Blood Test Negative For Gene Terrified Of Endoscopy

[clairelouise]

Since I was little I would break out in severe eczema and for years we went to doctors and specialists who said the eczema would pass when I was a teenager. Unfortunately I'm 20 and I still break out severely. About three years ago I was rushed to emergency at lunchtime because I was crippled with pain, the emergency room doctor asked what I had for lunch and when I replied "All I've had is a roll" he suggested that I may be allergic to gluten. 

This isn't the first time I've felt these pain, mostly at home or they haven't been as severe but it's been happening for years and most doctors thought I was faking it to get out of school. We went to a doctor who assured my mother and I she would get to the bottom of this problem, that she would make sure she found out what was causing me so much pain. She had me go for a genetic blood test but when it came back negative she said "You know Claire, you can't fake these kind of things. You have to go to school.", and I wanted to cry on the ground. I couldn't believe how easily she gave up and thought I was faking this pain. My mother who was furious dragged me to several doctors who practically said the same thing. I confided in my history teacher how distressed I was, he was a celiac, who told me that the genetic test can come up negative. 

Mum dragged me to a specialist who said that the only way I can truly be sure is if I get an endoscopy which I was all for until he told me I had to eat gluten for 6 weeks. I'll note here that between being told I was probably allergic to gluten and finally going to the specialist I had cut all gluten from my diet for around 4 months and I was no longer breaking out in eczema or having such bad pains all the time. The thought of eating gluten for 6 weeks makes me cry, it's absolutely terrifying and a lot of my friends don't understand the pain I feel after eating even a regular cracker or taking a bite from bread. I was in my last year of High School and I couldn't be suffering so badly when I needed to study. The second I left I got a job in the city and I've been working my butt off for a year and a half.

've finally left the job due to a downfall in management and I'm feeling like maybe I should get the endoscopy as my intolerance is worse. I break out from using makeup or dishwashing liquid with gluten in it. Because it doesn't say I'm a celiac in my files, a lot of doctors don't take me seriously and prescribe me medication which I've been glutened from even after I told them I'm allergic. I also have no clue if my insides are healthy. I really need advice here, I'm so scared about what I should do. Plus I need to look for a new job but I'm currently a giant ball of eczema because mum made scones and I accidentally inhaled some regular flour.  

I'm sorry this was so long but I'm terrified and would really appreciate some advice.  

[BelleVie]

Hi clairelouise, welcome to the forum!  

 

It really sucks that you've had to go through so much pain and suffering, but hopefully you are now beginning to figure out some answers and are finding your way back onto a pathway that will lead you toward health. I'm sorry that your mom hasn't been so understanding. I am also from a family that finds it difficult to accept that people can be ill but still look okay on the outside, so I feel your pain. 

 

As far as the genetic test, you could very possibly be NCGI, and not celiac, but still be having horrible symptoms. Extreme symptoms don't necessarily indicate celiac. Some people with celiac have very mild symptoms from gluten, which some people with NCGI have extremely pronounced and intolerable symptoms. It just depends on the person. But either way, both intolerances are serious, and both require taking care of your body and mind by eating and living gluten free. 

 

Have you been completely gluten free for a while? Or are you doing mostly gluten free with some gluten here and there? If you have not cut gluten from your diet, an endoscopy would be likely (but not certain) to show damage in your small intestines. If it's the process itself you are worried about, seriously, don't worry at all! It is SUPER easy. You go in, get a shot, fall asleep, and it's over before you even know it began. You won't feel a thing. There is zero pain. And you get to take a really awesome nap. ;-) 

 

I'll reiterate what many of the more seasoned forum members have said many times before: you have to be your own advocate, and only YOU know, and can do what's best for, your body. If gluten makes you sick, it is your responsibility to advocate for yourself and make sure that you are eating gluten free. Even if you have the endoscopy and it comes back negative, gluten is likely still making you sick, according to your own observations about your reactions. 

 

If doctors refuse to give you gluten free medication without a diagnosis, I would try to find another doctor who is more compassionate and understanding. 

 

One more thought: have you been tested for actual gluten or wheat allergies? Your reactions do sound quite violent, something that I would expect to see more with a true allergy. 

 

Good luck, I hope you feel better soon! 

[BelleVie]

Ah, in re-reading your post, I see that you have been eating gluten free for some time, which means that an endoscopy might come up negative. But it might not. That's what is so frustrating about diagnosing celiac!! 

 

Honestly, I'll just repeat what I said, which is that you have to be your own best friend, your own advocate, and your own health guardian. If the soaps and makeups are making you sick, change them. Try to explain (and I know this is easier said than done!) the issues involved with cross contamination to your mom (I'm assuming you still live with your family?) and double, triple check everything that you eat to make sure it is safe. 

[clairelouise]

Hi clairelouise, welcome to the forum!

 

It really sucks that you've had to go through so much pain and suffering, but hopefully you are now beginning to figure out some answers and are finding your way back onto a pathway that will lead you toward health. I'm sorry that your mom hasn't been so understanding. I am also from a family that finds it difficult to accept that people can be ill but still look okay on the outside, so I feel your pain. 

 

As far as the genetic test, you could very possibly be NCGI, and not celiac, but still be having horrible symptoms. Extreme symptoms don't necessarily indicate celiac. Some people with celiac have very mild symptoms from gluten, which some people with NCGI have extremely pronounced and intolerable symptoms. It just depends on the person. But either way, both intolerances are serious, and both require taking care of your body and mind by eating and living gluten free. 

 

Have you been completely gluten free for a while? Or are you doing mostly gluten free with some gluten here and there? If you have not cut gluten from your diet, an endoscopy would be likely (but not certain) to show damage in your small intestines. If it's the process itself you are worried about, seriously, don't worry at all! It is SUPER easy. You go in, get a shot, fall asleep, and it's over before you even know it began. You won't feel a thing. There is zero pain. And you get to take a really awesome nap. ;-) 

 

I'll reiterate what many of the more seasoned forum members have said many times before: you have to be your own advocate, and only YOU know, and can do what's best for, your body. If gluten makes you sick, it is your responsibility to advocate for yourself and make sure that you are eating gluten free. Even if you have the endoscopy and it comes back negative, gluten is likely still making you sick, according to your own observations about your reactions. 

 

If doctors refuse to give you gluten free medication without a diagnosis, I would try to find another doctor who is more compassionate and understanding. 

 

One more thought: have you been tested for actual gluten or wheat allergies? Your reactions do sound quite violent, something that I would expect to see more with a true allergy. 

 

Good luck, I hope you feel better soon! 

 

Thank you so much for replying

I've always felt like my intolerance isn't something people care about because I'm not a celiac and it gives me a fair amount of stress. I've been completely gluten-free for 6 months now as I had some trouble with binge eating for a long time. Though the last month or two i've been reacting to even the slightest amount like shampoos or soaps. I'm worried that the binge I was on for about 10 months has left me with damage, not to mention from when I was younger. 

I've only been tested for celiac disease with a genetic blood test as I've been pretty much ignored or brushed off by other doctors. Is there are other things I can be tested for? I'm 100% certain I'm allergic but it would be nice to have it on file so I can relieve some stress when I'm going to the doctors for medication. 

[BelleVie]

Well you could get tested for wheat allergies, which would not require you eating gluten.  

[BelleVie]

The reason I think it could be an allergy (and I'm not a doctor, so I obviously don't know with any degree of certainty) is because you seem to be reacting really strongly to topical wheat/gluten. From what I understand, most celiacs will not react to gluten on the skin--it's only once it has been ingested that it causes problems. Anyway, it's worth checking out! 

 

It's such a shame that you aren't taken seriously without a clear diagnosis. Some more progressive/enlightened doctors will now diagnose NCGS. That may help, if they can put that in your medical files. 

[LauraB0927]

So sorry that you've gone through this much!  It definitely sounds like you've been through a lot and so many people on this forum feel your pain.  As far as the endoscopy goes, just as Belle said, its simple and there is no pain involved whatsoever.  You don't even realize that it was done - I've had two and I would take that ANY DAY over another colonoscopy.    But I understand that the gluten challenge is provoking anxiety for you.  

 

Silly question, have you ever tried taking a Benedryl or other anti-histamine medication when you break out from these topic exposures?  If so, what happened?  If you were having an allergic reaction, an anti-histamine would have provided you with at least some relief.  Keep in mind that you could potentially be ingesting the gluten from the shampoo/makeup by touching your mouth after handling the gluteny items.  

 

And you said that you had the genetic test for Celiac?  So you tested negative for either the DQ2 or DQ8 gene?  If that's correct, then its my understanding that you cannot develop Celiac disease if you do not have this gene.  (someone correct me if I'm wrong).  My gene was lovingly passed down from my mother (who does not have Celiac, lucky duck)  Regardless, like Belle said, you could still have NCGI and should still take that very seriously.  

 

Another thought that I had was that your eczema could be a well known symptom of Celiac called Dermatitis Herpetiformis (see that section of the forum).  A small skin biopsy (when the eczema is pronounced) can be done to test if you have Celiac.  This may limit the possibility of having to do a six week gluten challenge.  But remember, if that biopsy comes out negative, it could mean its just eczema and there still is a potential for Celiac.

 

Bottom line is that you feel better off of gluten, and you dont need anyone with a fancy medical degree to tell you that.  I know its hard to be taken seriously by doctors when its not in your file, but you could always get around that by talking to the pharmacist directly before the prescription is filled and saying that you are allergic to gluten - they will not check your medical file, trust me they will believe you, they just want to make sure they wont give you something that will kill you.  I told my pharmacist after she's known me and given me my medications for many years (I was only diagnosed a year and some change ago) and she didn't question it one bit.

 

Where are you from?  You could always head over to the "Doctor's" section of the forum and ask if anyone could recommend a GOOD doctor in your area.  Best wishes to you!!    

[frieze]

DQ2/8 do not account for 100% of celiacs, almost, but not all.

[LauraB0927]

DQ2/8 do not account for 100% of celiacs, almost, but not all.

 

Thanks!!!  Good to know!!