Do negative test results need pursuing?

[ccbre]

In January of this year, I started developing hives.  My google research told me that giving up gluten could help, so I did, and it did help.  I followed up with my allergist and was diagnosed with dermatagraphism (skin-writing) and chronic autoimmune urticaria.  No food allergies were found. So I just kept with the gluten-free diet.  In May, followed up with my family doctor because I was concerned about autoimmune diseases, my aunt had MS and my uncle has RA. I also have a small amount of arthritis in my back (and I'm only 38).  So she did my blood work and tested for celiac as well.  Everything was normal, except my SED rate was just above normal - so there is still inflammation in my body. I'm still thinking gluten is a problem. After 4 months of gluten-free, these are my results:

immunglobin Iga   116mg/dl (68-378 normal)

Gliadin Igg   5.59 (<15 normal)

Transglutamase Iga   2.42 (<15 normal)

I feel like after 4 months of gluten free that the gliadin should be lower.  But I really have no idea.  Since the blood tests, I've experienced stomach issues and changes in bowel movements, but not enough to really link it to any gluten.  I made an appointment with a GI, but I'm considering canceling it. I feel kind of crazy.  Once going gluten free, much of my hip pain went away, my muscles seemed not as tight, and the numerous headaches I would get disappeared.  However, I did also go dairy-free, grain-free, and stayed away from caffeine most days of the week.

I would appreciate any insight, thoughts, or advice on this matter. Thanks.

[Fundog]

You already have an autoimmune condition which does put you at a higher likelihood of developing other conditions in the future, not necessarily celiac.  At any rate, I've been reading reports-- both research articles and anecdotal experiences from AI patients-- linking a gluten free diet with relief of symptoms, particularly a lessening of joint and muscle pain in those with RA, FMS, Lupus, and Chronic Fatigue.  So my point is, even if you don't have celiac disease, if being on a gluten free diet helps you, then stay on it.  As for the digestive issues, it may be worth seeing a GI for.  Lots of things can cause tummy troubles, not just celiac disease.

[ravenwoodglass]

Welcome to the board. Your celiac testing was pretty much useless since you had been gluten free for 4 months. If you want testing for celliac you need to go back on gluten for a couple months first.

[cyclinglady]

Your celiac results are in the normal range.  Based on my research do not expect them to hit a zero!  That is not how they work.  Do you have celiac disease?  You will never know unless you do a gluten challenge and get retested as Raven has suggested.  

Open Original Shared Link

I am not a doctor, but you can research Mast Cell Activation Disorder.  It could be contributing to your health issues (but so can celiac disease).  

[caretothepeople]

Yes it sounds like you may need further testing to rule out other conditions. Maybe seeking a second opinion from a endocrinologist and/ or rheumatologist would be a place to start.

[ccbre]

Thanks for the comments. With Dr. Google, I have seen mast cell disorder pop up.  It seems like I need to eliminate some basics before heading in that direction.

So, another question...is it possible that symptoms of celiac need time to "build up" over time? For instance,  I started reintroducing gluten and coffee last week to prepare for my GI appt.  However, nothing really seemed to happen except a little knee crankyness (which I can easily attribute to hiking).  Yet, yesterday I had a huge bagel at work, had itchy forearms, and then had two huge hives appear later.  Today, I had another bagel and in a few hours I had a few red fingers that were itchy and numb feeling in the tips.  

I know histamine intolerance is a possibility, but wouldn't that show up as an extremely large hive with my allergy skin test?

Also, I had to go into work today and yesterday. I'm wondering if that environment could contribute to the issue (I'm a high school teacher).

 

[cyclinglady]

Back to Dr. Google for you!  

A histamine intolerance is not a true IGE mediated allergic reaction.  Read up!  It does often (like many intolerances) occur with celiac disease because the small intestine is damaged.  It can resolve once the gut has healed.  

celiac disease antibodies can take time to build up (in your blood stream for the test or skin).   That's why the gluten challenge is 8 to 12 weeks.  In the case of DH, you can eat something and days or weeks later, the DH rash will appear and you'll go crazy trying to figure out when you got "glutened" (but don't take any serious gluten advice from me because I don't have it).  

You can have several things wrong with you and a wheat allergy and celiac disease can occur at the same time.  Add on something like Mast Cell Activation, Autoimmune Hives, Histamine Intolerance.......the list can be endless (at least that is how some of us feel.) 

Of course your high school could be making you ill.  Think of all that stress!  Who knows what lurks in your building, but let's face it, you ate some gluten. 

Best of luck to you on your challenge!