Recurring flu like symptoms after being precribed immune system stimulating drug

[sillyac58]

I was diagnosed about 10 yrs ago with Celiac by presenting with dermatitis herpetiformis rash. I had no stomach or intestinal discomfort, but of course showed intestinal damage. The dermatitis herpetiformis eventually went away and I've been religiously gluten free ever since.

About 3 years ago I was given a topical drug by a dermatologist for pre cancerous spot on my lip. The drug is called Imiquimod/Aldara, and works by stimulating your immune system. ? The package insert and many releable online sources warn to use caution using this drug if one has an auto immune disease, I hace since found out. One of the side effects is flu like symtoms, which I had at the 10 day mark as warned. But these symptoms have been recurring regularly ever since. Low grade nausea (no vomiting), extreme fatique (sleeping in daytime) and often a migraine headache on day one or two. The bouts last around 5 days or more, usually the nausea being the persistent symptom. My dermatologist, and another I went to for second opinion say this isn't a problem.

I have been ill about a third of my life ever since. I have had extensive bloodwork, been to numerous specialists, but cannot figure out what is making me sick. I have become neurotic about gluten at home, using separate cutting boards, pans, sponges, dish towels, etc. I rarely eat out, and usually only because I am traveling. I have begun taking my own food to peoples homes for dinners etc. The only thing I haven't done, until now, is to eliminated oats, which I eat fairly regularly, and are known to sometimes be a trigger.

And I have to say, in my defense, that it took me a very long time to suspect gluten because my only original symtom was rash/dermatitis herpetiformis. So I didn't associate the nausea/headache/fatique with gluten for a long time. Nor did any one of the many doctors I saw suspect it. I finally had a couple of dermatitis herpetiformis spots (and severe migraine) when traveling and probably eating cross contaminated food. I've never been on one of these sights but I am desperate. I'm praying it's as simple as eliminating oats. But I am angry that I was given this drug that I truly believe set this off to begin with. Anyone?

[trents]

Welcome to the forum, @sillyac58!

Are you still using this topical medication for this precancerous spot on your lip? If not, are you saying you used it for a limited time and believe it triggered additional ongoing immune system reactions with unpleasant symptoms? I'm not clear on this.

Are the oats you use certified gluten free? You may know this already, but even if they are certified gluten free, the oat protein avenin is similar enough to gluten to cause reactions in some celiacs. The development of other food intolerances is also common in the celiac community. Common offenders in addition to oats are dairy, eggs corn and soy. Dairy and oats are the most common, however. You might do well to keep a food diary and check for patterns.

[sillyac58]

I used the cream for 4 days as prescribed 3 years ago. While I cannot be sure it triggered these problems, the timing is very suspicious. Yes, the oats are gluten free, and while I knew some celiacs have a problem with oats, I only just thought to eliminate them.  I just read about corn on this website, which I do eat plenty of. I do eat dairy, and would be so terrible sad to give it up, but..... Thank you for the diary suggestions. I'll start one today. Thanks for responding!

[Wheatwacked]

With all the bloodwork, have they checked your vitamin D?  What is it?  Celiac Disease causes malabsorption, so vitamin deficiencies are common.  Doctors rarely mention this.

B1 Gastrointestinal beriberi, a severe thiamine deficiency, is characterized by symptoms including anorexia (loss of appetite), abdominal discomfort and pain, nausea, and vomiting. Other potential symptoms like abdominal fullness, indigestion, and constipation can also occur. These gastrointestinal issues may resist standard treatments, signaling a need to consider thiamine deficiency.  It is commonly believed that thiamine deficiency is not an issue in the western cultures, so rarely address by doctors.

Doses of thiamine above 100 mg several times a day will quickly show improvement.  Borderline deficiency will come and go depending on what your eat.  Carbs use it up faster, so for example if you eat a lot of carbs today, tomorrow you may have symptoms.  Thiamine (Benfothiamine is a synthetic fat soluable thiamine) is water soluable, we only store maybe a weeks worth, and there is no upper limit on how much you consume.  Excess is stored or peed away.  

5 hours ago, sillyac58 said:

My dermatologist, and another I went to for second opinion say this isn't a problem.

For them it isn't a oroblem.  LOL.  They just say some people are like that and see the next patient.

 

[sillyac58]

Thanks Wheatwacked. My D is normal. I take B12, B6, and a bone health supplement (I'm 67) that has K1, Calcium, Magnesium, and a bunch of other things. But no thiamine. But I will have my doc add it to my next blood draw. Thanks for the info WW!

 

[Wheatwacked]

Normal vitamin D range us from 20 ng/ml to 100 ng/ml.  200 nmol/L is the same as 80ng/ml. Minimum vitamin D is based soley on preventing Rickets and osteomyelitis.  Othe research is considered irrelevant insufficnet proof.   My 25(OH)D level is just over 80 ng/dl.  It took 8 years of 10,000 IU a day to get here because Celiac Disease causes low D.  In 1952 the UK banned all vitamin D supplementation due to a error.  Most of the world followed suit.  In the western world vitamin D deficiency ranges from 40% of the US to 60% in the UK.

If you had an office with workspace for 30 to 100 workers, but you were restricted to less than 50 workers, how well would the office run.? A factory worker has 40 ng/ml,  A lifeguard has around 80.  Who's immune system works better?

Simultaneously, 1,25(OH)2D3 up- and downregulates more than 1000 genes responsible for cellular proliferation, differentiation, a variety of cellular metabolic activities, antiangiogenesis and apoptosis   https://pmc.ncbi.nlm.nih.gov/articles/PMC9919777/

 

Quote

 

Surge of information on benefits of vitamin D

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.

 

 

Quote

 

The One-Hundred-Year Anniversary of the Discovery of the Sunshine Vitamin D3: Historical, Personal Experience and Evidence-Based Perspectives

The Royal College of physicians initiated an investigation and concluded that this outbreak in children was due to ingestion of excessive amounts of vitamin D in milk. This was based on a published observation that pregnant rats that received high doses of vitamin D delivered pups with some of the same clinical presentations including altered facial appearance, supravalvular aortic stenosis and hypercalcemia. Since it was difficult to monitor the content of vitamin D in milk, as a precautionary measure and based on the recommendation from the Royal College of Physicians, legislation quickly followed banning the fortification of any food or personal use product with vitamin D [19,20]. This ban quickly spread across Europe, Asia, India, and South America. Most of these countries still ban the fortification of foods with vitamin D with a few exceptions. 

 

 

[sillyac58]

Thank you WW. I will look into all this an appreciate the info!!

[Scott Adams]

On 8/30/2025 at 9:14 AM, sillyac58 said:

I was diagnosed about 10 yrs ago with Celiac by presenting with dermatitis herpetiformis rash. I had no stomach or intestinal discomfort, but of course showed intestinal damage. The dermatitis herpetiformis eventually went away and I've been religiously gluten free ever since.

About 3 years ago I was given a topical drug by a dermatologist for pre cancerous spot on my lip. The drug is called Imiquimod/Aldara, and works by stimulating your immune system. ? The package insert and many releable online sources warn to use caution using this drug if one has an auto immune disease, I hace since found out. One of the side effects is flu like symtoms, which I had at the 10 day mark as warned. But these symptoms have been recurring regularly ever since. Low grade nausea (no vomiting), extreme fatique (sleeping in daytime) and often a migraine headache on day one or two. The bouts last around 5 days or more, usually the nausea being the persistent symptom. My dermatologist, and another I went to for second opinion say this isn't a problem.

I have been ill about a third of my life ever since. I have had extensive bloodwork, been to numerous specialists, but cannot figure out what is making me sick. I have become neurotic about gluten at home, using separate cutting boards, pans, sponges, dish towels, etc. I rarely eat out, and usually only because I am traveling. I have begun taking my own food to peoples homes for dinners etc. The only thing I haven't done, until now, is to eliminated oats, which I eat fairly regularly, and are known to sometimes be a trigger.

And I have to say, in my defense, that it took me a very long time to suspect gluten because my only original symtom was rash/dermatitis herpetiformis. So I didn't associate the nausea/headache/fatique with gluten for a long time. Nor did any one of the many doctors I saw suspect it. I finally had a couple of dermatitis herpetiformis spots (and severe migraine) when traveling and probably eating cross contaminated food. I've never been on one of these sights but I am desperate. I'm praying it's as simple as eliminating oats. But I am angry that I was given this drug that I truly believe set this off to begin with. Anyone?

While the initial flu-like symptoms are a known side effect of Imiquimod, it is plausible that triggering your immune system in that way could have caused a long-term shift in your autoimmune response, essentially lowering your threshold for a reaction. Your theory is very valid. Given your history, the most logical first step is to eliminate oats entirely, as even certified gluten-free oats can be a trigger for some celiacs due to a protein called avenin. Treat this as strictly as you would wheat, barley, or rye for at least a few months to see if the recurring episodes subside. It's a tangible variable you can control, and many in the community have found significant relief from persistent symptoms after doing so. I'm sorry the medical professionals you've seen have been dismissive; trusting your own body's signals is so important. I truly hope that cutting out oats brings you the answers and relief you deserve.

[sillyac58]

Thanks so much Scott. I would be incredibly grateful to the gluten gods if eliminating oats was the magic cure. In the meantime, it's nice to have moral support!