Is it common to develop a wheat allergy in addition to Celiac Disease?

[Stephanie Wakeman]

Hello Everyone,

I was diagnosed with Celiac disease over 15 years ago by the gold standard of endoscopy.  Over the years, I've had a couple of accidental ingestion of gluten.  The last 2 accidents, I stared to develop symptoms of an allergic response IN ADDITION to the typical GI symptoms experienced with gluten exposure.  A couple weeks ago, I ate some pasta that I thought was 100% chickpea, but instead it was a wheat/chickpea blend.  I actually had an anaphylaxis reaction and needed medical attention.  I now have an Epi-pen.  Has anyone else developed an allergy in addition to Celiac? How common is this? 

Thanks in advance for your stories and support.

 

Stephanie

 

[trents]

Welcome to the forum, @Stephanie Wakeman!

I don't know how common it is but it is certainly possible. In fact, as you may already be aware that, if you live in the USA, the FDA lists it as one of the eight most common allergens and if it is present in a commercial food product it must be declared in the allergen section of the product's nutritional analysis label. So, just judging from that, I would assume you are not the only celiac who is also allergic to wheat. Statistically, though, since only about 1% of the general population has celiac disease (and many or most of them aren't being diagnosed), combined with the fact that allergic reactions at the level of anaphylaxis are somewhat unusual in the general population, would think you probably won't hear of it much.

[Scott Adams]

It’s possible—though not extremely common—to develop a wheat allergy in addition to celiac disease. While celiac is an autoimmune reaction to gluten, a wheat allergy is an IgE-mediated response to wheat proteins, which can cause allergic symptoms like hives, swelling, or even anaphylaxis. Your recent anaphylactic reaction strongly suggests a true wheat allergy has developed alongside your celiac disease. Research on this overlap is limited, but some people with celiac do develop other immune-related conditions, including allergies.

Repeated gluten exposures may have sensitized your immune system over time, leading to this new allergic response. Since wheat allergy involves different proteins than celiac, you could now be reacting to both. An allergist can confirm this with skin prick or IgE blood tests. Moving forward, you’ll need to avoid all wheat (not just gluten) and keep your Epi-Pen handy. Many in the celiac community report similar experiences, so you’re not alone. Glad you’re okay after that scary reaction—thanks for sharing your story, as it’s an important reminder of how complex these conditions can be.

[Stephanie Wakeman]

Thank you so much for your response! It's been a challenging journey with this condition! 

[Pablohoyasaxa]

I was diagnosed with gluten sensitivity and a wheat allergy as a child in the early 1960s, . which I inherited from my father's DNA. My mom tried the best she could with both of us, but in those times health and allergies were kind of brushed aside.  I grew out of it, or so we thought, but the rashes reared their ugly heads while I was in college. Keg parties (wheat & gluten in beer and youthful reckess eating led to an outbreak. To the point, I am a 65 year old and now living with full blown celiac with dermatitis herpetiformis blisters that are just beginning to receed after being gluten-free for over 2 years at least. The lesions are so unsightly that I need to stay covered. Ive been living in South Florida and would love to wear shorts but people see the sores and thing I am a leper. Ive lost a lot of weigh from  stomach cramps and frequent bowel movements. Will this ever end!

[Wheatwacked]

Hi @Stephanie Wakeman,

Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L.  This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses.  Vitamin D deficiency may be linked to an increased risk of developing allergies and experiencing more severe allergic reactions.  Vitamin D is one of many vitamin deficiencies caused by small intestine damage so unless you get enough sunlight or taking large doses of vitamin D, you will be deficient.

 

Quote

 

Surge of information on benefits of vitamin D

Dave McCarthy, MD, said medical research on the high prevalence of vitamin D deficiency motivated him to introduce the findings into his family practice, and his patients have had a substantial reduction in influenza and infections.

“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy, whose family practice is affiliated with The Memorial Hospital of Belleville, Ill.

“There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. Elevations in blood pressure now require many fewer medications,” he said.

McCarthy has been employing these methods since February 2007, and patient acceptance has been high. He said he checks each patient’s 25(OH)D level and supplements to reach a target of 80 ng/mL in adults and children. Of the first 1,500 patients McCarthy tested, 40% began with vitamin D levels less than 20 ng/mL and 70% less than 35 ng/mL. Only 1% initially had values within his target range.

According to McCarthy, his target range is based upon several factors:

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
• More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;
• When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D.
• McCarthy said the optimal level of 25(OH)D still remains to be determined with precision, as the peak effects have yet to be found.

 

 

Quote

 

Mayo Clinic: Vitamin D Is Not as Toxic as Was Once Thought

Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d.    

In Great Britain in the early 1950s, several cases of infants with facial abnormalities, supra valvular aortic stenosis, mental retardation, and hypercalcemia were reported... The Royal College of Physicians and the British Pediatric Association were charged with finding the cause for these unusual occurrences. After careful scrutiny of the litera ture and surveys of dietary intake, they concluded that the most likely causes were the unregulated overfortification of milk with vitamin D and/or excessive intakes of vitamin D from various foods fortified with vitamin D and natural foods containing vitamin D, including dried milk and cod liver oil.3,5 Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion, it based its conclusion on the literature that reported that pregnant rodents receiving intox icating doses of vitamin D delivered pups with altered facial features, supravalvular aortic ste nosis, and hypercalcemia.6 The British Pediatric Association documented hypercalcemia but only in a relatively few infants who had approximate intakes of 1500 to 1725 IU/d of vitamin D. As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D. This concern for vitamin D toxicity in children led to most of the world (including countries in Europe, the Middle East, Asia, Africa, and South America) banning vitamin D fortification of milk.

 

 

[Scott Adams]

On 6/28/2025 at 2:41 PM, Pablohoyasaxa said:

I was diagnosed with gluten sensitivity and a wheat allergy as a child in the early 1960s, . which I inherited from my father's DNA. My mom tried the best she could with both of us, but in those times health and allergies were kind of brushed aside.  I grew out of it, or so we thought, but the rashes reared their ugly heads while I was in college. Keg parties (wheat & gluten in beer and youthful reckess eating led to an outbreak. To the point, I am a 65 year old and now living with full blown celiac with dermatitis herpetiformis blisters that are just beginning to receed after being gluten-free for over 2 years at least. The lesions are so unsightly that I need to stay covered. Ive been living in South Florida and would love to wear shorts but people see the sores and thing I am a leper. Ive lost a lot of weigh from  stomach cramps and frequent bowel movements. Will this ever end!

Your journey with gluten sensitivity and celiac disease sounds incredibly challenging, especially after decades of managing symptoms that were misunderstood or overlooked. It’s frustrating how long it took for proper awareness and diagnosis to emerge, leaving you to deal with the physical and emotional toll of dermatitis herpetiformis and other severe reactions. Staying gluten-free for two years is a huge accomplishment, and it’s encouraging that your lesions are finally receding—progress, even if slow, is still progress. The social discomfort of visible symptoms is so hard, and it’s unfair to feel isolated because of misconceptions. Hopefully, with continued strict adherence to your diet, your gut will heal further, and the weight loss and cramping will improve. Hang in there!

[trents]

@Pablohoyasaxa, if your diet is truly gluten free you should not still be experiencing stomach cramps and diarrhea. So, maybe gluten is still getting in there somehow or you have developed other food intolerances which, by the way, is very common in the celiac population. Are you still consuming dairy and oats (even gluten free oats)?

[Pablohoyasaxa]

Thank you so much for the caring reply. It really helps to be getting feed back on this. Thank you Celiac.com!  The skin lesions are in the last stage. Some are larger and take more time but much better. I look at photographs from 2 years ago and I shudder.  The stomach issues prevail,  although incrementally improved, even after a stay at MayoClinic this past year. Thank you again

19 minutes ago, trents said:

@Pablohoyasaxa, if your diet is truly gluten free you should not still be experiencing stomach cramps and diarrhea. So, maybe gluten is still getting in there somehow or you have developed other food intolerances which, by the way, is very common in the celiac population. Are you still consuming dairy and oats (even gluten free oats)?

 

[Pablohoyasaxa]

Your  post is excellent. Thank you!! I have been trying to keep my diet "truly gluten free," but as you know, it's a  sneaky allergy, especially if you have a heightened sensitivity. So ironically, and sadly, no medical person told me to stay away from "gluten free oats.".  To my own fault, my lack of awareness led to years of eating  massive bowls of gluten-free oatmeal, sometimes twice a day. Awful right?  I am sure this added to the recovery time. I think I have been super vigilant for the last 12 months, but I wonder. I  haven't gone to a restaurant in a long time. My wife is frustrated with my social situation but truthfully I need to get this condition over with. Thanks again.

[trents]

About 9% of celiacs react to the protein in oats (avenin) like they do gluten. The dairy protein casein is also known to damage small bowel villi like gluten does in some celiacs. In addition to that, many manufactured gluten-free food products contain difficult to digest polysaccharides like xanthan gum that are famous for causing digestive distress.

Edited June 30, 2025 by trents

[Pablohoyasaxa]

On 6/29/2025 at 2:53 AM, Wheatwacked said:

Hi @Stephanie Wakeman,

Get your vitamind D blood level checked and supplement to raise to around 80 ng/dl or 200 nmol/L.  This is the natural upper limit and provides the best immune system. Vitamin D plays a role in regulating the immune system, and low levels may impair the immune system's ability to control allergic responses.  Vitamin D deficiency may be linked to an increased risk of developing allergies and experiencing more severe allergic reactions.  Vitamin D is one of many vitamin deficiencies caused by small intestine damage so unless you get enough sunlight or taking large doses of vitamin D, you will be deficient.

 

 

 

Thanks for the post on Vitamin D.  I have been living in south Florida and have been taking moderately higher doses of vit D. I am considering the Mushroom supplements and exporing Real Mushrooms, the brand. Not sure. If you have any thought, please share. I am curious about all things homeopathic. 

[Ronnie d]

Pablohoyasaxa,

were you ever taking dapsone?

it would have knocked your blisters out within a week.

 

[Scott Adams]

Dapsone, commonly prescribed for dermatitis herpetiformis (the itchy gluten-related skin condition), comes with several potential side effects that patients should monitor. The most frequent issues include blood-related problems like hemolytic anemia (especially in those with G6PD deficiency, which is more common in certain ethnic groups) and methemoglobinemia that can cause fatigue, shortness of breath, or bluish skin. Many patients also experience headaches, nausea, dizziness, or skin sensitivity to sunlight. While these effects are often manageable, there are rare but serious risks including dapsone hypersensitivity syndrome (with fever, rash and organ inflammation), liver problems, or severe anemia that require immediate medical attention. That's why doctors typically monitor blood counts and liver enzymes regularly during treatment. A crucial tip: proton pump inhibitors like omeprazole can interfere with dapsone's effectiveness, so discuss all medications with your doctor. If you develop fever, unexplained fatigue, yellowing skin/eyes, or a spreading rash while on dapsone, stop taking it and contact your healthcare provider right away. For celiac patients specifically, remember that strict gluten-free eating may eventually reduce or eliminate the need for dapsone to control dermatitis herpetiformis symptoms over time.

[Ronnie d]

19 hours ago, Scott Adams said:

Dapsone, commonly prescribed for dermatitis herpetiformis (the itchy gluten-related skin condition), comes with several potential side effects that patients should monitor. The most frequent issues include blood-related problems like hemolytic anemia (especially in those with G6PD deficiency, which is more common in certain ethnic groups) and methemoglobinemia that can cause fatigue, shortness of breath, or bluish skin. Many patients also experience headaches, nausea, dizziness, or skin sensitivity to sunlight. While these effects are often manageable, there are rare but serious risks including dapsone hypersensitivity syndrome (with fever, rash and organ inflammation), liver problems, or severe anemia that require immediate medical attention. That's why doctors typically monitor blood counts and liver enzymes regularly during treatment. A crucial tip: proton pump inhibitors like omeprazole can interfere with dapsone's effectiveness, so discuss all medications with your doctor. If you develop fever, unexplained fatigue, yellowing skin/eyes, or a spreading rash while on dapsone, stop taking it and contact your healthcare provider right away. For celiac patients specifically, remember that strict gluten-free eating may eventually reduce or eliminate the need for dapsone to control dermatitis herpetiformis symptoms over time.

yes, the above is true.

however; if the doctor does the tests and finds your are a candidate then dapsone is the drug that will stop the blisters immediately.

dapsone started as a drug for malaria and leprosy....I do not know how it became known for dermatitis herpetiformis. I can tell you that my doctor told me she had several patients that have taken it over 20 years.

our dosage was one a day until clear,then we went to every other day for a while, working down to zero a day. I still have an active prescription for dapsone but have not had to take one in several years.

in closing, if anyone reads this and has truly been diagnosed for dermatitis herpetiform is, then ask your doctor for dapsone.....

for those of you reading this that have never had the blisters and infections from the scratching and oozing fluid...than you can't identify.

you can have celiac without dermatitis herpetiform is....but all people with dermatitis herpetaformis have celiac...  a double whammy, so to say.

[trents]

@Ronnie d, there is a small percentage of celiacs who have dermatitis herpetiformis but have no small bowel mucosal involvement. Also, we have had some reports on this forum from dermatitis herpetiformis suffers who said Dapsone did not work for them. But for the vast majority it does.

[knitty kitty]

I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.  

I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to become more active and make more blisters.  I avoid kelp (nori, seaweed) and crustaceans,  eggs, dairy products, and iodized table salt.  

Niacinamide and Nicotinic acid are water soluble and harmless.  I'd much rather take Niacin than Dapsone with scary side effects.  

[Pablohoyasaxa]

Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 

[ElisaL]

IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 

[Pablohoyasaxa]

21 minutes ago, ElisaL said:

IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 

I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful

[Stephanie Wakeman]

Wow, thank you for share Elisal!  We do need to stay focused on the fact we are so much healthier without wheat and gluten as hard as it is! I've learned to love rice and almond flour based sweets and enjoy the corn and plantain chips as my go to salty snacks!