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Dilemma! Advice Needed Please

Noodle

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Noodle Newbie
Noodle
Posted

Hi

I am still awaiting the results of a Celiac blood test taken 5 weeks ago (I am in the UK and they take ages!) my doctor told me that even if it comes back as negative she would like to arrange an endoscopy. My dilemma is this (and I am sure I am not the first to ask this!) I cant bear the thought of having to eat Gluten again for the test. In the UK you get referred for the Endoscopy and then you have to wait, could be a few weeks or a few months. I dont want to eat gluten again, especially not for an unknown amount of time. If the test is Positive why bother with the Endoscopy? and if it is negative - why bother?!

Can anyone share their views on this?

Thank you in advance, I have found this forum extremely helpful

T x

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Wolicki Enthusiast
Wolicki
Posted
Hi

I am still awaiting the results of a Celiac blood test taken 5 weeks ago (I am in the UK and they take ages!) my doctor told me that even if it comes back as negative she would like to arrange an endoscopy. My dilemma is this (and I am sure I am not the first to ask this!) I cant bear the thought of having to eat Gluten again for the test. In the UK you get referred for the Endoscopy and then you have to wait, could be a few weeks or a few months. I dont want to eat gluten again, especially not for an unknown amount of time. If the test is Positive why bother with the Endoscopy? and if it is negative - why bother?!

Can anyone share their views on this?

Thank you in advance, I have found this forum extremely helpful

T x

If you feel you dont need an "official" diagnosis, skip the tests and stay gluten-free if you feel better on the diet! If need a diagnosis-for instance to have your health plan cover your expenses, that's a different matter.

I had a positive blood test, started the diet, then went to see the GI. He said that he didn't think I have Celiacs, because we just did en endoscopy and he didnt see anything- he did an UPPER endoscopy of my stomach and esophogus! When I told him the diet had eliminated all my symptoms, he then wanted to do a bunch more tests. I told him to forget it!

The only thing that matters is if the diet works for you. You dont need an endoscopy to feel better, IMHO.

Noodle Newbie
Noodle
Posted
  • Author

Hi. Yes that was what I was hoping to do. Fortunately we don't have to have health cover or insurance in the UK but they usually insist on the Endoscopy. I read somewhere in a thread on this forum that there is a real threat of malignancies so that is why you should scope? I think I was a bit frightened by that.

I do feel better being gluten free but it has only been a few weeks I still experience stomach pain and more frequent bathroom trips (sorry TMI!) but I find now that spicy foods, soya and most of all eggs hurt me the most. Was eating eggs fine until about a month ago.....dont really understand why these would bother me so much now?

Finding it hard to adjust and frustrating as I am so scared to put anything in my mouth, feel sorry for my kids as I am not their fun Mum at the moment :(

Thanks for the advice. I am very grateful

T

Ahorsesoul Enthusiast
Ahorsesoul
Posted

When doctors want to to more testing I always ask what will they do differently after seeing the test results?

Gemini Experienced
Gemini
Posted
Hi. Yes that was what I was hoping to do. Fortunately we don't have to have health cover or insurance in the UK but they usually insist on the Endoscopy. I read somewhere in a thread on this forum that there is a real threat of malignancies so that is why you should scope? I think I was a bit frightened by that.

I do feel better being gluten free but it has only been a few weeks I still experience stomach pain and more frequent bathroom trips (sorry TMI!) but I find now that spicy foods, soya and most of all eggs hurt me the most. Was eating eggs fine until about a month ago.....dont really understand why these would bother me so much now?

Finding it hard to adjust and frustrating as I am so scared to put anything in my mouth, feel sorry for my kids as I am not their fun Mum at the moment :(

Thanks for the advice. I am very grateful

T

I wouldn't say there is a "real" threat of malignancy but there are those who would feel more comfortable if they have a picture of what their intestines look like.

Some need to see damage in order to stick to a gluten free diet. I think people need to do whatever makes them feel comfortable in obtaining a diagnosis but Celiacs should not fear having cancer any more than the general population. There is too much fear these days of that anyway. Most people do well on a strict gluten-free diet and recover just fine.

The reason you may notice more of a reaction to other foods is that once you cut out gluten, whatever additional intolerances/allergies you may have, come to the forefront. It's extremely common to have more than one food issue.....for many it's dairy. However, eggs and soy are high on the allergy spectrum so you may have to cut out more as you go along. Either that or you could request allergy testing on top of Celiac testing.

If you want to have the endo, then you could still cut out gluten for good and have the test done whenever they book it. Then it would be a matter of seeing how well you are healing and not necessarily to diagnose Celiac Disease. Let's face it, you're English so the odds of having Celiac Disease are way up there anyway. ;) It all depends on how important an official diagnosis is to you.

I was diagnosed via blood work and refused the endoscopy because I was so deathly ill, I couldn't face eating gluten for one more meal. Actually, I wasn't even eating at the time so I was getting desperate. I had an official diagnosis with the blood work and have done so well on the diet and with my recovery, I have not felt the need to be scoped. Good luck!

Noodle Newbie
Noodle
Posted
  • Author

Thanks Guys.

Very helpful and that would certainly explain the egg allergy. I guess spicy foods would set me off because they are irritants rather than allergens?

Why does being English make me more predisposed to Celiac?

Thankfully alcohol still remains pain free!!!!! my doc is treating me with proton pump inhibitors at the moment as she is wondering if it may be an ulcer instead but if it was surely alcohol would be impossible? Don't know whether to stop the drugs as they aren't making much of a difference.

Thanks for your input

T

Rondar2001 Apprentice
Rondar2001
Posted

One thing to consider with the endoscopy, your doctor may be looking for other things besides just celiac disease, especially in light of your other food issues.

I would confirm exactly what they might be considering before turning down the endoscopy.

Good luck and hope it goes well for you.

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ang1e0251 Contributor
ang1e0251
Posted

I believe the reference to cancers was given to a person with a family history of cancer. If you don't have that history, I wouldn't worry about that aspect of it.

I also would ask the dr's reasoning behind the test. Maybe there is something he's looking for that you didn't consider.

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