Suffering Without a Diagnosis

[Jacqueen]

At age 64, I recall having several symptoms of celiac as early as childhood. My parents didn't know about the disease, so I wasn't tested. But I have suffered the discomforts of dermatitis herpetiformis, as well as hair loss throughout adulthood. I am currently gluten-free only because I "accidentally" discovered the food sensitivity/allergy on my own. (The itchy lesions responded only when I applied Benadryl gel.) Over the years, doctors have refused to order Celiac testing for me. They have advised me to stay on the diet, since it relieves the urticaria and abdominal pain. But in recent years, I've had 2 stents installed in my digestive arteries. The most recent one, last year, was inserted into my Celiac artery. As a result, I have been prescribed Plavix for the rest of my life. In the meantime, the abdominal pain after eating, chronic nasal congestion, headaches, hair loss, complex canker sores, chronic constipation, weight loss, GI issues, fatigue, and other conditions continue. I must repeatedly manage them one after another. Although I purchase few packaged products, I always check labels for gluten content. But here in lies the problem: I am not strict about preventing cross contamination. So, I experience an occasional itchy lesion, mouth sore, stomach cramp, or hair loss. The question is, should I be following strict Celiac guidelines or not? If I were sure, I could practice the utmost self-care. Or should I go on assuming I have Celiac disease?

For now, the best I can manage is feeling constantly unwell. Does anyone else relate to this?

[plumbago]

Hopefully others will respond, Jacqueen - and welcome to the forum. In my own case, it was a fairly straightforward diagnosis of Celiac, roughly 10 years ago, and ever since, I eat the vast majority of my meals/snacks at home and am generally extremely careful about "outside food," most especially since the pandemic, as I don't eat inside restaurants hardly at all anymore. That may change.

What I and I'm sure others can relate to is what appears to be in your case a not very thorough work up and attention to detail, medically. Have you had an EGD (upper endoscopy), with biopsies? If so, what did it show? Have you ever had a Celiac panel of blood tests (especially back when you were eating gluten regularly)? You can get one of your itchy lesions biopsied for a confirmed case of DH, btw.

I would keep exploring and persisting. Many people with celiac disease wait years for an official diagnosis and treatment plan.

In terms of your question, if you have a confirmed case of celiac disease, without a doubt you need to always be strictly following a gluten-free diet. But if you do not have a confirmed case currently and you are currently not eating gluten, and you want to get a blood test, it may not do you any good since you need to be consuming gluten for at least 2-3 weeks, I believe, to get an accurate reading. The same is true for an EGD, however if the damage to the small intestines is extensive and deep, they should be able to pick that up. It just depends.

I work in healthcare, and not once have I encountered a patient with a diagnosis of Celiac disease, mostly because it is not tested routinely and - like in my case - it may take a doctor to have an "aha!" moment to think of even ordering the test. Thank goodness my personal doctor did.

I work with a lot of patients on Medicare and Medicaid, and as I wrote in a different topic 4 years ago, "I think the insurance coverage is dictating doctors' thinking - let me soften that: I fear that it is." Ie, not all insurance will pay for Celiac tests, or if it's an unusual test, it gets more complicated. Ordering your own Celiac panel can run you over $250.

I'm at risk of babbling on without really helping you. Hopefully my response "pings" some other users and moderators to chime in.

Plumbago

[RMJ]

Have you actually been diagnosed with dermatitis herpetiformis?  If so, you definitely need to be on a strict gluten free diet.  

[LCAnacortes]

For your lesions - check your hair products for wheat, wheat germ and other products like that.  I found out the conditioner I was using had wheat in it and I got lesions on my head. I stopped using that product and they went away.  I have not been diagnosed but have first degree relatives that were diagnosed.  For me milk/lactose caused diarrhea and gluten made it explosive and uncontrolled. So I have been gluten free since May.  My symptoms improved dramatically - including a stuffy nose. Hair loss can be low vitamin D caused by the inability to absorb nutrients.  I had that too but also had a bout of pneumonia. Pneumonia and Covid can cause hair loss because your body won't send oxygen to your hair if it is in distress. I am your same age.  Personally, I would try to avoid cross contamination. It wasn't worth it for me. Good luck with your journey! 

[Jacqueen]

On 10/16/2022 at 3:36 PM, plumbago said:

Hopefully others will respond, Jacqueen - and welcome to the forum. In my own case, it was a fairly straightforward diagnosis of Celiac, roughly 10 years ago, and ever since, I eat the vast majority of my meals/snacks at home and am generally extremely careful about "outside food," most especially since the pandemic, as I don't eat inside restaurants hardly at all anymore. That may change.

What I and I'm sure others can relate to is what appears to be in your case a not very thorough work up and attention to detail, medically. Have you had an EGD (upper endoscopy), with biopsies? If so, what did it show? Have you ever had a Celiac panel of blood tests (especially back when you were eating gluten regularly)? You can get one of your itchy lesions biopsied for a confirmed case of DH, btw.

I would keep exploring and persisting. Many people with celiac disease wait years for an official diagnosis and treatment plan.

In terms of your question, if you have a confirmed case of celiac disease, without a doubt you need to always be strictly following a gluten-free diet. But if you do not have a confirmed case currently and you are currently not eating gluten, and you want to get a blood test, it may not do you any good since you need to be consuming gluten for at least 2-3 weeks, I believe, to get an accurate reading. The same is true for an EGD, however if the damage to the small intestines is extensive and deep, they should be able to pick that up. It just depends.

I work in healthcare, and not once have I encountered a patient with a diagnosis of Celiac disease, mostly because it is not tested routinely and - like in my case - it may take a doctor to have an "aha!" moment to think of even ordering the test. Thank goodness my personal doctor did.

I work with a lot of patients on Medicare and Medicaid, and as I wrote in a different topic 4 years ago, "I think the insurance coverage is dictating doctors' thinking - let me soften that: I fear that it is." Ie, not all insurance will pay for Celiac tests, or if it's an unusual test, it gets more complicated. Ordering your own Celiac panel can run you over $250.

I'm at risk of babbling on without really helping you. Hopefully my response "pings" some other users and moderators to chime in.

Plumbago

Thanks! Your comments are helpful. I have been trying to figure this out for over 10 years, drastically changing my meal habits. The first doctor to exam the itchy bumps, which I now determine to be a type of hives, prescribed a body cream for treating scabies. Yes, he said I had scabies. But I guess that was all he had in his bag of tricks. Obviously, the cream didn't treat the problem very well. They reappeared. Years later, another doctor said, "You have some sort of food allergy." A test revealed an allergy to dust mites. Duh! In 2002, I lost all the hair on one side of my head when it started slowly disappearing from the scalp. (Stress, no doubt.) It grew back but has since broken and thinned at the crown every 2 years or so.

Back to the scabies/hives/ and full-body itching: it has gone through changes. By 2015, the scalp itching was so severe that it hurt and gave me chills. I probably felt hives on top of my head but couldn't see them. The doctor prescribed coconut oil for dry scalp and antihistamines. So, I've taken allergy meds intermittently ever since. Once I see hives appear and disappear on my body, not connecting them to something I'd eaten or absorbed. And by the time I got to the doctor, no hives and a dried-up blister were the only evidence. Thankfully, I haven't had the formicating scalp itching in about a year. Since eliminating wheat products for 10 years, I only occasionally experience minor itching, sometimes all over. However, I do intend to find a specialist who will take me seriously and perform all the necessary procedures. 

[Jacqueen]

On 10/16/2022 at 4:28 PM, RMJ said:

Have you actually been diagnosed with dermatitis herpetiformis?  If so, you definitely need to be on a strict gluten free diet.  

No, doctors have called it everything from scabies to dry scalp, but not DH. Up to now, I think they have been afraid to approach the subject. Thanks for your suggestion!

On 10/16/2022 at 6:45 PM, LCAnacortes said:

For your lesions - check your hair products for wheat, wheat germ and other products like that.  I found out the conditioner I was using had wheat in it and I got lesions on my head. I stopped using that product and they went away.  I have not been diagnosed but have first degree relatives that were diagnosed.  For me milk/lactose caused diarrhea and gluten made it explosive and uncontrolled. So I have been gluten free since May.  My symptoms improved dramatically - including a stuffy nose. Hair loss can be low vitamin D caused by the inability to absorb nutrients.  I had that too but also had a bout of pneumonia. Pneumonia and Covid can cause hair loss because your body won't send oxygen to your hair if it is in distress. I am your same age.  Personally, I would try to avoid cross contamination. It wasn't worth it for me. Good luck with your journey! 

Yes, I think I will have to seriously avoid cross contamination. Thanks for your support!