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TellyMonster

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TellyMonster Newbie
TellyMonster
Posted

Hello -- I'm new here and I'm looking for some input. I would really appreciate any advice that members have to offer.

I just found out that I will be having a scope in 3 weeks to investigate reflux and check for any damage that might be related to gluten.

I had a blood test last July; TTG came back at 13, gliadin IgG at 5 and gliadin IgA at 4 (with greater than 20 being borderline and greater than 25 being positive).

I have some family history of celiac disease & family history of several conditions that can be associated with it.

All my life I've had digestive problems, GI pain, problems with multiple foods; symptoms of both allergy and intolerance.

I have not had any weight loss or any classic presentation that screams celiac disease, but I do have a multitude of problems that do fit with it or can be linked or associated with it. Including what might possibly be dermatitis herpetiformis on my scalp. In fact, the more I learn, the more connections I find and sometimes it seems like all roads are leading back to the same place.

I eliminated gluten (incl. oats) in mid-November 08, so I have been gluten-free for a little over 3 full months. I have seen some improvement with this diet, in addition to eliminating other food allergens. But there are still problems.

My regular doctor believes that the negative-range result doesn't need any further investigation and can be dismissed. I saw another doctor for something else and he is the one sending my for the scope, but since I have only 3 weeks to prepare I am trying to find out if that is enough time to be back on gluten.

The info out there seems conflicted, some sources appear to say that this is enough time, others say you need at least 4-6 weeks or 6-8 weeks.

I am not sure it is worth doing if it will not or might not make any difference, as I am now more or less adjusted to the diet and feeling somewhat better.

Any thoughts?

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Tallforagirl Rookie
Tallforagirl
Posted
...I saw another doctor for something else and he is the one sending my for the scope, but since I have only 3 weeks to prepare I am trying to find out if that is enough time to be back on gluten.

The info out there seems conflicted, some sources appear to say that this is enough time, others say you need at least 4-6 weeks or 6-8 weeks.

I am not sure it is worth doing if it will not or might not make any difference, as I am now more or less adjusted to the diet and feeling somewhat better.

Any thoughts?

There doesn't seem to be a complete consensus on how long/how much constitutes gluten challenge, but most sources seem to say 6 weeks to 3 months, four slices of bread or equivalent daily. If you're going to do the scope anyway, it might be worth putting it back a bit and giving yourself at least six weeks back on a gluten-heavy diet.

You didn't say whether your total IGA was measured when your blood tests were taken. If your IGA was lower than normal range, this would make the tTG IGA and the anti-gliadin IGA results inaccurate. Not all celiacs test positive with blood tests so even though your tests were inconclusive if you still have symptoms that point to celiac disease it's worth further investigation. Try to keep an open mind that it may not be celiac disease though.

Are they taking biopsies to check for celiac disease when they do your scope or is a just a look-see? You would need to have biopsies taken for them to be able to properly check for villi damage. Sometimes they can see signs of celiac disease just by looking through the scope, but not always, and it needs to be confirmed by looking at biopsies under microscope. At least four random biopsies should be taken.

TellyMonster Newbie
TellyMonster
Posted
  • Author
You didn't say whether your total IGA was measured when your blood tests were taken. If your IGA was lower than normal range, this would make the tTG IGA and the anti-gliadin IGA results inaccurate. Not all celiacs test positive with blood tests so even though your tests were inconclusive if you still have symptoms that point to celiac disease it's worth further investigation. Try to keep an open mind that it may not be celiac disease though.

Are they taking biopsies to check for celiac disease when they do your scope or is a just a look-see? You would need to have biopsies taken for them to be able to properly check for villi damage. Sometimes they can see signs of celiac disease just by looking through the scope, but not always, and it needs to be confirmed by looking at biopsies under microscope. At least four random biopsies should be taken.

Hi Tallforagirl, and thank you.

My total IgA was not measured, the only results I received were the three I listed above. So there is yet another potential source of ambiguity.

I have decided to go back on gluten until the scope, if it makes a difference then I will take that as a bonus. If not, I suppose I will be left wondering some more because I won't know if it is clean because of the gluten-free diet or becuase it was never damaged in the first place!

I actually had my blood tested with the aim of ruling it out once and for all. But it hasn't turned out to be so simple! I am looking for an answer, but I will accept whatever it might be -- anything just to get on the road to feeling good.

I am not sure if they will be taking samples. I will insist that they do, if they are going to be in there already. I am dealing with gallbladder problems at the moment and consulted with a surgeon earlier in the week. When I told him about some of the problems I have been experiencing, and my family history, he booked me in for the scope to check things out.

At least it is a step forward after fighting with doctors and trying for so long to get them to listen.

Tallforagirl Rookie
Tallforagirl
Posted
Hi Tallforagirl, and thank you...At least it is a step forward after fighting with doctors and trying for so long to get them to listen.

Good luck with the scope, I hope you get some answers.

ang1e0251 Contributor
ang1e0251
Posted

I just wanted to add that even if your scope shows no damage there is still a chance that you are gluten intolerant. That will not show on any test. If you feel that is true and you felt healthier when gluten-free, you can go back to the diet after your testing. You do not need a dr to give you permission and it is not harmful for you to follow.

I'm sorry this is so ambiguous, that is the nature of celiac disease. And it's not true that all celiac patients are underweight. I think the percentage is about 1/3 overweight, like me. It's a sneaky thing, isn't it?

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