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Waiting Forever For Test Results

3 posts in this topic


I have had terrible, debilitating stomach problems for a couple of years now. I've had loads of blood tests. One turned up that i have Pernicious Anaemia, and the doc said I would feel fine once I started B12 shots and Folic Acid pills. I've been getting steadily worse - both stomach related and general health.

Eventually my doc referred me to the GI unit at the local hospital. I had blood tests taken - for what I don't know. Brittish health care may be free, but it's not the best. I waited at least two months for the blood results, and actually never got them - but I did get called in for an endoscopy. I wasn't worried until I was informed, once I had the tube down my throat, that they were taking a biospy. It's hard to ask questions under these circumstances. I went to my doctor for my results - surprise surprise - they weren't in. I did manage to find out there was an anti-body for celiac found in my blood terst. Should I assume I have celiac disease until the doctors finally get their act together, or is there a good chance I don't have it?

All I know is that I feel really ill, and also have a blistering rash which could be that DH.

Any advice on how to cope with the uncertainty would be really great. I can't get my head round going gluten free until I have a diagnosos. I don't know how I'll manage even if I do have it - also if I don't have celiac, what else could they be analysing a biopsy for?

Hope that wasn't too rambling - thanks in advance for any advice or help.



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Sorry to hear you have to wait so long. It's so hard not knowing. however, if you have already had the blood work done, and you have had the biopsy done, there is no harm in strating the gluten-free diet and seeing if you notice any difference. You may know before the Dr gets back to you just based on your symptoms. I notice improvements within about a week after going gluten-free. youmay be suprised how well you will feel.

Hope all goes well



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They should have told you ahead of time that they might be taking a biopsy. This would have been less stressful for you. I was asleep for my endoscopy, so I wouldn't have known anyhow, but the first time the doctor did not biopsy, and the second time I made sure she was going to biopsy.

If your blood test was positive for antibodies and you already had the biopsy done, then Laura is right, you should try the diet. It won't hurt you, and it may just be the answer to all your problems. It is not easy, but you could just tell yourself that you are just going to try it for a week or two and then it won't feel too bad. If you feel better then it will be easier to stick with it.

I would also try calling the doctor everyday for the results. Eventually they will have to give them to you. Sometimes the results are there, but until the doctor looks at them they just keep telling you that they don't have them yet. So bugging them daily may just put enough pressure on the doc to look at the tests. Good luck.

Looking forward to hearing the results or whether you are going to try the diet or not.

God bless,

Mariann :)


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    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
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    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
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