GENOTYPE RESULTS & PALE SKIN

[SophieB333]

Hi guys,

I have recently kind of been diagnosed with Celiac. I say "kind of" because well the results are a bit blurry. I've had many issues over the years, and thought i had Chronic Fatigue Syndrome but recently i had the Genotype test done, and it picked up the below results. 

HLA-DQ2.5 - NOT DETECTED

HLA-DQ2.2 - NOT DETECTED

HLA-DQ7 - DETECTED

HLA-DQ8 - DETECTED

So, the DQ2.5 & DQ2.2 can only be detected if I were to have a gastroscopy and eat gluten for 4 weeks straight. I have always felt tired after eating gluten, so I said I just couldn't eat it for 4 straight weeks. I went away once and ate gluten almost each day, and gosh I felt horrible, fatigued, bloated etc. I just can't imagine eating it every day for 4 weeks for a test. I'd just like to know if anyone else has had results similar? 

My other question - do you experience pale skin the following day if you perhaps eat gluten? It's not my iron, I've already had an iron infusion the other month. I've found the past week I've been waking up and looking very pale, then I came to realise I've been eating this icypole every night that actually has wheat in it. So i didn't have it last night, woke up this morning looking more "normal colour". I also have been experiencing dandruff like issues sporadically. It's not like my head is itchy, its just like scabby and big flakes (gross i know).. but it's like a 'flare up' and it's happened again.. thought this could have all been to do with the delicious icy poles I've been demolishing each night! haha ... 

Thanks for any help.. just trying to find my way with the whole gluten free world. 

[Scott Adams]

Welcome to the forum!

The test results you shared are genetic test results, and for those tests it doesn't matter whether or not you are eating any gluten when you take them--your genes don't vary. In your case it looks like you do have some genetic markers that make getting celiac disease a possibility, but this alone does not mean that you have celiac disease, or will develop it, it only means that you are more likely to develop it than someone who doesn't have those genetic markers.

The tests used to determine whether or not you have celiac disease are blood tests and/or a biopsy, and it is those tests that require you to be eating gluten daily for at least 6 weeks:

Do you know if you ever had a blood test done that looks for blood antibodies for gliadin?

As for getting pale after eating gluten, this has been reported by some people, and is a common symptom when you get sick from many kinds of viruses or bugs.

 

[SophieB333]

Hi Scott,

Thank you for getting back to me so quickly. In regards to the blood tests I had, the doctor suggested these as I had previously had a gastroscopy with a different doctor 6 months or so prior, but we couldn't find anything because I wasn't eating enough gluten and I really didn't want to eat gluten every day for that long before the gastroscopy - so the specialist did warn me that the results may not be accurate. 

Instead of having another one, the new doctor I saw suggested we do the blood test (above) and those were the results. He then said it's highly likely I have celiac disease because not only were the above detected, but the idea of eating gluten for that long makes me sick, so he said I would assume you are celiac..so eat like a celiac and see how you feel. Mind you, I have always felt good on a gluten free diet, but I wasn't very strict. 

I would eat gluten free most days and then maybe every 2nd or 3rd day I might have a meal with some sort of sauce which contained gluten.. I just wasn't strict at all. I am being more strict now since these blood tests. 

This might all sound confusing - I apologise. It has been a confusing time seeing lots of different doctors. It all began many years ago because I had low iron, and had to have an iron infusion. At the time of the infusion, the nurse suggested I try a gluten-free diet, just because of my iron. I started this, and I noticed i just felt less bloated when i didnt eat gluten, but as I said, I was never super strict because celiac didnt come into play, until recently with this new doctor. A few doctors have suggested it's a possibility, but without eating gluten for a few weeks every day, they wouldn't be able to confirm it - and i dont want to eat it every day for that long. I just can't. I get so tired. 

I don't know if I have had a blood test that looks for Gliadin.. is that something usually a regular doctor would suggest?

Sorry for the long response. 

Oh Also, the tests below the doctor said were not detected because they can only be detected if it's in my body.. like if I'm eating gluten and I have a gastroscopy to find out.

HLA-DQ2.5 - NOT DETECTED

HLA-DQ2.2 - NOT DETECTED

[Scott Adams]

Hi Sophie,

Just so you know, you don't need positive markers on all of the genetic tests to have an increased risk for celiac disease. Some markers will increase your risk more, and not having some will decrease your risk a bit more, but having any of these markers really means that you could get full blown celiac disease at some point in your life.

The only way for you to know for sure would be to do a gluten challenge and get blood tests again:

But to me, it sounds like you already have a good idea of what the answer will be--it sounds like you have either gluten sensitivity or celiac disease, and the prescription for either is a 100% gluten-free diet for life. 

If you can stay on this dies without having a piece of paper that says you have celiac disease, then you likely don't need the official diagnosis, however, it sounds like you are still having a hard time being 100% gluten-free, so you'll need to decide whether or not to go through a gluten challenge.