gluten exposure and subsiding entirely in its absence. However, when I eat Krusteaz gluten free chocolate chip cookies I experience the rash within 20 minutes of consumption -yet- (and here’s the kicker) I experience  NO other celiac symptoms.
Typically, my gluten response is rash within 20 minutes, onset migraine within 1-3 hours, projectile vomiting that intensifies over the course of 3 days and subsided after the 5th, couples with knife like pain in my lower left abdomen for the next six weeks and this usually results in a hospital stay.... so, experiencing merely just the rash with these cookies is perplexing me. I’m wondering if exists a difference in varying degrees of response from wheat vs barley or rye. Perhaps I should contact Krusteaz and notify them of a potential contamination? Any ideas? I’d love to enjoy my cookies if a mere rash is all that’s at stake but I won’t till I learn more.

[cristiana]

Hi Wendy

This is an interesting subject.  When in doubt, it is always wise to contact the manufacturer.

In more recent times I have started to suffer from what my doctor thinks is eczema, but I'm beginning to think that it gets a lot worse after consuming certain foods.  I stay off gluten religiously, but it seems to be when I eat too many manufactured gluten-free cookies and cakes! 

In any case, I react differently with small and large amounts of gluten.  I suffer from projectile vomiting, chills and dizziness after consuming by mistake, say, a large piece of cake which is made with normal flour, and then days later I will get what feels like a burning stomach/gastritis, whereas if, by mistake, I eat something that might contain a tiny amount of gluten (the sort caused by cross-contamination) it will cause the burning stomach feeling within days, but I don't get that initial first vomiting etc reaction which is so horrendous.    Furthermore, because eating tiny amounts by mistake only affects me a bit later it is difficult at times to find out where the contamination occurred.  This happened to me once when I got a burning stomach within 24 hours of eating a certified gluten-free soup.  Then it happened again, when I finished the rest of the soup.  So I wrote to the manufacturers who tested that batch (I guess they must keep samples from each batch for a while?) and said it wasn't in their soup.   They were very gracious and in the interests of good customer relations sent me vouchers to buy more of their soup - but  I have to say I've been giving it a wide berth ever since, just in case it was their soup!  I'm sure it had to have been, but I guess I could have got glutened by something else.  

I don't know the product you are referring to as I live in the UK but does it contain oats?  A sizable minority of coeliacs are sensitive to the avenine in oats (even the pure ones processesd in gluten free lines).    I never had a problem with oats until after my diagnosis when I gave up gluten, strangely.

Cristiana

 

 

Edited May 4, 2021 by cristiana

[trents]

And there is likely a difference between "Gluten Free" and "Certified Gluten Free" or CGF. The latter typically has be subject to stricter standards of testing.

[cristiana]

Yes, I've often wondered what the different phrases mean.  One other variation we get in the UK is "free from gluten containing ingredients."  

[trents]

35 minutes ago, cristiana said:

Yes, I've often wondered what the different phrases mean.  One other variation we get in the UK is "free from gluten containing ingredients."  

I would take that one to mean, "We don't intentionally include known gluten sources in this formulation but we aren't addressing the possibility of cross contamination," which is probably the equivalent of "Gluten Free."

[cristiana]

18 minutes ago, trents said:

I would take that one to mean, "We don't intentionally include known gluten sources in this formulation but we aren't addressing the possibility of cross contamination," which is probably the equivalent of "Gluten Free."

I agree... and I find it all quite confusing.  And I learned on my last trip to France... seems a lifetime away now... that things seem much more relaxed in their labelling.   With the larger supermarkets in the UK, such as Sainsbury's or M&S,  I find if gluten isn't on the label, it's safe.  Any chance the food is processed in a factory alongside nuts, dairy, gluten is mentioned on the label, but in France I was quite ill when I applied the same rules to my shopping.  I soon learned I had to eat their certified gluten-free meals, but there didn't seem to be so much choice.  I think we are quite lazy here in the UK and eat far too much pre-prepared stuff, but in France they probably cook much more from scratch, that's probably why such a large range is not required.

[Scott Adams]

It is certainly possible that this product is made on shared lines, and your batch could have had issues, so it would be a good idea to call them. Above all, you shouldn't eat the rest of them, and should contact the company. I have a Nima Sensor which, if this happened to me, I would use to run a test for gluten. I only use my sensor to test things that I consume regularly, just to make sure that there isn't any issue.

[AlwaysLearning]

I checked and see that the current iteration of their gluten-free products do include the Certified Gluten Free logo, which means the mix should have undergone testing to stay under the parts per million limit. But considering that only a smaller percentage of their products are gluten free, I would be strongly suspicious of cross contamination. 

You are so lucky you managed to avoid a full-blown reaction and only got the early warning system alert instead. Thank you autoimmune system for not doing a total freak out, right?!

[Posterboy]

On 5/4/2021 at 1:21 AM, Wendy Darling said:

’m experiencing a strange phenomenon and hoping to find answers. I was diagnosed with celiac two years ago. I experience the iconic celiac rash which has a strict history of flaring to gluten exposure and subsiding entirely in its absence. However, when I eat Krusteaz gluten free chocolate chip cookies I experience the rash within 20 minutes of consumption -yet- (and here’s the kicker) I experience  NO other celiac symptoms.

Wendy Darling,

I looked up their ingredient list and there are two things that would trouble me.

Xanthan Gum some people react to it.....and while Xantham Gum typically is made from Corn products it can also be made from Wheat products and could be triggering your "Celiac Rash"...

Here is a nice article about it...

https://www.healthline.com/nutrition/xanthan-gum#TOC_TITLE_HDR_7

quoting from article...

"Some People May Need to Avoid or Limit It

While xanthan gum is safe for most, there are a few people who should avoid it.

People With Severe Wheat, Corn, Soy or Dairy Allergies

Xanthan gum is derived from sugar. The sugar can come from many different places, including wheat, corn, soy and dairy (16).

People with severe allergies to these products may need to avoid foods containing xanthan gum unless they can determine what source the xantham gum came from."

But this was very low in the ingredient list...

Much more likely it was the Sorghum (first ingredient)......and similar to corn.

Try changing your gluten free Cookie Mixture to one based on Rice or Tapioca or other common flour starch and your Rash should go away.

Pellagra can cause a rash too.....when people eat a heavily based corn diet.....and the sorghum (metabolically) can mimic Corn in the body.....this usually won't happen unless you are also low in Protein in your diet.

So if you are Vegan or Vegetarian there is a greater chance this is happening to you unintentionally...

A neat fact if you don't know it....Pellagra in Italian where it was first named.....means "Rough Skin" and traditionally/typically/historically when people where diagnosed as a "Pellagrin"....when they developed the "Pellagra Rash" and confirmed their diagnosis or remission (when it disappeared).....but today unless you are an Alcoholic it is never diagnosed today.

See this research about how eating a heavy diet of sorghum can trigger Pellagra...

Entitled "Endemic pellagra among jowar eaters"....Sorghum is known as Jowar in India where it is a common food staple in several of their states.

https://pubmed.ncbi.nlm.nih.gov/744647/

This  happens because both Corn and Sorghum is high in Leucine which interferes with our bodies metabolism of Niacin and why people usually develop the "Pellagra Rash" when relying heavily on Corn or Sorghum in their diet.

Here is a nice overview of it...

Entitled "Inhibition of Tryptophan → Niacin Metabolism by Dietary Leucine and by Leucine and 2-Oxo-isocaproate in vitro"

https://link.springer.com/chapter/10.1007/978-1-4684-5952-4_54

In short try changing your "Cookie Mixture" to a gluten free mixture also Sorghum free and this "Rash" you are  having should go away.

I am sorry I got a little deep in the weeds there with the research but I thought it might help you or the next person who comes across this thread.

I wrote Posterboy blog post about my experience of being diagnosed as a Celiac but going on to develop Pellagra....

Maybe it will help you to read it.

As I say in my blog post quoting

"Learn from my mistakes.

No man is so dumb as the man who won’t learn from other people’s mistakes."

quoting again from the above blog post.

"The Celiac Posterboy might say “(Unfortunately) for most patients it (Pellagra) is not recognized as Disease TODAY! By their admission (a professor of medicine/health professionals/doctors) Pellagra is OMITTED as a disease in most doctor’s differential diagnosis TODAY!”

If you have (a) Celiac disease diagnosis then you have been stung with/by this ignorance. That as Creighton’s Dr. Heaney says “In the United States, at least, Pellagra is a disease of the past – fortunately – and it is doubtful today that most health professionals would recognize it if a case happened to come to their attention.”

And I have found this is more true than not....when a Celiac develops a rash it is always DH and it (Pellagra) is not considered that in the majority of Celiac's (read whole blog post for more details of why this is so)......they actually have gone on to develop the "Pellagra Rash" instead....

And it explains perfectly why when you eat a gluten free but not Sorghum free gluten free mix it could be triggering your Rash reaction......because it is triggering the Pellagra rash in you.

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

Posterboy,

[trents]

Unless they were staples, basically living off them, I wouldn't worry about niacin deficiencies from eating corn or sorghum based gluten-free products. Sorghum has some wonderful nutritional benefits when used in a balanced diet. It might be a good idea to take a  gluten-free B-complex just to cover the bases.

[Posterboy]

Trents and Wendy Darling,

I don't know for certain that is what it is.....but it is a good working Hypothesis.  Wendy by changing your "Cookie Mixture" from one free of these ingredients (Xanthum Gum and Sorghum) you can test this hypothesis.

Then re-introducing this troublesome "Cookie Mixture" and if the Rash comes back....then you will know it is one of these ingredients.

Same as you might do for any other food allergen......this way you will  know to avoid Sorghum "Cookie Flour Mixtures" in the future.

Pellagra happens in Celiac disease as a  higher rate than most people are aware of ......and it (Pellagra) is common in other Rash/Skin disorders.

See this International Journal of Celiac disease article aka IJCD about it....

Entitled "Celiac Disease: Intestinal, Heart and Skin Interconnections"

http://pubs.sciepub.com/ijcd/3/1/6/

quoting from the IJCD section 3.

"3. Pellagra and Celiac Disease

The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]."

Pellagra and Celiac disease are connected diseases linked, in part, by Skin Rashes.

Here is some more research showing how Pellagra can trigger Skin Rashes.

Entitled "Pellagra occurring in a patient with atopic dermatitis and food allergy"

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-3083.2006.01871.x

Wendy you might also have developed SIBO.......SIBO when it triggers Pellagra can also cause Skin Rashes treatable with either Niacin (Flushing) or Niacinamide (Non-Flushing) form of Vitamin B-3.

See this research entitled "Pellagra and panniculitis (Skin Rash) induced by chronic bacterial colonisation of the small intestine ] aka SIBO

https://pubmed.ncbi.nlm.nih.gov/15798565/

In this article Vitamin PP (is the Vitamin B3 aka Niacin)....it stood for the "Pellagra Preventive Factor" as is still commonly known in some countries...

quoting from the above article...

"Biological exams revealed lowered plasma levels of vitamins PP (Niacinamide), B1, B6 and zinc, secondary to intestinal impairment induced by bacteria proliferating in the small intestine. The rash resolved with vitamin PP and zinc supplementation."

Note; these individuals were low in more than one B-Vitamin so as Trents recommended taking a B-Complex would/could be helpful in your case Wendy in treating your undiagnosed/misdiagnsoed Pellagra if indeed...the Rash improves from taking a B-Complex with your meals....

I wrote a Posterboy blost post about why and how Pellagra shows up in Celiac's maybe it will help you to read it.

Note: I say, in part, but if you are having Rashes as part of your Celiac experience it worth investigating some more.

Since we know Celiac's are low in many Micronutrients it can help speed your recovery.

Taking some Tryptohan might also help speed your recovery...

See this article about how taking Tryptophan could help your Villi heal...

https://www.news-medical.net/news/20201022/Tryptophan-found-in-turkeys-can-accelerate-intestinal-healing-in-people-with-celiac-disease.aspx

Which is another indication Pellagra is happening in Celiac's going  undiagnosed/misdiagnosed as Celiac disease instead which the International Journal of Celiac disease says happens in the Majority of Celiac's.

This research is 5+ years old.....I am just trying to raise the awareness of these connections so that people still suffering on a gluten free might speed their healing!

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

Posterboy,

[beemerw]

the box says it contains milk as well..and i just got a red dotted rash yesterday after eating some...Now it is blistered, just on my foot...i have had this before and just keep it clean and avoid them...i also took a zyrtec that helps with the itching