Biopsy Query

[wanderlust89]

Hey everyone, newbie here.

I was basically tested for Coeliac Disease a couple of months ago, due to extreme bloating which I've suffered from for several years now. The test came back positive, although it was noted as a weak positive. Intially I was a little disheartenened at the prospect of having Coeliac disease, but also relieved, due to finally having found the source of the frustrating issues I experienced for so long. Now the next step was to have an endoscopy, which I had a month or so ago. I recieved the results recently and it all came back normal. Now I'm at a bit of loss at to what I should do and what this all means? Do I have Coeliac Disease or not. My GP will be contacting me soon on this issue and what I should expect next, but in the mean time can anyone shed some light on this matter? I'd appreciate it greatly.

[hexon]

Hey everyone, newbie here.

I was basically tested for Coeliac Disease a couple of months ago, due to extreme bloating which I've suffered from for several years now. The test came back positive, although it was noted as a weak positive. Intially I was a little disheartenened at the prospect of having Coeliac disease, but also relieved, due to finally having found the source of the frustrating issues I experienced for so long. Now the next step was to have an endoscopy, which I had a month or so ago. I recieved the results recently and it all came back normal. Now I'm at a bit of loss at to what I should do and what this all means? Do I have Coeliac Disease or not. My GP will be contacting me soon on this issue and what I should expect next, but in the mean time can anyone shed some light on this matter? I'd appreciate it greatly.

You may want to consider getting the gene test done. There's been recent debate as to why the endoscopy shouldn't be the gold standard for celiac diagnosis. Currently they are trying to convince physicians that any 4 out of the 5 indicators should be enough for diagnosis: celiac symptoms, positive blood test, positive endoscopy, gene test, and disappearance of symptoms after eating gluten-free.

[pain*in*my*gut]

Hey everyone, newbie here.

I was basically tested for Coeliac Disease a couple of months ago, due to extreme bloating which I've suffered from for several years now. The test came back positive, although it was noted as a weak positive. Intially I was a little disheartenened at the prospect of having Coeliac disease, but also relieved, due to finally having found the source of the frustrating issues I experienced for so long. Now the next step was to have an endoscopy, which I had a month or so ago. I recieved the results recently and it all came back normal. Now I'm at a bit of loss at to what I should do and what this all means? Do I have Coeliac Disease or not. My GP will be contacting me soon on this issue and what I should expect next, but in the mean time can anyone shed some light on this matter? I'd appreciate it greatly.

Which blood tests came back "weakly positive"? If it was the EMA or DGP, those are pretty specific for Celiac.

[wanderlust89]

You may want to consider getting the gene test done. There's been recent debate as to why the endoscopy shouldn't be the gold standard for celiac diagnosis. Currently they are trying to convince physicians that any 4 out of the 5 indicators should be enough for diagnosis: celiac symptoms, positive blood test, positive endoscopy, gene test, and disappearance of symptoms after eating gluten-free.

Thanks for the prompt reply.

What would be the process in carrying out a gene test?

I was also wondering whether fasting would have an impact on the endooscopy results, even if it is the standard procedure?

[wanderlust89]

Which blood tests came back "weakly positive"? If it was the EMA or DGP, those are pretty specific for Celiac.

I'm not certain, I was just told the results.

I did however, hear back from my GP today, and have been told that I'll be reffered to a gastroenterologist. In the mean time, I'm not sure whether I should go on a gluten-free diet, or wait untill I see the specialist?

[mushroom]

Yoou really should get a copy of your results for your own file, and keep involved in your medical care. Who knows what the doctor means by "weakly" positive? As I commented once before on here, if your results are in the negative range they don't hesitate to tell you you are negative, buit if you have just ticked over into the positive range you are "weakly" positive, or borderline or some other such weasel word. In my book, a positive is a positive.

If you have had a negative scope, the only reason to continue eating gluten is if there is a possibility of the new GI performing a second scope (I presume the first one was done by another GI??? If there is a possibility of another scope in your future you should continue a full gluten diet until then. Biopsy results often depend on the skil of the doctor, the number of samples he takes, and the skill of the pathologist in interpreting. You should also, while you're about it, get a copy of your biopsy report.

[wanderlust89]

Yoou really should get a copy of your results for your own file, and keep involved in your medical care. Who knows what the doctor means by "weakly" positive? As I commented once before on here, if your results are in the negative range they don't hesitate to tell you you are negative, buit if you have just ticked over into the positive range you are "weakly" positive, or borderline or some other such weasel word. In my book, a positive is a positive.

If you have had a negative scope, the only reason to continue eating gluten is if there is a possibility of the new GI performing a second scope (I presume the first one was done by another GI??? If there is a possibility of another scope in your future you should continue a full gluten diet until then. Biopsy results often depend on the skil of the doctor, the number of samples he takes, and the skill of the pathologist in interpreting. You should also, while you're about it, get a copy of your biopsy report.

Thanks for the reply.

Next time I pop in to see my GP, I'll ask for a copy of the report. The doctor that I previousy saw regarding the blood results, did advice me that I would need to go on a gluten free diet, but that it would have to wait until I had the biospy and undergone the rest of the required procedures. The first endoscopy was carried out by a specialist nurse I presume, but I have now been referred to a GI by my GP.

I've decided to go on a gluten free diet for a couple of weeks, just to see if I notice any difference in my symptomes. It's been almost a week since I began the diet, and I'm still as bloated as I ever was. Was I just too optimistic in hoping that I would see the progress, or does it in fact take alot longer to see some positive results? A friend also suggested that digestive enzymes supplements would be a good idea in terms of effectiveness. Would this be an option to consider, and if so which brand would be recommended?

[mushroom]

I have never heard of a nurse performing an endoscopy, but I suppose anything is possible However, if you have been referred to a GI I would not give up eating gluten just yet in case he wants to perform the procedure himself. Often the endoscopy results depend on the skill of the practitioner and the pathologist, whether enough samples are taken, from the right places. One week gluten free will not make much difference, but two or more weeks and you can affect the test results, and then you would have to go back on gluten for 2-3 months for an accurate result because you will have started to heal.

Once you have finished all testing and gone on the diet, supplements of probiotics and digestive enzymes are often very effective in helping the gut heal and digest your food. I still take them whenever I have a course of antibiotics. Yes, when you go gluten free you often feel perhaps a bit worse before you start to feel better, and you tend to go through a withdrawal from gluten as well - it is an addictive substance.

[wanderlust89]

I have never heard of a nurse performing an endoscopy, but I suppose anything is possible However, if you have been referred to a GI I would not give up eating gluten just yet in case he wants to perform the procedure himself. Often the endoscopy results depend on the skill of the practitioner and the pathologist, whether enough samples are taken, from the right places. One week gluten free will not make much difference, but two or more weeks and you can affect the test results, and then you would have to go back on gluten for 2-3 months for an accurate result because you will have started to heal.

Once you have finished all testing and gone on the diet, supplements of probiotics and digestive enzymes are often very effective in helping the gut heal and digest your food. I still take them whenever I have a course of antibiotics. Yes, when you go gluten free you often feel perhaps a bit worse before you start to feel better, and you tend to go through a withdrawal from gluten as well - it is an addictive substance.

I'm pretty certain she was a specialist nurse.

I decided to stick with the gluten-free diet plan since my last post, as I was fed up with the constant bloating, and wanted to see some results. Since then, there has been no change whatsoever. I still bloat everythime I ingest something, whether that be a glass of water or even a small biscuit. I also saw my GI, and had a discussion on what the next step should be. Now, he suggested that it's probably likely that I don't have Celiac Disease, considering the biopsy was normal, even though my blood test was a weak-positive, and I no longer have to continue with the diet. Now I'm slightly confused by this. Surely if the blood test was weakly positive, it still indicates an intolerance towards gluten, so what do I do?

He's also booked me in for an ultrasound and colonoscopy, for a more fitting and better diagnosis.

[Cara in Boston]

If your blood test was positive and your biopsy negative, it could just mean that there is not enough measurable damage yet (or they didn't biopsy the exact location of the damage - it can be patchy and easily missed). No reason to wait for damage. If they are looking into other reasons for your symptoms, going gluten free now should not affect that. You have to give it some time - more than just a week, and you have to be 100% sure everything you put in your mouth is gluten free. I couldn't really tell if I was feeling better or not, but tracking my symptoms really seemed to help. I wrote everything down on a calendar (GI issues, energy level, headaches, etc.) and sure enough, week after week there was less and less on the calendar.

Cara

[mushroom]

I think you should continue with the gluten free diet for now. You need a good trial before you can say, positively, this is not working!! In fact, in the beginning you often feel worse as you go through gluten withdrawal. As Cara says, keep track of your syptoms and also double checking everything you are eating, be extra strict about not using contaminated cookware, check all your toiletries and personal care products, medications (Rx and OTC) for gluten. Do you live in a household where someone else is eating gluten, because you could still be getting cross-contamination? It is sneaky and you have to get rid of it all.