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Emilia

A slippery slope

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I’m new to this forum and I need all the help I can get because, as often seems to happen with celiac, my doctor downplays it massively.

I am 17 years old and have always struggled with diarrhoea, stomach aches that vary in intensity, bloating, heartburn etc etc. as well as vitamin D and calcium deficiency, low weight and so on. I got a 23andme DNA test for Christmas and found that I have the gene HLADQ2.5 gene and since I know my mother and grandfather have both suffered from the same issues as I do I thought I should get tested. I ate lots of gluten-filled foods in the week preceding the test and my stomach issues got worse and I ended up getting a terrible cold and feeling extremely tired. I got the blood test back online and I was gutted: my ttg Iga was only 0.3 and my total IGA was 2.3, completely within the normal range. I felt cheated as my doctor has just scribbled a note underneath: no further action necessary. 

I wondered if perhaps I was kidding myself and I don’t have celiac disease. Is it possible with the negative blood tests I still could have it?

Recently I have been eating raw vital wheat gluten flour to see what effect it has on me. I eat it with a spoon having stirred it in water every morning. I have experienced some serious bloating and constipation, fatigue and stomach aches but in a way I hope that it could somehow cause me to get celiac disease because that’s all I want my problem to be instead of something else more sinister. From my research, however, amount of gluten doesn’t seem to affect risk of celiac being triggered.

I am desperate for some advice or help on the matter as well as others who have experienced the same feelings as I have but have come out the other side. 

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19 minutes ago, Emilia said:

I’m new to this forum and I need all the help I can get because, as often seems to happen with celiac, my doctor downplays it massively.

I am 17 years old and have always struggled with diarrhoea, stomach aches that vary in intensity, bloating, heartburn etc etc. as well as vitamin D and calcium deficiency, low weight and so on. I got a 23andme DNA test for Christmas and found that I have the gene HLADQ2.5 gene and since I know my mother and grandfather have both suffered from the same issues as I do I thought I should get tested. I ate lots of gluten-filled foods in the week preceding the test and my stomach issues got worse and I ended up getting a terrible cold and feeling extremely tired. I got the blood test back online and I was gutted: my ttg Iga was only 0.3 and my total IGA was 2.3, completely within the normal range. I felt cheated as my doctor has just scribbled a note underneath: no further action necessary. 

I wondered if perhaps I was kidding myself and I don’t have celiac disease. Is it possible with the negative blood tests I still could have it?

Recently I have been eating raw vital wheat gluten flour to see what effect it has on me. I eat it with a spoon having stirred it in water every morning. I have experienced some serious bloating and constipation, fatigue and stomach aches but in a way I hope that it could somehow cause me to get celiac disease because that’s all I want my problem to be instead of something else more sinister. From my research, however, amount of gluten doesn’t seem to affect risk of celiac being triggered.

I am desperate for some advice or help on the matter as well as others who have experienced the same feelings as I have but have come out the other side. 

Were you eating gluten free and then before the week you ate gluten?  If so, that would not be enough gluten for an accurate test.

even if you don't have celiac, there is something going on.  You and your parents need to insist that a doctor addresses it.  There are lots of things it could be, many not sinister.  FODMAP issues are quite common and have all the stomach issues you have described.  

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We have had a few members test negative on the blood test but show positive on the biopsy. Keep eating it and push for a Endoscope with biopsy and perhaps a Colonoscopy. If both of these are negative you obviously are at least NCGS which is a condition we have members with and is still serious requiring a gluten free diet although not widely recognized by doctors.

Reason I suggest both scopes is other gastro issues like Ulcerative Colitis, Crohns, etc. Can have a gluten trigger in some people and ruling out everything and trying to find you a answer to your obvious issues is the goal.

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Hi Emilia,

You need to eat gluten every day for 3 to 4 weeks before the endoscopy, and every day for 12 weeks before the blood tests.

Your symptoms do sound like they could be caused by celiac disease, but they could be caused by another food intolerance issue too.  If you look at people's signatures under their posts you'll often see multiple food intolerances listed beyond just gluten.  There are also food allergies which can cause symptoms.

This link lists some common food allergens, but there are more than that.

https://acaai.org/allergies/types/food-allergy

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