Dermatitis Herpetiformis and celiac symptom relief pre-diagnosis

[Nbella2155]

I have always had stomach issues (lactose intolerance, difficulty gaining/keeping weight) but this past March, everything got so much worse. I got very sick suddenly and chalked it up to food poisoning (even though no one else from the weekend event got sick). Everything started to stabilize after that terrible weekend and i was still left with residual constant nausea, fatigue, migraines, stomach pain and bloating, gas, and alternating consistencies in stool (that is also yellow and mucousy/oily?). I was finally able to see a GI doc in May and they gave me an ultrasound, said I seemed to have Post-Infectious IBS and to come back in 4 months if I am still having severe symptoms.

I researched PI-IBS and found to do a low FODMAP diet to help pinpoint trigger foods. The only trigger I found  was gluten. I thought that I had developed a new intolerance due to the trauma of food poisoning and started eating a gluten-free diet. I felt significantly better within a week, like I had the flu for so long and now I was experiencing a life without being sick or in pain. I traveled across the country to go back to school with no issues. 

I have 3 roommates (all with regular diets) and we share everything in the kitchen except for my special gluten-free pasta and breads. One day, I suddenly broke out in what i thought was hives but after comparing with photos online and remembering prior experiences, I realized it was not hives. I had extremely itchy (to the point of a burning sensation) blisters and little cuts/holes mostly on my butt and down my thighs, unaffected by typical allergy meds (antihistamines). This is when I discovered Dermatitis Herpetiformis. I started to pay even more attention to my diet and daily products and conduct a little experiment on myself. I drank a normal beer with mild cramping the next morning and 2 days later, this rash returned and, in addition to the previous spot, the back of my neck, my face and neck, my shoulders/upper arms, and my ankles were affected by a few bumps and itchiness. The following week, I got this same widespread rash without my "experiment" and cannot figure out what I was exposed to. After it subsided, I ate 2 slices of normal pizza and 3 days later, the rash is back, worse than ever, and accompanied by my stomach/bathroom issues from earlier.

This rash has not gotten better within the 24 hours after developing so I called my GI doc to schedule an appointment and order the blood test but I just got an automated message and put on hold for 2 hours. I called my PCP back home and he is out of the office for another day so he cannot order it yet. I am going to the on-campus medical center to as soon as I can to get some type of steriod or cortisone or something. Has anyone had experience with anything that can lessen the itching and burning? To hold me over until I can be seen. 

I cut gluten out of my diet completely in early August after doing a low FODMAP diet. In the past 5 weeks, I have been dealing with this rash every few days and also lost an extreme amount of weight. Could this be caused by cross contamination from my roommates' food?

For testing, Ive read that you have to maintain a normal diet with gluten in order for it to be effective and accurate but I started a gluten-free diet around 2 months ago. Would the possible cross contact in the previous paragraph be enough exposure to get accurate results or will I have to eat gluten for a period of time before the testing? If I do have to start eating gluten again, how do I reintroduce and continue eating it in way to cause the least amount of pain and discomfort? Are there any ways to relieve the symptoms a little bit so that I am not bed ridden by fatigue, nausea, and migraines, toilet ridden with diarrhea, or covered in a rash? 

I realize that is a lot to post and read but I had some questions and kind of needed a slight rant as I assume everyone in my life is tired of hearing about it so Ive just stopped talking about my health in general 

 

[trents]

7 hours ago, Nbella2155 said:

For testing, Ive read that you have to maintain a normal diet with gluten in order for it to be effective and accurate but I started a gluten-free diet around 2 months ago. Would the possible cross contact in the previous paragraph be enough exposure to get accurate results or will I have to eat gluten for a period of time before the testing? If I do have to start eating gluten again, how do I reintroduce and continue eating it in way to cause the least amount of pain and discomfort? Are there any ways to relieve the symptoms a little bit so that I am not bed ridden by fatigue, nausea, and migraines, toilet ridden with diarrhea, or covered in a rash?

Welcome to the forum, Nbella2155!

Unfortunately, you will most likely have sabotaged serum antibody testing for celiac disease by beginning the gluten free diet two months ago. Two months (actually, 6-8 weeks) is the amount of time you should be eating regular amounts of gluten (defined as two slices of wheat bread daily or the gluten equivalent) leading up to the serum antibody test, according to the Mayo Clinic guidelines. By now, the serum antibodies produced by the inflammation of the small bowel lining from regular gluten ingestion if you are a celiac will have largely dissipated.

Another, shorter term testing option, would be to schedule an upper GI scoping with biopsy of the small bowel lining. According to the Mayo Clinic guidelines, that would require only two weeks of regular gluten consumption. However, physicians normally start with the serum antibody testing and then follow-up with the endoscopy/biopsy for confirmation as the latter is a much more expensive process and they have these diagnostic protocols you know.

There is an even shorter term option for you, perhaps, and that is to get the skin outbreak biopsied. DH is definitive for celiac disease. There are no other known causes for DH. Since you seem to have figured out that you break out withing 2-3 days of gluten consumption, you could schedule a biopsy for DH with a dermatologist and then wait for a few days before the appointment to start consuming gluten. Make sure you find a derm doc who is familiar with DH as there is a shocking amount of ignorance in the medical community with regard to gluten disorders. And the biopsy has to be done during an active outbreak of the DH. The samples themselves should also not be taken directly from the pustules but from the skin next to them. Make sure you find someone who knows what they are doing. Ask questions. Be assertive. Research and go to appointments armed with knowledge.

Having said all that, it seems obvious to me that you probably have celiac disease and I wonder if you even need to have a formal diagnosis. You already know that eating gluten messes dramatically with your health and you already know that when you stop eating gluten you recover. Having a formal diagnosis won't change the antidote, namely, lifelong abstinence from gluten. Then there is the challenge of learning how to be consistent with avoiding gluten. And that is more of a challenge than you probably realize at this point. And there are significant implications for eating gluten free with regard to your social life.

Edited October 7, 2022 by trents

[shadycharacter]

8 hours ago, Nbella2155 said:

Are there any ways to relieve the symptoms a little bit so that I am not bed ridden by fatigue, nausea, and migraines, toilet ridden with diarrhea, or covered in a rash? 

DH sometimes gets worse from iodine, so it could help some to cut out excessive iodine from food and/or supplements. It's an essential mineral though and can't be avoided completely. The daily requirement is something like 150 micrograms. Perhaps avoid iodized salt for a while and see if it makes a difference.