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I Think I Might Have Celiac. The Doctor Didn't Give Me The Test I Wanted.

milly85

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milly85 Newbie
milly85
Posted

This is a extremely embarrassing for me, it has taken me ages to see a doctor, so I hope people here are understanding. I have been going through a very embarrassing stomach problem since I was very young. I have only recently gone to the doctors about it because it is getting unbearably embarrassing and also very uncomfortable. My problem is, wind and constipation.

About two months ago I was feeling weak I decided to go to accidents and emergency. They took blood tests and did an abdominal scan only to find I was constipated as well as impacted. That provied I wasn

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ravenwoodglass Mentor
ravenwoodglass
Posted

If a doctor defined diagnosis is not something you feel you need you could simply try the diet strictly for a bit and see if it helps. It would be a good idea to also avoid dairy at first as you may not be able to digest it well until you heal. You could also go with Enterolab testing for antibodies as a part of the diagostic process, they can be ordered on line, and you can be gluten free when you do the tests as long as it isn't too long after you stop the gluten.

milly85 Newbie
milly85
Posted
  • Author
If a doctor defined diagnosis is not something you feel you need you could simply try the diet strictly for a bit and see if it helps. It would be a good idea to also avoid dairy at first as you may not be able to digest it well until you heal. You could also go with Enterolab testing for antibodies as a part of the diagostic process, they can be ordered on line, and you can be gluten free when you do the tests as long as it isn't too long after you stop the gluten.

I don't mind trying. It's just I don't know where to start. Most of the foods I eat contain wheat anyway. I am trying to best to avoid milk, it helps hugely. I feel better but my symtoms are not gone. I do have an appointment coming up in the gastrocolotomy department and I was wondering if these are the people to speak to and ask about the celiac test or the antibodies test. Or should I ask my doctor. My appointment is on the 9th of November by the way. Shall I continue eating gluten for now?

ravenwoodglass Mentor
ravenwoodglass
Posted
I don't mind trying. It's just I don't know where to start. Most of the foods I eat contain wheat anyway. I am trying to best to avoid milk, it helps hugely. I feel better but my symtoms are not gone. I do have an appointment coming up in the gastrocolotomy department and I was wondering if these are the people to speak to and ask about the celiac test or the antibodies test. Or should I ask my doctor. My appointment is on the 9th of November by the way. Shall I continue eating gluten for now?

Yes continue eating gluten until you are done with all testing. The GI doctors are the people to speak to about testing. They will do blood testing and possibly an endoscopy. You may want to call the office and speak to a nurse now and ask if the doctor can order a full celiac panel for you. Tell them you strongly suspect that this is the problem and that you have been diagnosed with anemia. Anemia is something that is often found in us. That way they will have the report from the blood work the day of your appointment.

milly85 Newbie
milly85
Posted
  • Author
Yes continue eating gluten until you are done with all testing. The GI doctors are the people to speak to about testing. They will do blood testing and possibly an endoscopy. You may want to call the office and speak to a nurse now and ask if the doctor can order a full celiac panel for you. Tell them you strongly suspect that this is the problem and that you have been diagnosed with anemia. Anemia is something that is often found in us. That way they will have the report from the blood work the day of your appointment.

The blood results are kept on the system so I know they'd have access to it since they were done in the same hospital. But I am going to collect another copy from my doctor just to see what it says. But November 9 is a long time to wait. And then I'd have to wait an extra few months for an endoscopy as well. NHS is good, but the waiting list is very long. I might have to go private. I'm not sure if the animia is actually related to my stomouch, I recently had two to three urine samples checked over the past four months because I keep getting UTIs, and it showed I was bleeding from there (I couldn't see the blood though).

Thank you for answering my questions ravenwoodglass.

mushroom Proficient
mushroom
Posted

UTI's seem to be more common and frequent in celiacs, and microscopic blood is a common feature of a UTI.

I do think it would be a good idea to get a copy of your results and post them and the normal ranges on here so we can see what they actually tested.

milly85 Newbie
milly85
Posted
  • Author

Hi mushroom, thank you for answering my question. I just went to collect my blood test results, and it says a huge load of things. But the main one from which they said I had folic acid deficiency animia is this:

Red blood cell folate 198 ng/mL Low

I don't know how to interpret these results. All I can say is that my anemia is probably not so bad, it doesn't prevent me from doing my usual things.

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mushroom Proficient
mushroom
Posted
Hi mushroom, thank you for answering my question. I just went to collect my blood test results, and it says a huge load of things. But the main one from which they said I had folic acid deficiency animia is this:

Red blood cell folate 198 ng/mL Low

I don't know how to interpret these results. All I can say is that my anemia is probably not so bad, it doesn't prevent me from doing my usual things.

I was thinking more along the lines of what other tests they did, Milly. Whether there was anything like IGA, EMA, or IGg, any of the celiac tests. If you have not had any of these done, you should have them toute suite. Did they test Vitamin D level, B12, etc?

milly85 Newbie
milly85
Posted
  • Author
I was thinking more along the lines of what other tests they did, Milly. Whether there was anything like IGA, EMA, or IGg, any of the celiac tests. If you have not had any of these done, you should have them toute suite. Did they test Vitamin D level, B12, etc?

Sorry, yes. It says B12 but that seems normal. (Serum vitamin B12 260pg/ml)

I can't see anything like IGA or EMA or IGG on the results.

ravenwoodglass Mentor
ravenwoodglass
Posted
Sorry, yes. It says B12 but that seems normal. (Serum vitamin B12 260pg/ml)

I can't see anything like IGA or EMA or IGG on the results.

260 is barely over the lower 'normal' lower limit for B12. It is very common for celiacs to be low in B12 because the area damaged by celiac helps us absorb it from our food or supplements. Have you had other B12 tests run before? I would be willing to bet that they show a steady drop over time. I could of course be wrong about that. When you are done testing you should definately give the diet a good try and it wouldn't be a bad idea to get some sublingual B12 to supplement with for a while.

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