My doctor thinks I'm allergic to gluten!

[PinaKnudson]

I have battled a horrible itchy rash on my legs for over 10 years. It was never on both legs at once but has been on my right leg at times then on my left leg at other times. It has in the past just came and went away at different times. Several doctors including dermatologists have always told me it's dermatitis and given me steroids to take by mouth and using a steroid cream on it. This time it started back again about 5 months ago and I started itching elsewhere on my body. Prior to this I only itched on the rash on my leg. This time also my leg and ankle swelled with the rash. My arms and back started itching also my scalp and ears, neck, face, hands. It gradually got so bad I went to my family doctor and he and I talked and he recommended that I try a gluten free diet. So I did and I was very diligent about it and in 2 weeks noticed how much better my leg was. The rash had always been on my shin area on the front of my leg between my knee and upper ankle area. So after 4 weeks the rash on my leg and the itching elsewhere stopped. I unknowingly ate something with gluten on Thanksgiving and since then it's gotten worse with the rash on my leg and the swelling (only on my leg) coming back and itching everywhere. I'm still checking everything and trying very hard to avoid any gluten. I'm pretty cautious about any body wash, shampoo, lotions, creams, laundry soap etc. I've checked all my supplements and they don't have any gluten. I have an app on my phone that checks for gluten and other allergens that I scan everything before I buy it. Does anyone have any suggestions on what they think could have made this flare up so bad? I have used red light therapy on my leg in the past to heal the rash. It helped but didn't go completely away until I eliminated gluten. The rash is terrible now and I just started red light therapy again to see if it helps. Thanks for any insight into this. 
 

[trents]

Welcome to the forum, @PinaKnudson!

The gluten rash is known as dermatitis herpetiformis (DH). It is the epidermal (skin) expression of celiac disease. Does your rash have blisters or pustules in the bumps? That is a defining characteristic of DH. It's too bad you did not have celiac disease testing done before you embarked on your gluten free diet. There is a blood test to look for antibodies produced by celiac disease if one is still consuming gluten on a regular basis. Those with DH may also have damage to the small bowel villous lining. That can be checked via endoscopy with biopsy if gluten is still being consumed on a regular basis. There is also a test for DH via skin biopsy but many dermatologists don't know how to do the biopsy correctly. Samples need to be taken between bumps and not on them. You might want to look into this the next time you get "glutened" and there is a fresh outbreak.

Also, once you have been on a gluten-free diet for a significant period of time, reactions to gluten exposure typically produce more intense reactions. At least this is true for the enteric expression of celiac disease and I'm assuming it would be true also for the epidermal expression but I don't know that for sure.

[Wheatwacked]

 

Welcome to the forum PinaKnudson.

        In one sense the doctors were right.  It is dermatitis.  Dermatitis Herpetiformis though is not an allergy.  It is an autoimmune disease caused only by gluten exposure.  A Celiac blood panel set of tests while eating at least 4 slices of bread a day for two weeks or more may or may not come back positive.  A dermatologist can take biopsies adjacent to the rash for a diagnosis.  Unfortunately the general perception of Celiac Disease is that it has to have gastrointestianal symptoms and is primarily a childhood disease that one grows out of.  So your rash is diagnosed as a dermatitis of unknown etiology.  Even with negative serology and no gastro symptoms many have small intestine damage, leading to malabsorption.  If that is untreated eventually will present with symptoms caused by vitamin and mineral deficiencies that are often misdiagnosed as other diseases.  A shame because DH and it's relation to gluten is not newly found.

 

1 hour ago, PinaKnudson said:

So after 4 weeks the rash on my leg and the itching elsewhere stopped. I unknowingly ate something with gluten on Thanksgiving and since then it's gotten worse

             Dr. Warren Heymann: Aha! The Iodide Paradox Now Makes Sense!  The exacerbation of DH by iodides was demonstrated in a study of the KI patch test performed in 26 patients with DH. All 5 patients with active disease, but not on treatment, had a positive test, while only 2 of 6 patients on a gluten-free diet, and only 1 of 8 on dapsone, were positive.  Louis Duhring described DH in 1884; the observation that iodides could aggravate the disorder was recognized 7 years later (when Benjamin Harrison was President).  KI [potassium iodide] is useful in most neutrophilic disorders. DH is an exception because of KI’s conformational effect on TG3.  

          Dermatitis Herpetiformis  The most common association of dermatitis herpetiformis is with GSE. However, the severity of GSE [gluten sensitive enteropathy] in individuals with dermatitis herpetiformis varies hugely and may be clinically silent or mild. Consequently, all patients with dermatitis herpetiformis should be reviewed by a gastroenterologist and investigated accordingly. 

 

 

[PinaKnudson]

1 hour ago, trents said:

Welcome to the forum, @PinaKnudson!

The gluten rash is known as dermatitis herpetiformis (DH). It is the epidermal (skin) expression of celiac disease. Does your rash have blisters or pustules in the bumps? That is a defining characteristic of DH. It's too bad you did not have celiac disease testing done before you embarked on your gluten free diet. There is a blood test to look for antibodies produced by celiac disease if one is still consuming gluten on a regular basis. Those with DH may also have damage to the small bowel villous lining. That can be checked via endoscopy with biopsy if gluten is still being consumed on a regular basis. There is also a test for DH via skin biopsy but many dermatologists don't know how to do the biopsy correctly. Samples need to be taken between bumps and not on them. You might want to look into this the next time you get "glutened" and there is a fresh outbreak.

Also, once you have been on a gluten-free diet for a significant period of time, reactions to gluten exposure typically produce more intense reactions. At least this is true for the enteric expression of celiac disease and I'm assuming it would be true also for the epidermal expression but I don't know that for sure.

To answer your question on if there are blisters or pustules in the bumps, the answer is no. There never have been. 

[trents]

2 hours ago, PinaKnudson said:

To answer your question on if there are blisters or pustules in the bumps, the answer is no. There never have been. 

Then it may just be an allergy to wheat or the gluten in wheat. Celiac disease is actually an autoimmune disorder, not an allergy. It uses and entirely different immune system pathway than do allergies.

[PinaKnudson]

3 hours ago, trents said:

Then it may just be an allergy to wheat or the gluten in wheat. Celiac disease is actually an autoimmune disorder, not an allergy. It uses and entirely different immune system pathway than do allergies.

Is this site only for people that are diagnosed with Celiac disease? I didn't know that was a requirement. 

[trents]

12 minutes ago, PinaKnudson said:

Is this site only for people that are diagnosed with Celiac disease? I didn't know that was a requirement. 

I did not intend to communicate that but it is true that the celiac.com community is focused on non allergic gluten disorders. A high percentage of our forum participants have not yet been diagnosed with celiac disease but suspect they might have it (or NCGS) and come here for advice and direction to explore that possibility. If an allergy to gluten containing grains is actually the issue it might be more helpful to engage a forum dedicated to allergies.

[Wheatwacked]

Nope, not a secret society 🚽 

"The purpose of this site is to provide people who have celiac disease and are not aware of it with a means of figuring out what their problem is, and to help those who know they have it to lead more comfortable and healthy lives."

 

11 hours ago, PinaKnudson said:

So after 4 weeks the rash on my leg and the itching elsewhere stopped. I unknowingly ate something with gluten on Thanksgiving and since then it's gotten worse with the rash on my leg and the swelling (only on my leg) coming back and itching everywhere.

Due to DH’s intensely pruritic nature, intact vesicles are rarely seen

         : Clinical Presentation of Dermatitis Herpetiformis DH typically presents with clusters of tiny, clear vesicles atop flesh colored or erythematous papules or plaques symmetrically distributed on extensor surfaces of the body such as the elbows, arms, shoulders, knees and buttocks (Fig 1). Progression to a generalized distribution is uncommon. Due to DH’s intensely pruritic nature, intact vesicles are rarely seen as patients mechanically disrupt them by scratching. Less commonly, lesions occur on the oral mucosa, scalp and face. DH can also present as digital purpura that resembles a vasculitis. Palms and soles are routinely spared. Symptoms include painful burning, stinging, and variations in the intensity of itching.

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful: