Negative Blood Test - My Fault?

[Deimos]

I was wondering if someone could give me their opinion as to whether or not I likely caused a false negative for my celiac panel blood test last week. I see people suggesting that you have to eat gluten daily for several weeks/months to get an accurate test result. Having phased out and reintroduced gluten several times over the last few months to see the same cessation and return of symptoms, I am wondering if this would be enough to cause a false negative? If not, can I still have celiac if my bloodwork is negative? I haven't been able to find a doctor that takes me seriously when I discuss the problems I'm experiencing from wheat, let alone a doctor that lets me talk without cutting me off before the 4 seconds mark, so I was really hoping that someone here could give me an informed opinion regarding the blood test and possibly my symptoms.

My Symptoms on Gluten:

Within an hour my skin becomes suddenly very itchy, my energy levels plummet, I become very irritable, angry, and depressed.

Within 2 hours my stomach will have swollen 2-3 inches past my chest, when it is normally quite slim. Abdomen is tender when pressed on.

Later that night or the next day: I will have small blisters form on my body(usually hands, forearms, and thighs) which are symmetrical in the areas on the body that they erupt, filled with a clear fluid, are painfully itchy, and eventually open up in batches into tiny little ulcers. I will be constipated, have horribly stinky gas(worse than egg farts)/farts that smell exactly like what I ate("lamb and rosemary farts"), experience low exercise tolerance, and by this time be very unmotivated, and have no emotional capacity.

Most recently, I experienced alternating insomnia(awake for 72 hour periods with only two to three hours of sleep when I could sleep) and fatigue(sleeping 12-16 hours a day), night blindness, and had white spots on my nails from a zinc deficiency despite taking a supplement with zinc.

I have previously been diagnosed with IBS and was told that my symptoms were all stress related but the only stress I have now is being told by doctors that this is in my head.

When I cut out gluten, my abdominal bloating and tenderness cease, the itchiness goes away in 2-3 days, my energy levels and exercise endurance are through the roof, and I become a very clear-headed, optimistic person. The circles under my eyes start to fade, no new blisters erupt anywhere on my body, and I started to apparently gain muscle mass without exercise for several days after two weeks where I was nearly bedridden with fatigue. The night blindness and insomnia went away in a week and the episodes of fatigue have greatly reduced.

I appreciate any help you can and are willing to give. I'm just so frustrated that the blood test came back negative and I'm wondering if, when I get health insurance again, would it be worth trying to go through the diagnostic progress based on my symptoms if I can find a doctor that specializes in celiac and who is willing to listen to me? Or does someone more informed about celiac think that I'm barking up the wrong tree here?

[WheatChef]

I'm sorry you've been having such terrible luck with bad doctors. What sort of blood tests did you get and what were the actual results?

The relationship of any symptoms at all only appearing following consumption of a specific dietary trigger is a pretty strong correlation that should make any sensible doctor take note. The symmetrical rashes you mention could very well be dermatitis herpetiformis. If you get any sort of break out following the majority of times you consume gluten then that right there should be enough to say that your body does not want you to have any gluten. Have you tried a good dermatologist yet about this? If it turns out that the rashes are dermatitis herpetiformis, as diagnosed by a biopsy of the affected skin, then that is also a 100% celiac diagnosis, it's actually celiacs of the skin. If the rashes are simply gluten-related eczema then you'd still need the same treatment of a gluten-free lifestyle anyways.

[Deimos]

I'm sorry you've been having such terrible luck with bad doctors. What sort of blood tests did you get and what were the actual results?

The relationship of any symptoms at all only appearing following consumption of a specific dietary trigger is a pretty strong correlation that should make any sensible doctor take note. The symmetrical rashes you mention could very well be dermatitis herpetiformis. If you get any sort of break out following the majority of times you consume gluten then that right there should be enough to say that your body does not want you to have any gluten. Have you tried a good dermatologist yet about this? If it turns out that the rashes are dermatitis herpetiformis, as diagnosed by a biopsy of the affected skin, then that is also a 100% celiac diagnosis, it's actually celiacs of the skin. If the rashes are simply gluten-related eczema then you'd still need the same treatment of a gluten-free lifestyle anyways.

I need to stop by the doctor's office to sometime this week to pick up a copy of the actual number results as they wouldn't tell me over the phone. The test on the order were put in number form without any explanations for my sake. When I looked them up on the diagnostic website I could find that two of the tests were IgG and IgA but there wasn't a match for the number of the other test that was ordered so I really have no idea what that was.

I'm in that dangerous time zone now where the insurance company has historically not covered medical bills and my skin issues are starting to clear up from taking niacin(this has been shown to improve DH but I was taking niacin doses before in an effort to sleep when I first noticed this Open Original Shared Link) so what I'll do is focus on getting a job and to get health insurance through work instead of a dependent on my parents' insurance through college and I'll get a biopsy done on the skin issues since that sounds like the fastest, most tolerable way to get a diagnosis. I couldn't stand to eat gluten daily for 6 months.